Even better today!
We were able to come home after the apt. They were a little unsure of what to do with her, there was talk of admitting her for IV nutrition so we could keep the NG out for a few days and let her nose heal, but we decided against it. Beth inserted her NG and then her nose bled for the next 45 minutes. She could see how bad it was. So she was put on flonase and zyrtec to try and stop the congetion and open up her airways so she can breathe and hopefully heal faster. I gave her one dose last night and the difference was huge. I put her down last night at 5:45 and she is STILL asleep at 9:30! She was so exhausted from not sleeping and she can fnially breathe! When I checked on her this morning she had no snot in her nose! You can still hear it when she breathes but if feels so nice to see her get some relief after 2 months. So we'll continue this for a few days and hopefully she'll fight through this virus she has and get over it quickly. I just got her RSV swab results and they were negative!! :) Her fever is gone this morning finally.. Thank you for your prayers and thoughts!! You never know what these things might turn into, and I sure hope we're past the worst.. It is so stressful when she is sick..the fear of knowing that her life is so fragile and not knowing whats wrong and what we should do when it's 2 a.m. and she is so sick. It's nice to breathe a little eaiser now.
We did get some G-tube news that was a little disappointing for me. She has to be a month out of any illness. So we have to get her over this, which could take who knows how long, then wait a full 4 weeks!! I was hopeful we could just get it down and over with and be done with the NG so she could heal, but it looks like it'll be a little while. We'll get through it though.. And who knows..maybe in this next month and a half or so we'll see another miracle with her eating.. But if not, we at least have a plan set up. It feels good to at least have that. Either way in a few weeks she'll have it out for good!
We did get some G-tube news that was a little disappointing for me. She has to be a month out of any illness. So we have to get her over this, which could take who knows how long, then wait a full 4 weeks!! I was hopeful we could just get it down and over with and be done with the NG so she could heal, but it looks like it'll be a little while. We'll get through it though.. And who knows..maybe in this next month and a half or so we'll see another miracle with her eating.. But if not, we at least have a plan set up. It feels good to at least have that. Either way in a few weeks she'll have it out for good!
Comments
Give Miss Bela kisses and tell her Lily and I are praying for her speedy recovery.
Heart Hugs
Jenna and Lily
ps: just incase you didnt get my message, Lilys party will be at 2pm, we made it for after the heart walk. We were going to join but there is so much to do for the party. We hope to see you guys there. The invites will be going out shortly.
I`ve said this before and I`ll say it again... I`m so proud of you!!! you are such a marvelous mother, and if some day I am blessed with my own child I`ll always look up to you!!!
Love you and miss you...
abraços,
Carol
Im so glad she is doing better and she was able to sleep a bit..That little girly needs a break...forever...
Hugs-
Here's to a healthy 4 weeks so she can finally get that GTube. Oh.. but you never know... Ms. Bela might have a few tricks up her sleve and may just start eating before then!! :)
I have a 2 (almost 3) year old son with Down Syndrome, that had a few surgeries in his first few months and for that and other reasons had to get a G-tube. We too started with the NG but it's just not practical for any kind of long term use. We spent his first months in the hospital - so while our children's conditions are much different, know that you're not alone in this rough time.
He's had the G-tube now for almost 3 years and is ready to have it out any month now. He got a low profile Mickey tube and I highly, highly reccommend it. It's hidden quite well under his clothes and has given us little, if any, problems. In the end, it's all worked out great. So, GOOD LUCK! We moms that deal with these extra health issues and G tubes are a special breed!
i don't like it. I just don't. Loves,
Manda