Hanging in the Hospital

Well, it turns out we are no longer hanging out in the hospital, thankfully.  This is what I was doing when I wrote the title to my post and got no further than that.  It was all sort of a whirlwind week and a bit.  We had found out from Selah's allergy and asthma specialist in November after her Halloween 3-day hospital stay that something didn't look right about her chest X-ray and she was sent for a CT of her chest to see what was going on.  The doctor called us back and said it looked like something called bronchiectasis (very basically, lung damage due to inflamed and thus enlarged bronchial tubes that don't return to normal) and referred us to the pulmonologist.  This particular doctor, Dr. Welch, was really a godsend because he really listened to me where others hadn't and began to track down her actual health problem instead of just labeling it asthma, sinus infections, etc.  He and Selah's pediatrician also had her to a sweat test and blood work to rule out cystic fibrosis; they both came up negative.  We finally saw the pulmonologist on a Monday about 2 weeks ago and spoke to her about beginning physiotherapy at home and having a few procedures done in the near future to try and diagnose the cause of the bronchiectasis.  She also explained to me that I should be more cautious about Selah getting a virus than I would my other children as it more easily became an infection in her lungs.  So, wouldn't you know it, that same evening she and her older sister, Isabella, both came down with a high fever and chills (some sort of 24 hour flu), but Isabella was better in less than a day and Selah's fever came right back.  So, to be cautious, I called the pulmonologist to ask what the best course of action would be and the nurse called back to say I should take her to the ER at Children's Hospital expecting to be admitted.  This was definitely not what I was planning on hearing and, of course, there is never a good time to hear that your child is about to be admitted indefinitely to the hospital.

By the time I had Selah prepared to ride into town with her grandparents to meet her Dad who would take her to the hospital, the nurse had already called me back again to say that we would be admitted directly to the hospital and skip the ER altogether.  This, was a blessing, to be sure, because waiting in the ER can be very wearing, but it also really made us realize that this was maybe more serious than we had thought.  Even on that first night that we arrived, the doctor told us that she would be staying for at least 7 days and up to 14 days.  Hospital stays are never easy between work schedules, caring for the siblings of the sick child, school schedules for the kids, and lots of extra driving to and from the hospital.  We were very fortunate to have both sets of grandparents right here, close by to help at a moment's notice.  Other friends stepped in and helped, too with our other kids, groceries, meals, hospital visits, and most importantly, all their prayers.  As I mentioned before, the Ronald McDonald house was also a huge blessing while we were down there.  Mostly, I was the one that did the day shift at the hospital with Selah, and my hubby would take over for the afternoons and evenings because Children's was closer to his work than our house is.  Words to those 9 days for me:  stressful, exhausting, monotonous, educational, emotional, torn between hospital and home, praying.

Initially, the doctors felt that Selah had a condition called PCD (primary ciliary dyskinesia), a rare genetic disease, which would have meant that her cilia didn't work properly in her body to expel excess mucus.  Two days after she was admitted, Selah was put under and a ciliary biopsy was taken from her nose, a broncoscopy was done in her lungs (as well as "lavage" - cleaning her lungs out), and a PICC line was put in (a more long-term solution to IV's because it can stay in for many months as opposed to a few days, if necessary - hers was taken out before she came home).  From these tests, we found out that Selah doesn't seem to have PCD because her cilia are functioning properly and that the structure of the inside of her lungs seems normal despite the inflammation in there.  What that left us with, though, is still not knowing the cause of the bronchiectasis.  Also, we found out, that there was still another genetic test that could be run to determine if Selah has any of the rare strains of CF; this was certainly not the kind of suggestion I wanted to ponder, but I know it is still better to know the truth even if it does turn out to be this.  The results won't be ready for 4 weeks at minimum and the waiting isn't all that enjoyable.  But, at the same time, whether or not we get conclusive answer as to the "why" of Selah's condition, we have the "hows" of treating it and keeping her healthier in general.  This mostly involves the twice daily respiratory therapy using the Smart Vest, a device that inflates with air while being worn by the patient and jiggles their torso to loosen up secretions so that they can be coughed out.  If Selah gets a cold or minor virus, the frequency of treatments each day can be increased, and then antibiotics might also be necessary to keep infections at bay.  This is just the beginning of our respiratory therapy road, but we seem to be settling in well - Selah most of all.  And seeing her back to her active and happy self is priceless!