I hate writing posts on this subject but last night Josie was admitted to the hospital with breathing difficulties. Our little bald cherub was requiring more and more oxygen to maintain her saturation levels and she had developed a pretty severe retraction in her chest. In other words, she was working really hard to breathe and not really succeeding.
Her chest x-ray showed cloudiness in her lungs, particularly her right lung. At 4am this morning, the doctors concluded that the high-flow nasal cannula was not cutting it anymore and they moved her up to the Pediatric Intensive Care Unit and put her on CPAP.
Later this morning, she seemed to be quite spirited and active. During rounds, we learned that her chest x-ray had improved overnight and they decided to wean her CPAP a little bit. As the day progressed, she appeared to be on the mend. She was maintaining her oxygen saturations as the CPAP was gradually turned down. She proceeded to showcase her chromosomally enhanced flexibility.
Despite the short supply of smiles (hey - would you smile with that tube shoved down your snout?!), we concluded that her acrobatics meant that she was hanging in there and showing us there's certainly a fight in her!
If she continues to recover - and let's pray REALLY hard that she does - she may be able to go back to the high-flow nasal cannula tomorrow. While we're still awaiting results from her lab cultures, the physicians have told us that this is likely another respiratory virus - perhaps something as simple as a cold. The problem is that a minor illness that would give the average kid the sniffles, just steamrolls sweet little Josie.
Prayers are certainly appreciated as are suggestions for how to avoid germs during cold and flu season. Travis actually asked the doctor if we could get her fitted for a bubble! So if anyone knows any good bubble merchants, please let us know!
Praying for your sweet Josie!
ReplyDeleteWe purchased the same grade hand sanitizer that was used in our NICU,CTICU and oncology days ...Avargard made by 3M and it really has not failed us.We have small bottles in the car,large in bathrooms and kitchen and all that enters, must rub up.We really do swear by it.Wish I could come up with that bubble.Much needed around these parts at many times in our lives since Zoey's arrival...in the end,hand washing and lots of praying.Seemed to do the trick.
ReplyDeleteHoping you find home soon.
I have been reading your blog for a while. Josie is the cutest! We will be praying for her and you! We have been there and totally know what it's like. Our eldest spent 165 days in the hospital the first year of life!!
ReplyDeleteBless her! So sorry to hear you are back in the hospital Josie. We will be praying that you get out soon.
ReplyDeleteWith our son, Peyton, from November until April we went to the ER every couple weeks with croup. He never worked near as hard as little Josie, but enough that he needed epi treatments to open his airway. Now he's 15 months and the past 4 or 5 times he got croup, no ER visit was necessaray because he could handle it. His ENT was confident he would grow out of it (as in his trachea would grow out of it - larger diameter) but did mention to us that if it got worse or didn't show improvement, there is a procedure that can open the cricoid cartilage that is just a wee bit smaller in kids with DS than typical kids. This allows the trachea to open up more when viruses cause inflammation (like croup). The cricoid is a solid ring, so no expansion can occur in that particular spot of the trachea therefore creating the stridor sound and retractions as the axillary muscles have to work overtime to suck the air past this point. But hopefully you'll experience the same thing we did; with time she'll get bigger meaning her airway gets bigger meaning colds/viruses don't steamroll her like they do now. Sweet baby girl, I'll be praying for her and hoping this winter season goes easy on her. :)
ReplyDeletePoor baby! Addy always had so much trouble with her breathing too. Fortunately it is so much better now, she was even discharged from pulmonology. When we first brought her home at 9 months the outlook was bleak. Prayers for sweet Josie!
ReplyDeletePraying hard here in Oregon as well! Her eyes are sooooo pretty peeking out in that last picture.
ReplyDeleteAfter my son's open heart surgery last year, I put him in a serious "bubble". I basicaly did not take him anywhere except for his obligatory MD appts, & even then, I made arrangements with his pediatrician so that he wouldn't have to wait in the waiting room with other sick kids. What, no visit to the mall Santa Claus, you say? You mean, that human petri dish???? No way! :) No visits to the professional photographer? Nope. I paid someone to come & take photos at my house. No big nights out at Applebee's??? Not until he was almost a year old.....As you can tell, my paranoia about Josh ending up back in the hospital meant that we spent a lot of time at home his first year. The good news is, that my son is now a much healthier & very active 22 month old who has not only been to Applebee's, but Red Robin too. :) We've also been to the mall, summer & fall festivals, & birthday parties surrounded by other potentially germy toddlers, & we've managed to avoid the dreaded "H" word. It WILL get better. Josie WILL get stronger. Hang in there. Kim Oops. Almost forgot. Have the doctors mentioned giving Josie Synagis shots to prevent RSV? If not, ask about them. With her history, I think that your insurance company would approve it.
ReplyDeletesending prayers for Josie!!
ReplyDeletePrayers for Josie!
ReplyDeleteOh....sighs....cold and flu season is so hard on little ones! Abby was in the ER 3 times last season with 2 admits- all respiratory. We stayed enough in the hospital that I got to where I looked forward to the cooked greens that came with lunch every other day! She started wheezing again a couple of weeks ago so we are happily hopping her up on daily steroids now. She's a little ball of fire due to them we think but it's better then the alternative. We start the synagis shots again this year as well.
ReplyDeleteGive your lil lamb a hug from all of us. Like the pp said- it will get better.
Oh, poor sweet little girl! I hope she continues to mend quickly!! Sorry, no bubble merchants in my rolodex. :-(
ReplyDelete