As I lay here with the light of the monitor, the faint tick of the clock and the muffled conversations going down the hall it is finally calm in our room, and I can ponder the day and how we got here.
Over the weekend it was becoming obvious that her condition was not improving. We noticed that her color was starting to change during coughing fits and when she was sleeping. Matt made a comment to me about how he felt that a hospital stay was in her near future. I cried. I panicked a bit. Then I made a plan. I needed to monitor her oxygen levels to know when she needed to go in, and I could have proof so they couldn’t turn us away.
Monday night we bought a owlet oxygen monitor, but couldn’t get it set up. My sweet friend Alison came and held Georgia all night and she and I got to sleep more than we have in months! I don’t think I would have handled this day as well without that sleep! She is an angel.
This morning I got the owlet set up and working. Her oxygen was around 89% Within minutes of falling asleep an alarm went off. Low Oxygen. That means it dropped below 80%. So I rubbed her head and chest. Her numbers went back up to the mid 80s this happened 11 more times in an hour and half. So I called the pediatric pulmonologist, they said take her to the ER for monitoring. Then they will decide if she needs to be admitted.
I eliminated some steps and decided to take her to the primary children’s hospital ER in Salt Lake, because if she was going to be admitted that’s where I wanted her to be.
Check in, triage then ER room. I tell the same story to everyone who comes in (and there were A LOT) She’s been sick for nearly 2 months. Her stats were dropping when she was asleep. She needs help, we need answers.
Monitored her for about an hour. Her oxygen would not stay above 87% while she was awake they decided to give her a nasal cannula with oxygen, and run another respiratory panel. The results came back negative again. The ER doctor came in and told us that usually they have bronchiolitis kids just stay overnight then send them with an oxygen tank to get better at home. But because she has been sick for so long he wanted to have her stay and do more tests.
They watched, listened and asked questions eventually coming up with a game plan for the next day.
Swallow study first, then CF test. A swallow study checks to see if she is breathing in small amounts of milk when she is nursing. Treatment for that is very wide range.
They did an EKG, they check oxygen all the time, did some bloodwork and spoke with another doctor about the plan. We will likely be in here a few more days as they promised me they would figure it all out.
Still no answers but she needs Oxygen and she definitely is the happiest sick baby they have. Thank you for your continued prayers. We hope this can get resolved soon.
Building the Burks 