So today does not seem to be Gaines' best day. When I visited this morning Gaines' oxygen was up to 39% and of course I was devastated. Through the night he was between 33-35% but he went up this morning before I arrived. It kills me that he can make huge progress like he did last week and undo it all in the matter of a few hours. While I was there his nurse suctioned him (they do this with his cares about every 4 hours) and was able to clear out his nose so when I left he was back down to 37%. I hope that's all he needed and he'll keep coming back down.
The doctors think that part of his increased oxygen is because they reduced the amount of diuretic he's getting. They were causing his electrolytes to go crazy so they cut back. The doctor this morning told me that they were going to supplement his milk so that he could get more calories with less fluid. He feels that will help offset the reduced diuretic. I guess we'll see.
One of the two attending doctors leaves Friday for 4 weeks so he wants to meet with Beau, me and another doctor on Thursday to make sure we are all on the same page and I think to sort of figure out a game plan. I don't know that Gaines could be transferred or even if we'd want him to be (we just feel he's getting great care here) but we are waiting to hear back from our insurance company to see if they'd cover a medical transfer back home.
Until recently (and he may not be now) he hasn't been healthy enough to transfer. I'm afraid insurance isn't going to want to do this but these doctors think they might. They think a hospital back home would be less expensive than this one and insurance might be willing to pay on the front end to save on the back. Like I said, I don't know that its even what we'd want to do but we want to know if it is at least an option. I hope to know a lot more about what the doctors think long term on Thursday.
I got really discouraged this morning when I saw the increased oxygen. I felt the tears stinging in my eyes and tried to fight them back until I could get out of the NICU but I couldn't. They spilled over and I desperately tried to hide it from all the doctors (they were all near because they do rounds near Gaines bed) but they saw me. Gaines' main attending doctor came over to try and reassure me. I told him that I was just so discouraged because he seemed to be going in the right direction. He told me that he was going in the right direction and not to let one day of increased oxygen get me upset. He said it could be many things that just messed him up for a little while. I pray that he's right and that when I call back, he's back to what I consider his "normal" range. I'll keep you updated.
I just want to take a second and thank you all for joining Beau and me on this journey. Your prayers and kind words via this blog, email, facebook, cards etc keep us going. Especially on days like today when its hard to stay positive. Please keep Gaines and our family in your prayers. Specifically for Gaines lungs to mature and get better.
Love to all,