Update: Bonnie is doing well physically – we walked 2 laps this morning at 4 AM. Mentally and psychologically, she is struggling. She did not pass her swallow test yesterday [Fiberoptic endoscopic evaluation of swallowing (FEES)]. They will not reassess her for another 5 – 7 days. What this means is she will not be able to eat or drink anything until she passes that test. The reason for this is to protect the new lungs. If we swallow something and it goes down the “wrong” pipe, we will cough and be uncomfortable for a few minutes, but our immune system will clean up the mess. Bonnie’s immune system would attempt to “clean up the mess” as well… the problem is this reaction most likely would cause her to experience acute rejection. And since her lungs are still healing, this would not be an ideal situation. She is not happy about this (especially no coffee). Bonnie likes to eat but it is what it is and she understands the reasoning behind it.
The medical team pulled the epidural yesterday. It had been 6 days, which is about the normal amount of time they leave them in. The medicine they were giving her through the epidural was starting to have side-effects that were negatively affecting Bonnie’s rehab and overall well-being. This of course has led to increased feelings of pain/anxiety as the medicines they are now giving her for pain are not as powerful as the epidural was. The pain should decrease daily as she continues to heal and grow stronger, but it does make rehab, deep breathing, and swallowing exercises more difficult. She is also down to 3 chest tubes from the original 9 that were placed. Only one of them is still on suction. The Doctor’s did indicate that they see a small pneumothorax so the suction on the line near it will remain in place. Her left arm was also noticeably more swollen than the rest of her limbs, so they scanned it and found a small clot in that arm. They are not worried about it migrating at this time, but they did prescribe heparin in effort to reduce and eventually eliminate the clot.
Ms. Sheila is doing such a great job. I would go clinically insane if she was not here. We have a system worked out, she spends the day and I spend the night. Bonnie is still on a full regimen of multiple antibiotics and anti-rejection medication that is delivered intravenously. It is important to Bonnie that either me or her mom are here when they invariably wake her up to start or end a treatment draw bloodwork for labs, give her shots, etc. This means no rest while at the hospital. I attempted to sleep the first couple of nights and it did not work. I would wake up ill, Bonnie would be half asleep and scared, and the nurse would just be doing their job. It was unfair to Bonnie and the nurse to have an ill caregiver from being woken up. About every 30 minutes. So I have taken to sleeping during the day. I am not fully adjusted to this arrangement but each night gets a little easier.
I am honestly a little loopy as I type this post – but I wanted to get it done before I go back to the apartment – so I apologize in advance for any typos or grammatical errors. I overheard the transplant coordinator yesterday mention discharge, specifically if Bonnie will need a CPAP or BIPAP machine at the apartment once discharged. I have not mentioned this to Bonnie yet, but it would not be out of the ordinary for a lung transplant recipient to go home on one of these machines. Her lungs will not be fully filled out and permanently in place for 3-6 months. These machines ensure her lungs stay fully inflated so they can heal properly, help reduce CO2 in the blood stream, and keep her O2 saturation at the desired level. Bonnie is doing okay so far sleeping with a BIPAP, I just don’t know how she will react if they tell her she must stay on it once discharged. She is not mentally prepared yet to even think about discharge, so it was surprising for me to hear the team discussing it.
Lucy is being a trooper. You can tell she misses Bonnie because every time I come in the door she runs past me and waits at the door expecting Bonnie to follow. Per Ms. Sheila Lucy is doing well on her morning and evening walks.
Thank you all again for the love and support you have shown Bonnie, Ms. Sheila, and me. The text’s, emails, and cards have provided the emotional support we all need during this trying time. There have also been numerous messages from transplant recipients that help me (I can’t speak for Bonnie and Sheila here) stay mentally in the game. That’s about all for now I guess, the nurse just came in with some more medicine, and Bonnie is calling out for a hand to hold. Thank you all and have a great day,