Our sweet Georgia Peach 10 months looks good on you. Today July 10th is Airway Disorder awareness day. We have come so far and yet we still have so far to go. Half your life ago we were in the Pediatric ICU at Primary Children’s Hospital. You were getting your first and second of five chest tubes. Up till that point in your hospital stay you didn’t even have an IV. The next two weeks in the hospital were by far the worst days of my life. But in that time I also saw the depth of your strength. I saw many miracles. Your life hanging by a thread.
You were pulled from the slippery slope of… dare I say it… Death. More than once. More than twice. Looking back I thank Heavens that I just happened to not be there the two times that it got really bad. Being able to imagine it is bad enough. The monitors alarming, your skin changing color, the nurse yells “Code Blue”, blue lights flashing, emergency PICU team flooding the room. Chest compressions. Bagging your breaths. Watching the monitor. Sixty long seconds. They did it. You came back. The second time it was a similar story but 90 seconds of compressions. And again you came back.
They watched you so closely. Every beep and blip we watched. Many other times you nearly coded but because they watched you so closely they were able to stop these episodes before they became “codes”. Again and again you came back. You chose to fight, you chose stay. I know it was your choice. You have communicated your needs to me so very clearly from the beginning and I have been your advocate. In order for you to come home from the hospital I learned how to place an NG tube so you could be fed. After one week at home you pulled it out! You came home with a serious addiction to morphine and I made medication charts set alarms on my phone and slowly weaned you off, took you to appointments and tried my best to keep up with everything.
Because you spent the first 5 months of your life fighting to breathe you missed a lot of physical development milestones. You started home therapies. The best speech, occupational and physical therapist came to our home weekly to teach us how to help you. And every day we worked with you to get your strength back.
When you went into the hospital you were exclusively breastfed. When you left the hospital you were 75% NG tube fed and 25% bottle fed. No more nursing. That was a hard pill for me to swallow. You are my last baby. I was planning on nursing you for years. Especially after how sick you were I just wanted to hold you close and nurse you. Helping us both heal emotionally and physically. But that was not in the plans for you. Not only was nursing too exhausting for you we discovered at your one month follow up appointment that even with all the progress you had made you still didn’t swallow safely. You aspirated everytime you ate. From that time on every bottle you drink has been “nectar thick”. This helps you to swallow the right way.
As months went on we expected things to clear up and for you to grow out of these issues. I noticed that you were constantly congested and for several months we tried allergy medicine, sinus sprays, and suction with no relief. You got bloody mucus poops, after many tries we eventually landed on a special order amino acid based formula. You continue to get rattle in your chest multiple times a day, and have had various signs that there is some issues with your breathing. For those reasons the doctors told us it was safest for you to hold of on introducing foods until things settle down.
After consulting the pediatrician we got you back into the ENT at primary children’s hospital. He did an endoscopy and found that your Adenoids were a 75% obstruction in your sinuses. He also didn’t like the way you sounded when were crying. Based on all the information we gave him He had us meet with all the specialist from the Esophageal and airway clinic. A plan was made for an Adenoidectomy, a bronchoscopy with bronchial lavage and an gastrointestinal scope with biopsy.
So in 10 days on July 20th (one day shy of 6 months from when you were first admitted) we will head up to Primaries early in the morning for these procedures. I will once again watch them roll you away and trust their exceptional skill. We will wait in that all too familiar surgical waiting room, this time thankfully your life will not be in such jeopardy. We hope to solve some of these problems and get a clear path to your optimal health. I really hope that this will enable you to swallow safely so you can eat more than only thick formula and just breathe easier.
You are incredibly strong and I have every confidence that it will be hard but you will recover from this. You’ve done it before. You will continue to shine your beautiful light giving proof of God’s Miracles. Your strength and perseverance through hard things is nothing short of inspiring. Thank you for choosing us, choosing to stay even though it’s hard. I know that God has a plan for you and I can’t wait to see what great things you will do. I will continue to do everything in my power to get you there.
One fantastic speech therapist who was with us from the beginning.
20 days of supplimental oxygen
One now happy and healthy baby girl who is so lucky to be alive ❤️
And probably a lot more things that I don’t remember.
Looking back through this whole experience, what I cannot quantify is the blessings, tender mercies, and absolute miracles, from hundreds of prayers on her behalf.
We left the hospital successfully last night. She and I are staying with a friend right down the street for a few days until the kids’ fevers are gone.
Yesterday the breathing tube came out. She had been on morphine since Thursday of last week when she was intubated, had 2 new chest tubes, 2 bedside bronchoscopys and a CT scan.
Since taking the tube out it was now time to start taking away the morphine. First they switched from IV to oral, Then with the oral they slowly reduce her dose over 7 days. But even with that she is in serious withdrawal when it wears off and also a lot of pain. She screams, and thrashes her body around. Not even holding her helps much. They are trying other non narcotic pain management to go along with the morphine weaning.
Early this morning, because of the kicking and thrashing, she loosened an IV in her foot, so much that it ended up coming out. I was also concerned that this would happen to the line they had hooked up to her artery in her wrist. They use it for rapid bloodwork and instant blood pressure reading. They added some tape and said it should hold.
11:30 it was time for her chest tube to come out. I left the room for that cause it’s gross. I walked a little loop and came back opened the door and discovered that her ART line had wiggled out right before they took out the chest tube. They said sorry I know it looks like a lot of blood, but it’s under control. I said I told you so a few times in not super nice terms then I walked back out cause it’s gross. Just another minute or so went by and they told me it was all clean and the chest tube was out. I held her for a few minutes to calm her while they changed the sheets.
A few hours later they were checking in on her and decided she needed her nose suctioned out. She was not thrilled at this and once it was over we noticed she had pulled out her NJ tube. That is her feeding tube that goes all the way down past her stomach. Oops. They might have to put one back as an NG (just into her stomach) if she can’t pass a swallow observation.
So in a matter of 24 hours she has gotten rid of ber endotracheal tube, an IV, an ART line, NJ tube and the chest tube. Let’s hope she can suck and swallow ok so she wont need that tube replaced.
The talk amongst the staff is that Georgia is quite the spitfire and she takes matters into her own hands regularly. She is anything but predictable. And man am I glad she’s back.
Things seemed to be ok. She was fussy but she’s been fussy for a while I felt that she was just so tired of all the stuff and we were all just ready to go home. I grilled the staff with questions and what ifs. They were confident it was ok to go home. Since she met all their requirements we were discharged. I put her in her carseat and we headed downstairs to pick up her prescriptions. I thought maybe she was just tired and cranky and would fall asleep soon. She didn’t fall asleep.
I thought maybe in the car she would calm down. So we got her in and headed down the street. She was still crying. I told Matt that maybe I should just ride the train home because then I could hold her the whole time. I had been holding her since 6:30 this morning. We pulled over just down the street in a near by parking lot. I took her out to try and calm her down. I noticed that she was showing more and more signs of respiratory distress. She had nostril flares, retracting, a strange click like sound while gasping for air and these crazy panicked eyes. I told Matt that something wasn’t right, she was really struggling to breathe. I was convinced that the lorengomalacia was blocking her airway. I took her out of her carseat hoping to She was already on a portable oxygen tank so I decided to turn it up. From .12 to .5 liters.
We pulled right back up to the emergency department and I rushed in with her and quickly explained the situation to admitting nurses. Georgia’s oxygen rate would not go up until she was at 3 liters of oxygen flow. We went through and they put us in an ER room to wait while they got a hold of the team that discharged her.
She was still inconsolable. But not gasping for air anymore. After much effort I got her to sleep on my chest. Matt and I sat there in the calm trying to figure out what in the world could be wrong. I thought maybe it was the carseat making the GERD worse. Within an hour we were being moved to a new room in the same unit we were just discharged from. Assuming we were just going to be observed overnight Matt went to the Ronald McDonald room to do laundry for me.
I warned them that she was a screamer and asked to get the paperwork side of things done first so we do not disturb her until it was necessary. This was the first good sleep she had done since 6:30 am. We hadn’t even gotten through the paperwork when she stirred and woke up. I did my best to calm her but things went crazy.
The nurse paged the resident.
The resident came and looked her over and asked me a bunch of questions.
She held the black pager to her mouth and said rapid response IMSU Room 4035.
Grabbed my phone text Matt.
Come back now.
NOW.
She’s bad.
I’m fumbling my words. Trying to keep it together.
“They said she was fine…”
“They said we were ok to go home.”
“But then she couldn’t breathe… She’s PANICKING, and scared to death.”
People started to gather. I was told to put her on bed, so they could get a better look at her.
Once I let her go I was able to let go for a minute, I cried, some sweet nurse gave me a hug I took some deep breaths and put my game face back on.
It all happened so fast yet time was standing still. A gentleman came to my side and started to talk me through what was about to happen.
Thursday night was the hardest night I’ve ever had with her.
The daytime nurse and I both agreed that even though the swallow study didn’t show it, Georgia was aspirating breastmilk as well as any oral medications she took. I told her that I would like to treat it as though she was, to see if it helps. We brought it up to the resident in charge and she okayed it.
Georgia has never been great at taking the bottle, but in order to prevent any aspirations she had to exclusively bottle feed thickened milk.
Everytime woke up she was mad and uncomfortable I couldn’t do for her the one thing that has always comforted her. I tried to give her the bottle, but she would scream and refuse then fall back asleep. For hours in the middle of night we did this. I begged them to place a feeding tube because it was too hard. They said that we hadn’t given it enough time yet, eventually she will get hungry enough and take the bottle. A few hours later after very little sleep and lots of tears, I got her to take one ounce of milk in the bottle. Then an hour later another ounce, and another. Tears of relief filled my eyes. Maybe we could do this.
Friday Jan 24
The ENT resident came and we once again went over the entire health history. She told me they would be back in a few hours to do a scope of her airway.
Then we had “rounds” and went over the days plans with the team of doctors over Georgia’s care. They were equally as frustrated as I was that after all week in the hospital we had not found any answers yet. I asked them what we would do next if the ENT didn’t find anything, his answer was to look at her brain with an MRI.
The speech therapist came by again and we discussed how the thickened feedings were going. She agreed with us that based on what we were seeing she was silently aspirating. She taught me how to thicken the milk and how to test that it was the right thickness. While she was still there ENT came back and did the scope.
As they put the long skinny camera through her nose and into her throat they initially noticed a lot of swelling and redness. As the scope progressed to where her vocal chords are they noticed a flap of skin that would partially cover her airway when she was breathing in. He said this is called Larengomalacia. This flap was also red and swollen. He removed the camera and examined Georgia again while asking me some more questions.
Does she spit up? No. Does she arch her back? Yes. Does the get very fussy after feeds? Yes. Does she gasp for air while sleeping? Yes. Does she get angry when put in a sitting position? Yes. Will she tolerate being on her tummy? Not for long.
Through these questions and other bits of conversation between the speech therapist, myself and the ENTs they determined that she has been silently having acid reflux. Not only that but she has been silently aspirating her silent reflux.
He ordered two doses of even stronger steroids that target the upper airway and a daily acid reflux medicine. He said that in about a month when all the swelling and such has gone down he would like to do a sleep study and a repeat scope on her to determine how severe her Laryngomalasia is and if she needs surgery to remove the floppy tissue.
With mild to moderate cases most children do not need surgery because they will grow out of it after a few years.
I asked them if this Malaysia has anything to do with the delayed trigger they saw on the swallow study. Their answer to me was no, but the reflux does. Continued reflux desensitizes the tissue making it difficult for the body to know when to close off the airway.
The ENTs left and the speech therapist helped me understand different ways of feeding to help prevent reflux. We also went over different development delays that have been a result of the prolonged sickness and not being able to be put down for long periods of time. She recommended we work with occupational therapy and physical therapy to get her muscles and over all strength up.
Now the last piece of the puzzle was why did she need to be on oxygen.
Finally in the evening the pulmonologist came by. And once again I went over her entire history. After a very long informative conversation, she basically told me that Georgia has prematurety related reactive airway disease. This too was something that she will likely grow out of. But for now and the foreseeable future she has very sensitive lungs, she will be quick to wheeze when her lungs get irritated whether she gets sick, it’s something in the air, or in her current case she aspirates such a small amount of of liquid.
This confirmed this suspicion I had that the reason she had been sick for so long was a terrible cyclicle cycle. She would aspirate a little > it would irritate her lungs > she would wheeze > start to heal > Aspirate > irritate > wheeze > Non stop for the last 8 weeks. Throw the reflux and Malaysia in there and that is how we ended up in the hospital.
This was Not repeat viruses. This was not something she would just get over without intervention. It is really bad asthma in a 5 month old. It is a feeding problem. It is an anotomical problem and so much more. And because it’s been going on for so long, it is going to take a long time without any other hiccups for her to heal.
Into the night Friday and all throughout today has been spent processing this information. How do we help her now? And how do we keep her healthy? What is our new normal going to look like and how can I do it? Those were my biggest concerns.
She must take all her medication daily, that’s inhalers and acid reflux meds. She must only eat thickened milk or formula from a bottle with extra precautions to reduce reflux and aspiration risks. She will need sleep with her upper body elevated. She will need to stay on oxygen even at home for at least a month. Until we have all our follow up visits with ENT, and pulmonology. After that they will determine what her maintenance regime will be.
Saturday
It was so nice to have Matt and his parents come bring the kids up to see me today. I have really missed their sweet faces and the joy they bring me on a daily basis.
Georgia has spent the entire day sleeping, eating or crying. She wouldn’t even smile at me. It seems this whole experience has finally caught up her. They said that as long as she does well tonight we can go home tomorrow.
Learning to care for her unique needs along with all other things being a stay at home mom requires will be quite the adjustment.
I am so very thankful to all of you for reaching out to us in support and praying for her and our family during this crazy time. I’m so glad to have such a wonderful supportive husband. He has truly gone above and beyond while I’ve been away. I’m grateful to my inlaws for coming to ease the burden on Matt and be a bit of a distraction for the kids while I’ve been gone. I’m so grateful that my mom will be here for 2 weeks to help me adjust to taking care of Georgias needs and the kid’s needs at home. I’m grateful for the doctors and nurses that have cared for us and finally solved the mystery of the never ending bronchiolitis. I am nervous to take her home, and it is my hope and prayer that the treatments they outlined will work and our sweet Georgia will finally have some relief.
Most of all I am very grateful to my Heavenly Father who guided me and even carried me through this intense trial. Through my previous experiences with our other kids I can see how He has prepared me and I have become the Mom that Georgia needed. He has made my weaknesses become my strengths. Where I lack he has filled the gaps. I have learned more clearly how He communicates with me. Although I do not know what this year will bring I know through Christ all things are possible. I am humbled to have been given such a gift to be Georgia’s Mom. To be trusted with such a soul.
This experience has changed me for the better. I have grown. And I am grateful.
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.
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.
Yes you read that right. We tore down some drywall that was put up about 7 months ago and we moved some things.
You see what happened was, when we designed the laundry room we didn’t own a washer and dryer, nor did we know what we wanted. So it was designed for standard size front loaders. They would be along the wall on the right side at the back end of the room with a row of cabinets and a sink by the door.
Fast forward to a few weeks after we moved back in, we went shopping for the washer and dryer at a scratch and dent store in Salt Lake. We got a super good deal on the biggest set they had. The dryer holds 9.2 cubic feet! There are 7 of us, we do a lot of laundry. I knew the words ” I wish we had a smaller washer and dryer” would never come out of my mouth. AND think about it for a sec, our kids are young, their clothes are small. The children, their clothes and in turn the laundry piles will only get bigger. So my point is they are perfect, and it makes me happy… Anyway… Back to the story..
We put them in the Laundry room, they did fit but, because of the way the plumbing was set up the machines were really far off the wall. This meant that their doors nearly touched the wall across from them and the laundry room door when opened fully was just inches away from the dryer. So in essence it made doing the laundry a bit of a hassle. There was barely enough space for a sink right at entrance but definitely not cabinets. It was just a very poor use of space and we realized quite quickly that we would eventually need to redo it.
So eventually finally started this month! Matt tore out the drywall, our friend James is a plumber and moved all the lines for us one Saturday, then this week Matt did a little extra framing and put the drywall up. Then he got it mudded and ready for paint!
Thankfully he was able to pull this all off in just over a week and a half. We only had to use a laundromat once!
The room still needs paint and cabinets but it’s functional again, a lot more functional I might add.
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.
2019 was another big year for us. Starting the year in our new-to-us old home making remodel plans and an unexpected but much celebrated pregnancy. Stephanie got baptized and was supported by many friends and family. We went to Legoland and the contractors started our remodel. We lived in several different places (hotel, Air BNB, friends and family members houses) while they took apart and rebuilt our house. Everything always took longer than expected. In April we went to Arizona for Allie’s Baptism.
In June we moved back into our much unfinished home with no kitchen, no flooring and one functioning bathroom. The kids finished their first year at a public school Franklin Discovery Academy. We took a much needed family vacation back to California and loved it. We came home and it was our turn to do the projects on the house.
Summer was full of lots of play time with friends and lots of projects. We received so much help from family and friends in many, many ways and we are so grateful. We couldn’t have gotten this far without it. One such person was around so much and had such an impact on our family, He is all Drew talks about still. He says his name dozens of times a day. Uncle Bennie. Even though my Grandma’s brother hadn’t seen me or probably even thought much about me since I last saw him 15 years ago, He showed up and helped. He helped with installing flooring, replacing the subfloor, irrigation, excavating and leveling the backyard, tree removal, getting up early picking up multiple trailer loads of bricks by hand, preparing and pouring our cement patio.
Baby day!
At the end of August Georgia made her quick arrival after a very physically taxing and stressful pregnancy. She has completed our family and filled us all with joy and awe. She is beautiful and perfect.
Fall started a new school year, and the season of sickness and surgeries. Matt had a surgery to fix four issues in his sinuses and is happy to report he can breathe through his nose MUCH better now.
First day of a new school
Georgia has got bronchiolitis once a month since birth. Thankfully she was healthy enough in November She and I made a quick trip to California to celebrate the life of my Aunt and visit with family. Then the following weekend was her Blessing day. We had many family members in town to participate and celebrate this day with us. It was a beautiful experience as our sweet last baby was surrounded by loved ones and her Dad gave her a special Blessing. We continued to celebrate this gift of life at our home with a dinner of Thanksgiving. That weekend and days following filled with family and friends were so wonderful and filled our hearts with so much joy and gratitude.
November 27th Josh and Lucas had surgery to have their Tonsils and adenoids removed. That was a very difficult time. The boys were in lots of pain all day and all night for 2 weeks. At one week after the surgery Lucas had a tonsilar bleed. A crazy rush to primary children’s hospital in salt lake, He lost a lot of blood and needed to go back into the Operating Room to stop the bleeding and pump the blood out of his stomach. He was such a champ and had no fear. It was a very long night and our sweet friend Wendy came to our aid no questions asked. She stayed up into the wee hours of the night and took care of all our other kids, and her husband Brian brought Matt up to the hospital so we could be together with Lucas. We are so thankful for them.
In mid December just as the image of Lucas coughing up blood was fading out of my mind it was time for a few more projects to get our house ready for Christmas. We were very selective this year and didn’t give our kids toys. They got things they need and gifts of family fun and memories to be made.
Finally on the 28th of December for the first time in years Matt and I were able to attend the temple. It was extra special because it was our first time in the Salt Lake Temple and it’s very last session before it is closed for 4 years for renovations. It was nice to be together in such a special and beautiful place. I really miss spending time in the temple. I am grateful that we have moved to a place were they are so easily accessible to us as a family with young kids.
We spent our New year’s Eve in service to friends, visiting some elderly friends and seeing some spectacular Christmas lights. A perfect way to end the year.
We had a big year full of many blessings and many trials. We have learned so much and grown closer as a family. We look forward to a New Year, and growing closer as a family and even closer to Christ as we study the scriptures and follow the teachings of President Nelson.
Love,
The Burk Family
Enjoy some other pictures from our year year
Some of our other amazing helpers!
the kids enjoying summer break!
summertime California trip
spontaneous viewing of the 4th of July fireworks at thanksgiving pointSummer was also full of dogs. lots and lots of dog sitting. flooring is done and cabinets are waiting in the background to get installed We love our gummy! she spent many weeks with us after Georgia was born.Visit from Grandma and grandpa burkTrip to park city to see the hot air balloons with Grandma and Grandpa Apple, Uncle Scott and Harmony . Helping Daddy refinish Stephanie’s new bunk bed that we got for free!a walk in the fall with my boys Georgias Baby blessing
Stephanie and Joshua had a Christmas concert at school. Their music Teacher Mr. Woodruff accompanied them.
Family photo in the snow on the last Sunday of 2019
Building the Burks 