Saturday, January 31, 2015

Combatting the Antibodies

Things are mostly quiet around here. Maddy gets a little stronger each day. The headaches have subsided and her Co2 levels are just about in the normal range again. Her overall mood in pretty good and her spirits remain (as always) undaunted. Now that we have the Co2 under control she needs to work on rebuilding all that lost muscle and weight. So it's eat, eat, eat! But good luck getting a good meal in the hospital!

We are still on hold until the home health company brings us her BiPap machine, which is actually a ventilator. I got a call on Friday from the company who services Maddy's O2 and will be providing the machine saying they have to do a home assessment before they can bring the machine. I had to meet their Respiratory Tech at the house and answer a hand full of questions. It was all very silly but I understand why they have to do it. Because we didn't get that done until late Friday I'm not expecting they will get us the equipment before Monday, maybe even Tuesday. Which means we are suck here because the docs want her to sleep with the home unit at the hospital for one or two nights while she is being monitored before they let her go home on it.

In the mean time her latest blood test results for antibody levels came back and she is back in the "high" range. So they ordered her to start doing IVIG again. You remember IVIG right? It's that IV treatment that is like a mild version of chemo therapy. Takes quite a few hours to infuse, usually makes her have an allergic reaction and leaves her feeling like hell for a few days after! We thought the doc said she is too weak to attempt these treatments to remove the antibodies at this time. But yesterday the doctor said Maddy has improved so much in the last few days that he wanted to get right on it. Dr. Rolf came in this morning and confirmed that they will want to do IVIG monthly until we "knock these suckers down again". He is also going to consult with another doctor to see if she is eligible to do a treatment we haven't tried called Photopheresis. (not responsible for the accuracy of the wikipedia content in the attached link)

So thats the game plan now. Get machine for home, stop retaining Co2, gain weight, fight antibodies and see how much better she can get. We are going to watch the Gasparilla parade from our hospital window now.

Thursday, January 29, 2015

Hanging in there


Things are going ok here. Maddy is getting a little stronger each day. Yesterday was mostly good. She was able to eat better than she has in a while. She also had a few visitors who kept her spirits up throughout the day. No more headaches yet. Dr. Haddad came in this morning and said if she gets a headache it could be be a sign she is retaining Co2 again and she should put on the BiPap until it goes away. Another bright spot in the day was the ballons above. One of the record labels I work with sent them to her in the morning. It was very sweet and brightened Maddy's day!

Although the activity is good for her and boosts her spirits she seems to be paying for it a little today. She didn't sleep very well last night, not that she ever sleeps well in here, so that's not helping. She seems a bit more worn out today and her back has been giving her fits this whole time too so that's a bit frustrating. The other thing going on right now is that she still has really bad tremors. That's one of the symptoms of the Co2 overload. But it's also one of the side effects of her anti rejection medications. Not sure why they are so bad right now but it's bothering her.

On another bright note, we had one of our favorite nurses yesterday, Flavia. At one point we were talking about video games for some reason and reminiscing about Maddy's days in the children's hospital when they had an Xbox in each room and she would bring her guitar hero for jam sessions. Well without telling Maddy, Flavia called the recreational therapy people and put in a request for a video game system. So this morning they came around with a Wii and a bunch of video games! When I got back from work Maddy was playing guitar hero! She looked up smiling and said "Flavia is my hero!" So sweet!

Other than that we are just taking things a little at a time. Still waiting on word of when they will have her machine for home. I think once we get the machine they will train us in it and then they want is to use it here at the hospital for a few nights while they monitor Maddy. Then we take it home and go at it.

Thanks again for all the prayers and positive thoughts. I'm still processing the fact that there is no chance of getting Maddy re-transplanted. Maybe I will post some thoughts about it on my personal blog but I'm not sure yet. Maddy has decided that she just wants to make the best of the time she has left. So short of a miracle, which you can pray for by the way, please pray that Maddy gets strong enough to be able to get out and about again and have a little bit more of a life before things get worse.


Wednesday, January 28, 2015

Carbon dioxide poisoning


Well Maddy just can't seem to get any breaks. Now her lungs have began to fail to the point of that they are no longer able to properly scrub the Co2 from her blood. The long and short of it is we came to the Pulmonologist because she has been fighting killer headaches and massive fatigue for about two weeks now. Toward the end of last week they got so bad that she could barely get out of bed each day. When her condition didn't improve we called the docs and they had her come in. They did an arterial blood gas and her Co2 level was 70 when it should be 30. So they checked her into a room and put her on a BiPap machine to help her lungs clear the Co2. She was on it continuously for 14 hours then the doctor said she can take it off when she is up and active but when she goes to bed or takes a nap she needs to have it on. Having the mask pressed against her face and the pressure from the BiPap machine gives her really bad anxiety and hasn't really made her feel any better yet. They are working with the insurance to get a home machine ordered. Once that gets here and we are trained on it I'm pretty sure we can go home.

Not sure how to put this next bit delicately but I will try. At this point the doctors say there is nothing else they can do to make her better. She is still in rejection so they can't work her up as a transplant prospect. If her lungs continue to fail the only other option is to put her on a ventilator and if they do that her lungs will never be strong enough to get off agin. So the option if things get worse is to try and prolong her life on a vent and see how much longer that gives her or allow her to pass on without using any extraordinary measures. Right now Maddy is fighting with all the strength she has but honestly that strength is failing. She does not want to spend her last days connected to a ventilator. She also does not want to suffocate to death. She has heard of people in not too disimilar circumstances getting put on a vent and being able to come out stronger. I do not know if this is a possible outcome for her but I would like to believe it is. So far the only doctor in the group who has an opinion about it has told us that is not an option.

We came in Monday at 1:00 and I wrote all of the above on Tuesday. It's Wednesday morning as I write this and I'm waiting for the doctor to come by. The dr who admitted us had mentioned calling in palliative care, but dr. Rolf didn't mention that at all yesterday and we have yet to hear from anyone regarding end of life issues. Dr. Rolf's attitude when he did rounds yesterday seemed very positive and upbeat. He was so jovial and quickly in and out we barely had time to process what was going on. Later we asked if he could come back and talk to us so we could get his point of view of this whole situation but he was already on with he day of procedures and said he would speak to us tomorrow. Which is now today. Maddy and I talked about it yesterday while it was quiet in the afternoon between all the in and out activity of a hospital day and came up with a hand full of questions we intend to ask him today. My first question is regarding the difference in treatment from one doc, mr gloom and doom if you will, and the other, all rainbows and sunshine. We would like a complete picture and don't know if the pessimist is being over cautionary of if the optimist is being too cavalier. I will not leave you in suspense. I will save this blog and wait to post when I have all the answers we are looking for. And now you know why we have been so silent these last few days.

10AM Wednesday and we just finished speaking with Dr. Rolf. First question was "is Maddy on her death bed?" Answer; "I don't think so, but she's not in good shape." Here is Dr. Rolf's take on the whole situation. Maddy's antibodies are the most resistant kind to have. One type of antibodie she has he said thay have never successfully removed from anyone. In her current state of health they can not even attempt another run at fighting her antibodies. So that door remains closed for now. The Co2 poising Is what caused her rapid weight loss and is the reason she is been so out of it and weak. He said the BiPap machine will help that. Her blood work is already starting to look more normal. As long as she can tolerate sleeping with this machine every night she should be able to start getting her apatite back and get stronger. I asked what we can expect as far as quality of life is concerned in her current state. He said if she can start eating and put the weight back on we can expect a quarter to half way decent quality of life.

All and all I would say not quite as bleak an outlook as we were given on Monday.

The current plan is to be in the hospital until we can get the equipment issue worked out with Maddy's insurance. They will concentrate on helping get her appetite and weight going back in the right direction while we wait. He said we should pick out our vantage point for the Gasparilla invasion because we will be here through the weekend.

Maddy seems to be feeling stronger this morning. It is apparent to me that the Co2 issues are clearing up. She is still too weak to move about on her own, but said she wants to try to start going for walks to build her strength back up.

Thanks again for all the prayers and positive vibes. Maddy will continue fighting and we will take it day by day.