Day 14 @ Le BonBon

8/22/2024

We moved to the respiratory floor around 7PM last night.

The respiratory panel (virus test) they did yesterday was negative for everything. They did a chest xray yesterday too and the results came back around 11AM today. Results stated:

There are worsening multifocal airspace opacities in the left lung and right lower lobe, could represent multifocal atelectasis, multifocal pneumonia or layering pleural effusion superimposed on mild pulmonary edema.

When they say “there are worsening” it is in comparison to her last chest x-ray on August 8th. They are going to do some lab work (they came and drew it at 2:30PM) and see if it shows any indication of infection for like the pneumonia. Multifocal atelectasis is the collapse of part of the lung in different areas or all of a lung. Her lung is NOT collapsed. That would show on the x-ray and she would have some breathing issues and she has not had any decreased oxygenation today. Pleural effusion is water inside the chest wall, ON the lungs, around the lungs and can be caused by several things, one being pneumonia. Pulmonary edema is too much fluid IN the lungs. This can start out as pleural effusion and progresses to pulmonary edema. The cause can also be due to pneumonia.

Obstructive sleep apnea (OSA) can cause stress on the heart so they are going to do some heart labs (a BNP) and also mentioned an echocardiogram (echo). She had an echo done on July 15 while she was here so thankfully there is something recent to compare it to should there be any changes. I think they are trying to cover all of their bases, which I appreciate.

The problems we have had at home with her acting like she is being strangled could be a laryngospasm (luh-RING-go-spaz-um). It is when the vocal cords spasm, making it difficult to breathe and usually goes away after a few minutes. Acid reflux can be a cause. Maci does have reflux and takes medication for it. It could be that it’s not working as well any longer and needs to be changed. They are going to do a pH test possibly next Wednesday, 8/28. She has to be off of her reflux medication for 5 days prior, Wednesday was the first available time for the test so it works out. They are also checking with ENT to be sure it is ok with them and enough time has passed from her T&A (tonsillectomy and adenoidectomy). With the pH test, a thin tube will be placed in her nose or mouth, into the stomach, then pulled back into the esophagus. A monitor is attached to the tube to record the pH level for 24 hours. While I was still typing this ENT came in and they said it would be fine for her to have the test but it was preferred that they go though the nose.

**UPDATE** ENT has cleared Maci for the pH test next Wednesday.

They have requested from insurance an apnea monitor for home. It is more sensitive than the pulse ox machine we have. They also said they were going to try to get me home nursing care. I wanted to laugh but I didn’t. I told them maybe they could find an agency with staff because I haven’t been so lucky in my search of calling multiple agencies who are experiencing staffing problems due to the pay or not offering benefits.

**UPDATE** Pulmonology stopped by and said that the apnea monitor was not more sensitive than the pulse ox so we will forego trying to get that approved. She is going to look into possibly finding other sensor attachment options that the Wild Child will not remove. 

Maci slept pretty well last night on the air machine like what she uses at home and did NOT require oxygen. She has a cough and will sometimes wake up and whine a bit. I think that could be from the coughing possibly hurting her throat. She has been awake a couple of times this morning but goes right back to sleep and is still sleeping (1:30PM). She has had the cough since either Monday night or Tuesday. Lab came in at 2:30 and she woke up with the blood draw. She is VERY fussy, nothing will sooth or calm her which tells me she doesn’t feel good. She is getting her chest PT right now (2:45PM) and semi-enjoying it but she normally loves it.

**UPDATE** All labs were good.

I have a recliner!!!!! I had ordered a neck pillow with my groceries that Jess brought up yesterday morning. I fell asleep around 11PM last night, woke up at 6AM to talk to the ENT surgical team who was following up, went back to sleep, woke up at 8 when the nurse came in to give meds and fell back to sleep until the floor doc came in at 11:30! I FINALLY got some good sleep and didn’t wake up feeling like I had been run over by a Peterbilt. I have a sore throat, ears are popping and drainage so here I sit with a respiratory infection so I am staying out of Maci’s face and minding my business across the room. I swear I thought I was going to end up with pressure sores from the other chair.

Things overall did improve on the 12th floor before we left and so far so good on the 11th floor.