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.

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.

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.

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!!!!

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.

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!

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!

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!!

Can't stop squeezing chubby thighs!

Not my own, mind you. But...you know....

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...

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 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

-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

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!!

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...

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! :)

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!

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?