Setteling in at home

We got Maddy out of the hospital and home on Tuesday. Been trying to get everything settled in and switched over to Hospice care. There are a lot of little steps involved but it's moving along. It's very hard to think and talk about Hospice care but it has proved to be a fairly positive experience so far. With the exception of a few problems getting Maddy's pain medications to the house on time things are going well so far. I appreciate that the attention has not switch to focus on quality of life instead of simply prolonging life at the expense of happiness.

So the goal now, and I'm sure Ive said it before, is to make Maddy as happy and comfortable for as long as she has left. We are still working with the Transplant doctors to irradiate as much of the antibodies that are attacking Maddy's lungs as we can. This means that we are still giving her the oral anti-rejection meds Prograf, Cellcept, and a low daily dose of the steroid Prednisone. She is also scheduled for monthly IVIG which will hopefully bind up some more of these antibodies and give her a higher quality of life. She is no longer going to accept any treatment that will not make her life better. No point suffering if there is no cure.

Her pain level is still somewhat unpredictable. The long acting morphine is doing it's job for the most part. She gets it around the clock and it keeps the pain in her lungs to a dull 3 or 4 throughout most of the day. Every now and then she has an acute rise in pain that requires her to take a Norco. Yesterday she told me the pain is no longer a stabbing pain but a throbbing ache when it increases. I'm not sure if this is a good or bad sign but I would take throbbing over stabbing most days. The pain is now present in both lungs but her right side still has the majority of it.

Last night she had a pretty bad coughing fit. when she coughed it sounded like a big ball bearing rattling around inside her chest. We are use to hearing stuff rattle around in there from her CF mucus moving days but this was unlike anything we have ever heard. Turns out it was a pretty big mucus plug that she was able to cough up and get out in two pieces. I know this is really gross to read about but my CF community will know that this is something to celebrate. There was no blood in it so we know her lungs are not breaking down at the moment. At least not in a major way. Hopefully this will continue and she will be able to open up some more of her blocked airways so she can breathe easier.

Maddy is still very weak but has been able to be awake all day, every day, since we got home. She still can't make herself food or walk around the house too much but she spends the day in the living room and only spends the night in bed. That is a huge leap forward from last week in the hospital. She is also eating more and more every day. I'm hoping she will be strong enough to start venturing out again soon. We have her wheel chair and just got a new portable oxygen concentrator which will allow us to get out for longer periods of time. I am working on a hack to mount the thing to her wheel chair because it's a bit bigger than we expected it to be. Ha Ha.

Because she is on such heavy pain meds and is still so fragile we can't leave her alone at all. She is both bummed and comforted by this but we are all making the best of it. I'm working out a schedule with family so that I can get to work on a more regular basis and hopefully I will be able to take on my air shift again starting next week. The good thing is that the radio station is less than 5 miles away so I can be back to the house at the drop of a hat.

Not sure what else I can really share here any more. We are working at managing Maddy's pain and halting the progress of this rejection so that we can maximize her quality of life for as many days, weeks, or months she has left. She is doing well and getting stronger but she is still in a very precarious state. Any little setback could be the last setback so we are being very careful and trying to make sure she has as many good days as possible. I will not take for granted one single moment I have to be with my lovely daughter!

Thanks again for all the prayers. Don't expect many updates. If there is a crisis I will try to post something to keep everyone in the know. But otherwise we will take some time away from social media and the web to be here with and for each other as a family.