Madelyne Winona Watts 9/14/92 - 3/11/15;
Maddy fought a long hard battle against Cystic Fibrosis. This blog followed her journey through a double lung transplant, rejection and finally death. Madelyne's legacy is being lived out by her father and brother who strive every day to live life with the same vigor and freedom that she did. We love and miss you Maddy!
Quick update because I promised. Maddy got the news fairly early from Dr Floreth that she was good to do home today. I was back to the hospital by noon and she was ready to go. The only thing in our way was that the nurse loves Maddy so much she didn't want to let her go. Lol. We have had a nice chill afternoon and evening at home. She has just a few days of the steroid left and is building up to the full dose of the headache medicine. Hopefully that will kick in soon. Her haeadaches are tolerable at the moment but still get pretty bad every now and then. The doc said she shouldn't drive for a few weeks until she is sure the confusion and short term memory problems are cleared up.
The neurologist came by earlier today with mostly good news. They are sure Maddy's issues are due to concussion and the scan was clear of any visible trauma. Basically she has a bruse on her brain but no bleeding or anything. That's the good part. The weird part is the doctor said the symptomems, dizziness, confusion, even hallucinations can possibly persist for months. I had no idea it could affect her that long. The doctor is sure it will all go away on its own as she heals. They prescribed a short corse of steroids that should help as well as a new med for her headaches. It's the kind of headache perscription that has to build up in her system before it works really good. Then she has to taper off again after a few months. When the doc talked about it I was reminded of the time she was on Gabapenten.
Overall Maddy is doing well. She was nauseous this morning but after the zofran and a good long nap she is feeling much better. She is a little extra shaky, which she does not like at all, but other than that she is feeling "ok I guess". Which is way better than when I asked her how she was feeling yesterday. Hopefully we will get out of here quickly.
It feels like we have been here a few days already! It took until 10PM or so to get to a regular room last night. And we were at the ER by noon. At around 4 they put us in a kind of limbo/purgatory place to wait for our room. It was actually a little better than the ER room we were in before. But only a little. Actually it was next door to the room they put Maddy in back on transplant day while we were prepping her for surgery and waiting for the all clear of the donor lungs. It was a little more exciting back then.
I took a moment last night to run home and grab Maddy some supply's for her stay. Hopefully I can make her comfortable and it will be a short visit. We are still waiting on the neurology consult to see what they think is really going on. Maddy was pretty clear headed yesterday and last night. She says she is a little confused about what's been going on for the last few days. She is running a slight fever and her cough is really bad so it's good we will get that taken care of while she is here. I ran into the station early this morning to get my work done so I can be here trough the day today and find out what's going on. When I got back around 10AM Maddy was nauseous and the nurse brought her some zofran. It's weird to me that all these symptomems of concussion are just now presenting themselves. I guess you never know with a head injury.
Hopefully we will have some better answers today. In the mean time here is a picture of me at work this morning... You can see exactly how happy I. Am about the situation! Lol
I will update again when we have some answers. Thanks for all the prayers and support! Especially my coworkers and boss who are away on a staff retreat day today without me. Wish I could be with you guys!
Maddy is in the ER! The story begins on Thursday evening when she got in a finder bender, I'm sure most of you saw that on Facebook. She cracked her right eye on the steering wheel. She seemed fine, other than a black eye, and wanted to go camping with her friends so she postponed getting checked out by a doctor. She was feeling fine through the weekend but yesterday started getting a little confused. I thought it was mostly from a lack of sleep, that happens sometimes from all the meds she is on. But this morning she had a bit of a traumatic episode of not knowing what day is is and thinking people were at the house who were not. She called me at work around 11 and we got her to the ER.
They did a cat scan and blood work as usual. Dr. Haddad came by soon after and said her kidney functions are out of whack and she is dehydrated. He looked at her scan and said there is nothing obviously messed up about it but reminded us he isn't a radiologist so we will wait for an official report. In the mean time Dr. Haddad is admitting her to get her rehydrated and watch her kidney functions. He's pretty sure she just has a slight concussion that will sort itself out. He said we should be out in 48 hours or so.
Maddy also has a sore throat and has been a little sniffuly for a few days so they will be sure to get that cleared up while she is here. I'll update more as we know what's happening. As of 3PM we are still waiting in the ER for a room on the regular floor.
Glad to be home! Last night was very calm for Maddy. She was able to get to sleep early and not disturbed very much in the night. I stayed at TGH with her over night and headed out to work shortly after 6AM so I could get in a half day work before she was totally up. By around 8:30 she texted me to let me know that she was getting out and that she would text me when the discharge paperwork was done. I was able to get my work done and be Bach to TGH by noon to pick her up. We were out pretty quickly after that.
My night and day on the other hand didn't go quite as painlessly. Last night as I was out picking up my clothes for the overnight and grabbing Maddy some good food to take to the hospital the battery light in my jeep came on. That usually means the alternator is going out. As if on que the whole car started running pretty badly as the computer began shutting down everything not nessessry to run the car. Fortunately I made it home and had Maddy's car as a back up. Also fortunately the alternator was located right on top of the engine so I was pretty sure I could replace it on my own. So that's what I spent my day doing after I got Maddy home.
Maddy is feeling fine. Happy to be home but still recovering from the whole ordeal. Also the after effects of the steroids will probably keep her from feeling 100% for a little while yet. The docs are working on getting these last hoops taken care of so they can get her back on the list. A few of the issues she is dealing with are insurance and getting in to be seen by her new primary care physician so the lung docs can get all the authorizations they need.
Thanks again for all the prayers. Please keep them coming for a quick and safe transplant. Also please share the Go Fund Me link so Maddy can make her goal, get her car up to 100% and make it easier to get around.
Things have finally calmed down a little. Maddy's friend, Zach, the guy who pretty much saved her, came to visit last night. Maddy sent me home to get some sleep and he stayed to keep her company through the itchy fiery skin episode. Maddy said the hydrocortisone she got around midnight finally gave her some relief and she was able to get some sleep last night. I got back this morning early so I could be sure and talk to the doctor. Dr. Rolf came by around 9 and was his usual self. He is worried about her and wants her back on the transplant list ASAP! He's a little worried about her kidneys and prograf levels. He is also worried about her not breathing, obviously, and said he wants to find out what happened. At the very least he said he's going to keep her here a few days to keep an eye on her. Hopefully while she is here they will be able to take care of a few of those hoops we have to jump through to get her on the list.
The morning was uneventful. Maddy is finally over all the itchy stuff and able to rest so I let her sleep in as long as I could. I finally started getting her up around 1PM so she could eat. Of course everything can't work in her favor, now that the skin episode is over she gets something else to deal with. She is all shaky. She said she feels like she is on one of those vibratey beds. She was only able to get down a protien shake at the moment but hopefully she will feel better ans get her apatite back soon.
Other than that I think she is just going to chill. They don't have to do any crazy tests or treatments at this point so it's best to rest while she can. I won't update much unless something interesting happens. I'll probably get back to work for at least a few hours tomorrow. Thanks for all the support!
That's Maddy in the back of an ambulance being transported to Tampa General! No, I couldn't see her either but she saw me. The ride went well and the parametric who rode with her in the back was a great guy. He was fun loving and very upbeat from the moment he walked in the room. Maddy chatted with him about the crappy experience she had with the ambulance taking her to St. Joe's and asked her if he could use her story to help train the other two paramedics who were driving the ambulance. It was their first day and he was training them. Hopefully they will learn from the story and be better able to serve their patients because of it.
Maddy is settling in well at TGH. We are always more comfortable where there are familiar faces. A few people from around the floor have already stopped by to say hi to her and wish her a speedy recovery.
So the main problem we are dealing with now is the itching and crawling skin syndrome Maddy is going through. It started Friday with the IVIG, as mentioned she always has a reaction to it. Then because of the pain on her kidneys, again from the IVIG, they put her on steroids which causes her skin to crawl. Add to that a few large doses of steroids they gave her at St. Joe's to make sure she was stable and now she is in her own little hell! I had a really bad sunburn one time that itched and burned for about 12 hours straight with no relief and I thought I was going to die. Maddy has been going through what she described to me as the very same feeling, plus the irritability of the steroids, for over 48 hours now with very little relief. To say she is miserable would be an understatement of the highest degree.
They have given her as much Benadryl as they can safely give her in this amount of time so they switched to IV hydrocortisone. It does not seem to be helping at all. The doctor and pharmesist said with the hydrocortisone you have to take multiple doses and allow it to build up in your system sometimes before getting any measurable relief. They only give it every 8 hours. Hopefully by the next dose she will start to get some relief so she can rest. At this point I don't think she has slept for more than two hours at a time for a total of four or five hours tops. Poor kid!
Speaking of sleep, they put her in a room with a camera in it so they can monitor her while she sleeps. They will also hook her up to an O2 saturation monitor to make sure she does not go into hypoxia again. Not sure what the game plan is at this point. I think they just want to monitor her and check over all the tests that were done at St. Joe's. I'm doctor Haddad or Rolf will let us know tomorrow what the plan is.
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