Today was my day off as I had to go to work. Don't know how I managed to work 5 days this week but it had to be done. He had a good night last night but needed alot of suctioning. So far his cultures continue to come back negative for the yeast we were worried about. But his respiratory status has not been good. Rick took over this morning and reported that Av was working Really hard to breath pretty much all day. Now if you know Rick who is Mr. laid back then you know when he tells you that (things are NOT good)then you should be worried. The drs. did all the typical things that usually help when he is working to breath but it did not help.
Drs. decided to do another chest xray which showed his lungs were filled with fluid. This basically meant that he was in fluid overload. So either his body is not getting rid of fluid as fast as it needs or they gave him way too much. Thing is, they have NOT overloaded him as he has been on his regular TPN and he did get extra fluids on the first day we got there but his body should have absorbed it. So he was working so hard to breath b/c his lungs were so heavy. Poor kid. It was so hard not to be there but Rick and the nurse and drs asured me that things were being taken care of. Soo hard not to just get in the car in fly over but what to do with Ness and Zay.
So they decided to give him albium? which is a blood product to help take the fluid off the lungs. Thankfully he breathing really got alot better soon after starting the treatment. So he seems better. But....this still worries me as it seems like we keep heading into new territory. I can't help but think we are missing something big. It is a nagging feeling that I have to I hope doesn't bite me in the a** later. This poor kid has been through soo much lately, it just breaks my heart. I honestly have little energy for much but my family and work right now. It is so hard that Rick and I only talk on the phone b/c we can't be in the same place at the same time b/c someone always has to be with the other kids. Have I said how much this all sucks.
But it was great to spend some birthday time with Isaiah and Janessa today. Ness has another softball game tomorrow and I have to relieve Rick.
Thank you all for the encouraging words.
3 comments:
Hugs friend. I wish I was there to give you a real one. You and Rick are doing an awesome job in a very tough situation. Much love to you and kisses to those sweet kids of yours.
Nena and Reese
You have some cuties! I am not sure how I was directed to your blog. I am praying for your beautiful babies who are struggling.
I'm so glad Avery is breathing with a little more ease now. I can only begin to imagine how painful it must be to watch your child struggle for breath. You are in our prayers. I hope you can all be home together soon.
Hope you get some sleep too.
Love Alison.
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