It's hard to write an update, but I'll try. Abby is pretty much the same. She gets worn out really easily, can't go outside in the heat, and her oxygen levels go down when she walks up the stairs. She is getting nebulizer treatments and is doing the cough assist 4x a day, she gets wound care 3x a day, sometimes needs bipap, and then medicines are on a different schedule, so I feel like I'm constantly doing something medical! We are also keeping lots of documentation of her various numbers and when she needs to go on bipap so that we can prove to the insurance company that she needs a more portable bipap with a battery (the one we have right now doesn't have a battery, so it isn't portable.)
I've been in close contact with pulmonology and we have an appointment on Wednesday. Our pulmonologist doesn't want us taking Abby anywhere except doctors' appointments, so that is what we have done. She's pretty concerned about Abby's respiratory status, considering she averages 65 breaths per minute these days.
I've been in close contact with pulmonology and we have an appointment on Wednesday. Our pulmonologist doesn't want us taking Abby anywhere except doctors' appointments, so that is what we have done. She's pretty concerned about Abby's respiratory status, considering she averages 65 breaths per minute these days.
Abby doesn't seem to care too much about staying home, but Caleb gets bored. I'm trying to keep it fun around here while also trying to get some things done during the time we are home. My mom has been a HUGE help!
Lots of people have brought smiles, either with visits, texts, calls, or sending cards and packages. We are so thankful! Yesterday, caleb and I spent some quality time together at a movie and dinner. It was fun to hang out with just him.
Unfortunately, the special template that was put on Abby's wound to stimulate skin regeneration started coming off of the staples a few days ago. Despite contacting our surgeon, sending pictures, and doing exactly as he said, it came off completely 2 days ago. It's disappointing because we wanted this to stay on until surgery to give her wound the best chance. Our surgeon has us doing wet-to-dry bandage changes 3x a day now, and we are hopeful that this will work.
This is tough, guys. It's hard to see Abby like this and she is frustrated with her limitations. We have a lot of decisions to make, and we are looking to our pulmonologist to give us some guidance on where to go from here. Please pray for our appointment on Wednesday.
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Janice Maksim