Well after yesterdays great day we had a minor setback today. Gabriel has chylis which is from the portal vein that runs from the stomach carrying fat to somewhere near the heart. Apparently the vein was nicked during surgery and it is draining into his chest cavity and out his chest tube whenever he eats.
They put him on a special diet that does not contain any fats in the hopes that the vein will repair itself over time. If it works they will know in a couple of days, he will have to be on the diet for 60 days no matter what. If this does not work there will be several steps over the next few days trying to get it to heal on its own. Worst case: he will need to have surgery to put a stitch in the vein to close the cut. Time is going to tell. They can not take the right chest tube out until they are sure he is not leaking into his chest cavity anymore. This could be days or a few weeks. He can not go home until the chest tube is out.
Gabriel had a rough day. He is completely off morphine they are using Tylenol and advil to try to control his pain. Poor kiddo went from being a zombie to being in tears each time he moves. We moved to the step down unit and have to wait FOREVER to even get those meds. It is so hard to see him in so much pain!
We have checked out of the hotel. We are going to figure out how to work this all out. With the step down unit only one person is allowed to sleep in his room. We are thinking Gabe might just switch back to work time and be awake 3rd shift. We don't know yet but we do know that we are NOT leaving him alone. His cry isn't aloud enough to leave him by himself! Off we go to try to get some more meds for Gabriel so he can sleep.
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I'm sorry to hear about this set back but I will continue to pray for Gabriel!! He will get through this. I know that I have not been where you are but I will be there soon and I'm thinking of you and your family! Stay strong!
ReplyDeleteHang in there...I cannot imagine how frustrating today was. We will pray that the problem heals itself quickly. Is there not a Ronald McDonald House in Ann Arbor? I know what you mean about not wanting to leave him, Jim and I took turns but we had a room to go back to. Take care.
ReplyDeleteHi there, I learned about your blog from the Babycenter board. My son Myles is 6 months and had his AV Canal defect repaired when he was 10 weeks old. He also developed a chylothorax. I am guessing that they are feeding Gabriel portagen or some similar brand formula. Hopefully this will work right away for you guys, but we had a different experience. We started Myles on portagen, but the drainage did not stop, so he got a Pic line and was on IV nutrition for awhile. We went home on portagen, but he refused to eat it (it is nasty tasting), so we had to put his NG back in and give him the food that way. Unfortunately, the fluid started to accumulate again and we were hospitalized two weeks after our original discharge. They put in another chest tube and Myles was on and off food two or three other times during this hospital stay because the chylo was not healing. We did some research and found other families who had fed their children skimmed breastmilk instead of portagen (sounds crazy, I know). After much advocating our doctors approved this and it worked for Myles. He was on a non-fat diet for 6 weeks after our last discharge and healed up really well. Please email me if you guys have questions or want to know more about our experience. In our case it was not a scary or threatening complication, but very frustrating and kept Myles in the hospital a lot longer than we expected. Hang in there! gilbyandjocelyn@hotmail.com
ReplyDeleteHi Erin,
ReplyDeleteDeja vu all over again...
Lily too developed a chylothorax. I guess it happens sometimes, but how is the world did our two little ones get so "lucky".
Lily's healed on it's own after 6 weeks on Portagen (which by the way is quite expensive). Lily was still allowed to have rice cereal, but we had to find one that was fat-free. Gerber's isn't. Beechnut makes one that isn't fat-free but Lily didn't like it. I found an organic one that was fat-free and Lily liked. Talk to your cardioligist to make sure it's ok to give G cereal though.
As far as the pain you little man is in...that's crap! I totally understand why they wanted to get him off the morphine. However, there are other stronger things that they could be using then Tylenol and Advil!!! If they insist on that regimen, keep a close record of the next time Gabriel needs his meds and which one. Call a nurse a half an hour prior to dosage time. I know in our step-down unit, it also took forever to get a nurse. It's not really their fault...too many patients! Not to tell you what to do, but be a forceful advocate for Gabriel...he should NOT have to be in pain. It's bringing tears to my eyes thinking of that sweet little boy in pain!!
As far as your sleeping situation. Yep, someone should be with G at all times. Is there a Ronald McDonald House? It's an inexpensive option for the other person if there is.
Hang in there. I know that the chylothorax is disappointing, but compared to everything Gabriel has been through...well, you get what I mean. I'll be praying that it heals on its own and that they can get his pain under control!
GRRRRRRR...I should have read that before posting...sorry for the poor grammar and misspelled words!!!
ReplyDeleteHey Erin - I might be able to help you with the place to stay if you still need one. Give me a call if you still need somewhere to sleep & shower. I'm at home today 269-382-4389.
ReplyDelete