Angel's Wings

Angel in his Team Angel shirt (www.team-angel.org)

My apologies for taking so long to update! I'm sure you all understand why. :)

Haven is 9 days old and doing wonderfully. She is a precious little girl with a great personality. She is a lot like Hudson but with that girly "I'll let you know what I want" flair. She rarely cries but gives a "piglet" squeal when her needs aren't adequately met. Here is a picture of her the day we left the hospital:

Angel is doing quite well overall. There are still quite a few bumps in the road. One of the most major ones is that feeds aren't going very well. Each time they increase formula feeds into his GJ tube (straight into the intestine) the stool output into his ileostomy increases significantly. This is often a sign of rejection or infection but it appears that it is directly related to the amount of feeds he is receiving. There is a possibility that he will be discharged on TPN (IV nutrition) as well as feeds. If this is the case, Angel's care will be full time - 24hrs. He will be on 12+ GJ medications (anti-rejection, steroids, etc.), IV fluids, TPN infusing 12-14hrs, GJ feeds 24hrs a day, caring for his ostomy, wet-to-dry dressing changes on his belly wound, and monitoring all of his "ins and outs" - which means measuring everything that goes INTO his body and EVERYTHING that comes out (vomit, stool, urine, etc.). It is very likely that Nick will not be able to return to work for a few MONTHS after discharge as Angel's care will be so intensive.

There was talk recently of discharging him already in the next week or two but some doctors on the team feel its a little premature. They are in the process of changing a lot of his IV medications to be able to be administered into his GJ tube. They also want to track his feedings a bit longer. Angel has also been having pretty severe headaches with vomiting for about a week. We are narrowing it down and think it may be due to one particular anti-rejection medication. He is VERY puffy and beginning to show signs of the irritable "steroid" behavior that we have seen him in before. All things to be prayerful of.

Again he is doing VERY well overall and all the things are just small bumps in the road.

Today we are celebrating Angel's Adoption Day which was August 19th. Usually we go to Disneyland each year as that is where we went after the courthouse on his actually adoption day. This year since that won't be possible we are having a SuperHero party with cake (which he can't/won't eat), a friend, a few games, and Angel getting to be disconnected from all his lines so he can drive the jeeps out on the playroom patio. Being disconnected is one of the biggest gifts to him.