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


  1. Hello Clare:
    I wanted to write earlier... I had to get one of the YOUNG GUNS in our office to help in setting up an account.
    I've read all that you have written about James and it goes without saying.. Our thoughts and prayers are with you, Tom and James.
    Clare, I have been thinking about the drip that James has going. There are a couple of thoughts that come to me.. When Michael was in the hospital being fed through a Peg-Tube we experienced simuilar problem. Michael was constantly throwing up all the time. I finally came to the conclusion that maybe the drip was dripping to fast and that his stomach was getting filled up to quickly that his stomach was not able to digest this liquid food. I then got together with the Neurosurgery Team and told them that I felt it would be a good idea to slow down the drip atleast Half way. They really didn't want to but they did and after that Michael did much better. It's like his stomach was not able to digest the liquid food fast enough. The other question that I would like to ask you Clare... Have they tried to do a Gastric Emptying Study on James? This test is to make sure that his Stomach is Emptying in the proper amount of time. Normally it takes the Stomach to Empty into the Small Intestines anywhere from 45 - 50 minutes. I had this problem for the last 14 years but with the help of Erythormycin My Stomach finally woke up and now function normal on it's own. I thought that I would share these things with you and maybe just maybe it may help to shed some light in what is going on with James. Well I know you are kept busy so I'll close for now... If you would like to talk always know that you can give me a call, OK?

  2. Thank you so much Janete! All your ideas are spot on. They did put him on Erythromicin (thanks for the spelling) and it helped some. He has thrown up at all rates of the drip, so I said we need to shorten the duration and give him a break halfway. So he'll be on it from 8pm to 1am and 2am to 5am, and then we'll start bolus feeds when he wakes up. He didn't tolerate the bolus feeds well at first, but now he seems to be doing really well with them, so we might be able to cut out more and more of the overnight.
    It's so nice to hear of other people's experiences with this stuff! Please share any advice you have!!

  3. Hello Clare:
    I'm glad to hear that James is starting to tolerate the daytime feedings.. That's a step in the right direction. I'll keep my Prayers going and my Fingers Crossed!!
    Just thinking... The reason that I asked if James doctors have done or considered doing a Gastic Emptying Study is when I was having a lot of Gastic Intestinal Problems 15 years ago and after tons and tons of testing and they still could not figure out why I was not able to keep food or anything in the stomach. This is when My Gasto Intestinal Specialist had decided to run this final test [Gastic Emptying Study]. Once the test was done we come to find out that my Stomach had become totally Paralyzed due to a medication call Deseryl. They tried me on all of the high power drugs to see if the stomach could be stimulated enough in order to digest foods. With my luck I was allergic to all that was given to me. Last resort was the Erythormycin 125 mg. 6 times a day, 30 minutes before I ate. We needed to stimulate/wake up the stomach just long enough so that the stomach would digest the food. After an hour then the stomach would go back to sleep. The million dollar question that I asked my doctor was, "Will my Stomach ever wake up on it's own"? And the answer that I got was "I Don't Know"... He said that my stomach may never wake up or to some degree it may wake up 50% and/or it may just be lazy for the rest of my life. It was an honest answer and with this answer I knew then what I had to deal with... But I never lost hope and faith that maybe someday my body would heal and it did October 2008. This happened the week that Michael had the Brain Hemerrage/Stroke.. God was really looking out for me and still is...

    Again just wondering... Do you think that at this point and time for some reason unknown that maybe James might have developed a Slow/Lazy Stomach? And that the Liquid Food just might not be empting out of the stomach fast enough. If that happens then the food spoils and this would cause James to throw up... It's just a thought....Maybe think about asking James Doctors about this... But I'm just glad that James is able to tolerate the morning feedings!! We don't need his body to start taking from the bones for norishment.
    Clare, I know you have been there in the hospital for way over a month... And I know that it can ware on you both mentally and physically... Michael was in the Hospital for 65 Days and then after that 45 days at Pate Rehabilitation and it was hard on me but I had to keep reminding my self that I had to make sure and eat well, rest well because Michael was going to need me and my stregtht when he was able to come home. So I do have a pretty good Idea on what you must be feeling... Yes, it's more than just hard... At times there were no words to explain it to people. We do what we must do in order to survive.. So Clare, each day take a very deep breath, eat well and try to get some rest but most of all continue to talk to God, OK?
    Again, if you would ever like to call me I can always be reached at PMI or you can always e-mail me at jfatz@swbell.net which in my home office computer or I will continue to read and keep up with James, You and Tom... By the way I can't wait to meet James!!!
    Hang in there Clare... There is a Light at the end of the tunnel...

  4. Janete, you are so sweet. It is nice to hear other people have gone through similar things, although I wish no one had to go through it at all!
    They did a barium swallow study on James and all was normal. He has never had a problem with vomiting previously, so they don't think gastric emptying was an old problem. As for now, he does seem to have some slow emptying, but they think it is because of his malnourishment. But because his feeds during the day are doing great and we are able to increase bolus size, it seems to just be an overnight problem. They said that some kids/people just don't tolerate the overnight feeds because it is not that natural and many many things can affect gastric emptying on a given day up to 100%, and this includes activity level. So he is on the erythromicin overnight and it does seem to help a little, but he still seems uncomfortable. Luckily, we think we can start to move away from overnight feeds to daytime bolus feeds anyway.

  5. Now that is Wonderful News!! I will continue to Pray for James.. especially for you and Tom.... Keep us posted on James progress..
    Have a Wonderful Mothers Day!!