Hello all! Wanted to update on our latest week of therapy. It's no secret I wasn't super excited to go the week before 10 people would be staying at my house for Thanksgiving, but of course I'm glad we went! I have to start by saying how fortunate we are to live so close to this facility. The other 'feeding family' there was from Chicago and had to make the most of their 2 weeks before going home. We actually just had 4 days of therapy and will do that again in March. Otherwise Polly is booked until next July. Well I'm having a baby in June, so there's no way I'm waiting to get this kid eating! We hope to start really weaning him from the tube in March.
So our big issues coming into therapy this time was bite sizes (miniscule) and getting him to chew soft food instead of just letting it dissolve or trying top swallow it wole and gagging. First, after noting his weight is soooo good (for the first time ever), we cut down on his tube feeds almost by half. Then pretty much Polly asked him to open his mouth bigger and he just did. Honestly, I'd given up at home. If he took one open mouthed bite of something, I was pretty darn happy for the whole day. Now, he can finish 4 ounces of yogurt in about 20 min. This has actually changed our lives. There is a big difference between 20 min 6x a day, and 45 min 6x a day. Especially when in those 45 min, you're lucky to get an ounce of anything in him.
Then we started work with getting him to take the food in his mouth and move it to his molars to crunch it. You could really see how incredibly hard it was for him to do, but it continues to get easier every day. I really have to coach him through every step. Sometimes I'm staring at him so hard he starts to laugh. Woops! Lol
Crunchy stuff is much easier for him to chew, or anything that makes a sound. But its all about how you approach him. I think training horses has given me pretty good insight in dealing with this (thanks mom and dad). With horses you have to figure out how to get them to do something in a way they understand and also so they can be rewarded in a way they appreciate it. Pretty similar to kids. I got James to chew fruit snacks by getting him interested in how it was sticky on his teeth. Then I finally (finally) got him to stop swallowing whole pieces of pasta, avocado, banana, etc (slippery things), by asking him to spit it out first. I think he. Wasn't sure how to manipulate those sorts of things in his mouth. Course, its still hit or miss. Today he gagged on banana and puked all over. But he did come back and eat more and chew it a little more carefully. Smart kid.
So everything was very successful and encouraging. We came home to a ridiculously fun and wild Thanksgiving where, yet again, I miss out on all the good wine. Psht. Shoulda planned this better. James is napping better and sort of sleeping better. Since changing out the button he is not in so much discomfort, but he still wakes up several times a night. I figure I'll deal with it more after Christmas. One thing at a time. Or, rather, 180 things at a time, but I'm at 180, so sleep will just have to wait. :)
Friday, December 3, 2010
Sunday, November 7, 2010
Update a long time coming ---
So I have a lot of catching up to do. I'm just gonna go for it as a quick catch up and then we'll see how i keep up!
James is doing well. He is over 25 Lbs now and that is amazing to see. He talks nonstop and is starting to reason things out, which is a blessing and a curse. :) he still sleeps like crap, but his gtube pretty much bothers him all the time so that can't help. It's a work in progress, like so many things. Over the past couple of months he has lost a bit of interest in pureed stuff, which was to be expected. The key was getting him onto chewing real food before that happened. And we are well on our way. He still does not really chew with his teeth, but mashes with his tongue. Its not because he doesn't understand, but because he is still very tentative about the placement of the food and what happens to it once it is in his mouth. He'd prefer it not to change properties on him. :) But if i dice up fruit into tiny pieces, or cut overcooked pasta and potatoes, he will actually swallow. He has a higher tendency to gag at the texture, so you really have to coach him through it and make sure the pieces are small and the food item is something doable. ITs always a bummer when mom miscalculates. We will go back to KCRC the week before Thanksgiving to cut back on the tube feeds more and work on eating some new stuff. We've pretty much been working from home for a while now and it seems to have been very successful. The process doesn't leave time for much else, but we are muddling through and looking forward to the day when we make dinner and everyone just sits down and eats what they need. I'm not sure what that'll be like, but I imagine it's pretty good!
James is doing well. He is over 25 Lbs now and that is amazing to see. He talks nonstop and is starting to reason things out, which is a blessing and a curse. :) he still sleeps like crap, but his gtube pretty much bothers him all the time so that can't help. It's a work in progress, like so many things. Over the past couple of months he has lost a bit of interest in pureed stuff, which was to be expected. The key was getting him onto chewing real food before that happened. And we are well on our way. He still does not really chew with his teeth, but mashes with his tongue. Its not because he doesn't understand, but because he is still very tentative about the placement of the food and what happens to it once it is in his mouth. He'd prefer it not to change properties on him. :) But if i dice up fruit into tiny pieces, or cut overcooked pasta and potatoes, he will actually swallow. He has a higher tendency to gag at the texture, so you really have to coach him through it and make sure the pieces are small and the food item is something doable. ITs always a bummer when mom miscalculates. We will go back to KCRC the week before Thanksgiving to cut back on the tube feeds more and work on eating some new stuff. We've pretty much been working from home for a while now and it seems to have been very successful. The process doesn't leave time for much else, but we are muddling through and looking forward to the day when we make dinner and everyone just sits down and eats what they need. I'm not sure what that'll be like, but I imagine it's pretty good!
Tuesday, August 31, 2010
Scars
Well, I have a ton of 'em. Most significantly are my knee from a canoeing incident and Jake throwing me into a water jump, a pretty good one from the c-section, several oven burns (I'm not sure why I forget it's hot), and two really great ones from the external fixater I had to hold my wrist together. They really don't bother me at all, although once a three year old told me I could cover them up with makeup if I wanted. Thanks. But I have to say, each scar was completely self inflicted, if indirectly. Probably drinking while floating down a river and deciding to 'try the rapids' wasn't super smart. Clearly burning yourself repeatedly on the oven is something only I can manage. You have to imagine that if you ride racehorses for a few years or try jumping horses off of embankments into water, you might come away with a scar or two. And as for the c-section, well, I did get pregnant on purpose, despite the jokes.
But I was looking at James the other day (well, like, every day, but particularly the other day) and I looked at the scars on his arm from the PICC line, and what is going to be a doozey on his stomach someday. It made me a little sad that he'll always carry those scars; I'm not even sure why it made me a little sad, but it just did. I guess cause he didn't have a choice in any of it, and certainly didn't have any fun in the process! I did meet a little girl at the hospital who had cystic fibrosis and she showed me her gtube scar. It totally looked like a bullet scar (or what I suppose one would look like in real life). Her mom told me that when she got it taken out, she walked up to a stranger in the park, lifted her shirt and said, "My daddy SHOT me!!" HA! Think of something to say to that! As long as we all keep our sense of humor...
But I was looking at James the other day (well, like, every day, but particularly the other day) and I looked at the scars on his arm from the PICC line, and what is going to be a doozey on his stomach someday. It made me a little sad that he'll always carry those scars; I'm not even sure why it made me a little sad, but it just did. I guess cause he didn't have a choice in any of it, and certainly didn't have any fun in the process! I did meet a little girl at the hospital who had cystic fibrosis and she showed me her gtube scar. It totally looked like a bullet scar (or what I suppose one would look like in real life). Her mom told me that when she got it taken out, she walked up to a stranger in the park, lifted her shirt and said, "My daddy SHOT me!!" HA! Think of something to say to that! As long as we all keep our sense of humor...
Saturday, August 14, 2010
You're in a chair. In the sky!!
It's very easy to forget that one month ago, James ate nothing. As in...nothing. Now he eats all sorts of purees, including some pasta with bolognese sauce, chicken dumpling soup, and lots of ice cream. He chooses to munch on Cheerios and cookies. Yet I catch myself getting frustrated sometimes (lots of times) when James gets distracted or takes the world's smallest bites (ever). I mean honestly, he only opens his lips. It takes over a half hour to finish a container of yogurt and could take hours to finish 4 ounces of something new (usually if he eats an ounce or so of something new, I'm pretty happy---and it's not cause he refuses it, it's just that it takes FOREVER). It is still enjoyable and rewarding because he is actually eating. And I spent almost a year making food 3x a day that maybe got poked by a finger. So I love making him something new or making homemade ice cream or adding butter to something and actually feeding it to him. But still, sometimes I do want to scream, "OPEN YOUR MOUTH!" lol It wouldn't work, so I just scream in my head. But then remember----how can I possibly get frustrated with this kid?? He. Is. Eating. And I know I wish it was over, but it's not. And it's not going to be for, you know, a while. 
So I have to take what comes and enjoy what is happening right now, and remember all those other crappy months and think about how great this one was!
The following link was posted by my cousin a while back. There used to be a better version, but I can't find it. Still, it was recently brought back to my attention and it does put things in perspective!
http://www.youtube.com/watch?v=8r1CZTLk-Gk
So I have to take what comes and enjoy what is happening right now, and remember all those other crappy months and think about how great this one was!The following link was posted by my cousin a while back. There used to be a better version, but I can't find it. Still, it was recently brought back to my attention and it does put things in perspective!
http://www.youtube.com/watch?v=8r1CZTLk-Gk
Wednesday, August 4, 2010
an eclectic post to catch up
Probably no one is even following this anymore, since I blog so infrequently. But it's not that I don't think about it, I just feel mildly guilty (mildly) for letting Mickey Mouse babysit so I can get on the computer. Especially since Mickey Mouse also feeds my child. But really, he's pretty good.
To catch up though, James is doing very well. He is still eating yogurt and pudding, but has started to eat some sweet potatoes with tons of butter and some other Tyler Florence baby foods. He is no longer making awful faces and shuddering when they go in his mouth, so that's great, but it could take hours to get 4 ounces of something new in him. He takes the smallest bites ever. I have discovered the straw bowl so once ice cream melts or yogurt and pudding turns to liquid (which happens in approximately 15 min, just so you know), he can drink through the straw. I think he gets a kick out of it. I know lots of other bystanders do. I carry it with me to restaurants. I don't know why it works better than a cup, it just does. Maybe because he can see exactly what it is and it makes him feel more comfortable.
We had a checkup with the GI doctors 2 weeks ago and it went really well. He is regaining some of the weight he lost at KCRC and the subsequent illness and looks great. He was showing off like crazy. While we were there we went to visit our old nurses. It's an interesting experience to do that. I had a moment where I thought, 'these people see so many kids come through here, I'll kind of feel like a dork if they don't remember us very well.' Non issue. A few of our favorites were there (sadly not all of them) and we spent a long time chatting and catching up. They were pretty happy to see James looking so good and talking about everything, of course. :) I spent most of the time talking to Donna, who was one of our most regular nurses. She's very good at her job and fun to be around. She was saying how they love when kids come back to visit and stay in touch, but some people never want to walk back into that area of the hospital. But you know, I spent every day and night with these people for a loooooong time. I'm sure I drove them crazy at times, but you do form a bond that is very special. I will always be so grateful to each and every person that helped with James and taught me how to care for him. Donna said it right when she said, "You just can't imagine what it is like to have such a sick child until it happens." Even when you are thankful for a healthy kid, you have no idea just HOW thankful until you feel like you could lose them or have to watch them go through all that pain.
When we were at KCRC, the second week we spent time with a mother and a 4 yr old girl who had a heart transplant. Not heart surgery, A. Heart. Transplant. Wow. Talk about putting things in perspective. She was born without working muscles in her left ventricle. I think the actual transplant happened about 6-9 months ago, maybe shorter time than that. So these parents (who have 2 older kids), spent 3 years in and out of hospitals, basically buying time until Lauren was old enough and there was a donor. Amazing. And she was amazing. You'd never know.
As a final thought, I have to post that I have the most amazing husband ever, and incredible friends. The week after we got back from KCRC, my friend Annie and I decided to have a much needed girls night (mostly, a night with no little boy, but our husbands had to babysit to make that happen, so it became girls night). Annie's pretty smart, and she had the very inspired idea to see if the Inn at Little Washington could take us. Well, they squeezed us in last minute and we went for the most fabulous dinner eeeevvveeerrrr and when asked, several times, what the special occasion was....we got to say, "Um, girl's night!" While we were sipping champagne and nibbling (shoveling) caviar and fois gras, our sneaky husbands were planning an incredible double birthday bash for the next weekend. We spent our birthday (my actual, Annie's a few days later) laying by the pool while the boys set up. Then the local, organic caterers came in with all their homegrown food that I ate at least four plates of, plus had it for breakfast and dinner the next day. Then the 2 cakes came out, the case of champagne (yay!), and very cool birthday wine glasses that never seemed to empty, and votive candles hanging from the trees and fenceline. It has to be the best birthday I've ever had, certainly as an adult! Honestly, I just posted that to brag. I'll put some pictures up later so you can be really REALLY jealous!
To catch up though, James is doing very well. He is still eating yogurt and pudding, but has started to eat some sweet potatoes with tons of butter and some other Tyler Florence baby foods. He is no longer making awful faces and shuddering when they go in his mouth, so that's great, but it could take hours to get 4 ounces of something new in him. He takes the smallest bites ever. I have discovered the straw bowl so once ice cream melts or yogurt and pudding turns to liquid (which happens in approximately 15 min, just so you know), he can drink through the straw. I think he gets a kick out of it. I know lots of other bystanders do. I carry it with me to restaurants. I don't know why it works better than a cup, it just does. Maybe because he can see exactly what it is and it makes him feel more comfortable.
We had a checkup with the GI doctors 2 weeks ago and it went really well. He is regaining some of the weight he lost at KCRC and the subsequent illness and looks great. He was showing off like crazy. While we were there we went to visit our old nurses. It's an interesting experience to do that. I had a moment where I thought, 'these people see so many kids come through here, I'll kind of feel like a dork if they don't remember us very well.' Non issue. A few of our favorites were there (sadly not all of them) and we spent a long time chatting and catching up. They were pretty happy to see James looking so good and talking about everything, of course. :) I spent most of the time talking to Donna, who was one of our most regular nurses. She's very good at her job and fun to be around. She was saying how they love when kids come back to visit and stay in touch, but some people never want to walk back into that area of the hospital. But you know, I spent every day and night with these people for a loooooong time. I'm sure I drove them crazy at times, but you do form a bond that is very special. I will always be so grateful to each and every person that helped with James and taught me how to care for him. Donna said it right when she said, "You just can't imagine what it is like to have such a sick child until it happens." Even when you are thankful for a healthy kid, you have no idea just HOW thankful until you feel like you could lose them or have to watch them go through all that pain.
When we were at KCRC, the second week we spent time with a mother and a 4 yr old girl who had a heart transplant. Not heart surgery, A. Heart. Transplant. Wow. Talk about putting things in perspective. She was born without working muscles in her left ventricle. I think the actual transplant happened about 6-9 months ago, maybe shorter time than that. So these parents (who have 2 older kids), spent 3 years in and out of hospitals, basically buying time until Lauren was old enough and there was a donor. Amazing. And she was amazing. You'd never know.
As a final thought, I have to post that I have the most amazing husband ever, and incredible friends. The week after we got back from KCRC, my friend Annie and I decided to have a much needed girls night (mostly, a night with no little boy, but our husbands had to babysit to make that happen, so it became girls night). Annie's pretty smart, and she had the very inspired idea to see if the Inn at Little Washington could take us. Well, they squeezed us in last minute and we went for the most fabulous dinner eeeevvveeerrrr and when asked, several times, what the special occasion was....we got to say, "Um, girl's night!" While we were sipping champagne and nibbling (shoveling) caviar and fois gras, our sneaky husbands were planning an incredible double birthday bash for the next weekend. We spent our birthday (my actual, Annie's a few days later) laying by the pool while the boys set up. Then the local, organic caterers came in with all their homegrown food that I ate at least four plates of, plus had it for breakfast and dinner the next day. Then the 2 cakes came out, the case of champagne (yay!), and very cool birthday wine glasses that never seemed to empty, and votive candles hanging from the trees and fenceline. It has to be the best birthday I've ever had, certainly as an adult! Honestly, I just posted that to brag. I'll put some pictures up later so you can be really REALLY jealous!
Sunday, July 4, 2010
The Good, The Bad, and The Ugly
The Ugly totally being me every day after feeding therapy, and especially me after 2 weeks there.
I have been a very very bad blogger recently and there are a few reasons. One, I've already mentioned that I never get on the computer due to the new Blackberry which will not allow me to type in the body of my blogs. I'm also completely exhausted and drained. But also, things really hadn't been going well and I didn't want to talk/write about it. I only like to blog about negative things when they're funny or at least have some sort of uplifting point. Otherwise it's depressing to whoever is reading it and especially to whoever is writing it. I think that most parents can agree that it's never a good day when your kid throws up. No matter how great the day has been, if they puke, the day basically sucked. So when your kid throws up every day for almost a month...pretty much every day of that month has sucked. Depressing thought. So anyway, in order to not bring anyone down with me (except probably my long suffering but wonderful husband), I chose to ignore blogging. I even backed off on the texting and way back on the phone conversations.
We entered our 2 weeks at KCRC last Monday. At that point, James had ceased to put any sort of food in his mouth whatsoever. He wouldn't even touch things that he would at least lick before. He wouldn't even put sugar in his mouth. He threw up every single afternoon without fail. Needless to say, going into feeding therapy, I was pretty discouraged and kind of wanted to throw myself off the balconey (inside joke---probably only family will understand, just go with it). Wow. I'm even depressing myself just writing about it.
BUUUUT...we got to Charlottesville and immediately backed off on his tube feeds and presented him with yogurt to see what would happen. No one, therapist included, thought it was going to go very well. But within 2 days, he was eating more than was going in the tube. I think Tom even teared up while James was eating ice cream. I was in too much shock.
Now, the details of those 2 weeks are fairly unimportant in the grand scheme. We worked on biting and spitting things out and replacing tube feeds with purees. Mostly yogurt and pudding for calories. He's got a loooooong way to go to be eating. If you change certain flavors, he might gag and vomit, any texture causes him to shudder, and he does not know how to chew food and move it around in his mouth. But, for the first time in a long time, he is at least allowing us to present food and willingly takes it into his mouth. 6 times a day we either do a tube feed with biting/crumb practice or we read books and watch Mickey while trying to get 4-5 ounces of puree in him in about 30 min. It is unbelievably exhausting---I can't even explain it. I don't know how these therapists do it all day, except maybe that they are getting paid.
But we finally have rewards and are seeing our boy grow and develop. We even got confirmation that James is actually the smartest kid ever. He has an amazing vocabulary, knows all his colors, and can pick out any animal or body part, even his clavicle (seriously). He has even slept throught the night 2 times for the first time ever.
Amazingly, things are looking up!!
I have been a very very bad blogger recently and there are a few reasons. One, I've already mentioned that I never get on the computer due to the new Blackberry which will not allow me to type in the body of my blogs. I'm also completely exhausted and drained. But also, things really hadn't been going well and I didn't want to talk/write about it. I only like to blog about negative things when they're funny or at least have some sort of uplifting point. Otherwise it's depressing to whoever is reading it and especially to whoever is writing it. I think that most parents can agree that it's never a good day when your kid throws up. No matter how great the day has been, if they puke, the day basically sucked. So when your kid throws up every day for almost a month...pretty much every day of that month has sucked. Depressing thought. So anyway, in order to not bring anyone down with me (except probably my long suffering but wonderful husband), I chose to ignore blogging. I even backed off on the texting and way back on the phone conversations.
We entered our 2 weeks at KCRC last Monday. At that point, James had ceased to put any sort of food in his mouth whatsoever. He wouldn't even touch things that he would at least lick before. He wouldn't even put sugar in his mouth. He threw up every single afternoon without fail. Needless to say, going into feeding therapy, I was pretty discouraged and kind of wanted to throw myself off the balconey (inside joke---probably only family will understand, just go with it). Wow. I'm even depressing myself just writing about it.
BUUUUT...we got to Charlottesville and immediately backed off on his tube feeds and presented him with yogurt to see what would happen. No one, therapist included, thought it was going to go very well. But within 2 days, he was eating more than was going in the tube. I think Tom even teared up while James was eating ice cream. I was in too much shock.
Now, the details of those 2 weeks are fairly unimportant in the grand scheme. We worked on biting and spitting things out and replacing tube feeds with purees. Mostly yogurt and pudding for calories. He's got a loooooong way to go to be eating. If you change certain flavors, he might gag and vomit, any texture causes him to shudder, and he does not know how to chew food and move it around in his mouth. But, for the first time in a long time, he is at least allowing us to present food and willingly takes it into his mouth. 6 times a day we either do a tube feed with biting/crumb practice or we read books and watch Mickey while trying to get 4-5 ounces of puree in him in about 30 min. It is unbelievably exhausting---I can't even explain it. I don't know how these therapists do it all day, except maybe that they are getting paid.
But we finally have rewards and are seeing our boy grow and develop. We even got confirmation that James is actually the smartest kid ever. He has an amazing vocabulary, knows all his colors, and can pick out any animal or body part, even his clavicle (seriously). He has even slept throught the night 2 times for the first time ever.
Amazingly, things are looking up!!
Monday, June 21, 2010
Celebrations!
We had a big big weekend. We celebrated James' big 2nd birthday on Saturday with quite a party. Tents, kiddie pool, slide (that quickly turned into a water slide), BBQ, guns, bows, cupcakes. What more could you ask for? You know it's a good party when 2 kids are naked within a few minutes.
He's been a little off food lately, we think because he is getting so much by tube, he's just truly not hungry. So he didn't display much interest in the cupcakes (here's hoping for next year!). But he did poke it. It's a start.
The best part about the party was that both my parents were here. I love seeing James with Nonna and Poppa. Up until pretty much now, he was so clingy to me, he wasn't as close with them as I would have wanted. But he's got the drill now and I love it!! (and so do they!).
Of course, Sunday was Father's Day, which I hadn't spent with my dad in too long to remember. Aside from a hay unloading debacle where Tom pretty much worked aaallll ddaaayyy, we met up in the evening for some excellent grass fed steaks on our wood fire grill. I think the boys were pretty happy.
I have to say, I lucked out in the dad department, and so lucked out in the husband/father to James department. Tom is so involved with all of James' therapy and is so helpful in what could be a very trying situation to a marraige and life in general. I'm so blessed to have such an amazing partner through all of this, and I couldn't do it without him!
Tuesday, June 15, 2010
Blackberry blogger
I haven't updated in a while, because, honestly, I got a Blackberry and I almost never get on the computer anymore. It makes me a better mom. I do everything from my phone and James never has to walk up to the computer and say, "hold me?" Poor kid.
But a lot has been going on. We decided to get rid of the overnight feed and just do big daytime boluses. Great in theory. In reality, for the past 10 days the kid has thrown up once to twice a day. Misery. I started walking around with a towel. Of course, we've been in constant contact with all his doctors, nurses, and nutritionist, so we're working on the problem. But seriously, that's a lot of puke. It's so sad to see, although after about 1 minute tops, James is running around like mad again. And it's frustrating because it is hard to make up those calories and fluids. We changed around his meds, but it didn't seem to be working. But suddenly, yesterday, no puke. And today, no puke. I'm still super gun shy. I still took a towel into the grocery store just in case. I still carry around an extra shirt for James AND for me. I still sort of always smell puked up Pediasure (that's probably more of a cleaning issue, but whatever). I sort of never want vanilla ice cream ever again. But I'm really hoping we've turned a corner here and things get a bit better and easier every day. Well, maybe not so much easier, but definitely cleaner...
But a lot has been going on. We decided to get rid of the overnight feed and just do big daytime boluses. Great in theory. In reality, for the past 10 days the kid has thrown up once to twice a day. Misery. I started walking around with a towel. Of course, we've been in constant contact with all his doctors, nurses, and nutritionist, so we're working on the problem. But seriously, that's a lot of puke. It's so sad to see, although after about 1 minute tops, James is running around like mad again. And it's frustrating because it is hard to make up those calories and fluids. We changed around his meds, but it didn't seem to be working. But suddenly, yesterday, no puke. And today, no puke. I'm still super gun shy. I still took a towel into the grocery store just in case. I still carry around an extra shirt for James AND for me. I still sort of always smell puked up Pediasure (that's probably more of a cleaning issue, but whatever). I sort of never want vanilla ice cream ever again. But I'm really hoping we've turned a corner here and things get a bit better and easier every day. Well, maybe not so much easier, but definitely cleaner...
Monday, June 7, 2010
summer fun
Cool surfer dude!
Love my kisses!
Here is the backpack. It holds
all his supplies and the tube comes
out a little hole in the side and attaches
to his tummy.
See! You can run and play
just as well (or better!) with
an extra belly button!!
Saturday, June 5, 2010
Backpack backpack
something something it's loaded up with things and nicknacks too. anything that you might need i've got inside for yoooouuuuu. backpack backpack.
How I don't actually know all the words, I have no idea, but if you're not humming this tune now, you are a lucky one. lol
However, I am a HUGE fan of backpacks. At least now I am. We started doing James' bolus feeds using gravity feeds, which means you attach a 60cc syringe to the end of the tube, pour food in, and raise or lower it depending on the speed you want to administer the formula. This is fine for an ounce or two, but once we started giving James bigger bolus sizes, we had to go really slow. So his feeds were taking about 30 min each. There are 6 of them per day, which means for 3 hours each day, I sat holding up the syringe trying to keep James entertained (he can recite the ABCs, sing several songs, count in spanish, french, and english (only up to 10 but still!), and knows about 50 different flashcards). But it was getting harder and harder to keep the rate steady and also to really do any foodplay. So we ordered up smaller feeding bags and a little backpack that holds the pump and the food. I'll post some pics later. First of all, it's adorable and he loves it. Second of all, it has changed my life! Sigh. I mean, I still clean tubing all day long...seriously, but I can set the rate, play with food (James continues to try little bits of everything--we work with lots of crumbs, yogurt (make daddy dance is still a huge hit), salsa, ketchup, etc), and do dishes while James is still playing. He was having extra vomiting with the overnight feeds, and I was wearing pretty thin on the whole 'set the alarm to turn the machine on and off' thing. But we got the go-ahead to start increasing his boluses and decreasing his overnights. Tonight he will be hooked up for one hour and hopefully tomorrow we don't need it anymore! Fingers crossed. His bolus rate is very slow right now. It takes almost an hour to finish a feed, but he loves the backpack and after a few days, we'll start to increase the rate and hopefully get to about 30 min eventually.
That's the update. His last weight was 22.6 pounds. He gained about half a pound in a week. Awesome. We hope to get him a little bigger so that when he goes for his week of therapy in July, we can decrease his boluses, get him a little hungry, and get him eating more volume by mouth. We also started with the OT at Kluge this week too. He will be working with James in between feeding appts and doing the things that make James feel the best and most organized in his sensory system. The goal right now is to get him eating. After that we can worry about some of the other possible sensory problems, like his vestibular system which seems a little out of whack.
Nonna comes out next week and the big bday party is the week after. We have so much to celebrate this year! We would never be this far or be able to go to the week of therapy if James hadn't ended up in the hospital and on that TPN. Amazing when we think back. We're so grateful to have such a sturdy boy!!
How I don't actually know all the words, I have no idea, but if you're not humming this tune now, you are a lucky one. lol
However, I am a HUGE fan of backpacks. At least now I am. We started doing James' bolus feeds using gravity feeds, which means you attach a 60cc syringe to the end of the tube, pour food in, and raise or lower it depending on the speed you want to administer the formula. This is fine for an ounce or two, but once we started giving James bigger bolus sizes, we had to go really slow. So his feeds were taking about 30 min each. There are 6 of them per day, which means for 3 hours each day, I sat holding up the syringe trying to keep James entertained (he can recite the ABCs, sing several songs, count in spanish, french, and english (only up to 10 but still!), and knows about 50 different flashcards). But it was getting harder and harder to keep the rate steady and also to really do any foodplay. So we ordered up smaller feeding bags and a little backpack that holds the pump and the food. I'll post some pics later. First of all, it's adorable and he loves it. Second of all, it has changed my life! Sigh. I mean, I still clean tubing all day long...seriously, but I can set the rate, play with food (James continues to try little bits of everything--we work with lots of crumbs, yogurt (make daddy dance is still a huge hit), salsa, ketchup, etc), and do dishes while James is still playing. He was having extra vomiting with the overnight feeds, and I was wearing pretty thin on the whole 'set the alarm to turn the machine on and off' thing. But we got the go-ahead to start increasing his boluses and decreasing his overnights. Tonight he will be hooked up for one hour and hopefully tomorrow we don't need it anymore! Fingers crossed. His bolus rate is very slow right now. It takes almost an hour to finish a feed, but he loves the backpack and after a few days, we'll start to increase the rate and hopefully get to about 30 min eventually.
That's the update. His last weight was 22.6 pounds. He gained about half a pound in a week. Awesome. We hope to get him a little bigger so that when he goes for his week of therapy in July, we can decrease his boluses, get him a little hungry, and get him eating more volume by mouth. We also started with the OT at Kluge this week too. He will be working with James in between feeding appts and doing the things that make James feel the best and most organized in his sensory system. The goal right now is to get him eating. After that we can worry about some of the other possible sensory problems, like his vestibular system which seems a little out of whack.
Nonna comes out next week and the big bday party is the week after. We have so much to celebrate this year! We would never be this far or be able to go to the week of therapy if James hadn't ended up in the hospital and on that TPN. Amazing when we think back. We're so grateful to have such a sturdy boy!!
Monday, May 31, 2010
On the seventh day, God rested.
On the 702nd day, Clare rested.
Let me set the scene for you:
First of all, I carried a purse today instead of a diaper bag (which eventually got so full I had to turn it in for an overnight bag).
Met Annie at the Poplar Springs Spa in Casanova. Everybody in VA should go. It's lovely. I had a fantastic massage (seriously, I don't even normally like spa type massages that don't make me hurt like Angie {The Right Touch} or Dagmar in Dallas. They just frustrate me. But this girl was awesome---relaxing but also worked out some kinks.) Annie had her facial and then we switched people. I got my eyelashes tinted which I L.O.V.E.! And let me just say this. I have been a big fan of facials ever since I started going to Robyn Straza in Dallas. She is amazing. Seriously. But the last time I had a facial from her was right before my wedding. I looked pretty good back then. But lately I look in the mirror and feel the need to put makeup on just to look at myself. Bad sign. My skin just looked way too pale (not in a cool Twilight way) and tired and dull. I have to say, it looks way better now.
Then we had lunch and ordered way more than any other spa person. They asked later if we needed anything boxed up. Um...nope. Next came a coconut body scrub and a pedicure with super cute pink polish. I feel girly, which is refreshing. In between each session, Annie and I met up in the spa lounge to debrief. And at the end of our day, we ordered a glass of champagne and sat by the pool. Our package was called the Beauty Bliss package...it so was.
I came home to James naked in a water trough on our front lawn yelling, "MOMMMYYYYY!!!"
Let me set the scene for you:
First of all, I carried a purse today instead of a diaper bag (which eventually got so full I had to turn it in for an overnight bag).
Met Annie at the Poplar Springs Spa in Casanova. Everybody in VA should go. It's lovely. I had a fantastic massage (seriously, I don't even normally like spa type massages that don't make me hurt like Angie {The Right Touch} or Dagmar in Dallas. They just frustrate me. But this girl was awesome---relaxing but also worked out some kinks.) Annie had her facial and then we switched people. I got my eyelashes tinted which I L.O.V.E.! And let me just say this. I have been a big fan of facials ever since I started going to Robyn Straza in Dallas. She is amazing. Seriously. But the last time I had a facial from her was right before my wedding. I looked pretty good back then. But lately I look in the mirror and feel the need to put makeup on just to look at myself. Bad sign. My skin just looked way too pale (not in a cool Twilight way) and tired and dull. I have to say, it looks way better now.
Then we had lunch and ordered way more than any other spa person. They asked later if we needed anything boxed up. Um...nope. Next came a coconut body scrub and a pedicure with super cute pink polish. I feel girly, which is refreshing. In between each session, Annie and I met up in the spa lounge to debrief. And at the end of our day, we ordered a glass of champagne and sat by the pool. Our package was called the Beauty Bliss package...it so was.
I came home to James naked in a water trough on our front lawn yelling, "MOMMMYYYYY!!!"
Friday, May 28, 2010
Our new game.
This past Wednesday we had our first therapy appt at KCRC down at UVA. OMG. Okay, just kidding....so many letters.
But really, it was great. James and I spent half the day there consisting of 2 half hour appts with Polly, the inpatient speech therapist. In between appts we played outside in the playground and stared at the fishtank. Cooooool, to quote James. The first appt was mostly James and Polly getting to know eachother a little. But the second appt was very exciting. James ate ice cream, bananas, and popsicle from a spoon. I was ecstatic! What is so interesting now is that James is at an age that you can bargain with him or persuade him to do something.
This is what led to our new game: Make Daddy Dance! Hilarious. Basically if James takes a bite of food, Daddy will dance around like a crazy person, and may or may not snap a towel. James ate 2.5 ounces of yogurt just to Make Daddy Dance. A close second is Make Mommy Dance (but seriously not as good) and third is Throw It! Oh yes, if he takes a bite, he gets to throw something. Really, I'm fine with it. But I feel really bad for his first grade cafeteria lady...
But really, it was great. James and I spent half the day there consisting of 2 half hour appts with Polly, the inpatient speech therapist. In between appts we played outside in the playground and stared at the fishtank. Cooooool, to quote James. The first appt was mostly James and Polly getting to know eachother a little. But the second appt was very exciting. James ate ice cream, bananas, and popsicle from a spoon. I was ecstatic! What is so interesting now is that James is at an age that you can bargain with him or persuade him to do something.
This is what led to our new game: Make Daddy Dance! Hilarious. Basically if James takes a bite of food, Daddy will dance around like a crazy person, and may or may not snap a towel. James ate 2.5 ounces of yogurt just to Make Daddy Dance. A close second is Make Mommy Dance (but seriously not as good) and third is Throw It! Oh yes, if he takes a bite, he gets to throw something. Really, I'm fine with it. But I feel really bad for his first grade cafeteria lady...
Monday, May 24, 2010
Anybody ever have this experience?
So James is asleep (yay) and I finally have a few minutes where I do whatever I want before I pass out from exhaustion. So I'm returning long ignored emails. I hear clattering on the back deck (2 stories up) and look out the window to our 3 lambs peeking in at me. My 90 pound wolfy dog, Charlotte, jumps up to attack and chases them around the house and off the deck. Tom pokes his head in and informs me that da bing is mad because she hasn't finished her dinner and the sheep are on the deck.
Really, no one has had this happen to them before...?
Really, no one has had this happen to them before...?
Just so Ms Jenny knows I can talk:
Hard to imagine that just a few months ago we were worried about James' speech. He would speak without moving his mouth and pretty much only used vowels. Throughout, well, everything, we've been really impressed with how he has met every developmental marker (aside from actually eating food). Considering his level of nutrition, it is impressive. But we've wondered for a while what he would be like if he actually ate enough food and got enough nourishment. Kinda scary to think how much energy he would have....anyway, here's a little video just to put everyone at ease!
(by the way, I just want to point out how difficult it is to get any kid to do anything on command, on video---be impressed.)
(by the way, I just want to point out how difficult it is to get any kid to do anything on command, on video---be impressed.)
Tuesday, May 18, 2010
a good checkup
On Monday we went for our first post hospital checkup. Allow me to digress for a moment---many people can identify with this problem, though mostly when it comes to the dentist. I myself have been to the doctor way too many times, and for the majority of James' life, we've gone to the pediatrician every other week to ever week. Now, that's not really fun and it's time consuming, etc, etc. But the reason people start having a fear or aversion to a doctor is when things go badly. "Badly" can mean different things to different people. Some people hate shots and having their blood drawn; I couldn't care less. But also just when you get bad or frustrating news over and over and over and over...and over, you just don't want to hear it anymore. My endocrinologist has been seeing me since I was 17. Trust me, I wasn't a good patient. I am now though, but when I was pregnant, he ended up putting my on blood presssure medicine because I would be so nervous when I went to see him every week, even though everything was going pretty well. I'm pretty sure I'll never get over it. It's sort of the same for James' visits. Luckily they don't take my blood pressure, but I just dread going. Most of the time I know what they're going to say. We have a baby scale at home and I feed him. I feel like I should just call in and let them know what his current weight is and avoid the drive and the wait and the torture.
So Monday was very refreshing. Really, not much has changed, but that's a good thing. We've put some boluses together so he is eating a little more at one time with a little more time in between feeds. Otherwise, we're not changing anything and will start at KCRC next week. It was fun to see doctors be so happy in James' presence. Dr. Borowitz even got a hug from James. Following our appt we snuck up to our old home and visited James' 'harem'. It was pretty cute when he ran down the hall (and tried to walk me to the play room) and we saw a whole bunch of his nurses in the hall. He was swarmed and loved every minute of it.
We got home to the following video:
And here James is just showing off:
Sunday, May 16, 2010
Saturday, May 15, 2010
pics and the easy life
Several people have asked me if life is easier after putting the tube in. In short, no. But okay, here's the long answer. The answer is no because any comparison we have to 'life' is life before James got his most recent illness. When we originally decided to put the gtube in, we had a pretty good schedule, James ate pretty good bottles, and we knew what to expect in a day. So the tube was planned as part of therapy, and to be used to supplement his oral feedings. That all flew out the window when James stopped eating bottles. Now, it's not the end of the world that he did stop bottles. He is eating real food better than ever, but just not to any sustainable degree. So we're still moving in the right direction, we're just taking a different path. And that takes some getting used to, especially me. Emotionally it's been very hard. (Even though, rationally, I know it's all going well---we're all aware that sometimes I'm not rational.) Tom said it right when he said it's sort of like having an infant again, which is extra hard because I feel like, feeding-wise, we've had an infant for a loooooong time. But we are currently tube feeding every 2 hours, 7 times per day, with an overnight feed of 5 hours. This means I have to set an alarm for 5 hours after I turn on the pump to turn it off, flush his tube, etc. That's not such a big deal if he, or I, slept steadily the rest of the night. But we don't. I am barely sleeping right now. But I do know that soon we will add more to the bolus feeds at each time and put more time in between them, so it's not forever. Plus, the feeds are going very well; there's been no puking in a good while! Sooo....basically, things are good, but just definitely not easier just yet. We go for a checkup next week and I'm very much looking forward to what is next. I think James is ready for more. And in two weeks we start therapy at KCRC, which is even more exciting because OT will meet with us in between his 2 feeding therapies on Wednesdays. It's going to be amazing and I actually think James will have lots of fun. I have also, amazingly, actually booked my Mother's Day spa day for Memorial Day. I mean all day. My friend, Annie, and I are getting completely pampered with facials, massages, pedicures, body scrubs, lunch, swimming, etc, for an entire day. Without sounding too self absorbed (shut up Cook), we so deserve it.
The following are a bunch of pics from the hospital and homecoming. They all downloaded funky and I just don't feel like fixing it, so here you go:
James with awesome preschool teacher, nurses, nutritionist, PCAs, and all friends! (and his front facing car seat ride home!)
James with his school friend, Paris.
as you've seen in previous pics, James charmed all nurses to let him on their computers. It was pretty hilarious!
more ice cream.
where we lived.
totally inappropriate behavior.
Tuesday, May 11, 2010
Cutest video!
This was James truly eating a cookie for the first time in the hospital. Little charmer.
Friday, May 7, 2010
Home Sweet Home
Corny, but so true. We got a surprise discharge on Wednesday and have been running ever since. We were totally unprepared. Tom had the wrong truck down at UVA so he could pick up some lumber. So he had to drive an hour and a half home and then drive back, but you know hospitals. It took us nearly 8 hours to actually be discharged. Which meant we got home, had to do a bolus feed, Tom had to go pick up a prescription, I had to set up the pump and IV pole, get all meds organized and get the boy to bed. Stresses me out and will continue to stress me out til I'm used to it. See, if I had a good sleeper, I wouldn't worry so much, but there is a tube attached to a hole in my son's tummy and he tosses, turns, cries, and occasionally runs out of bed at night. Not to mention eventually ending up in my bed.
Here's how the first night's experiment went:
Hooked him up close to 8, sat on his mattress while he went to sleep. Alarm went off at 1am to turn off pump, woke up James, scared him, and he puked. Cleaned him up, went back to bed, alarm went off at 2am to turn pump back on. James fussy for next 3 hrs til alarm went off at 5am to turn pump off again. Never really went back to bed.
Next night:
Same start to the night, woke at 1am to turn pump off, no puking. Alarm went off at 2am, pump back on. Barely back to sleep at 3 am when James starts throwing up. Clean him up, turn pump off, alarm goes off an hour later to turn pump back on. Another hour after that, alarm goes off to turn pump off again.
So let's just say this wasn't working. New plan: increase bolus amounts and frequency and do drip feed from 8pm to 1am and be done. This is working much better. Has only had one vomit, and that was due to waking up in the middle of the night barely able to breathe because of a cold/allergies and his still irritated windpipe and vocal chords from the breathing tube. This was pretty scary at home and we had a nice chat with the pediatrician on call at 1am. He got better with some steam breathing and we went to the dr on saturday morning. There he was put on some steroids to help his throat. Helped soooo much and we're very glad we did it.
At this point though, I was feeling the need to lower my expectations for Mother's Day. Turns out I didn't need to. I had such a great day and got completely spoiled and somehow I'm a little hungover this morning. We had some wonderful friends over all afternoon and evening, and we ate, drank, and had a very fun Easter egg hunt. I'll post some pics later. In the meantime, I'll be planning my spa day my husband gave me, our trailride we're going to go on to see the mountain laurel, and our 3 day vacation in FL we will take once James is ready to have a few days with Nonna. It's okay, you can be jealous.
Tom brought cheese, pate, apples, and champagne after he fell asleep and we picnicked (I know, could be worse, right?)
Had to give him his paci once
Here's how the first night's experiment went:
Hooked him up close to 8, sat on his mattress while he went to sleep. Alarm went off at 1am to turn off pump, woke up James, scared him, and he puked. Cleaned him up, went back to bed, alarm went off at 2am to turn pump back on. James fussy for next 3 hrs til alarm went off at 5am to turn pump off again. Never really went back to bed.
Next night:
Same start to the night, woke at 1am to turn pump off, no puking. Alarm went off at 2am, pump back on. Barely back to sleep at 3 am when James starts throwing up. Clean him up, turn pump off, alarm goes off an hour later to turn pump back on. Another hour after that, alarm goes off to turn pump off again.
So let's just say this wasn't working. New plan: increase bolus amounts and frequency and do drip feed from 8pm to 1am and be done. This is working much better. Has only had one vomit, and that was due to waking up in the middle of the night barely able to breathe because of a cold/allergies and his still irritated windpipe and vocal chords from the breathing tube. This was pretty scary at home and we had a nice chat with the pediatrician on call at 1am. He got better with some steam breathing and we went to the dr on saturday morning. There he was put on some steroids to help his throat. Helped soooo much and we're very glad we did it.
At this point though, I was feeling the need to lower my expectations for Mother's Day. Turns out I didn't need to. I had such a great day and got completely spoiled and somehow I'm a little hungover this morning. We had some wonderful friends over all afternoon and evening, and we ate, drank, and had a very fun Easter egg hunt. I'll post some pics later. In the meantime, I'll be planning my spa day my husband gave me, our trailride we're going to go on to see the mountain laurel, and our 3 day vacation in FL we will take once James is ready to have a few days with Nonna. It's okay, you can be jealous.
Tom brought cheese, pate, apples, and champagne after he fell asleep and we picnicked (I know, could be worse, right?)
Had to give him his paci once
Tuesday, May 4, 2010
Date Night
Many many...many moons ago I was at my college orientation. I thought it was unbelievably dumb because I was about 4 years older than anyone there and couldn't care less about the college experience (I was already worn out by my equestrian experiences). But I saw a girl walking around on crutches who needed some help. I'd watched several people walk through doors and not hold them for her (come on people) and then watched her attempt to get a plate of food from a buffet line (ok, that was funny). Of course she wasn't asking for help and so, of course recognizing this tendency I have myself (many of you remember me breaking both my arms, yes at the same time, and continuing to live by myself, drive to tx, lunge my horses--only thing I couldn't do was operate a can opener for Charlotte's food), I went to help. We hit it off immediately and then I met her dad who is one of the funniest people I've ever met. Kaylee and I stayed friends all through college and got married exactly one month apart. It's always been fate. At her wedding I met her best friend, Tara, from high school and we became facebook friends.
Tara is a nuclear medicine tech at UVA (yeah, so smart), and despite having only met me once before, there has only been a rare day that she hasn't come up to visit and check on us. Of course she is a hot blonde chick, so James is in love. I would never have thought about having a fun night out when my son is in the hospital...seems wrong. But after a while, you have to try for a normalish life. So last night Tara came up after a long day at work and watched James while Tom and I had an absolute blast at Zinc, walking distance from the hospital. Great food, great wine, fun kitchen store next door where I got James an apron so we could make cookies together. We actually had a wonderful time together and certainly didn't have to worry about James at all. A full nursing staff sure does take the pressure off.
Our home date keeps getting pushed back. J is still vomiting every morning early so we are changing his feeding regiment up again. We will shorten the overnight feed and add some daytime boluses. He seems to now be handling these better. Still really hoping to make it home before mother's day though. Fingers crossed!
On an unrelated/sort of related note, the following site is for the telethon airing in June where they took a little video of us. Could be scary of me mostly, but there you go if you want to keep posted!
UVA Children's Hospital Telethon
Tara is a nuclear medicine tech at UVA (yeah, so smart), and despite having only met me once before, there has only been a rare day that she hasn't come up to visit and check on us. Of course she is a hot blonde chick, so James is in love. I would never have thought about having a fun night out when my son is in the hospital...seems wrong. But after a while, you have to try for a normalish life. So last night Tara came up after a long day at work and watched James while Tom and I had an absolute blast at Zinc, walking distance from the hospital. Great food, great wine, fun kitchen store next door where I got James an apron so we could make cookies together. We actually had a wonderful time together and certainly didn't have to worry about James at all. A full nursing staff sure does take the pressure off.
Our home date keeps getting pushed back. J is still vomiting every morning early so we are changing his feeding regiment up again. We will shorten the overnight feed and add some daytime boluses. He seems to now be handling these better. Still really hoping to make it home before mother's day though. Fingers crossed!
On an unrelated/sort of related note, the following site is for the telethon airing in June where they took a little video of us. Could be scary of me mostly, but there you go if you want to keep posted!
UVA Children's Hospital Telethon
Saturday, May 1, 2010
Just realized something!
I haven't really posted on here how well James is doing in his oral therapy. Just a few weeks ago, James put lots of things in his mouth, but always spit it out, or swallowed accidentally or just sometimes. His least favorite texture (thank you sensory disorder) is mushy, sticky, wet things. You know, like yogurt, baby food, cooked veggies....anything you've chewed up and are about to swallow. Tricky. Also, because he never chewed toys or fingers...ever, he has never really learned to chew and, consequently, to swallow. Pretty hard to teach. But since we've been here and gotten him really good nutrition and I've really had nothing to do but work with him, he is actually swallowing most of what he puts in his mouth. He ate almost a whole cereal bar, swallows chocolate, eats a few bites of a cookie, licks ice cream, and yesterday he ate 10 (TEN!) bites of Koala Crisp (thank you Rachael!). For those of you who don't know about Koala Crisp, it's in the organic section and it's sort of like Rice Krispies, except waaaaay better. Anyway, he's never eaten cereal in his life, never touched it to his mouth, never even touched it with his fingers. Huge! And very exciting. We will be starting outpatient therapy once a week at KCRC and will come for a solid week or two in July!
I need a spa day.
Not so much for the relaxation (although that would be welcome), but for aesthetics. Let's just say I've looked better in my life. At least I certainly hope so. I must have, right? I mean, someone married me, so that's a good sign. The hard part about that someone is that he gets scruffy and rumpled and looks hot while I just look, well, scruffy and rumpled. And I'm not sure it's okay for a girl to look that way.
Hospital life is hard on you in so many ways. You never really sleep, the air is so dry I can't even describe it, and it can be really depressing. And it's not even depressing just cause you're stuck in an ugly room all the time, but in a pediatric unit, you're surrounded by some very sick kids. During James' nap yesterday I sobbed for half an hour because I was listening to a little boy crying next door. He had no right hand or right foot, and his left leg was in a cast. He wanted his mommy to hold him (I'm not really sure why she wouldn't, but I'll give her the benefit of the doubt) or he wanted to walk. It was heart wrenching and I was already feeling a bit emotional. Thankfully an old friend who is a nursing student stopped by for lunch and distracted me.
Most of the kids who were here when we got here are gone. That alone is a part depressing, because we are still here, and part happy because they are going home. It's still bittersweet though, because across the hall from us is the Bone Marrow Unit. So most of our neighbors have leukemia. I saw little Sarah when we first came in. She had long brown hair and was ridiculously cute. She went home today, which brought me to tears again (hey, I cry at So You Think You Can Dance and Plastic Makes it Possible commercials-this is no surprise). Her hair is mostly gone and mostly white. Her parents are some of the nicest people I have ever met. I know that even with all they go through, with their 5 kids at home and one on the way, they prayed and will continue to pray for James every day. Of course, the reason this is so bittersweet is that she will have to return for treatment, like so many of the kids we've seen and played with.
An amazing thing about UVA Children's Hosptial is that they have school here. There are 3 teachers available every day that hold different levels of school for patients and also siblings of patients. James goes to preschool most mornings for about an hour. We have a ton of fun with Ms. Chelsea blowing bubbles and singing songs. When kids are too sick to leave their rooms, the teachers go to each kid's room and play with them and try to engage them. When we first got here and James was in such a sorry state, Chelsea would ride by the room on a ridiculously small car and could even crack a smile out of my boy. I'll never forget that. This is only one of 4 hospitals in Virginia that has a program like this, and one of 16 in the country. We are so lucky to be here.
I feel like we've made so many friends here, especially with all of the incredible, unbelieveable nurses here. James is, of course, pretty famous. Mostly for his hair, but also just his crazy self. He has started running up to each nurse, smiles and says "up", and then climbs in their laps and proceeds to pelt away at their keyboard. Not one nurse has ever put him down to get their work done. They always pull up Nick Jr or a word document and let him take over. I'm working on getting pictures of him with each of his victims. :)
But I'm still ready to head home. Last night was James' first night to not vomit on the overnight feed. So we will increase him slowly and start daytime bolus feeds and hopefully get home next week. He is started on arithromycin (butchering spelling--I'll fix later) which is an antibiotic that's side effect is increasing gastric emptying. He won't have to be on it forever, but it seems to be working and we are very grateful. I'm not sure when, precisely, we will be home, but I'm banking on before Mother's Day and let me just say this: I have high expectations.
Hospital life is hard on you in so many ways. You never really sleep, the air is so dry I can't even describe it, and it can be really depressing. And it's not even depressing just cause you're stuck in an ugly room all the time, but in a pediatric unit, you're surrounded by some very sick kids. During James' nap yesterday I sobbed for half an hour because I was listening to a little boy crying next door. He had no right hand or right foot, and his left leg was in a cast. He wanted his mommy to hold him (I'm not really sure why she wouldn't, but I'll give her the benefit of the doubt) or he wanted to walk. It was heart wrenching and I was already feeling a bit emotional. Thankfully an old friend who is a nursing student stopped by for lunch and distracted me.
Most of the kids who were here when we got here are gone. That alone is a part depressing, because we are still here, and part happy because they are going home. It's still bittersweet though, because across the hall from us is the Bone Marrow Unit. So most of our neighbors have leukemia. I saw little Sarah when we first came in. She had long brown hair and was ridiculously cute. She went home today, which brought me to tears again (hey, I cry at So You Think You Can Dance and Plastic Makes it Possible commercials-this is no surprise). Her hair is mostly gone and mostly white. Her parents are some of the nicest people I have ever met. I know that even with all they go through, with their 5 kids at home and one on the way, they prayed and will continue to pray for James every day. Of course, the reason this is so bittersweet is that she will have to return for treatment, like so many of the kids we've seen and played with.
An amazing thing about UVA Children's Hosptial is that they have school here. There are 3 teachers available every day that hold different levels of school for patients and also siblings of patients. James goes to preschool most mornings for about an hour. We have a ton of fun with Ms. Chelsea blowing bubbles and singing songs. When kids are too sick to leave their rooms, the teachers go to each kid's room and play with them and try to engage them. When we first got here and James was in such a sorry state, Chelsea would ride by the room on a ridiculously small car and could even crack a smile out of my boy. I'll never forget that. This is only one of 4 hospitals in Virginia that has a program like this, and one of 16 in the country. We are so lucky to be here.
I feel like we've made so many friends here, especially with all of the incredible, unbelieveable nurses here. James is, of course, pretty famous. Mostly for his hair, but also just his crazy self. He has started running up to each nurse, smiles and says "up", and then climbs in their laps and proceeds to pelt away at their keyboard. Not one nurse has ever put him down to get their work done. They always pull up Nick Jr or a word document and let him take over. I'm working on getting pictures of him with each of his victims. :)
But I'm still ready to head home. Last night was James' first night to not vomit on the overnight feed. So we will increase him slowly and start daytime bolus feeds and hopefully get home next week. He is started on arithromycin (butchering spelling--I'll fix later) which is an antibiotic that's side effect is increasing gastric emptying. He won't have to be on it forever, but it seems to be working and we are very grateful. I'm not sure when, precisely, we will be home, but I'm banking on before Mother's Day and let me just say this: I have high expectations.
Friday, April 30, 2010
What to say, what to say...
Well, we're still here, for one. James has been vomiting early in the morning with each over night feed. It seems to be getting later, so maybe he's getting a little better. We're trying a couple of things but one at a time. He still refuses bottles unless he's asleep. He's eating more real food than ever before, which is fantastic, but it's not enough to live on...so we're still here. We have toyed with the idea of getting him to the inpatient therapy at KCRC (Kluge Childrens Rehab Center) but not everyone is convinced that is the best thing since he has been through so much recently. Part of me wants to get him into it in the hope that he really starts eating, and another part of me wants to burst into tears, run to the car, reinstall the car seat (forward facing), and race home. But I won't, don't worry. I would have been fine if we hadn't talked about going home first, but I started dreaming about Mother's Day at home and a makeup Easter Egg Hunt. Still totally might happen, but in the words of James, "I dunno." (shoulder shrug--thanks Tara. lol) We took James off the TPN sooner than planned because it can slow gastric emptying too. But now we're operating on about 600 less calories per day, so that makes me nervous too. I just don't want to go too far in the wrong direction. But he is being carefully monitored here, so I'm sure they won't let that happen.
Again...sigh.
Again...sigh.
Thursday, April 29, 2010
just a few pics
I know some of you are missing this sweet boy! More of an update later.
Loved our Nonnie visit!!
mmmmm, ice cream!
food play in the hospital bed. nice. btw, this was a good 4 pounds ago.
Loved our Nonnie visit!!
mmmmm, ice cream!
food play in the hospital bed. nice. btw, this was a good 4 pounds ago.
Tuesday, April 27, 2010
The end is near...
...in a good way. Everyone asks when we are going home and, to be honest, I hadn't even asked. It really wasn't important to me in the grand scheme of things. But now that James is slowly progressing with his feedings, slooowly, we are looking at early next week. So that is super duper news. We have also gotten in with the feeding team at Kluge, which is also super duper news. His current therapist in Dallas will always be my favorite, but we'll be sticking to VA for a little while. Heck, as things stand right now, I don't really ever want to leave home again! (except maybe a vacation somewhere warm with water, sand, champagne, and no kids...maybe with a spa, a masseuse, a maid, a chef probably, a bed that doesn't raise up with buttons, HBO, a bathtub, no balloons...I digress.)
In case anyone is interested, and of course you are, go to www.mic-key.com to see what the g-tube looks like.
In case anyone is interested, and of course you are, go to www.mic-key.com to see what the g-tube looks like.
Monday, April 26, 2010
April 27th
Just wanted to point out that we've been in a hospital (different ones, but still) since April 1st. Just thought I'd mention it in case anyone wanted to send candy or something. They have krispy kremes here, so don't send those. Evidently a krispy kreme a day keeps the dr away!;) (btw, that's not a soul patch - that's frosting.)
Things are progressing well. James threw us for a little loop (because why would a child of mine do what was expected?) by choosing to not eat after the surgery. So our original plan of supplementing his oral eating with bolus tube feeds had to go out the window. We did try the bolus feeds 5x on the first day at 1 ounce per feed. But, as I expected, he didn't eat anything orally unless he was sleeping. So last night we did our first overnight drip feed. When we did this with the NG tube he vomited a few times, so I was a bit worried and actually completely expected to get puked on. We had a bit of a restless night with James trying to get comfortable and me trying not to tangle the ridiculously short tubing for the feed. But all in all it went well and he recieved 10 ounces over a 12 hr period. During the day now we are unhooking him from the TPN and tube feeds all day so hopefully he will get hungry and eat a little better. Yesterday during the day he ate a little better, but still mostly while he was sleeping.
I also left the hospital yesterday for the second time in almost a month. Had a fun shopping trip to Target and got a whole bunch of stuff I may or may not need, then went to pick up lunch and had a glass of wine with my mommy while we waited. It was great. We all know how I feel about wine...and coconut cake. Unfortunately my mommy leaves today. Boo. But hopefully we get home soon and she'll come back. We have a big bday to start planning for and one of my favorite cousin in laws is living nearby and I CAN'T WAIT TO SEE HER TOO!!!!
Things are progressing well. James threw us for a little loop (because why would a child of mine do what was expected?) by choosing to not eat after the surgery. So our original plan of supplementing his oral eating with bolus tube feeds had to go out the window. We did try the bolus feeds 5x on the first day at 1 ounce per feed. But, as I expected, he didn't eat anything orally unless he was sleeping. So last night we did our first overnight drip feed. When we did this with the NG tube he vomited a few times, so I was a bit worried and actually completely expected to get puked on. We had a bit of a restless night with James trying to get comfortable and me trying not to tangle the ridiculously short tubing for the feed. But all in all it went well and he recieved 10 ounces over a 12 hr period. During the day now we are unhooking him from the TPN and tube feeds all day so hopefully he will get hungry and eat a little better. Yesterday during the day he ate a little better, but still mostly while he was sleeping.
I also left the hospital yesterday for the second time in almost a month. Had a fun shopping trip to Target and got a whole bunch of stuff I may or may not need, then went to pick up lunch and had a glass of wine with my mommy while we waited. It was great. We all know how I feel about wine...and coconut cake. Unfortunately my mommy leaves today. Boo. But hopefully we get home soon and she'll come back. We have a big bday to start planning for and one of my favorite cousin in laws is living nearby and I CAN'T WAIT TO SEE HER TOO!!!!
Saturday, April 24, 2010
Nonnie visit
Hey if Grace gets to tell 'em, so do I.
Looking up lunch places online. Me: "Let's get something healthy." Nonnie, "yeah, that way we can have a nice dinner." me: "here's a bakery. Oh, they don't have sandwiches. Ooo, they have carrot cake." Nonnie: "Let's have cake and tea!"
She's in a cab right now on her way. When she gets back we'll have green tea cause it's 'slimming'. See where I get my rationalization skills.
Looking up lunch places online. Me: "Let's get something healthy." Nonnie, "yeah, that way we can have a nice dinner." me: "here's a bakery. Oh, they don't have sandwiches. Ooo, they have carrot cake." Nonnie: "Let's have cake and tea!"
She's in a cab right now on her way. When she gets back we'll have green tea cause it's 'slimming'. See where I get my rationalization skills.
Thursday, April 22, 2010
Day 2 post op
Great day! James woke up sore but had a decent night, so he was happy. We pretty much hung out in bed all day until he was unhooked from the TPN and his iron supplement. They wanted him to start moving around a little more, so we doped him up on some pain killers and went to play. I really didn't think he was going to want to walk much, but after a short wagon ride, he got out and pushed the wagon himself all over the hospital, then took a car ride, then played with an obnoxious phone, walked to the kitchen a few times, pushed another car, played with some trucks and trains, and finally asked to get back in bed. lol Cute kid. His surgeon came in just before all this and said that he looks great and if anything he wants to eat is just fine. This is...incredible. James wasn't originally supposed to eat anything until late tomorrow, so this was a huge relief. He actually wasn't that interested in milk, but he did eat 3 squares of a chocolate bar. I had to stop him just to make sure he didn't overdo it! He hasn't gained any weight, but he hasn't lost any, so we're doing well!
Wednesday, April 21, 2010
day 1 post op
Just a quick check in after today. James did really well all things considered. He didn't lose any weight from yesterday (thank you TPN) and even played with some toys and read some books while laying back on the bed. Every day should be a little better and tomorrow should be the best because NONNIE IS COMING!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We also had our 15 min of fame today. We were interviewed by NBC 29 to tell raise money for children's hospitals. I'm sure they'll make a ton of money when they play our clip at the telethon. I looked like hell, Tom was scruffy but of course it looks good on him, and James had a hole cut in his stomach yesterday. So I think we'll sell. And hopefully it'll get a little word out about sensory integration disorder too!
We also had our 15 min of fame today. We were interviewed by NBC 29 to tell raise money for children's hospitals. I'm sure they'll make a ton of money when they play our clip at the telethon. I looked like hell, Tom was scruffy but of course it looks good on him, and James had a hole cut in his stomach yesterday. So I think we'll sell. And hopefully it'll get a little word out about sensory integration disorder too!
Surgery over!!
I had been dreading yesterday for a while. I wasn't actually worried about the procedure, but the next few days of recovery. James was finally feeling so good, weight 22 lbs 3 oz, charming everyone on our floor. Then we sort of pulled the rug out from under him. Obviously he won't remember this eventually, but it's hard to see your little one in pain (my parents are experts on this!).
We had a little scare on Sunday night (apart from Tom's ill-timed food poisoning). A doctor rushed in after seeing his morning labs. Apparently his blood glucose was very low. Okay, it actually wasn't, and after sticking him twice, they agreed it was a mistake. Still, better safe than sorry. At that time, his pre-surgical labs were done and they found him anemic with low hemoglobin. This immediately started discussions of blood transfusions (yikes.) and possible reasons. Finally, in daylight, the voice of reason showed up in the form of Dr. Borowitz (GI doc). I'm really starting to love this guy. See, there are lots of benefits of so many doctors looking at James, but a downside is that they all have different labs they want taken. Every night a nurse would flush his central line, draw out tainted blood, and then draw a lab sample. Dr. Borowitz looked at this and said that they were taking way too much blood out of the poor kid, when he has likely been anemic for a long time. So everyone took a deep breath and started him on iron. The surgeon was not worried about his bloodwork either, so we moved right ahead. It is very important, I think, to have a doctor that starts with the simplist explanation and then moves forward. They're usually right.
So the g-tube was placed yesterday at about 1 pm. James was a very sad little boy coming out of it. We had a rough night. His airway was irritated from the breathing tube and he was taking shallow breaths cause his tummy hurt. Nothing unusual in a case like this though. So a wonderful respiratory nurse came in and gave him a breathing treatment which he loved and started a humidifier in the room (seriously, we've been dyin here in the hospital air---I didn't know there was a way to hook one from the wall or I would have asked for this a looooong time ago). His heart rate is still a bit high probably from pain and also from anemia. But we've been giving him some meds and he is much happier. He woke up this morning with a smile, but then he tried to sit up. Smile came back though, so all in all he is in good spirits and looks really good. It is still the plan to stay until we are all confident of his oral eating and g-tube regiment so we can remove the central line. Hoping it doesn't take too long, but I am assuming another 10 days or so. Who knows, he might be so hungry after all this he might surprise us all!
Thanks everyone for continuing thoughts and prayers. This is one tough kid!!
We had a little scare on Sunday night (apart from Tom's ill-timed food poisoning). A doctor rushed in after seeing his morning labs. Apparently his blood glucose was very low. Okay, it actually wasn't, and after sticking him twice, they agreed it was a mistake. Still, better safe than sorry. At that time, his pre-surgical labs were done and they found him anemic with low hemoglobin. This immediately started discussions of blood transfusions (yikes.) and possible reasons. Finally, in daylight, the voice of reason showed up in the form of Dr. Borowitz (GI doc). I'm really starting to love this guy. See, there are lots of benefits of so many doctors looking at James, but a downside is that they all have different labs they want taken. Every night a nurse would flush his central line, draw out tainted blood, and then draw a lab sample. Dr. Borowitz looked at this and said that they were taking way too much blood out of the poor kid, when he has likely been anemic for a long time. So everyone took a deep breath and started him on iron. The surgeon was not worried about his bloodwork either, so we moved right ahead. It is very important, I think, to have a doctor that starts with the simplist explanation and then moves forward. They're usually right.
So the g-tube was placed yesterday at about 1 pm. James was a very sad little boy coming out of it. We had a rough night. His airway was irritated from the breathing tube and he was taking shallow breaths cause his tummy hurt. Nothing unusual in a case like this though. So a wonderful respiratory nurse came in and gave him a breathing treatment which he loved and started a humidifier in the room (seriously, we've been dyin here in the hospital air---I didn't know there was a way to hook one from the wall or I would have asked for this a looooong time ago). His heart rate is still a bit high probably from pain and also from anemia. But we've been giving him some meds and he is much happier. He woke up this morning with a smile, but then he tried to sit up. Smile came back though, so all in all he is in good spirits and looks really good. It is still the plan to stay until we are all confident of his oral eating and g-tube regiment so we can remove the central line. Hoping it doesn't take too long, but I am assuming another 10 days or so. Who knows, he might be so hungry after all this he might surprise us all!
Thanks everyone for continuing thoughts and prayers. This is one tough kid!!
Monday, April 19, 2010
Saturday, April 17, 2010
good or bad?
Um...is it good or bad when students start coming in to ask if they can write a paper about James? Hmmm...
Friday, April 16, 2010
Chubby Bunny
Everyone has seen those kids...the 'sick' kids. They could have a wheelchair, or crutches, a shaved head, or a tube out their nose and taped to their face. We all feel sad for what they are going through and for their parents, wonder what's wrong, hope they get better, and give silent thanks that our kids are fine or hope it doesn't happen to us. I say this without vanity, simply in all honesty (and most of you know me to tell the truth, even when I shouldn't). But it is a very different and humbling experience when you have that kid. We have been at the hospital for two weeks now. For the first week, James was skin and bones, cried and clung to me all day, had the tube taped to his face, circles under his eyes. He didn't smile or talk for 3 days except to ask for milk, water, or mommy. I tried to take him out of his room, outside, anything to perk him up.
We now have a completely different child. It is fun now to see the nurses from that first week who watched me cry and held my hand come back from a few days off or a different rotation. They are amazed. The resident dr for our floor said seeing him walk for the first time was the best part of her day (prior to this, people were actually asking if he knew how to walk or talk). Today we played hide and seek in the halls while he ran and did his devil laugh. Last night I spent 30 min staring at his back and running my hand up and down, marveling that I couldn't see any vertebrae and could actually feel some cushion. His legs are thicker than they've ever been. His fingers are a little chubby. I can even feel some fat on his neck. He weighed in this morning at 21 lbs 3 oz. Apparently they retain water on TPN, and we can expect him to lose a little bit when they take him off, but not that much. We've always said James just wasn't sick enough for him to get the really proactive care we wanted for him and felt he needed. I'm very sorry he had to get this sick, and I don't want to do it again. Ever. But it might have been the best thing to happen to us.
We now have a completely different child. It is fun now to see the nurses from that first week who watched me cry and held my hand come back from a few days off or a different rotation. They are amazed. The resident dr for our floor said seeing him walk for the first time was the best part of her day (prior to this, people were actually asking if he knew how to walk or talk). Today we played hide and seek in the halls while he ran and did his devil laugh. Last night I spent 30 min staring at his back and running my hand up and down, marveling that I couldn't see any vertebrae and could actually feel some cushion. His legs are thicker than they've ever been. His fingers are a little chubby. I can even feel some fat on his neck. He weighed in this morning at 21 lbs 3 oz. Apparently they retain water on TPN, and we can expect him to lose a little bit when they take him off, but not that much. We've always said James just wasn't sick enough for him to get the really proactive care we wanted for him and felt he needed. I'm very sorry he had to get this sick, and I don't want to do it again. Ever. But it might have been the best thing to happen to us.
Wednesday, April 14, 2010
We came here in a rear-facing car seat...
...and we'll be leaving in a front facing one. lol I'm stupidly excited about this. James weighed in this morning at 20 lbs 9 oz. His lowest hospital weight was about 18 pounds and his highest recorded weight prior to this was 19 lbs 4 oz. Very. Exciting.
Things that suck about living in a hospital aside from the obvious:
-No Bing, Patita, or Dimpity!
-Feeling like I'm going to be on the next episode of Hoarders
-Feeling like I'm going to be on the next episode of Hoarders
-Walking around barefoot for a few minutes before I remember where I am
-Flip flops getting pushed under the bed so I have to walk barefoot even when I AM aware of where I am
-Doctors dressed in suits coming to visit while I'm still in pjs with no bra
-Getting pooed on (okay, not exclusive to hospital living, but still, seems to happen a lot here)
-Things being done for policy rather than necessity (2 good examples: 1-the first night we were here we walked into our shared room to see a crib and a reclining chair. James has enough trouble sleeping at home...there was NO way he was sleeping in a crib here. I explained it to the nurse and here's what she said: "If a child is under 2 our policy is that there has to be in a crib." Me: "But you realize he will instead be sleeping with me in a chair, right?" her: "That's fine." Okey dokey. Took 2 nights to get a nurse that got it and brought in a bed. 2-vitals. Not James' problem. Doesn't have a respiratory problem, so his blood oxygen level is fine. No blood pressure problems...in fact, he's not sick. Just doesn't eat. So I understand doing the vitals, but maybe not every 4 hours and no, I am not waking him up from a nap for you to do them. What 2 year old will go back to sleep during a nap for that?)
-Waking up at 2am because I had 3 consecutive hours of sleep and my body assumes that's all it's gonna get when, in fact, the child is still asleep and I've barred all nurses from the room. Stupid body.
-No fridges in rooms. They should have minifridges in here.
-Keeping diapers so they can be weighed. Gross.
-IV poles. Really? It's 2010 and we can't do better than this?!
-The tv is attached to the wall all the way at the ceiling and not tilted downward. Awkward.
-No dvr. Have you ever TRIED watching American Idol without being able to fast forward? Who lives like this?!
-Having to explain to Tom WHICH of my 12 pairs of blue jeans I actually want him to bring from home
Tuesday, April 13, 2010
no news is good news
Not much to report today. James in very good spirits. We got to pet a bunny and an adorable Newfie named Cora. Beautiful dog with eyes like DaBing. I miss my pups very much! Had another wonderful friend visit and bring James the cutest stuffed dog ever. Think we'll name it Porter... :) We're gettin a little sick of vitals being taken. I'm having to put my foot down and not let them be taken in the middle of the night. Most of the nurses know us really well by now and work with us. I also think they realize we're not idiots. Our nurse tonight didn't seem to have the same confidence. She wants to weigh him at 6 am...before he even wakes up. Yeah...thats good for the kid. She's also sort of acting like we are new here...which we aren't. lol We'll see, but we're pretty good at picking good ones. When they walk in the room and take 5 min of cleaning the dry erase board before introducing themselves...weirdo. Loving all the nursing students here though. They have been great and James loves testing how fast he can get them to do his vitals. hehe
Think gtube is officially scheduled for tues. Guess that might not sound official, but I think thats as good as we'll get til the date gets closer. Hopefully soon he'll have a few hours off the tpn to run around unleashed. It's getting hard to chase him with an iv pole!!
Think gtube is officially scheduled for tues. Guess that might not sound official, but I think thats as good as we'll get til the date gets closer. Hopefully soon he'll have a few hours off the tpn to run around unleashed. It's getting hard to chase him with an iv pole!!
Monday, April 12, 2010
Monday
Made it through another day! Finally got of isolation and got to run (literally) around the halls. Tom was here all day and i left the hospital for the first time. Might have done slight and unnecessary damage at Old Navy. It was great but I was glad to get back to my boys.
We made the decision to put the gtube in while James is still on tpn. Looks like we will do it next week. Then we will stay here around 5 days after that at least. I am not thrilled about surgery, obviously, but this will absolutely protect James whenever he gets sick and hopefully advance his therapy. We are having the tube put in surgically rather than through an endoscopy because he is so small. It is a longer recovery, but they put the button in right away rather than having a long tube for 6 weeks. What I didn't know is that he cannot eat for 72 hrs after placement. O.M.G. I am now completely dreading this. I mean, I understand---there will be a hole in his stomach so you shouldn't eat right away. And thankfully he is on tpn, so I'm not worried about nutrition, but I'm just preparing myself for 4 days of crying and signing for milk and me saying no. Lets remember---I dont say no to food when it comes to James...
We made the decision to put the gtube in while James is still on tpn. Looks like we will do it next week. Then we will stay here around 5 days after that at least. I am not thrilled about surgery, obviously, but this will absolutely protect James whenever he gets sick and hopefully advance his therapy. We are having the tube put in surgically rather than through an endoscopy because he is so small. It is a longer recovery, but they put the button in right away rather than having a long tube for 6 weeks. What I didn't know is that he cannot eat for 72 hrs after placement. O.M.G. I am now completely dreading this. I mean, I understand---there will be a hole in his stomach so you shouldn't eat right away. And thankfully he is on tpn, so I'm not worried about nutrition, but I'm just preparing myself for 4 days of crying and signing for milk and me saying no. Lets remember---I dont say no to food when it comes to James...
Sunday, April 11, 2010
Sunday
Somehow we've made it to Sunday again. James woke up with a smile this am, which means so did I. He is starting to charm all the nurses and has even allowed me to shower while they sit with him. amazing. Up until now I couldnt walk 1 foot away from him, even with Tom here. The report this morning looks good. Labs are all much better but he is still on some meds to correct certain levels. He has also gained several ounces. It will take another week or so to work him up to full calories on TPN and then we have to make some decisions. We might go home and keep him on TPN for several weeks, or do g-tube right away, or do g-tube later, or some sort of combination. I like the idea of staying on TPN for a while. Pretty cool stuff.
Thats all the news thats fit to print today. Had some fun visitors yesterday. Anxiously awaiting Rachael's visit today! :)
Thats all the news thats fit to print today. Had some fun visitors yesterday. Anxiously awaiting Rachael's visit today! :)
Saturday, April 10, 2010
In answer to: 'What the heck happened?'
Sun March 28th: fever -thought it was ear infection - no big deal.
Mon: flew to dallas
Tues: still had fever - went to urgent care. no ear issues - just some sort of bug - lots going around
Wed: no more fever but stopped eating. sore throat?
Thurs: went to er at Childrens hosp in dallas. got fluids all day but they wouldnt run bloodwork and I think wanted him to go back to va. APRIL FOOLS ;)
Fri: flew home to va. spiked small fever in evening. talked to dr and decided to give motrin and go to ped office in am.
Sat: saw dr on call, j not too bad at that point. it was decided we would go home and watch him. eating and drinking a bit better. by time we got home he started staggering around. we turned right around and went to fauquier county er. they were great - ran labs, got fluids right away and admitted him. everyone very helpful and worked on getting him to uva gi docs monday.
Easter Sun: feeling better but still not eating much. Annie and Rob brought us champagne and Blooms fried chicken for Easter dinner. awesome! James chowed on chocolate.
Mon: transferred by ambulance to UVA that night. This way we could keep his iv in (fourth that week). Unfortunately, in a shared room with 6 week old baby. Nobody slept for four nights between beeping ivs, crying, screaming, pooping, and vomiting. Lovely.
Tues: Bloodwork and urine labs not looking good. Did barium swallow study - all normal. Kidneys affected by malnutrition and dehydration (yep, can happen that fast on a kid like James, even though we'd been at drs from the beginning of this illness), or maybe underlying kidney problem - rare and scary syndromes listed. Placed NG tube that night (tube down nose into stomach). Absolutely horrible to see especially when it is the one thing we really wanted to avoid, but was absolutely necessary to get some nutrition in him. Gagged and vomited twice, but did drink some of bottle with it in too, so that was encouraging. new iv, infiltrated, finally just left him alone for night.
Wed: another terrible and terrifying day. Barely ate all day. Mood severly affected by tube. laid in my arms all day barely moving. Ran more blood/urine labs. Unchanged or worse results. consulted with renal docs. Finally got good iv tech to get iv in. Began PPN - peripheral in nutrition. having doubts about ng tube. Worried about demeanor (all of ours really). Vomited overnight twice due to NG.
Thurs: had less labs to do today but still very grim day. Still not eating well and I decided he wasn't gaining anything by having NG tube except being miserable. Decided to put PICC line in fri to give TPN, which can give total iv nutrition and even allow him to gain weight.
Fri: decision made to remove NG tube during PICC placement. Down to radiology in am. Got my first break when he went under general but had no appetite and no idea what to do with myself, so I got an oreo shake and walked around, then ended up falling asleep in a tiny chair in the recovery room waiting for james. All went well. Brought j back to room and he turned into a new man. playing, wagon ride, books, finally smiled. Ate better. Docs all happier. started tpn that night and got moved to a private room due to funny story with infectious disease people but we r not complaining and neither is our old roommate. finally got a couple of consecutive hrs of sleep.
Sat - today: ate better in am. still has gurgly tummy. much more interactive and playful. Clearly he's napping right now. will being working up to full calories on tpn. Going to be here for a while yet, but not sure how long. Cant wait for monday when tom can spend all day with us.
UVA has been amazing. We have a team of about 25 doctors from different specialties all working to figure out what happened. Theory looking a little more towards nutrition rather than underlying kidney or absorption issues, but not completely sure yet. James' overall attitude is so much better and I no longer burst into tears when perfect strangers politely ask how I am. We have had some wonderful friends visit and send gifts, and, most importantly, prayers. I can't thank you all enough and please keep those prayers coming! The support has meant more to us than I can properly express. Once James is fully stabilized then surgeons will place the G-tube we had originally scheduled for yesterday before all hell broke loose. I will keep updates on here and hopefully they are very very boring!
Mon: flew to dallas
Tues: still had fever - went to urgent care. no ear issues - just some sort of bug - lots going around
Wed: no more fever but stopped eating. sore throat?
Thurs: went to er at Childrens hosp in dallas. got fluids all day but they wouldnt run bloodwork and I think wanted him to go back to va. APRIL FOOLS ;)
Fri: flew home to va. spiked small fever in evening. talked to dr and decided to give motrin and go to ped office in am.
Sat: saw dr on call, j not too bad at that point. it was decided we would go home and watch him. eating and drinking a bit better. by time we got home he started staggering around. we turned right around and went to fauquier county er. they were great - ran labs, got fluids right away and admitted him. everyone very helpful and worked on getting him to uva gi docs monday.
Easter Sun: feeling better but still not eating much. Annie and Rob brought us champagne and Blooms fried chicken for Easter dinner. awesome! James chowed on chocolate.
Mon: transferred by ambulance to UVA that night. This way we could keep his iv in (fourth that week). Unfortunately, in a shared room with 6 week old baby. Nobody slept for four nights between beeping ivs, crying, screaming, pooping, and vomiting. Lovely.
Tues: Bloodwork and urine labs not looking good. Did barium swallow study - all normal. Kidneys affected by malnutrition and dehydration (yep, can happen that fast on a kid like James, even though we'd been at drs from the beginning of this illness), or maybe underlying kidney problem - rare and scary syndromes listed. Placed NG tube that night (tube down nose into stomach). Absolutely horrible to see especially when it is the one thing we really wanted to avoid, but was absolutely necessary to get some nutrition in him. Gagged and vomited twice, but did drink some of bottle with it in too, so that was encouraging. new iv, infiltrated, finally just left him alone for night.
Wed: another terrible and terrifying day. Barely ate all day. Mood severly affected by tube. laid in my arms all day barely moving. Ran more blood/urine labs. Unchanged or worse results. consulted with renal docs. Finally got good iv tech to get iv in. Began PPN - peripheral in nutrition. having doubts about ng tube. Worried about demeanor (all of ours really). Vomited overnight twice due to NG.
Thurs: had less labs to do today but still very grim day. Still not eating well and I decided he wasn't gaining anything by having NG tube except being miserable. Decided to put PICC line in fri to give TPN, which can give total iv nutrition and even allow him to gain weight.
Fri: decision made to remove NG tube during PICC placement. Down to radiology in am. Got my first break when he went under general but had no appetite and no idea what to do with myself, so I got an oreo shake and walked around, then ended up falling asleep in a tiny chair in the recovery room waiting for james. All went well. Brought j back to room and he turned into a new man. playing, wagon ride, books, finally smiled. Ate better. Docs all happier. started tpn that night and got moved to a private room due to funny story with infectious disease people but we r not complaining and neither is our old roommate. finally got a couple of consecutive hrs of sleep.
Sat - today: ate better in am. still has gurgly tummy. much more interactive and playful. Clearly he's napping right now. will being working up to full calories on tpn. Going to be here for a while yet, but not sure how long. Cant wait for monday when tom can spend all day with us.
UVA has been amazing. We have a team of about 25 doctors from different specialties all working to figure out what happened. Theory looking a little more towards nutrition rather than underlying kidney or absorption issues, but not completely sure yet. James' overall attitude is so much better and I no longer burst into tears when perfect strangers politely ask how I am. We have had some wonderful friends visit and send gifts, and, most importantly, prayers. I can't thank you all enough and please keep those prayers coming! The support has meant more to us than I can properly express. Once James is fully stabilized then surgeons will place the G-tube we had originally scheduled for yesterday before all hell broke loose. I will keep updates on here and hopefully they are very very boring!
Sunday, April 4, 2010
left handed update
unlike the compliment, this is meant literally. i'm holding james in my right arm in a hospital bed for our second consecutive night -- third in a week. so please excuse a complete lack of capitalization and a disregard for any sort of errors. i am strongly right handed. its a growing experience. anywho---here's the update:
last week we decided to go ahead with the feeding tube. he has been so active this month that he hasnt gained any weight. fortunately it got scheduled for this coming friday. unfortunately james got sick last week with something, stopped eating, and ended up at a dallas er on fluids. we flew home the next day only to have him spike a temp and end up in the er here on sat (again--fauquier hosp = awesome). we will be here for the foreseeable future. the docs here will work to see if anyone can put the tube in before fri. or we might stay here all week til fri and we can go down to uva. or.....something. for now we sit...and wait for visiters?
last week we decided to go ahead with the feeding tube. he has been so active this month that he hasnt gained any weight. fortunately it got scheduled for this coming friday. unfortunately james got sick last week with something, stopped eating, and ended up at a dallas er on fluids. we flew home the next day only to have him spike a temp and end up in the er here on sat (again--fauquier hosp = awesome). we will be here for the foreseeable future. the docs here will work to see if anyone can put the tube in before fri. or we might stay here all week til fri and we can go down to uva. or.....something. for now we sit...and wait for visiters?
Saturday, March 27, 2010
'It's ultimately up to you'
Has a parent ever heard a more assanine statement when it comes to their child's health? I mean, I know that it is true, but there are times when you just want a doctor to tell you what to do and what is the best thing for your child. I'm sick of political correctness and fear of lawsuits, although I certainly feel for all medical professionals. A feeding tube has been recommended for James and we've been battling the decision for a couple of months now. The most difficult part is that the decision is...'ultimately up to us'. Boo. Oddly enough, that's sort of always been a problem with James. He skates right on the line between not sick enough for real proactive interventions (except for minor ones) but not healthy enough for us to go about our lives. His weight gain is okay as long as nothing else interferes with it. Um...that's pretty tough with toddlers. Everything interferes with, well, everything. :) Lately he has been nice and healthy, but the weather has been nice so we have been running around outside all day long. Great for sensory, not great for weight gain. Aargh. We'll see.
Friday, March 26, 2010
dorky enjoyments
When you live in the middle of nowhere (as my friend Carly pointed out when she tried looking up our house on Google Earth and couldn't find anything but grass and trees), you spend many days without seeing...other people. I see Tom morning and night, I see James all day and all night, and sometimes that's it...for a while. As most people with kids know, talking on the phone while they are awake is sometimes more trouble than it's worth (how do they know when we're multi-tasking??). And since I have to hold James while he's sleeping, I can only text then (I'm a good texter--just ask Tessa of www.noguamnoglory.com - one of my absolute fav blogs written by one of my absolute fav cousin in laws/Jame's Godmother, wife of one of my absolute fav cousins who is fighting for our freedom in the Navy, AND who is having a 'giveaway' on her blog prompting me to plug her to win something cool---but honestly, read her blog, it's amazing).
So my dorky enjoyments are all the things people make fun of. I text, which is probably annoying to others; I love facebook, I don't care how many people make fun of it; I read select blogs, I read romance novels on my Kindle, and I love Twilight and New Moon, even though the movies are not as good as the books. I watch them over and over again anyway. See, super dorky and I love every second of it!
So my dorky enjoyments are all the things people make fun of. I text, which is probably annoying to others; I love facebook, I don't care how many people make fun of it; I read select blogs, I read romance novels on my Kindle, and I love Twilight and New Moon, even though the movies are not as good as the books. I watch them over and over again anyway. See, super dorky and I love every second of it!
Friday, March 19, 2010
Tricks of the trade
I've learned so many tricks to help with eating problems, oral aversions, oral defensiveness (picky eater doesn't begin to describe it). I mean, the only thing the kid will regularly put in his mouth is water or ice. In fact, ice is one of the best words he says (unless he really means ass, but I think it's ice). Anyway, I thought I would share/document some of the ideas that I have either come up with myself or stolen from someone else. If this can help anyone get some calories in their kid or get a child interested in food, I'd be very very happy. I'll probably have to add to this at some point, cause I'll forget something crucial, but it's a start.
-popsicles, popsicles, popsicles. I've made lots of different kinds (most recent with coconut milk, yogurt, and frozen berries). His favorite is a water popsicle, of course. One thing that a therapist will tell you is to try to get your child to chew on toys (that's how we all learned to eat). But as kids get older, they're just not as into it. So I made tiny juice popsicles with all the therapy toys (chewy tubes, bumpy spoons, Nuk brushes, etc). I cut the corner off a plastic bag, popped the toy in, poured a little juice in it, then stuffed it into either a popsicle mold or ice cube tray. It was great. The popsicle didn't last too long, and before he knew it, James was sucking on a chewy tube. Sneaky.
-ice cubes, of course. On our therapist's suggestion, we would put juice ice cubes in water, and then as they slowly melted, James would end up drinking some juice/water with flavor. Eventually we added more and more juice and now he will drink juice (although he has unfortunately learned the word water. bummer). What I have not been able to get him to do is drink his formula from anything but a bottle. As he gets older, it is important to stop using the bottle so he has the correct swallow movements, which are different when you drink from a straw or cup. I don't know why it took me so long to figure this one out, but I started making Pediasure ice cubes and putting them in water. So far so good.
-licorice. Not the most normal thing to give to a toddler, but hear me out. James still has no interest in actually chewing on a toy. He wants food...sort of. So you take Red Vines licorice (very important--no substitutes) and you leave the package open for about 2 days. Stale licorice is basically impossible to bite through (although you should keep an eye on them), but it tastes good and kids tend to gnaw on it.
-back to ice cubes. James hates a yogurt type texture. But he loves ice cubes so much, that if you put an ice cube in some yogurt, he will pick it up, get his hands messy, and lick the ice cube, getting lots of yogurt in his mouth.
-sugar. He also loves sugar. Not as much as ice cubes, but still. Sprinkle colored sugar next to yogurt and get his hands messy, and before you know it, he's pinching up some sugar with yogurt on his hands. Great.
-kit kat. Chocolate is a big hit, and kit kats are great because they easily break into a stick, and then he can place it between his molars.
-straw in a bottle. Okay, this didn't actually work, but I still think it was a valiant effort and might have worked if James didn't have such good eyesight. I took one of his normal bottles, cut a hole in the nipple, and stuck a soft, clear straw through it in hopes that he would start to suck the straw at bottle time. He saw it and threw a fit. But I still think it could work...somehow.
-hide stuff in water. He loves water so much, I can mix his fish oil and melatonin in a little water and he drinks it right down. There's no way I'd be able to dose him with medicine otherwise.
-ignore. Sometimes I give James a spoon with something (like yogurt, mashed potatoes, etc) on it and then turn my back and pretend not to watch. Can work like a charm.
-learn by example. Well, I eat all the time. All the time. And I'm with James all the time. All. The. Time. I figure he must be picking up something that I've been doing, but we'll see.
-popsicles, popsicles, popsicles. I've made lots of different kinds (most recent with coconut milk, yogurt, and frozen berries). His favorite is a water popsicle, of course. One thing that a therapist will tell you is to try to get your child to chew on toys (that's how we all learned to eat). But as kids get older, they're just not as into it. So I made tiny juice popsicles with all the therapy toys (chewy tubes, bumpy spoons, Nuk brushes, etc). I cut the corner off a plastic bag, popped the toy in, poured a little juice in it, then stuffed it into either a popsicle mold or ice cube tray. It was great. The popsicle didn't last too long, and before he knew it, James was sucking on a chewy tube. Sneaky.
-ice cubes, of course. On our therapist's suggestion, we would put juice ice cubes in water, and then as they slowly melted, James would end up drinking some juice/water with flavor. Eventually we added more and more juice and now he will drink juice (although he has unfortunately learned the word water. bummer). What I have not been able to get him to do is drink his formula from anything but a bottle. As he gets older, it is important to stop using the bottle so he has the correct swallow movements, which are different when you drink from a straw or cup. I don't know why it took me so long to figure this one out, but I started making Pediasure ice cubes and putting them in water. So far so good.
-licorice. Not the most normal thing to give to a toddler, but hear me out. James still has no interest in actually chewing on a toy. He wants food...sort of. So you take Red Vines licorice (very important--no substitutes) and you leave the package open for about 2 days. Stale licorice is basically impossible to bite through (although you should keep an eye on them), but it tastes good and kids tend to gnaw on it.
-back to ice cubes. James hates a yogurt type texture. But he loves ice cubes so much, that if you put an ice cube in some yogurt, he will pick it up, get his hands messy, and lick the ice cube, getting lots of yogurt in his mouth.
-sugar. He also loves sugar. Not as much as ice cubes, but still. Sprinkle colored sugar next to yogurt and get his hands messy, and before you know it, he's pinching up some sugar with yogurt on his hands. Great.
-kit kat. Chocolate is a big hit, and kit kats are great because they easily break into a stick, and then he can place it between his molars.
-straw in a bottle. Okay, this didn't actually work, but I still think it was a valiant effort and might have worked if James didn't have such good eyesight. I took one of his normal bottles, cut a hole in the nipple, and stuck a soft, clear straw through it in hopes that he would start to suck the straw at bottle time. He saw it and threw a fit. But I still think it could work...somehow.
-hide stuff in water. He loves water so much, I can mix his fish oil and melatonin in a little water and he drinks it right down. There's no way I'd be able to dose him with medicine otherwise.
-ignore. Sometimes I give James a spoon with something (like yogurt, mashed potatoes, etc) on it and then turn my back and pretend not to watch. Can work like a charm.
-learn by example. Well, I eat all the time. All the time. And I'm with James all the time. All. The. Time. I figure he must be picking up something that I've been doing, but we'll see.
Glass half full...
...of wine, I hope.
I complain on my blog a lot, but I do hope it's funny complaining. It's meant to be. I'm a firm believer that if you can't laugh about something, you're not going to make it. There are ways to help though. Nights tend to suck for me. Even if they end up being okay, they're full of the unknown (haunted house theory), so they are stressful. Sometimes during an early early early morning feeding, I sort of just wish it were morning so the night was over. BUT, what marks the end of my day is rocking James to sleep after his lavender bath, brushing, deep pressure massage, and bottle (we should all be so lucky), and I have a lovely all the way full glass of wine. Sometimes we're out of wine and I have tea, but it's seriously not the same. I love my wine.
Monday, March 15, 2010
drugs :)
Okay, before I go into the latest thing we're trying, I need to properly express our sleeping arrrangements for the past 21 months.
Well, in short, hit or miss. James has never slept through the night, but he used to sleep for a few hours at a time in his own bed. At about 9 months, all hell broke loose and from that time until he was almost a year, I could never ever put him down when he was sleeping. It sucked. We went back to swaddling, started the brushing protocol, and then I could put him down sometimes for a few hours. It takes about an hour to rock him to sleep, feed him, and get him put down on a normal and good night. Our methods have varied over the past 10 months or so, and we now have a pretty good nighttime routine that works 55% of the time. When James wakes up crying, you have to understand that it is not whiney crying, or sniffling, or talking. He wakes up with bloodcurdling screams and cries. It's sort of like spending my evenings in a haunted house waiting for someone to jump out at me and, well, scream. I go through phases where I can't even fall asleep at night until he wakes up crying and ends up flaked out across my stomach (honestly, sometimes it's like I'm still pregnant).
So. I've tried everything, I've taken criticism and swallowed it, I've cried, I've thought about driving out my driveway...alone (but only briefly and maybe we'll call it fantasizing...). I started researching Melatonin, oddly enough from something our friend and wonderful doggie vet was talking about. The first research I did was not vey supportive until I started googling Melatonin with Sensory Processing Disorder. Bingo. It's everywhere and seemingly the results are positive. Certainly nothing negative in very low doses. In fact, some studies have shown that sensory kids and children with autism may not produce enough melatonin in their brains, therefore using some as a supplement could be beneficial. I was very very wary, because I don't like to medicate, and I'm so not into any side effects. But I got the dosage from our pediatrician, went to the healthfood store, and gave it a whirl. I can say the the very fact that I am trying this means that I truly can't take it anymore. I've been at the end of my rope for a really, really, .....really long time. I'm basically hanging on floss, which is surprisingly strong. Anyway, I gave him 1/2 of even what the doctor recommended just to try it and all I can say is that he's been sleeping in his own bed for the past 1 1/2 hours and I haven't put him down in over a week (sometimes I just go to bed with him cause I'm tired and I'm not mentally up for the yelling). We'll see how it works...I try to keep low expectations, and obviously he still has to wake up and eat, but some quiet and anxiety free evening would be pretty amazing!
But I sort of post all this cause I read so much online of random people criticizing others for trying melatonin as a sleep aid. BTW, it helps to normalize sleep patterns. Look, I'm sure it could be misused, but evidently if you give your child too much, it just makes them hyper, so who would do that? And obviously you should consult your doctor and it shouldn't be used for kids misbehaving...only for serious issues. My point is that you don't know what sort of things another person is going through and not all sleep problems are solved by rice cereal and shutting the door on kids crying. Going three months with no sleep with an infant is tough, but not in the grand scheme of things. And I know there are parents that go years and years with kids with disabilities and don't sleep. Well, I fall in the middle and I know it will get better someday, but it's not gettin better yet and it's hard. So if I can safely find a little bit of help, I'll take it and enjoy it!
Well, in short, hit or miss. James has never slept through the night, but he used to sleep for a few hours at a time in his own bed. At about 9 months, all hell broke loose and from that time until he was almost a year, I could never ever put him down when he was sleeping. It sucked. We went back to swaddling, started the brushing protocol, and then I could put him down sometimes for a few hours. It takes about an hour to rock him to sleep, feed him, and get him put down on a normal and good night. Our methods have varied over the past 10 months or so, and we now have a pretty good nighttime routine that works 55% of the time. When James wakes up crying, you have to understand that it is not whiney crying, or sniffling, or talking. He wakes up with bloodcurdling screams and cries. It's sort of like spending my evenings in a haunted house waiting for someone to jump out at me and, well, scream. I go through phases where I can't even fall asleep at night until he wakes up crying and ends up flaked out across my stomach (honestly, sometimes it's like I'm still pregnant).
So. I've tried everything, I've taken criticism and swallowed it, I've cried, I've thought about driving out my driveway...alone (but only briefly and maybe we'll call it fantasizing...). I started researching Melatonin, oddly enough from something our friend and wonderful doggie vet was talking about. The first research I did was not vey supportive until I started googling Melatonin with Sensory Processing Disorder. Bingo. It's everywhere and seemingly the results are positive. Certainly nothing negative in very low doses. In fact, some studies have shown that sensory kids and children with autism may not produce enough melatonin in their brains, therefore using some as a supplement could be beneficial. I was very very wary, because I don't like to medicate, and I'm so not into any side effects. But I got the dosage from our pediatrician, went to the healthfood store, and gave it a whirl. I can say the the very fact that I am trying this means that I truly can't take it anymore. I've been at the end of my rope for a really, really, .....really long time. I'm basically hanging on floss, which is surprisingly strong. Anyway, I gave him 1/2 of even what the doctor recommended just to try it and all I can say is that he's been sleeping in his own bed for the past 1 1/2 hours and I haven't put him down in over a week (sometimes I just go to bed with him cause I'm tired and I'm not mentally up for the yelling). We'll see how it works...I try to keep low expectations, and obviously he still has to wake up and eat, but some quiet and anxiety free evening would be pretty amazing!
But I sort of post all this cause I read so much online of random people criticizing others for trying melatonin as a sleep aid. BTW, it helps to normalize sleep patterns. Look, I'm sure it could be misused, but evidently if you give your child too much, it just makes them hyper, so who would do that? And obviously you should consult your doctor and it shouldn't be used for kids misbehaving...only for serious issues. My point is that you don't know what sort of things another person is going through and not all sleep problems are solved by rice cereal and shutting the door on kids crying. Going three months with no sleep with an infant is tough, but not in the grand scheme of things. And I know there are parents that go years and years with kids with disabilities and don't sleep. Well, I fall in the middle and I know it will get better someday, but it's not gettin better yet and it's hard. So if I can safely find a little bit of help, I'll take it and enjoy it!
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