Some thoughts on a life well lived

Maddy’s life was way too short! But that little girl packed more living into her 22 years than most of us would be able to put into 100. Not a day goes by that I don’t miss Madelyne. Everything reminds me of her. I am fortunate that many people are still reaching out to me and sharing the impact Maddy had on their lives. Just this morning, for some seemingly unknown reason I received a message on Facebook from someone who Maddy helped. I won’t post her last name just in case she doesn't want the publicity. Here is the message. 

From Nickie;
Hi there! I never knew your daughter personally but I always read your blogs on her conditions. She helped me through a lot of my health issues through tumblr the past couple of years. We kind of related even though we have different health problems. .. she is an angel and a wonderful being. And you guys deserve the best! You were always by her side. And I just hope that things are going alright for you now. Keep your head up! Sorry if this is delayed or weird. I just found your Facebook and maybe thought I should say something because she is still my hero.

Nickie lives in Ohio and, as she mentioned, never met Maddy in person. Nickie suffers from an autonomic neurological disease. I asked about her health and am happy to know that her disease is being managed at the moment.

People from all over the U.S. and even some from around the world have reached out to me and told me that Maddy gave them encouragement to fight what ever struggles life threw their way. Maddy loved being able to share her insights with those who reached out to her and asked for help. She told me on multiple occasions that if she had to go through all those treatments and shitty hospital stays that at least she could share her struggle with others in the hopes that it would encourage them to continue their own fight. Maddy never tried to compare her trials to others. She always just shared what she was going through and inspire people to face what ever they had with the same ferocity. Nothing saddened Maddy more than to hear of someone giving up their fight. 

As I sit here thinking about the life my precious daughter fought so hard for I can’t help but be the most proud father in the whole world. It is good to know that Maddy lives on in those she touched. Thanks to all who have shared stories of how Maddy touched their lives. Please don’t ever stop sharing them with me. More importantly continue to share her story with the world.

I can only hope to live a life with half as much impact as Maddy did. 

Shattered World

4/23/15

The weird thing about living in a shattered world is that you never know when you will fall in the next crevasse. Things have been going really well for the last few weeks. Sometimes it feels like they are going too well. It’s like one of those mountain explorer movie where everything is going great. The explorers are almost to the next base camp.  Then, wham! Somebody falls into a crevasse and drags half the supply down with them. I often think of describing life with the grief of loosing my child as a rollercoaster. But rollercoasters are thrill rides and this is certainly not. Don’t get me wrong, life still has some amazing thrills in store for me. I just know it! But I still struggle daily with the grief. 

No one on the outside would ever know how much pain is on the inside. Isn’t that the way we approach all of life? Seriously, with the exception of the fact that I can’t get through broadcasting prayer time on the radio without breaking up a little and crying, no one would ever know I’m still grieving. Sometimes that makes me feel a little guilty. I use to feel guilty about leaving Maddy at home while I worked or to go out with friends. Now I feel guilty about not crying for her more often. I know it’s stupid because Maddy would not want me to be sad all the time. She told me so before she died. So why do I sometimes feel guilty about being happy when I know thats what she wanted? 

Back to the shattered world I live in. It’s really weird how the littlest thing can suddenly snap me back to Maddy’s last few weeks. Seeing her friends still grieving for her on Facebook is probably one of the most common ones. I can hardly scroll through my news feed without seeing her picture pop up. If not in an actual post then in so many of her friends who still have selfies of them and Maddy posted as their profile pictures. It’s wonderful and painful at the same time. 

5/5/15

I just returned from my annual benefits audit for work. You know what I’m talking about, that annual check in where they make sure all your information for insurance is correct. Our diocese hires out a company to travel around to the parishes and schools to accomplish this without everyone having to travel across to St. Pete to make it happen. Which is very kind of them. The same person comes by every year and we sit down with her for a few minutes and the inevitable chit chat goes on while we wait for the slow computer to catch up. First question out of her mouth is “how are your kids”. I knew this was coming because she is a very kind person and always remembers (she probably keeps notes) from year to year. But hearing the words and knowing the response I inevitably have to give is always like a punch in the gut. Then comes the also inevitable attempt at kind words that always makes both people uncomfortable. It’s not anyones fault and there really isn’t anything anyone can do about these kind of interactions that must take place. But sometimes I just wish they didn’t have to happen at all. 

The other day I experienced what I believe is my first little feeling of regret. I had one of those moments when I knew Maddy was visiting me in the form of a butterfly. It was a beautiful moment and I know she sent it to let me know that everything was alright. That she approved of the way I am living life. But the only thoughts my mind would entertain at that moment were “why couldn’t we have had just a few more good weeks together?” I wanted so much for Maddy to be happy for just a little bit longer. To share some moments of laughter together. 

The afternoon we came home from IVIG we were both so hopeful that it would give her some more good times. As we walked slowly across the front lawn into the house Maddy saw a butterfly hovering around in the flowers, aka weeds, that were growing in the lawn. She was so happy to see that butterfly. When she pointed it our I was sure it was a sign of good times to come. But moments later Maddy couldn’t breathe and that was the beginning of the end. I wanted that week to be so different. I wanted that butterfly to be remembered as the herald of a bounce back to good health. Even if it was for only a short time. 

I miss Maddy more and more each day. I try to walk through life remembering the good times. I try to live a life that will make Maddy proud of me. I try not to burry my grief while simultaneously not bringing down everyone in the room every time I enter. It’s hard to walk through this world full of hurt all the time and not make the people around you uncomfortable. I don’t know if its healthy or not. I don’t know if I’m doing grief “right”. All I know is that the pain never goes away. It’s just that sometimes I am on top of the ice and other times I fall through the crevasse where I am stuck in the cold darkness of my loss. 

One Month

It’s been one month. A month to me has always seemed like an abstract concept of the passage of time. Why 30 or 31 days? Why 28 in only one? I can’t tell you how many days it has been since my world shattered but I can tell you that it has been one month. Maybe thats why we use them. The 11th of every month will forever have new meaning to me. It will now be a marker of the passage of time in a way that no birthday, holiday or phony reason to buy someone a greeting card has ever been. 

As I compose this entry I am preparing to finish gathering the last remnants of Maddy and my stuff from the Wallace house. In case you don’t know I live alone now. In a one bedroom apartment close to my sister. I just couldn’t spend one single night alone in the house that Madelyne and I shared as she fought rejection to her last breath. It’s a beautiful new apartment. With a smattering of new furniture and my personality splattered about it like paint on a Jackson Pollock. But one corner of my new apartment is Maddy’s corner. For now it is a little pile of pictures and keepsakes, items that we used for her memorial service. Things I have not had the energy or will power to go through yet. Today that pile will grow as I bring Madelyne’s remaining worldly goods into my new world. Eventually there will be a little memorial to Maddy in that corner. I plan to use her vanity table to display some of the items and pictures that had special meaning to her, and me. But that is a task for another abstract passage of time. 

When I am not on the cusp, or in the wake, of performing the monumental task of putting Maddy’s affairs in order I have some pretty good days. I have been amazed at how well I am able to cope with day to day living. My bereavement counselor at Hospice seems to be very impressed with my ability to cope as well. I have never been the kind of person who can be depressed for long periods of time. It’s not like I run away from sadness or anything. I still cry every day, sometimes to the embarrassment of the people I work with who walk in on my sobbing. Sometimes to the embarrassment of myself as I walk quietly in public with tears running down my face. But after the sadness passes, and it always does, I can smile and even laugh often. Work is good for me. I believe I already mentioned the outpouring of encouragement and support from our listeners. Without that I do not believe I would be handling this so well. I’m even getting back into the gym! It’s important to me that I work out. One, because I became so involuntarily skinny from all I went through with Maddy. Two, because the endorphins I get from woking out are my drug of choice. I can’t/don’t want to medicate my feelings away. Working out gives me a boost that allows me to continue processing my feelings in a healthy way. I mean really, I’m a single guy living all alone, what else am I gonna do with my free time?!?!

I am still taking life a moment at a time. I can’t yet say that the good moments outnumber the bad moments, but I can see the tide shifting that way. I have many friends and my family still keeping me busy in much of my free time. I have actually began to decline offers in an effort to be truly alone sometimes. I think it’s important that I make time to process some of the feelings I am having by myself. Today’s journey to the Wallace house will be unaccompanied. It will be good for me to have no distractions while I pack up Maddy’s few remaining items. I know that my friends and family are only a phone call away if things get too intense. So it’s like I’m working with a safety net. 

Oh, one last thing I remembered as I was reading over this in preparation to post. Yesterday my bereavement counselor said something that made a lot of sense to me and actually gave me some comfort. I have been having a little inner struggle with how well I am managing my life post Maddy. Almost guilty about being ok. He said that sometimes when we lose someone to such a long fought battle with illness we have already done a lot of our grieving before that person ever dies. That resonated with me very much. Maddy and I fought for years to get her transplant. I was half expecting her to not make it through that back in 2011. Then the almost two year fight against the rejection. Honestly, I spent a lot of that time grieving the loss of her lungs. Although I never showed it because I wanted to be nothing but positive for her. So it makes sense that I have already been grieving, in a way, for many years. This is another one of those things that does not really make the pain any less but gives a small amount of comfort, it also eases my guilt at moving along with my life so quickly. I know, I know… It’s stilly to feel guilty about trying to have a happy productive life because Maddy wanted me to. But there is no sensible way to account for un-sensible feelings. They are just there and we have to find a way to cope with them until they are not there anymore. 

Thats it. I’m going to go move the rest of my crap out of that house now. 

The Final Chapter Continued Some More

It’s been a difficult day thinking of Maddy. Things seem to come in waves these days. There are good moments and bad moments. Today had many good moments. Email’s and messages from amazing listeners who hear me break up about Maddy every time I pray on air. It never stops amazing me that so many people reach out to me with encouraging words and tell me that my struggle encourages them. 

But there are many bad moments too. It seems as if I have gone through all the stages of grief at this point. I just keep cycling through them over and over again. Here is the wiki link in case you are unfamiliar. http://en.wikipedia.org/wiki/Kübler-Ross_model. Today was a big denial day. Sometimes I just can’t wrap my head around the fact that she is gone. It seems like she is just away at a friends house and she will call or text any minute. I find myself hoping to get a text message or see a Facebook post even though I’m sitting less than 10 feet from her ashes. At one point today I suddenly realized I will never hear her call me daddy again. In that moment my heart shattered all over again! Of course that kind of thought takes me right to the anger stage. How can this be?!? 

Another crazy thought I had today was that I didn’t do enough to help her live better and longer. I know that is not true because I did everything physically possible to give her the best life and chance at survival that I could. But in the end it was not enough so what the hell?!? Like I said, I know it’s crazy and untrue but the thought came anyway. There is no stopping the thoughts. I will not numb myself with alcohol. I will not run away from my family, life and job. I will not give up and stop living. So the thoughts continue. I think one of the only ways to get them out is to write about them here. Maybe thats why I’m at it again. Maybe after writing this, tonight I will actually sleep. 

That's another thing. I keep waking up in the middle of the night and when I do I’m suddenly transported back to Maddy’s last few minutes. It’s not a dream. It’s like I am physically there. Sometimes it’s me talking to her before she died. Sometimes it’s me whaling over my poor dear daughters lifeless body. But no matter what time I’m transported to, it is always the same crappy outcome. 

Yet with all of this going on I still see God at work in my life. I know it may sound crazy but I know he is there watching over me and carrying me through this. The afore mentioned email’s and messages are one sign. The love I am receiving from friends, family and co-workers is another. Even when I’m sitting alone in my new apartment I can feel His presence. Honestly it’s not always comforting. But it’s there and that is enough. A good friend of mine asked me a little while ago if I prayed when I get sad thinking about Maddy. My answer will be my public service announcement for this little blog entry…

Many years ago I found myself fighting with my inner dialogue. You know what I’m talking about, that little voice inside your head that sometimes tells you things like “you can do it” or “you’re not good enough” or “hey climbing the outside of that building to the third floor is a dumb idea”. Sometimes it’s good to listen to your inner dialogue. But when it starts to get self destructive and self loathing it becomes a problem. Thats the issue I was having with mine. Too many "your not good enough’s". I can't credit where the idea came from but it was suggested to me at the time that I turn that inner dialogue into prayer. Instead of telling myself things I should direct all those thoughts throughout the day to God. And I haven’t stopped yet. It’s good habit to get into and I would highly recommend it to everyone. Oh, and now that I have my personal angel in heaven dying Jesus’ hair I turn much of my inner dialogue toward Maddy. It’s weird how I began speaking to her in my head the minute she left this earth. Again it does not always give me comfort but thats ok too. 

Until next time.

The Final Chapter Continued

I wrote this on Easter Sunday. I did not proof read. Was going to hold off and post all my thoughts at one time but changed my mind...

4/5/15 Easter Sunday

I have been encouraged to begin writing the final chapter while I am still processing this monumental loss and at first I thought “thats crazy!” But as I have been thinking over things the last few days it seems to make sense for two reasons. First, these blogs have always been a form of catharsis for me. I admitted to having written a blog entry for my personal blog in the days immediately preceding Maddy’s death to one of the people who encouraged me to finish this blog. After that conversation I finally posted that entry and even though I know there is little chance anyone will find it and read it I felt an immediate release as soon as I hit the post button. AS if a weight had been lifted off my chest. Second, I am finding that some of these feelings I have experienced in the last few weeks are fading away. Which I never thought would happen. Not that I don’t still hurt. Maybe it’s a numbing PTSD kind of thing that is blocking some of the worst memories. I want to process some of them before they fade away totally. Oh, and third ( I know I only said two reasons) there may be someone out there who can benefit from the insights I have gained from this horrible experience. So I want to honor Maddy by helping others deal with their pain.

So here goes. As many of you are already familiar with my blogging style I will begin by putting your mind at ease. I will not recount Maddy’s final days here in detail. Those who are closest to me have already been told of her final days. I will say that Maddy never gave up and never stopped fighting. She was and is the strongest person I have ever had the privilege of meeting. Her strength will continue on in those she touched. Now I must go on to state the obvious. 

I have never felt such pain and despair as I did the moment my darling Madelyne died. In many ways I have attempted to prepare myself for that day, but there is never any true way of knowing the depth of the pain that comes with the loss of such a huge part of your life. I felt like the earth swallowed me whole. I could hear and see what was going on around me but it was like everything was miles away. There were a few moments of clarity because I had Ethan to attend to and care for. Also Maddy’s best friends Ariel and Taylor had come back to say goodbye while we waited for them to come get Maddy’s body. They gave me some more people to worry about and try to comfort. At one point Taylor asked me how I was comforting her when it was my daughter who had just died. I told her that as much as I missed Maddy already I knew she was no longer in pain and that being able to comfort and care for her best friends was like having a little bit of Maddy to take care of again. Those young ladies and another of Maddy’s friends, Niki, who lives in South Florida have become like daughters to me. They have been a constant source of comfort as they check up on me frequently. 

It soon dawned on me after Maddy died that I do not know who I am if I am not Maddy’s caregiver. We had such a close bond that no one else shared. There was nothing more important to my world than helping Maddy fight CF and her transplant rejection. And in the blink of an eye that purpose was ripped from my life. Who am I now? What am I supposed to do with my life? Obviously I have Ethan now but fortunately he is not in a position to need the type of care that Maddy did. Happy, healthy and productive have always been the criteria I have asked my children to live by. Ethan is doing a really good job of living out that calling. I am so proud of the man he is becoming and I am grateful that it appears he will have many healthy years ahead of him. But there is always that darkness looming, that I will have to watch him fight the same loosing battle one day. I pray that day does not come for many, many years. 

But still the question lingers. Who Am I? I began a new tattoo theme on the arm that has my sparrow with Maddy’s name on it. It is an Alice in Wonderland theme because that was a very important book for Maddy and I. I have Absolem, the caterpillar from that tale, tattooed just below Maddy’s sparrow. In the cloud of smoke coming up from the caterpillar’s pipe are the words “Who Are You?” Those are the words he asks Alice upon their first meeting. That tattoo and phrase greet me every morning in my new quest for identity. Not many people have the good fortune that I had while I cared for Maddy. Yes it was a difficult road, probably one of the more difficult roads anyone could walk with their child. But on that road I had a clear and definite purpose. Care for Maddy! Now I feel as if I am a ship out to sea with no rudder, a storm raging around me and I can’t even lower my sails. There is no clear direction…

Until a few weeks after Maddy’s death. Our radio station has two on air fund raisers each year. I didn’t know how I was going to pull it off. I could barely function. How was I going to work, on the air no less, and ask for money from our listeners? John was nice enough to make the schedule without me on it. But that meant all the people I work with, who had already been bending over backward to cover for me over the last few months of Maddy’s life would have to do that entire grueling week without my support. I couldn’t do that to them, so I offered to run the board for the drive time broadcasts and pre record the evening shift, since the evening guy was scheduled to cover my mid day fund raising shift. I wanted to be part of the team and carry as much of my weight as I could in order to thank them for supporting me so much. I’m so glad I didn’t just wallow in self pity and ask for the week off. In that week of running the board and hardly speaking live on the radio. God showed me more grace than I every thought I would see. Person after person called in and made a monetary gift to the radio station in Maddy’s honor. They shared encouraging words and reminded me that I am being prayed for by many, many people that I have and probably never will meet. Knowing that my sharing of our struggle publicly and inviting God’s people to pray for me affected lives and encouraged them to sow into our little ministry gave me a sense of purpose again. It reminded me that my children are not my only reason for being on this planet. God had blessed me with the opportunity to be part of a ministry that changes lives. I will not let that ministry down. 

Thats about all I can process for this day. More next time. 

The Final Chapter

My world is shattered. The darkness seems unending but I know there is still light. Maddy lost her battle with Cystic Fibrosis on Wednesday March 11, 2015 at 6:45PM and the world will never be the same. But I know her light shines on in those she has encountered. Thank you to everyone for your outpouring of love in this terrible time. One day I will have words to complete this blog and pen a final entry but today is not that day. Today I simply come to say thank you and give you the information to come celebrate Maddy's life with us.

Memorial Information 

Memorial Gathering

Saturday, March 21, 2015

05:00 PM - 06:00 PM

Memorial Service

Saturday, March 21, 2015

06:00 PM - 07:00 PM

Blount & Curry FH-Carrollwood

3207 W BEARSS AVE

TAMPA, FL 33618

8139682231

Post IVIG

Things have not been going well since the IVIG treatment yesterday. We got home a little after 3PM and Maddy was really tired but that's to be expected. What we didn't expect was the drastic shortness of breath Maddy began to experience yesterday. As mentioned before Maddy's lungs are failing so she has been having more difficulty with shortness of breath even while on oxygen. She started having more episodes yesterday afternoon, even when sitting and doing nothing. By yesterday evening it was really bad so we called Hospice. They sent a nurse out and broke into our emergency hospice kit to give her Morphine drops. She takes these under her tongue to help fight what they call "air hunger". It helps calm her down and also opens up her airways some. She can have the liquid Morphine every two hours to help her breathe. She and I were up most of the night last fighting this "air hunger".

It's almost 10AM and she is currently resting. I do not know if this new development is a reaction to the IVIG, one of the side effects listed for the med is shortness of breath but she has never experienced that side effect before, or if her lungs have just begun to fail to the point where this is our next forever battle. In either case I am taking the day off again to stay with her and help her through this. As always prayers are appreciated.

IVIG

 

Time for a follow up and IVIG. We thought Maddy was scheduled to see the doctor this morning followed by her next IVIG treatment. But when we got to the transplant clinic this morning at 8:00 they said she was only getting her blood work done at clinic and then her IVIG appointment was at 10:30. She has been debating wether it was going to be worth going through IVIG again at this point so we had planned on asking the doctor what good it was going to do. The main reason is because traditionally the IVIG makes Maddy sick and worn out for a few days after. Dr. Haddad was nice enough to come out and answer our questions after Maddy's blood draw. He said the IVIG could hold things off for a little while longer. And it also works as an anti-infectant so it may help her fight off new infections. That's the answer we were looking for. Maddy doesn't want to do anything that will not increase her quality of life at this point. So of the doctors believe the treatment will help give her a few more good days then we are all in.

These days Maddy isn't having much luck with any food other that Ramen noodles. So we took the opportunity to run home and have a big bowl of Ramen before coming back to the infusion clinic. It's a bit of a pain but worth it. We are glad to live close enough to TGH to be able to do that. Hopefully the IVIG treatment won't take forever but it usually does.

So far things at home are going ok. We had a few problems getting her pain managed at the beginning but that has settled in pretty good for now. So far most days have been good for Maddy. Melissa has been coming to hang out with her almost every day so that I can have a few hours to get into work. My sister and sister-in-law, as well as Ethan, have come and hung out a couple times. The whole team is working together to be sure Maddy has the best care possible!

Maddy's overall outlook on life seems pretty good. As always she is taking everything in stride. So far she has not had the energy to get out of the house but after today's excursion I think she will be more open to going places. I'm hoping we can get her out and maybe to the movies or something this weekend.

As for her symptoms, it does seem like her lungs are getting a little worse every day. But the deterioration seems pretty slow at this point. Hopefully the IVIG will bind up the antibodies and slow the damage they are doing even more. The pain in her lungs is pretty much a constant but as I mentioned before the meds are mostly managing it. Her appetite is not great but she is eating at least three times a day so she's not losing weight rapidly anymore.

That's the update. We are just going to sit here in the infusion clinic the remainder of the day and see how things look from here. Thanks for the continued prayers and good vibes.

 

Posted with Blogsy

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.

Lots of sleeping, lots of pain

It's been a long weekend in the hospital trying to manage Maddy's pain. It always seems to be hovering around an 8 or 9 anytime she is awake. As you may remember on Friday Dr. Tuch from the palliative care (PC) team upped Maddy's does and time schedule for the Norco and started her on a long acting morphine at night. She got her first morphine dose Friday night. The first full day on the new schedule (Saturday) Maddy needed Norco every 4 hours without fail. By Saturday night Dr. Tuch had seen that need and chencpged her to morphine twice a day, every 12 hours. So Sunday morning she got a daytime dose of morphine but her pain levels didn't seem to be getting any more tolerable. By mid morning she had to ask the nurse if she could get any other pain medication as well so they gave her Norco on top of the morphine. She also spent the morning and much of the mid day nauseous. Which is terrible because she not eating as it is.
By 2:00 we were able to get the pain under control and her moving enough to get a yogurt smoothie down her. Then it was right back to napping. She got up on her own around 5 and had the tech change her sheets. I was able to get her into my chair for a while during that time. (See above picture) Maddy even said she was hungry while she was sitting up! I ran to Panera to get her a bread bowl with French onion soup. She was able to eat a little more than half of it.
I keep thinking I will open this blog to post an entry and be able to write "Maddy is snapping back and feeling better" but that continues to no longer be the case. It's Monday morning and Dr. Haddad came by about 7:30. When he asked Maddy about her pain she said it was at a 4 or 5, which is good considering all she has had is he morphine last night at 9PM. He told us the goal was to transition her home sometime this week and that Dr. Tuck and the palliative care team would be handling the transition. That's all I have right now. I will wait to post this after I see Dr. Tuch. Hopefully sometime this morning...
It's almost 11 and the PC team has visited. Dr. Tuch said his team will be working with Hospice today in the hopes of getting Maddy home tomorrow. He said he can change the dosage of the long acting morphine (finally found out it's called MS cotton) to 3X a day to avoiding the pain crisis she has been using the Norco for. I told him I thought she was too sleepy all the time and maybe that would be too much. But I didn't want to step on Maddy's toes or keep her from getting the meds she needs. So I asked if he can order it for every 8 hours but if she doesn't need it that often can she just take it every 12 still. He said that sounded like a good compromise. So when it's due at 4:00 today she can decide if she needs it. There is still a concern that hospice will not cover her prograf and cellcept because they are anti-rejection meds. He asked is we had a bit of a stockpile at home and Maddy is sure she does because of all the time she has spent in the hospital lately. He said that will be our work around if hospice doesn't want to cover it.
Maddy was able to sit up and chat with everyone who came in this morning. But still has not been able to eat anything. She said she is afraid it will make her sick if she eats. She also got up and let them change her sheets again but went right back to bed after. She is napping now. I will post another update again tonight or tomorrow when we have answers about hospice and plans to go home.

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Pain Management

After talking with Dr. Tuch yesterday they got Maddy on a schedule of pain management that is getting more tolerable. Having the Norco available every 4 hours instead of 6 is helping. She still can't stay awake for more than a few hours at a time. Getting nourishment into her is also still difficult but she is trying very hard to eat every time she gets up.

Melissa came and hung out yesterday and was here when the lady from Hopsice came around. That was a relief because it was one less time I had to relay the information. The hospice manager gave us all the information and we are thinking about it over the weekend. The trickiest part about it is that they are not designed to provide life extending medications, such as Maddy's anti-rejection meds. She said everything is on a case by case basis but that eventually we would probably have to stop those if we were in the hospice program. There are a handful of other things we have to think about that I really just don't want to go into in this blog. Suffice to say we are taking the weekend to see how Maddy is and make our spdecision on which direction we go in next.

On a brighter note, Ethan and Alex paid Maddy a visit late in the afternoon and into the evening. Maddy was sleeping for much of the time they were here but she got up and chatted with then for about 2 hours before they left. She was in good spirits for much of the visit and didn't start having unbearable pain until toward the end. It was nice to see them making each other laugh for a while. Ethan and Alex promised to come back today and bring Maddy a boba tea. She is looking forward to that.

Melissa came back a little after 8 last night to spend the night so I could go home and start getting things ready for Maddy to come home. She reported that Maddy was able to get a good night sleep on the new long acting pain medication Dr. Tuch ordered. Not much luck getting her to eat but that seems par for the course these days. Melissa hung around until a little after 1:00 today so I could run to Ikea and get Maddy a bed. When we moved Maddy chose to go from a futon to a mattress and it was easy for her to just use it on the floor without a frame. If we are going to have nursing help I want her to have a bed up off the floor. So I found a cute little frame at IKEA and hopefully I will be able to get away for a bit tomorrow to put it together.

That's about it. Things are pretty slow at the moment. I'm a bit worried about Maddy not having any energy but I guess that's to be expected. I was really hoping these steroids and antibiotics whould give her a second wind so she could get back on her feet again but so far it's not looking good. Also her tremors are getting worse. I don't know if it's from the steroids or what. Usually she gets them from her anti-rejection meds (prograf to be precise) but they haven't been giving them to her because levels have been too high. I was hoping to ask the doctor about it today but Melissa said he didn't come by, unless she missed him somehow. Guess i'll try again tomorrow.

I guess that's all. As always thanks for the thoughts & prayers.

 

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Palliative Care

I will try to get as much of this right as I can. At this point maybe blogging what we are going through will help someone else who will have to go through this terrible situation in the future.

The Palliative care doctor came around a few minutes ago. He said he spoke to Dr. Haddad and the transplant doctors who said there is nothing more they can do for Maddy at this point. His name is Dr. Tuch and he said his job is to make sure Maddy's pain is managed and help coordinate her decisions from her on out. He asked her to explain about her current pain and tell him what the transplant doctors have told her about her prognosis. He also asked a lot of questions about our home situation and how she thinks she will be able to manage in the comfort of her own home. The goal is to get her out of the hospital if she would rather be at home but he said if she wants to be here thats ok too. She prefers home so the next part of the discussion was how much help she has at home. I voiced my concerns about leaving her alone while I worked if she was on high doses of pain meds. Maddy agreed that she is getting weaker and may need  little more help when I'm not around.

Most of the conversation revolved around Maddy's desire to continue fighting. She wants to continue treatment in the hopes of getting the antibodies under control and the rejection to stop. Dr. Tuch said that she can keep fighting but he wants to make sure she isn't going though a lot of unnecessary pain in the process. He also said it's probably time to consider the possibility that her condition will not improve and that we need a plan to help her be as happy as she can be for as long as she has. He specifically asked her what she wants to do with the time she has left. She said just not be in pain.

After the longest and hardest conversation in my life we cane to a few conclusions. Dr. Tuch is working with the transplant team to adjust her pain medications. He took her off the Ultram because it wasn't helping. He changed her Norco from every 6 hours to every 4 hours as needed. He will also put her on a long acting form of morphine at night so she can get through a whole night of sleep without any pain waking her up. He hopes this will allow her to manage the pain so that she can be up and somewhat active during the day and get a good night rest. He is also calling the Hospice Care team to see what can be done to get Maddy home and get her cared for while she is on these higher dose pain medications. He mentioned that Hospice doesn't usually continue any of the anti-rejection treatments that she is currently on. But he understands that it is important for her to keep fighting so he will work with them to make sure she will still get her anti-rejection meds and if the transplant docs think the Antibiotics and steroids will help then we can continue those as well. He promised to come back later this afternoon to let us know whats up with Hospice.

Maddy was up eating a yogurt smoothie for breakfast when Dr. Tuch came in and we could see that her pain was increasing as the conversation progressed. At the end of our discussion he went right to the nurse to make the medication changes and brought her in to give Maddy her Norco. Shortly after that Maddy asked me if she could put her mask back on and take a nap so she is sleeping again. While the doctor was out Maddy and I had a bit of a conversation about everything thats going on. She was upset that I was upset by all of this. I assured her that I am only upset because she is hurting and that I do not want to see her hurt. I also let her know that I did't think she was giving up and that she shouldn't worry about me. I don't want her to hold on if it means she will be miserable. Especially if none of this pain she is enduring is going to help get her better. So we are going to do our best to make sure she is pain free and can enjoy as much of the time she has left.

Very Little Movement

Things are looking pretty rotten from this chair I sit in. Yesterday Maddy just slept. She got up and ate a few times throughout the day but other than that unless they came in to give her meds or do something to her she just slept. The pain in her right lung is persistent and the only thing that helps is her pain meds every 6 hours. They are giving her steroids and antibiotics quite often at this point. But it does not look as if she is responding positively to that treatment. Last night the IV in her right arm blew while the steroid was being infused. She woke up at 1AM with her forearm swollen and in pain. The nurse took it out and called in a specialty team to place a new IV. It took two different nurses trying but they finally got it placed and the remainder of the steroid going by 3AM.

I was hoping her sleeping all day yesterday would be restive and give her the strength to get up and moving today. So far no such luck. It's hard to tell if she is just tired because she was up and down most of the night or because she is just getting too weak to go on anymore. This morning we have had a rough time getting her to sit up and take her meds. Usually even when she is tired she can sit right up and talk to someone or take her meds. Not this morning!

We are still waiting on the Palliative care team to come talk to us. I spoke to Dr. Haddad about it this morning and he said he would make sure they came by. I hope Maddy can wake up and communicate enough to make her wishes known to the team. I know what she wants to do in dire circumstances but only she can tell us if this lingering fight is too much. No major organs are failing, except her lungs, so it's just a slow process at this point. I think I've said it already but it's really hard to tell if she is just tired and will bounce back from this episode or of this is it.

I may not even post this but as I sit here in the quiet next to her bed I have to do something to get these thoughts out of my head. I know there are a lot of prayers and well wishes going on out there for us. Honestly the only thing that will help at this point is a miracle. Even if she bounces back from this episode I don't know how much longer that will give her. And if she does make it through this I don't know what kind of quality of life she will have. There is so much uncertainty at this point.

I guess I will post this and try to write again when I know more.

Another Day

Yesterday was a pretty busy day. It took quite a while to get a bed for Maddy at the hospital but that didn't stop the doctor from moving along with her treatment. They took Maddy down for a CT by noonish. I hung back in the clinic because it usually doesn't take that long, but you know what happens when I think something will go smoothly. Maddy texted me that she was still waiting almost 30 min after they took her back. Then when she finally didi get in for the scan they wanted to use contrast and her IV wasn't big enough. So they had to call vascular access to put in a bigger IV. I asked if she wanted me to come find her and she said there was no point. Melissa got to the clinic shortly before Maddy was finished at CT. I took that opportunity to go to work for a bit and then head home to pack Maddy's bag.

The doctor also went ahead and started her IV antibiotics and steroids while she was waiting in clinic for her room. The room was finally ready around 4 but no sooner did she get settled in than they pulled her out for another test. Melissa learned from my mistake and accompanied Maddy while they took her to get an ultrasound of her legs. The docs wanted to make sure she did't have any blood clots that could travel to her lungs and make things even worse. Maddy was not happy with that exam at all. Apparently they have to push really hard in a number of places and she does't like having her legs toughed in the first place. It made her very anxious.

By the time I got back to the hospital Maddy was very worn out. The new pain meds Dr. Floreth put her on keeps the pain in her right lung at bay for the most part. They have her on full telemetry which is always a pain in the butt. Millions of little stickers and wires everywhere makes it kind of hard to get comfortable. But she is making the best of it. She went to bed as early as she could last night, around 10:45 even though they come in at 11 to do her vitals one last time before bed. She was able to sleep most of the night. Her pain meds wore off around 4AM and she woke up and cried out in pain. I helped her get out of her mask and get her O2 back on so she could sit up and wait for the nurse to get her pain meds. That was of course just in time for a bunch of people to come in and start bothering her. They do vitals and a blood draw at 4AM. I think she finally got her meds and back into her mask by 4:30 to sleep again.

Dr. Haddad came in at 7AM and did't even wake her up. Just gave her a listen and said to let her sleep. I asked him how the CT looked and he said "a lot of damage and inflammation from the rejection". He never seems very hopeful anyway but this seemed even less hopeful than usual. We still haven't heard from anyone about hospice care. I don't know if they wait to send them in just before we are ready to go home or if someone will come by today to talk to us about it.

Maddy got up for a little while around 9 to do her breathing treatments. I was able to get her to drink a yogurt smoothie while she was up. The nurse also got her morning meds done and hung another IV antibiotic. It seems they are running every 6 hours on one of them and every 8 hours on the other. It's about 10 and Maddy is napping again. She didn't want to put the mask on so I told her I would watch her breathing and let her rest without it for an hour or so. As long as she doesn't sleep too long without it there is not worry about the CO2 building up too much. I'm guessing she will be asleep most of the day soI will make her put it back on again before too long.

As for her spirits, Maddy is just very tired. She is hoping this will help get her back on her feet again and give her another chance to live for a little while at least. She hasn't given up and told the doctors to bug off just yet so thats a good sign. Last night she was complaining that the creepy crawly feeling from the steroids was kicking in. She hoped the pain meds they have her on would help her get past that and be able to rest and so far that seems to be the case. There is nothing worse than the feeling steroids gives us! I have experienced it on small doses so I can't imagine what Maddy puts up with when she is on these high doses. At least this time around she is able to rest.

I think thats all for now. I'm just going to stay close and be available for what ever she needs. I'm so thankful that we live so close to the hospital now! and for all my awesome co-workers and boss who cover things for me when this craziness goes down. And of course I am very thankful for all the prayers and good vibes coming from everyone near and far. Maddy is still fighting so we all should too!

Chest pain

Shortly after I posted yesterday's update I got a text from Maddy saying he right side of her chest hurt really bad. So bad she felt she may have had part of her lung collapse. I put in a call to the doctor and rushed home. She was able to breathe but couldn't take a deep breath. She was still coughing s lit and every time she coughed she would breathe in deep and said it felt like someone was stabbing her. We checked her O2 saturation and that was at 99%. It took quite a while for the doctor to call back. He said if she is saturating ok then try taking some pain meds and come see him tomorrow morning. If the pain is too much to take then go to the ER. The doc called in a pein medication for her to CVS and she soldered through the pain for the rest of the day.

Maddy said the pain has been happening a little since she started using the machine. Usually she would wake up with a sharp pain in one side or the other but it would go away after a short while. Yesterday she got up around 10 with the pain and it just never went away. She texted me by 11:15 but it took until 1:30 to get through to the doctor then 3:00 before we actually got any pain meds into her.

Up and to the doctor this morning by 7:15. They just did a pulmonary function test, which was almost impossible for Maddy to do because she can't take a deep breath. She got an indreadable 11% of predicted! No surprise there. I'm hoping it's just that low because she can't take a really deep breath. Waiting on the doctor to come in and see her now then decide what kind of imaging to do. The nurse mentioned they may have to do a scan for blood clots. I hadn't even thought about the possibility of a pulmonary embolism.

Dr. Floreth came in and said that they were going to get a chest X-ray. He asked if the pain meds were helping and she said not really. He told us that his goal was to make sure she had the pain management that she needed. He mentioned that where her lung functions are they may have to call in Hospice to help her manage the pain and have someone to care for her at home. They gave her two Norco before sending her up for the X-ray. After eye X-ray I checked with her and she said the pain is a little better.

Doc just came in and said the X-ray was abnormal. No collapsed lung but there is a lot of information in her lower left lung. Either infection or rejection. He wants to put her in the hospital and get a CT scan to see if he can get a better look at what going on. It's too dangerous to do a bronchoscopy and take biopsies at this point so we are going to have to try and treat this from scans as best we can. He wants to start her on some steroids and antibiotics and hopefully she can cough up a good sample so they can check for infection.

He also told her that she has the right at any time now to say "I'm done with hospitals" and he will send her home with hospice. He thinks they can knock this out a bit and get he back on her feet. But he will call in hospice to come talk to us while she's in and start working on a plan in case they can't get her better.

I'll update again tonight or tomorrow after things have settled in a bit or when we know more.

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One Week Out

I'm having trouble coming up with a good title for this blog entry. I don't usually update when Maddy is not in the hospital but thought I should this time. I wouldn't say things are going exactly smoothly at home but it's still better than being in the hospital. Many people are asking me how Maddy is doing and thats a really hard question to answer. Most times I say "taking it one day at a time", but that doesn't really give anyone a picture of her health. So here is the rundown one week out.

The A-Vap machine, or what ever of the three names people call it at any give time, is working well for the most part. We had a few bobbles the first few days but have most of those kinks worked out. Maddy still panics a little every time she has to put it on. She says it makes her feel like she is suffocating, and of course that it her worst nightmare. It also ends up blowing air into her stomach throughout the night. She wakes up with a painfully bloated abdomen. Usually this would be no big deal but they made her get a procedure done shortly after her transplant to keep her from having acid reflux into her lungs. Here is the blog entry from that day.  Basically they put a zip tie around the top of her stomach to keep the acid from regurgitating into her esophagus and then down into her lungs. Problem is that zip tie keeps everything down there. Maddy physically can not burp! So each morning to get the air out of her stomach she has to make herself gag and dry heave the air out of her stomach. Sorry to be so graphic but this is how she has to live now.

Speaking of her stomach, that is the next issue she is having. Not sure if it's all the air being pumped in there each night or just that fact that she hasn't been able to eat right since mid January but she is not doing well on the nourishment front at all. One of the big things the Co2 poisoning did to her is eat away at a bunch of her muscle and what little fat stores she had remaining. She was already very underweight because of all the infections and this latest episode has done her in. We are having trouble finding food she can tolerate. Everything seems to hurt her stomach. I'm lucky to get 600 calories into her on any given day. On top of that she just has no appetite and when she does try to eat, something always seems to go wrong. Take last night as an example...

Her cough has increased quite a bit lately. Yesterday it was a dry cough, seemed like she just had a tickle in her through that would not go away. I'm not talking just a few hours either, she was coughing non stop... every waking moment... of the entire day! These dry coughing fits always make her gag as well, so all day her stomach was heaving as if she were puking but she wasn't. She was barely able to choke down a shake at lunch. By the time I severed her dinner she couldn't stop coughing long enough to get in one bite. She literally sat there with the plate on her lap for two hours trying to eat. She finally gave up and asked for something lighter and in the next 45 minutes of trying was only able to get down two bites.

I don't want to be pessimestic but it's getting harder and harder to see some kind of silver lining. But even through all of these setbacks Maddy seems willing to continue the fight for every breath. I'm sure there is much more I could write about here but I'm having trouble getting it all down at the moment. As always thanks for the prayers and please continue.

Lets go home!

 

Maddy's new ventilator came yesterday so we get to go home today! I didn't want to post anything until we talked to the doc this morning just to be safe. He just came in and gave us the all clear so now we just have to wait for paperwork. In the pic above you can see Maddy's new machine on the left compared to the hospital one on the right. Much more portable and easy to deal with. Obviously! The new mask is much better than the generic hospital one as well. It fits much better, has a smaller hose and a swivel connector so she can move easily. I'm sure she won't have any trouble tolerating this at home.

So that's the plan. Use the ventilator at night so she doesn't get Co2 build up again. IVIG every month to get those suckers down. Maybe photopheresis in the future and also maybe thymoglobulin again. Dr. Floreth said they don't like to do the thymo more than once a year and it's just now been a year since she had it. So they will watch her levels and if they are not going down start using the more hard hitting treatments.

Thanks again for all the prayers and good vibes.

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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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