So very Frustrated!

Our day that started so well has turned really frustrating for me.

First, Alex has been begging to take out the IV in his hand. It is really bothering him and is very painful if we try and use it. After talking to the nurse and our team, we decided to check a CBC and if every thing looked good take out the IV. This decision was made because the only reason we would need the IV was if he needed a blood transfusion. Well his CBC came back and he is very close to transfusion level. This frustrates me to know end because Alex was on procrit for a year and only needed one transfusion when he was extremely sick. After speaking to the doctors they asked us to try weaning off procrit. We have been off procrit for 6 weeks and are the verge of our second transfusion. I feel like we should put Alex back on procrit. He was doing great and it seems obvious to me that his body is not able to compensate to being off the med.

Then, earlier today everyone (primary team, Dr.K, GI dietician) had all decided we would go home tomorrow or Friday and increase feeds even slower so Bug's body had a chance to adjust and not feel stressed out. Well a new GI (who I have never even seen) came in and decided we need to increase feeds every few hours and that we should stay until Alex is off TPN and on full feeds. I do not think Bug's little body can take that and I do not want to make things worse. Hopefully, I am wrong and he sails through and we are home in a few days on full feeds.

Please pray for Buggy to feel good. Pray that the doctors are receptive to want Alex and I tell them and that they do what is best for him.

Ali