Alex had been doing really well with this new formula they started at the end of the week. However, knowing our Alex, he chose to change his mind! Saturday he began to have blood in his diapers again and was very fussy. The GI doctor disconnected the formula feeds and the bottle feeds and just gave pedialyte via the NG tube. Sunday, Alex was still very fussy and gassey. He was to the point where everytime he passed gas or had a dirty diaper he would scream in pain. His diapers were still bloody so the GI doctor cancled all feeds. He will have total gut rest for the next 5 days. The NG tube gets changed every week but since Alex won’t be using it for a week, they pulled it out!! The plan as of now is to let him rest for the rest of the week. On Sunday, if he has no blood in his stools, they will start pedialyte at 1 cc an hour for 24 hours. He will increase by 1 cc per day until he is at 5 cc per hour per day. At that point we will try the last formula option, Neocate. If he does not tolerate this formula he will most likely go home on TPN. He would have to wait for awhile and then be readmitted for more trials with formulas. The downside to being on TPN long term is the possibility of liver failure. His liver enzymes were elevated in the blood work taken on Sunday. It wasn’t very high over the “normal” numbers, but something the doctors will have to keep an eye on. This means more blood draws but luckily we have the CVL in his chest to take draws off of. The pictures above were so much fun to take. The doctors and nurses here are amazing. I feel like they will all be a part of Alex’s life long after we are discharged. We have had some great nurses and techs too for that matter. We sure miss Caroline and can’t wait for her to get back!! Miss Margaret is my best buddy. She was here the night we checked in and her and I have become fast friends. This whole experience has renewed my interest in working in the medical field. The nurses have all said I should come work here and it would be so much fun. They are going to give me a letter of recommendation to be a tech since at this point I have the experience. Well, I had better go for now. Its almost midnight so Alex is due for one more medication. From midnight to four am, there are no interruptions. At 4 am they do his vitals, weight, abdominal girth, and sugar check. Then we get to go back to sleep most days. It usually takes about an hour to get him settled back down but then he will sleep until about 8 or 9 if the residents don’t wake him.
Tracey and Aunt Joyce–thanks for coming down, it was so nice to see you…and sam i know you couldn’t come because of the baby and i understand…love you guys
Mom and Dad–thanks for coming down tonight to hang out…it really means alot that you guys visit and bring me good stuff to snack on–THANK GOD FOR POPTARTS
Memi and Papa–thanks for the home cooked food you brought and for doing my laundry…I can’t wait to see the wagon!!
Sweet Caroline–WE MISS YOU COME HOME SOON
The Turners–thanks for making our family not feel so lost and alone in this lonely, scary hospital experience…so glad your Alex is doing so great