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.

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.

 

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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.

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Post Christmas fever

I guess we can't really call it a Christmas gift can we? Maddy got re-admitted to TGH yesterday afternoon because she was running a fever. Let me backtrack a little since I didn't post anything after she got out last week. Things were ok after discharge. Her insurance wouldn't cover the Zyvox, which is the antibiotic the docs wanted her on. Instead they gave her doxycycline which was the back up choice. The first few days out were ok. Then on the 23rd and 24th she started getting nauseous all the time. She thought it was the doxycycline so she just kept taking the medication the doc gave her for nausea and soldered on. We had an ok little Christmas Eve lunch with Ethan at the house then he gave Maddy a ride to Melissa's. She told me later that over the next few days she weaned herself off the pain medication because she thought maybe that was what was making her sick and it had stopped working for her anyway. She also started getting a little bit of runny sinuses and goopy eyes. Guess she may have come down with something new. Because by Friday night she had a fever. She took Tylenol to see if that would help. Saturday morning it was still there so she called the doctors. They direct admitted her again and got to work.

Yesterday they did a repeat CT scan and another chest X-ray this morning. The doctor also started her on a course of anti-fungal breathing treatments just in case. The cultures last week didn't show any fungus but because the pneumonia doesn't seem to be responding to the antibiotics as quickly as we would like to see he wants to cover all the bases.

The doc came in a minute ago and said the CT scan shows improvement. He is going to work on getting the insurance to cover the Zyvox and maybe she will be able to go home on that next week. In the mean time her fever has broken and her sinuses seem to be clearing up. Yesterday we were a little freaked out that the pneumonia was going to really cause a lot more problems. I think the fever was a secondary infection. We are still waiting for the cultures and virus panel to come back but she seems a little better today already. I think the big deal now will be pain management. She is stil in a lot of pain and can only have the pain meds every 8 hours. Yesterday she was really bad for the last two hours of that window. This morning she was able to go an extra hour before having to ask for pain meds. Probably because she has been "sleeping" and not as active. Like how I put sleeping in quotes? Because there is no real sleep in the hospital!!!

Anyway that's the update. I'm hoping she gets out next week before New Year so we don't have to spend another New Year's Eve in this place. On the bright side if we do, we have a good spot to watch the fireworks from.

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Going home

Did I mention she has pneumonia? Yeah, caused by a staff infection. The doc says probably a month before she really feels back to normal. What ever normal is! She thought she was going home yesterday but then she got sick after breakfast so they kept her an extra day to keep an eye on her. The test for C-diff came back negative so at least it's not that. She feels much better today so he's comfortable sending her home.

14 days of strong antibiotics to fight the pneumonia. He is giving her pain meds so she can be active while fighting the pneumonia, which is very important. I have been hanging out since I got off work last night and Maddy has looked and sounded much better in that time. We even walked down to Starbucks for midnight coco! It was a very nice evening.

One last thing, he wants her back in one month for another CT scan. If any of the infection persists he will have to do a bronch to see what's going on. Hopefully it will be all cleared up by then.

Looks like he doc forgot to bring his RX pad so we will be stuck here until he can get back with her pain script this afternoon. Oh well, at least the end is in sight! Thanks again for all the prayers. Merry Christmas!!

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Pneumonia and high blood sugar

Here is the latest on Maddy. I will post a few quotes from her FB page.

Here is what Maddy had to say yesterday...

 

Update. He put me on tramadol and norco so I guess the X-ray came back clear idk for sure. The pain meds have made me feel 100x better. I think he understands unlike everyone else that my lungs are getting worse because I can't get rid of any of the rsv lung lining or anything else because I'm in to much pain to move, cough, or take a full breath. Finally someone gets it. Hopefully the rest of the tests come back clear and he just sends me home on steroids and some pain management so I can clear all this junk out and be active and eat normally again.

Here is what was up today...

the dr came in and said he was sorry none of the other drs have done anything about my pain for a month. That he can tell how much better I feel and that we need to get to the bottom of why the pain is here in the first place. That the X-ray showed pneumonia in my right lung again so they are doing a CT to see how much infection there is and to make sure there's no infection around my lung that could be pushing on it causing me more pain. Then obviously he will see what to do from there as far as keeping me here and antibiotics and everything. He even offered stronger pain meds I said I'm ok for now but at night I might need them since I woke up at 2am in pain and wasn't due for more meds until 4:30. He said just have the nurse page him and he will get me stronger ones if I need him. I love dr floreth he is the only one who listens.

The CT scan didn't happen today because they are so backed up. Hopefully they will be able to get her scan done tomorrow. The only other thing going on is high blood sugar from the steroids. Anytime Maddy is on high dose steroids she gets drug induced diabetes. She has needed insulin both yesterday and today. Today she had a big spike in her blood sugar and it took them forever to get her dosage information to her. Poor girl. The doctor said he will be weaning her back off the steroids as quickly as possible so it shouldn't last long.

That's about it. Hopefully we will have a solid plan of action after this CT scan comes back. We hope they get her better and out in time for Christmas!

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The plan so far...

Not much rest to be had in the hospital as usual. Finally got to settle in around 3AM. She is trying to get some sleep this morning and they are trying not to bug her too much. The doctor came in a little after 9 this morning and said they should have most of the tests back by tomorrow. The chest X-ray they got last night was a bit hard to read because her synthetic hair was in the picture obscuring the top of her lungs. He said the bottom looked clear so just make sure they move her hair out of the way when they repeat it today. Hopefully there will be no signs of pneumonia. They took cultures to check for viral infections last night and because she is having chest pain they just did an EKG to make sure her heart is ok.

One of Maddy's main complaints is that she is in constant pain, in and around her chest. Her lungs feel like they are on fire, especially when she takes a deep breath. They can't give her any good pain meds until they rule out pneumonia and heart problems so she is in a waiting game for pain relief. Dr. Floreth saw her this morning and said as soon as he knows she doesn't have pneumonia he will write her some orders for better pain management. Which is a relief to Maddy because she was getting really frustrated as you can imagine.

I have to work today so I'm heading to the station in a little bit. I'll try to update again tonight if we have any more news to share.

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