Yes, we are home!! After a LONG night last night, and a crabby mom (that'd be me) we are home. I am a nurse and back in the day I worked nights, so I understand the schedule and orders from the MD. I just think, at night, the seasoned mom's should be the nurses and not the new grads with no kids. They don't understand when you wake up a kid at 3am they are not going back to sleep and it's not cute!! So she finally fell back asleep at 6:30a and I stood watch. If anyone THOUGHT of bugging my baby they got the mean mom look and ran!! When Dr Mageed came in the bags were packed and I was ready to go. He asked if I was going somewhere :) Yep, I had all night to pack! All in all, Brooke is doing better. She had pulled out her IV yesterday and has times during the day that she perks up. She is somewhat tolerating her feedings, and we started up her nebs to ease her cough and breathing. That is all stuff we can do at home. Tonight Leah said, "Mom why did they send Brooke home if she's still sick." She gaggs alot, is quit pale and sits around. This is all going to take time. I feel if we are home, she can sleep, I can ease her back into her feedings and she can be stimulated by her sisters to get up and get moving. Virus' take awhile to get over. This was a good reminder, no matter how "normal" she looks to us on the outside, she is not on the inside. We have to be careful!
As for her IGG, it did drop to 430. Dr. Mageed explained it, she has some B cells from her transplant but she is not processing them through her thymus, so they don't mature. Dr. Mageed is still content to wait and see. He wants her back on IVIG every 3 weeks and is still discussing stopping some of her many meds.
After talking to him, I discussed with our nurse and social worker, we have 2 MD's with 2 different opinions as to what to do with Brooke. Dr. Duffner wanted to try her off IVIG and stay on meds. If being off IVIG didn't work then maybe do another transplant sooner rather than later. Dr. Mageed says, let's wait and see, and transplant later rather than sooner. We go back next week to have a follow up. I might pick their brain then. The nurse apologized that they weren't on the same page. I think it's great!! 2 minds that think differently. There are pro's and con's to both. Both MD's have Brooke's best interest in mind and I trust and respect them both. It's like getting a second opinion and not having to go anywhere. If our opinion matters, I don't see Brooke having another Bone Marrow Transplant soon. We are not mentally or physically prepared. + my heart couldn't take it now. We feel when God says it's time, He's going to make it known. And then we'll follow His advise. It's work for us this for :)
Thanks for the prayers. We're going to hunker down with Miss Brooke for a week or 2 and try to get her healthy. Pray for strength for her and for her sisters as they walk through this with her.
1 more thing.......Mother's day was wonderful!! I have best girls and husband in the whole world. I read cards, open gifts and cried. (My girls may think I'm a freak, but I'm ok with that :)
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