Wednesday, May 19, 2010

Wednesday: James Update

Hi Everybody,

Thank you sooo much for your prayers! We've definitely needed them over the last few anxiety-filled days with James. They took him into surgery on Tuesday at 10:00am, they were done around 2:00pm and then we had to wait until 4:00pm while they put in an epidural for pain management, a urine catheter, and monitored him in the recovery room. I think I was actually more anxious during the wait from 2-4pm, just wanting to see him! The day seemed to take forever. My mom, our friend Bonnie and our friends Jason & Cheryl held vigil with us in the waiting room for most of the time, so it was nice to have physical support during that time! We are holding up pretty well emotionally, now that the dreaded surgery is over. Now we're just taking it day by day, trying to get through this hospital stay and get our little guy back home.

Our surgeon was very happy with how James did during the surgery, but once we got back to our room, he started having some reaction to the anesthesia and began foaming at the mouth / vomiting a bit. This is upsetting for most kids, but especially for him since he's never spit up anything in his life {nothing stays in his stomach long enough}. He calmed down after awhile and slept for most of the afternoon until about 10pm, when I had to convince the nurses to up his epidural because he was jerking his arms and legs around and causing himself pain. He literally has about 10 tubes coming out of him: nose tube that fills one whole nostril {for draining the blood, etc. in his stomach, since his bowels are still asleep}, central IV line for his TPN, urine catheter, monitors for his heart rate / oxygen / respiration, G-tube directly into his stomach. He has these long cuffs around each arm so that they are somewhat immobilized {to keep him from pulling out his tubes}, which he's of course already found a way around. That's my stinker boy! :-) His pain seems to be pretty well controlled, but it's hard to tell why he's fussy sometimes...pain, hunger {he hasn't had anything to directly eat/drink since midnight on Monday}, discomfort from being immobilized in his bed, frustrated about why we aren't picking him up and holding him, not being able to get restful sleep, etc. I'm actually anticipating that each day will get a little bit worse, since he'll become more alert and aware of what's going on.

We saw Dr. Moyer, James' GI doctor, and she gave us some hope in terms of James coming off TPN one day. She said she's had kids that only have 15 cm of short bowel {James now has 35cm} go on to regulate themselves and be able to come off TPN within a year or there's hope! She was glad there wasn't any damage to the valve between the short/large intestines, since the health of that valve and the length of the short intestine are big indicators of future success in terms of nutrition, absorbtion, etc. Not to say that James might not need a bowel transplant in the future {Seattle would be the closest place}, but that would be years down the line, most likely. And with the power of prayer, there's no telling what wonderful things could happen! One of our home nurses told us about a 2 year old boy who's been on TPN since birth and was on a double-transplant list, in need of new bowels and a new liver. But suddenly his labs improved drastically and now he's been taken off both lists and is doing great! Those are the stories we like to hear! :-)

On Monday night we unfortunately got a roommate. The rooms are pretty small, so in order to fit two fold-out cots in the room for the parents to sleep on you have to shove everything else up against the walls and then the two cots are in the middle, touching with just a curtain in between. A lovely arrangement! Luckily, the family was very nice and their 3-week old baby girl was very well behaved, but each night our two babies have taken turns crying and having alarms going off and the mother of the baby snores like a trucker {she later told me she has sleep apnea}, so there's not much sleep to be had. The little baby girl is very sweet, but they are running tests on her because she randomly quits then everyone panics and there's lots of commotion. I hope they can figure out what's wrong with her soon. How scary to never be able to leave your child's side, even for a minute, because they might stop breathing and turn blue!

Keith and I are taking turns staying the day/night with James, so tonight is my night to sleep at home in my own bed--yay for peace and quiet! {And hopefully more sleep than the 2am-5am I got last night!} When I saw my boys at 7:00 tonight, the other family had been moved to a new room so he had space all to himself. Please pray that this can continue for the next couple of nights...I know it's selfish, but it would be a big boost to James' recovery if he can have some uninterrupted sleep {well, as much as can be had in a hospital setting!} James was uncomfortable and in some pain when I left, so I'm hoping the nurses can get it under control and that both my boys can have a peaceful night.

We'll try to either send out an email update or put up a blog update each day so that people can follow along and know how to pray for us. Thanks for everybody's support!

P.S.--I'm not sure how well it's going to work having visitors at the hospital. We try to keep the room very quiet and there's not much space, so we'd have to leave the room to be able to do much more than stand and whisper. Perhaps by Friday or the weekend things will be better...we'll just play it by ear. Also, my cell doesn't get any coverage in the hospital, but feel free to leave me a phone message or email and I'll check those daily.


Anonymous said...

Hon, Just had to tell you I have logged on several times today just to see the picture of James on your Monday post. His adorable grin makes me want to hug my computer:) What a beautiful boy you have, and what incredible parents he has!! Love you, Proud Nana

Christine said...

Thanks for the update! I'm so glad to hear there's no roomie tonight {of course, roomies aren't always so bad ;)} and your boys can get some rest. Hope you're sleeping away now. Can't wait for the next update. We're praying! xo

Anonymous said...

Praise God for a smooth surgery! We sure live you guys and that sweet baby boy. We'll continue to pray - love you, Dana

oleyfriends said...


I wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

Check out our web site at For a good overview, click on the "New to Oley" button.

Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY

Jody Schwing said...
This comment has been removed by the author.
Jody Schwing said...

Kendy and I have changed our prayer cards to include James and your whole family from Tuesday's to Daily. We visit your blog often and enjoy your updates and pictures. Thank you for giving us the opportunity to witness your amazing faith and examples of extraordinary gifts of love.

Benjamin Billups said...

Lisa-I am so glad for your good update. We are praying for you all, including Maddie and Mom and Dad. I would love to help in any way next week but will wait until you are ready. I know it will take time to recover too. Love you SO much dear friend.

Benjamin Billups said...

Lisa-The Ben comment was from ME, Heather. We are on vacation until tomorrow and I have been using his computer :) I will wait until next week to hear on your needs and how you are holding up. I am praying for you ALL. Love you!

Anonymous said...

We love your posts Lisa. It is good to know how to pray for you and your family. We will continue to uphold you in our prayers. Your son is beautiful! Kathy & Steve