Alex got his transfusion yesterday and his first dose of procrit. He did really well. I am getting ready to start loading the car. We hope to be on the road by lunchtime.
I will update from home! Thanks for all the prayers.
Ali
Alex and Maddy
Friday, May 21, 2010
Thursday, May 20, 2010
Blood and Home
I should know by now not to get worked up that Dr. K always comes to the rescue!
So the plan is to get a transfusion today. We are finally restarting his procrit so we don't need to transfuse anymore! Then we will head home tomorrow morning and increase feeds very slowly.
One of Alex's favorite nightime nurses has been spoiling him with little treats all week. Last night she had a treat for Mommy. A sleep mask that said, SHHHHH, I'm sleeping! Well Alex had to try it on. So I got a cute picture.
I will update again if anything changes.
Ali
So the plan is to get a transfusion today. We are finally restarting his procrit so we don't need to transfuse anymore! Then we will head home tomorrow morning and increase feeds very slowly.
One of Alex's favorite nightime nurses has been spoiling him with little treats all week. Last night she had a treat for Mommy. A sleep mask that said, SHHHHH, I'm sleeping! Well Alex had to try it on. So I got a cute picture.
I will update again if anything changes.
Ali
Wednesday, May 19, 2010
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
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
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