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.
These first nearly five months of Georgia’s life has been both beautiful and extremely exhausting. Three of our kids have gotten at least a mild cold while being quite young and then there was Lucas with RSV. But this. This has been different. Georgia has gotten bronchiolitis once a month since birth. With this most recent bout lasting six weeks and counting.
Bronchiolitis is a lot like bronchitis but in very young children/babies. Distinguished from a common cold by wheezing, crackling, and retracting. Typically it resolves within 7 to 10 days. That’s exactly what it did the first three times she had it.
I’ve been telling myself:
“She’s going to get better.”
“It’s just running its course.”
“Tonight is bound to be better than last night.”
And many more things to get myself through the past month and a half. I’ve definitely consumed unhealthy amounts of caffeine and sugar to get me through most days. With the knowledge and hopes that as soon as she gets better and we start to sleep again I won’t need to supplement my energy with all the junk.
But before I go on and tell you about the appointment this week let me rewind for a moment so we get a better understanding of how we got here.
From the Beginning…
I realized she was getting sick again, took her to the doctor. They did the usual measurements, and pulse OX check. The doctor comes in. They look and listen.
“Well she looks great,” they tell me. ” But she’s definitely wheezy and congested, lets have you do suction clinic again”
And that is what we did. Once or twice a day depending on how yucky she sounded, for a week. Nearing the end of the week when usually she is better the Respiratory therapist at the hospital reminded me that “suction clinic” orders expire after one week and if she needed it longer I needed to go back to my doctor and get another order.
With the weekend rapidly approaching I did what she suggested went back to the pediatrician, just in case Georgia ended up needing new orders when the office was closed.
The pediatrician was surprised to see us back, but agreed after listening to her that she should have a new set of orders because sometimes it can take a little bit longer to get over these terrible viruses. Typically its seven to ten days.
We continued as we did the week before, going to suction clinic once or twice a day depending on how she was breathing. The days went like this.
Matt gets up with the kids first and does breakfast, packs lunch and starts getting them ready for school
I get up as late as possible after another terrible night with Georgia waking up every 2 hours coughing and gagging. Matt leaves for work. I finish getting kids ready and attempt to keep Georgia happy enough to endure the 7 min drive to school.
drop Steph and Josh off at school and if Georgia isn’t screaming head straight to American Fork Hospital. If she is screaming then I sit in the school parking lot for sometimes 45min to get her calm and ready to drive again.
Arrive at AF Hospital put Andrew in the Ergo on my back (by myself in 30 degree sometimes snowy weather) Then carry Georgia in her carseat and the diaper bag into the hospital with Lucas tagging along beside me. Check-in with the Respiratory therapists for “Suction Clinic” sometimes they aren’t available right away so we go to the waiting area for up to 30 min. We are greeted with one of the dozens of now familiar faces of the Respiratory Therapists employed by AF Hospital. She/He leads us to a small room in the Respiratory wing with an Infant hospital bed usually making some comment such as “you sure got your hands full” or “I see you brought the whole gang”. Along the way Lucas stops at the counter, reaches behind a little sign and grabs two suckers opens and gives one to Drew (who is still on my back) before I can even turn around. I swear the boys have a sixth sense for where the candy is. Usually I want them to wait until we are done, but its not a fight I have the energy to have anymore, I thank Luke for thinking of Drew and hope to myself he doesn’t get too much sticky junk in my hair. I ask Lucas to sit on the chair while we take care of his sister. Remove Georgia from her carseat and put her on the bed, open her jammies for the exam.
After taking her to this clinic sometimes twice a day for seven days out of every month for the last 4 months I have this routine memorized. Attach pulse ox to her foot. Watch her chest and neck for retractions. Listen with a stethoscope for wheezing. Count her respirations. She is given a score to determine. She’s a 3. And she’s been a 3 since we started over a week ago. Now its time to swaddle and suction. She is tightly wrapped in a blanket head near the RT and feet to me they ask me to hold her head still. I lean over her with Drew still on my back and hold Georgias head still in my hands. They gently squirt saline up each nostril and begin to suction her out. It only takes a few minutes but she is MAD. Suction right, suction left, saline right, saline left, suction left, suction right, saline left while suctioning right then switch and saline right while suctioning left and done.
Peering over my shoulder a sweet little voice from behind me says “Baby Jaja ok?” I pick her up, comfort her and reassure Drew that yes baby Georgia will be ok. Once she is calm they check her again. She is still a 3 but she can breathe better now. Time to load up and go home.
Once we are home its lunch, naps, and chores. When the big kids come home its homework, playtime, make dinner, clean up, then starts bedtime. Getting things done usually one handed when she is awake because when she lays down she coughs and is upset more.
If after the kids are in bed she sounds yucky again/ still I would go back to suction clinic around 9 or 10pm, in hopes that she could sleep better. It would help for a few hours then she would wake herself up from coughing/gagging in her sleep. Thanks to the SNOO bed she would sometimes be able to go back to sleep on her own, other times I would pick her up, help her cough it out, nurse her and back to bed. Every couple of hours we would go through this cycle until the sun came up and it was time to start the next day.
December 26th I took her back to the doctor because she was still sick, suction clinic orders were about to expire and I was starting to feel like I was loosing my mind. I asked if there was any other possible explanation for this prolonged sickness and if there was some testing we could do. He said she is probably just one of the unlucky ones and got back to back sicknesses. I asked for a Pertussis test just to be sure and decided not to go back to suction clinic because maybe she was getting sick from going to the place where all the sick kids go?I had done some research and ordered a hospital grade suction machine through amazon. I had seen them clean out her sinuses so many times before I was confident(and so was her Dr.) that I could take over from home and save a lot of hassle.
Pertussis test came back negative. I continued to treat her at home. The Dr suggested I try incorporating using the controversial nebulizer because he trusted my ability to discern if it was helping or not. So along with why nightly suction routine with her I added in 15min of nebulizer.
This is where it kinda starts to get blurry. I continue with her care, just waiting for her to get better. I became extra diligent about hand washing and cleaning surfaces and not taking her in public. EVER.
At the end of the week I return the doctor and they tell me to just wait it out. Do what I’m doing. Unless she gets a fever, needs oxygen, gets dehydrated or starts to loose weight there was nothing else they could do.
So I just kept going. Round the clock care for her and hoping that she would just finally get better.
I had given up, I was exhausted. Georgia was still sick. She needed Divine help to get better. I asked Matt to give her a blessing. I needed to know from my Heavenly Father that our sweet baby was going to be ok. That this would eventually end. I needed to know if I needed to do something different to help her. In the blessing something he said stuck out to me. That she would be better able to communicate how she feels so that we can better help her.
That night and everyday since, she got crankier. So Monday morning I got her into the Pediatrician and said I want an X-ray, more tests and I want to see a specialist. Six weeks is too long for her to be constantly wheezing and no signs of getting better. He agreed that she sounded worse and told me we would run tests because he suspects that there were multiple prominent winter viruses keeping her down. He told me that getting into a specialist would take months so once we got results we could go down that road.
He told me that every season their practice sees about 4 or 5 kids whose sicknesses last for a very long time like Georgia, most of them however end up in the Hospital with supportive care for a time. He applauded my level of care I have been able to achieve for her at home, told me that my effort has certainly kept her from the same fate.
The X-ray wasn’t terrible but it did look a bit junky. He suggested starting Antibiotics since she had been sick for so long, and it looked like the start of Pneumonia. The Respiratory panel came back negative for the 15-20 something viruses they checked for. Things like RSV, Rota Virus, all the Influenzas etc.
This result surprised him. He was certain there should have been something there. Thats when he said I think you are right I will send you to a Pediatric Pulmonologist at Primary Children’s Hospital in Salt Lake. He said he would make a few phone calls and get us in as soon as he could. The next day I got a call from the referral coordinator she had gotten us an appointment on Wed at 2.
That take us to yesterday. Our appointment with Dr. Uchida. They were very thorough in their questions and gathered as much information as they could at that point. He agreed that 6 weeks is a long time for her to be sick and there is a chance that this might just be bad luck. He went over many different potential causes of her prolonged bronchiolitis. Everything from anatomical causes, genetic causes, immune deficiencies, asthma and more. After discussing our options we made a plan to figure out what has been causing her to be sick and how to help her.
So where do we start?
A somewhat aggressive Asthma protocol, for a month or so. Flovent 2 puffs twice a day. Singular granolas once daily and Albuterol from the Inhaler as needed up to 4x a day. He informed me that there is no test for Asthma, it is one of those issues where if the treatment works then Asthma is the most likely cause.
Second is a slew of blood tests for immune deficiencies and Cystic Fibrosis. We did the bloodwork yesterday and scheduled the CF test. Once these results come, or if treatment works we will know if we need to do more testing or not.
Unfortunately I don’t have any answers yet. But we do have a clear path and I trust that if there is something to be found, Dr Uchida will find it. I will share what I find out when I can.
Until then I will continue the suction treatments, inhalers, humidifiers, diffusers, antibiotics, probiotics, and whatever else I can think of to support her.
We appreciate your prayers and support through this seemingly never ending trial of sickness.