Finally we have Answers

Thursday night

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.