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.
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.