I believe the last time we updated this blog we were just getting little Haven settled at home and Angel was on a quick road to recovery. Haven is now going on her 4th week of life and things with Angel have hit a significant snag. His bowel has not tolerated formula feeds and has now gone into a generalized illeus with significant nausea and vomiting. He had a CT that confirmed the generalized psuedo-obstruction pattern that is throughout his small intestines as well as a fluid collection that is contributing to the obstruction in the lower intestine. The fluid they feel is a result of bleeding after the scope and biopsies that were done in the intestine last week. This fluid collection should resolve with time unless it is more complicated than we are aware. He is also being continually worked up for infection as they feel confident that rejection is not an issue as of right now. He has been taken off feeds for strict bowel rest and is back on TPN. His outputs (diarrhea) have continued and are much higher than they should be. We will slowly reintroduce formula feeds over the next few days and will hopefully get back on track for a discharge in the next couple of weeks.
We have now passed our 50th day here at the hospital. The GI team feels that though the bowel is not infected and continues to be rejection free, it is not function appropriately and it may be due to the poor nerve innervation post transplant. They reassure us this should also improve with time. We will be here at the hospital for at least another week or two and will need to continue to stay in and around the hospital through October.
Over all our family has been hanging in and functioning on survival mode. I usually spend 18hrs a day with Angel and have stayed 45 nights with him so far. As a family we spend a couple of hours a day together in Angel’s room or in the playroom. Today Angel walked Haven in her stroller trying to soothe her to sleep. He really enjoys the time she is here with him. This week Angel has also started in-hospital school which is for about an hour a day. This has been really great for him as it gets him focused on something he enjoys and also provides positive feedback for doing soo well.
Both Sarah and I have had time together thanks to our wonderful parents. The Moms have taken turns with staying with us during this time. The Dads have also contributed their time to be available. We would not be who we are with out these amazing people who have given of themselves. THANK YOU!! Moms and Dads.
I will attempt to keep this blog more updated over the next couple of weeks. We are thankful for all of your support and prayers and we know that God has and will continue to uphold us and strengthen us during this time.
I added this picture of Angel with Haven, as he loves to hold her during her visits.
3 comments:
thank you for taking the time to update, I know your time is precious. My family and I continue to keep you in our thoughts and prayers. <3
We think of Angel daily..today is no different. How is your little boy? Rich and Jenny from SLT
Hi Angel (and family too)! I hope you feel better soon. It's the pitts feeling sick. You are an amazing boy and so strong that you are a BIG inspiration for me. You are a super hero in real life, you're MY super hero! I'm going to be at Cedars on Friday and I'm not sure how long I'll need to stay, but I've been thinking that it would be fun if we could wave to each other across town from our rooms ; ) Your friend, Tyler Bailey
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