Well next week is already here….

Well next week is already here….
We made plans for discharge this week, all systems were Go. We had the doctors approval, suppliers on board and Angel was set up to be discharged on Wednesday. Over the weekend Angel had soo much fun playing and being off the TPN and formula feeds that he ran and played and climbed stairs and even wrestled a little. But on Monday and Tuesday he was really not himself, very sore in the abdomen and was guarded in all his activities. He definitely was not up for the activity he had done over the weekend. Because he looked soo good on Saturday and Sunday the GI team advanced feeds more aggressively over the weekend and converted meds over from IV to his gut. After a bit of resistance for soo many changes and the cavalier approach on the few days before discharge I compromised with the team. Our initial plan last week was to cruise out the door but the desire to take advantage of a good thing and to push a little harder for progress ended up overriding our intuition to be more conservative. With a handful of changes over the weekend and a last minute change yesterday Angel had another set back overnight. In the middle of the night Angel woke up to more intense abdominal pain, nausea and vomiting. This persisted throughout the day today. It was clear that we would be postponing going home to figure out the problems and get Angel back on his feet running around again.
One of the main concerns is that Angel has not tolerated feeds over this entire admission. All other body systems have been great but the rate limiting step in getting us discharged is the gut not tolerating the feeding regiment. We had a major setback about three weeks ago with an intestinal blockage. I worry that we may have another blockage like situation brewing. My instinct is to back off of the this feeding regiment but I know that we probably would benefit not changing too many things at once and my main concern is stopping a med that is designed to slow down his intestine. This med allows him to have less diarrhea and more absorption but in the current situation I feel that it is causing the abdominal pain and nausea and vomiting. The medical staff is not all convinced but in fairness they are allowing us to hold that med for 24hrs hoping to see improvement. Today they also did an X-ray of the abdomen, it was not helpful in giving us a direct answer but more of an indirect answer of what is not going on. He does not have an obvious blockage but the intestine does not look normal, so we will wait and see what the team says and what Angel does in the mean time.
Tomorrow the teams meets again for Grand Rounds and with all services together we may have some controversy about what is going on with Angel and how best to handle it. But in it all I hope and pray that Angel is looking better and feeling better and we will move on in a positive direction once again.
Angel was feeling pretty lousy this morning and by evening he had a bit more spunk in him. He is still interactive but not playful. We had given him a surprise toy to offset the change in plans on not going home. He was thankful but hardly wanted to play. The most energy came today when Sarah brought baby sister. Angel was very happy to see her and wanted to hold her and talk to her. He was very sweet and gentle as he is a very good big brother.
During these ups and downs battles are won and lost. Progress is made and setbacks happen. We had hope for our first night together as a family under one roof but it will have to wait. Most importantly Angel will start feeling better and soon enough we will make new plans for home. So we look back and know that all these battles have a purpose and all these battles belong to the one who cares most about us, the Lord. He has continued to strengthen us and bless us with His presences in our lives. He has also given to us an incredible family and an amazing blessing of this special calling. We will endure and these situations as a whole will make us better and more reliant on Him.
We will update more later thank you for your prayers and supporting us.