Sunday, December 11, 2011

Days 40-44

Day 40: December 7, 2011- Walker's dopamine dosage was dropped from 20 to 17.5 and his vent settings are pretty low. The pressure is 24 over 6. Supposedly one of the bugs that grew inside of Walker has a tendency to aggravate the stomach. As soon as he is on a lower dosage to completely off of dopamine, we will start feeds.

Walker was seen by the pediatric ophthalmologist.We are waiting to hear what he has to say.
Look what Krista made Walker! Can't wait to take his picture in this!

Day 41: December 8, 2011- Man I'm stressed out. Walker is fine. His stomach is funny and I just wish it would hurry up and heal or get better or whatever is happening with it, would stop. My anxiety/stress is so bad that I've scratched my legs and stomach all up. We are so ready for this kid to catch a break.

Day 42: December 9, 2011- Happy 6 week birthday, Walker!They lowered your dopamine to 10 and you aren't really having it. By the time we get back up there tonight I'm sure they will have raised your dosage. You have developed the jaundice that is effecting your liver. The doctors have suggested a new drug that is not approved by the FDA but that TCH has been using for 4-5 years and has had great results. I just don't know why God would do this to you or to us.

Day 43: December 10, 2011- Walker's dopamine was raised and then lowered. They mentioned an exploratory surgery to look at his intestines and see if there's an obstruction, rupture, or blockage. His stomach is distended and although they thought that his belly was basically sleeping, they x-rays haven't changed and they want to investigate further. When the surgeon walked in to discuss the procedure I felt like going around the room and punching her, the nurse, my mom and R because I was so upset. They keep mentioning that after surgery that he will get really sick and I hate that. I know they are preparing us but it's still aggravating.  And they I started thinking about Grey's anatomy and wondering if she was surgeon like Christina; a hungry surgeon ready to operate on anyone. We stayed the night at the Ronald McDonald House inside of TCH so we could be there in the morning.

Day 44: December 11, 2011- Horrible nights rest! I woke up every hour because I was afraid I was going to over sleep. Even with two alarms set. There was no precise time set but sometime between 7 am and noon. We waited, waited and waited. Walker was receiving blood and the catheter slipped out of place and his arm began swelling up.

I'm delirious. Anyways, Walker is set up to have surgery tomorrow. Worst case scenario they'll take out the blockage, bring one part of the intestines to opening of the stomach and connect the other to a stoma. He'll be on TPN longer and there's so many complications like feed intolerance and not being able to absorb nutrients.

So basically, it all sucks. My poor baby didn't ask for any of this and it's sad. R keeps saying, "He doesn't know any different, H. This has been his life since birth and he doesn't know any different.". I'm not sure how that's comforting but he tries. Love R.

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