Primary children’s day 2

Before I even tell you about the day I need to say thank you. Thank you for reaching out, thank you for offering to help, thank you for the visits, thank you for the prayers and good wishes. I feel very supported and taken care of. I also want you to know that this time around having Georgia admitted to the hospital for Respiratory Distress is not nearly as scary as it was with Lucas. I feel confident in my knowledge, my experiences and my ability to advocate for her. I also trust the team of doctors and nurses that are caring for her. They listen to me and treat me like a team member not an opponent.

Wed Jan 22

After a long night, the day started with vitals.. temperature, blood pressure, then listening to her lungs and heart. “Rounds” are typically first thing in the morning but the floor that we are on is very busy so that got pushed back.

The respiratory panel from day one was negative and they didn’t know what is causing her to be sick so they decided to be extra cautious and move us to a private room to prevent her from possibly getting a virus from another patient.

The cystic fibrosis test was bumped up from 2pm to 10:30am. They stimulated the sweat glands on both of her forearms and attached a collection device. She is quite the sweaty baby already so they were able to collect enough sweat from both arms in less time than they were expecting.

Around 2pm we finally had “rounds” where we get to talk with the team and make/go over a plan.

They had not yet received CF test results. Their top priority was to see if she was indeed aspirating while nursing. The process for that involved a speech therapist consult to determine if they recommend a swallow study.

Second was to continue to explore the Asthma treatment. The doctor listened to her lungs very thoroughly before and after an Albuterol treatment and determined it was helping but it wasn’t enough yet. She needed stronger/and more frequent steroids to help relax the muscles in her lungs that were causing the wheezing. He replaced th  flo-vent and singular granuals with the oral steroid Prednisolone 2x a day and upped Albuterol inhaler to every 2 hours.

The next time she nursed the speech therapist sat and observed and chatted with me about her feeding history. We talked about the coughing and gagging while eating, when it started and how often it happens. She determined from her observation that it appeared Georgia is swallowing safely and not aspirating. But just to be 100% sure we should to a swallow study. By that time it was late in the day and the test got scheduled for Thursday.

Before bed I finally got to shower and got to give her a bath just like she loved so much at home and put her in new clean clothes (thank you Aubree!!)

Night time was pretty difficult because of the order to give Albuterol every 2 hours. It would take 15 minutes to give the medicine and calm her down, 25 or more if she needed to eat too. Then after getting her back to sleep in her bed I would lay back down and try to fall asleep again. A little bit about me: falling asleep is not my specialty so I would get about an hour to an hour and a half of sleep before they would come back in and do it all again. About two times during the night they came in in-between the two hours to check vitals. This was all night long until shift change at 7:30am.

Thurs Jan 23

During rounds this morning we were told the Cystic fibrosis test was Negative! This was great news! They decided to reduce Albuterol to every 4 hours with the option to use the nebulizer when she is sleeping so we can disturb her as little as possible.

Next thing on the docket for today was the swallow study. That test is done by having Georgia drink Barium (an x-ray contrast liquid) from a bottle while watching her through the x-ray machine. This allows them to watch where the liquid is going and what her body is  doing as she swallows. This was not an easy test for her since 99% of the time she nurses. And when she does use a bottle it’s only breastmilk. They sweetened the barium with the equivalent of snow cone syrup and we were able to get her to drink about an ounce and a half from a very low flow bottle nipple. They got as many images as they needed without reaching the radiation threshold.

Once back in our room we reviewed the results. Based on what they could see in those few minutes she was not aspirating the liquid. She did however have a delayed trigger. This means that the part of her throat that closes of the esophagus is a bit slower than it should be. Leaving it slightly open fluid passes by. The speech therapist said that means she is at risk of some aspirating but does not aspirate every time. In her opinion regular aspirating was not the the cause of her ongoing respiratory issues.

We were both relieved and confused by these results. Of course we don’t want her to be aspirating, but it seemed like the most likely cause of this extremely long bout of bronchiolitis.

This afternoon we did an oxygen flow test during her sleep to see if she still needed to have the cannula. We reduced her flow from .5 liters to .125 liters. After just a few minutes her oxygen went from mid 90s to mid 80s. It was clear that she still needs it.

What’s next?

Well I don’t have a for sure answer until I talk to the doctor again. But what I think the plan is from what we have talked about is that they want the pulmonologist to weigh in again, now that we have all the results back. They’ve talked about possibly an ENT consult as well. We will make another game plan at rounds tomorrow morning.

The bad news

We have no clear answer as to why she has been so sick for so long… Yet.

I have no idea when we will go home.

The good news!

She is stable.

She does NOT have cystic fibrosis.

She is nursing and wetting diapers great.

She hasn’t needed an IV.

Matt is rocking the stay at home Dad thing with the other kids.

Reinforcements are on their way! Matt’s parents will be here tonight so he can have some help and hopefully go back to work tomorrow. My mom is coming next week to help us all continue to recover.

We have the very best team of doctors and nurses working their best to help our sweet Georgia Peach. Thank you again for your continued prayers and support on her behalf.


The never-ending bronchiolitis

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…

Week One:

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.

Week two:

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.

Week three:

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.

Week Four

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.

Week five

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.