MOVING SLOWLY AHEAD...

This past Thursday we had a team meeting for Isaiah. We discussed his pain, his anxiety, and the doctor's plan for his stay. For the most part, it was a productive meeting; however, both Chris and I still feel that the doctors don't fully believe us in regards to Isaiah's pain levels. As of right now, Dr. Collins, the surgeon, believes Isaiah will be at CHOP for another 6-8 weeks. UGH!!! His bowels are still not absorbing the nutrients and fluids necessary for him to come off of the IV nutrition (TPN/Lipids). He continues to dump out into the ostomy bag (stomach/poop bag) causing his electrolytes in his blood work to be unstable. They are trying him out on actual food by mouth to see if his gut can absorb food better than the TPN/Lipids. Plus, the Lipids are affecting his liver negatively.

So in short,
GOOD NEWS:
1. Isaiah is able to eat by mouth
2. He is up walking and playing
3. We have a time frame in regards to his hospital stay

BAD NEWS:
1. We have another 6-8 weeks at CHOP
2. His reversal surgery of the ostomy cannot be performed until he is more
medically stable and absorbing nutrients
3. He is still having pain
4. Isaiah has been having dangerous, angry meltdowns that lead him to try to hurt others and/or hurt himself by pulling off his ostomy appliances or trying to pull out his PICC (IV) line. He is like a Dr.Jekyll/Mr.Hyde. When that switch flips, Isaiah is out of control and needs to be restrained or sedated. It is incredibly frustrating for us. Usually, Isaiah is cooperative, but lately these fits have been coming more and more frequently.
5. Isaiah has significant anxiety and cannot be left alone. In the past, we have been able to leave him alone for a few hours or overnight and he is fine. Now, he becomes inconsolable if we tell him we are leaving or if he finds us gone.
6. We have spent the months of February, March, April, June, and July in a hospital or rehab setting. This has become very difficult on all of us. I think Josiah gets the worst of it, because he has to be switched from place to place, and has been separated from us the most.
7. My relationship with Isaiah is very strained because of having to be with him in restrictive quarters for the past 6+ weeks. It's incredibly hard for me at times to be around him.

Please continue to pray. We are all really struggling. We are grateful to those whom have come down or up to stay with Isaiah either during the days and/or overnights. I think it's a nice break for him and a very necessary break for us. Thank you for all your gifts and words of encouragement--they keep us going.
--Pray for Josiah with all the moving around.
--Pray for Chris as his job is in the middle of a merger with people quitting and departments being reorganized.
--Pray for my neck/back/hips. I am still having pain from the accident and do need follow up visits with doctors, but I really don't have the ability to follow through at this time.
--Pray that Isaiah's gut starts absorbing and tolerating food/nutrients, that he has fewer meltdowns and/or stays safe during his meltdowns.
--Pray for my relationship with Isaiah.
--Pray that we can go safely home sooner than later. I am missing Josiah immensely. He brings me so much happiness, and when I am not around him, my world is a bit darker/sadder. I just wish we could be home and all be healthy.
--Pray for my relationship with God. I'll admit I am angry with Him and frustrated. This situation takes a lot of strength and endurance and I am plain exhausted, as is Chris. I don't want to keep walking this path God has chosen; I want a break. Somehow, I need to trust God and give Him this whole situation so I can rest peacefully in Him. Right now, I am fighting Him because I just don't know how else to survive.