The steady climb continues. In addition to the great weight gain from last night and continued progress with feeding, she's slowly getting her breathing under control. We're still a little confused by the cause of the breathing issues but Madeleine is slowly being weaned and everything seems to be going well. She's still slightly tachypnic (breathing fast) but not as bad as last week and we're hoping that this will continue to dissipate. We have a family meeting scheduled with her doctors tomorrow where we'll discuss the different medical issues that Kirsten and I will need to administer when Madeleine's home. This includes:
1) Feeding through the bottle and tube. We've already been trained on placing the tube and feeding through it. We'll get more practice but know that, at least in the short run, we'll do some of the feeding through the feeding tube.
2) Breathing support: Its likely that Madeleine will have some breathing support when she comes home. We're going to discuss tomorrow how long this support should continue and what warning signs we can look for at home. This is the big mystery area for Kirsten and I as we're not entirely certain what is the cause of her current breathing issues.
3) Ostomy care: We've already been trained on how to empty the colostomy bag and we'll get more practice in replacing the bags-- they need to be changed every couple of days.
4) Monitors: We're not sure if they're going to send her home with any monitors. This is another topic for discussion during tomorrow's family meeting.
5) Medicine: Madeliene is currently on a diuretic (laseks) but we're not sure if they will send her home with this medicine. Additionally, she is getting a medicine for her reflux (Prevasid) that we'll need to give once daily. That's the only medicine she is currently receiving. There has been discussion of possibly administering a steroid to help out her lung development but no decision has been made.
I typed out the list to get it straight in my head and while it seems like a lot, for the most part, we're just hoping to get her home so that we can watch her grow. If all goes according to plan, she'll be big enough in about two months for the re-attachment surgery and when she is finished with that surgery, all of the issues above should be resolved.
That's all for now. Keep your fingers crossed and prayers coming-- the next few days are pretty critical in our plan for getting her home next week. Thanks,
Brent and Kirsten
PS-- I'm posting this information with trepidation as it seems that every time I post good news and/or a plan for coming home, everything falls apart...
Subscribe to:
Post Comments (Atom)
Posts
4 comments:
Keep the faith, Brent. She will be home soon.
Dee
There's nothing wrong with having a goal--it helps us focus. Even with a step or two back, look at the progress made over the last month. I agree with Sarah that being in her own home with loving parents will be a very good thing! Meanwhile, breathe deeply, be patient, and for heaven's sake, take care of yourself!!!! We love you, we think about you even when we don't write, and we're eager for the day we can give each of you a long hard hug. xoxoxox Aunt Donna
Brent & Kirsten,
You both are in my prayers as I ask for God's perfect timing in bringing Madeleine home. Expect another miracle, as you tend to the miracle inwhich you hold, that your daughter will be coming home with Mom and Dad soon.
Joyce Engelmann
We had some problems with the computer and we weren't able to access your blog site for a few days. It was nice to check in this morning and see the June pictures of Madeleine-she looks great. The daily trips to the hospital all these months have to physically and emotionally draining. Just know that we think of you and pray for Madeleines progress even when we are don't get the chance to write every day. Love to all 3 of you!-Aunt Barb
Post a Comment