A girl and her kitty!

 

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.

 

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Soldering along

 

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!

 

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Not so comfortably hanging at TGH

 

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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Sleepless night

We are still at St. Joe's. Last night was a long sleepless night for us both. Maddy was scared to sleep. Worried she would stop breathing again. And still reacting to all the meds. She said it felt like she had a sunburn, crawling itchy skin and really hot. I think she finally fell asleep around 3. Then we were up again at 5 with IV alarms going off. And there have been people in and out of the room ever since. Oh and this hospital seems to want to discourage visitors so all I have is a stupid recliner chair to try and sleep in.

So far this morning they have poked and prodded Maddy about as much as they do any time she is in the hospital. A respiratory tech came in this morning to do Maddy's "breathing treatments". When Maddy asked what treatments the tech said the ones they brought this machine in for, pointing to something behind the chair I was sitting in. At this point Maddy was still pretty groggy and was having a little trouble wrapping her head around someone failing to tell her the name of a medicine they were about to administer so I piped up. I explained that Maddy is a bilateral lung transplant patient with cystic fibrosis and when she asks what treatment she wants to know the names of the medicine. The tech said albuderol and pulmocort. I said nope! She is allergic to albuderol and it gives her heart palpitations and that she is not going to put anything in her lungs that her transplant doctors didn't order. The tech understood right away and said you got it, hope you feel better and get to your hospital very soon. I hope she didn't feel I was to hard on her but at that point I was going on maybe two hours sleep and really didn't feel like dealing with this stuff anymore.

Shortly after that they came to take Maddy down to nuclear medicine for the scan with isotopes. While she was gone I took the opportunity to get a protien shake and coffee, breakfast of champions. Maddy said the test went ok, she freaked a little when they said she had to breathe in the isotopes, just because she doesn't like those tight firing masks like on c-pap machines. But the mask wasn't bad so Maddy was alright. They did have to strap her arms to her sides for the first scan and that always makes her cloastophobic. So she was a little shaken up when she got back to the room but was overall alright.

The nurse set up her next round of IV antibiotics and brought her oral meds a short time ago. She said the results of the scan came back "inconclusive" and that she was going to have to call the doctor to see what they want to do. I asked again of Maddy's transplant doctors at TGH have been consulted. The nurse said she didn't think those doctors came to this hospital. I said yeah we know. Which is why we need to get transferred to TGH. Maddy summed it up very well in a text to Melissa a minute ago.

We are trying to get them to release me or transfer me to Tgh. We pretty much won't let them do anything but steroids and antibiotics until they call and talk to my transplant drs. Because we don't know what some of the things they want to give me will do to the chances of me being relisted. We aren't taking the chance so have pretty much refused anything until they talk to my team at Tgh.

It's about 10:30AM now and we are waiting on the doctor to get back to us with an answer to our list of demands. Lol

Maddy is still very itchy but other than that she seems ok. Her O2 sats are back up to 99 when they spot check her. I think she has decided to sleep with the O2 on at home from now on. Thanks for all the prayers and positive vibes. I'll post again as soon as we know more.

 

 

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Unexpected ambulance ride

I guess that's a dumb title for this blog post. Is there ever really an expected ambulance ride? I'm writing from St. Joseph hospital tonight. Maddy is ok now so that part is out of the way and you can relax while I give the whole story. But first, here is a pic of Maddy in the ER.

And now the rest of the story. Maddy had IVIG yesterday, which always leaves her feeling like crap after. She had a friend hang out with her while getting it done and it took forever, as usual, so she was not finished until after 9PM. She decided to just hang out at his place after with the plan of bumming around and making him take care of her the next day if she felt like crap. She had a sleepless night because of the reaction to the IVIG. And then of course her friend got called into work the next day. So I got a text from Maddy around 11AM Saturday telling me she feels like cap and she is going to call the doctor to have them call in a prescription so she can get some relief. And that she needs me to bring them to her. She also explained that she was probably going to be asleep and I should call her when I was on my way. She did get a little sleep before I got there with her meds at around 2:00. She looked tired and like she felt like crap but otherwise was fine. She expected her friend home within a few hours and was just going to nap until then.

That's when all he'll broke loose! Maddy stayed up for a while after I left and finally got to sleep about 30 or 40 minutes before he got home. By the way, this timeline has been painstakingly researched through texts and phone call history on our phones. Anyway, when he got there Maddy was asleep and unresponsive when he tried to wake her. She looked blue to him and when she remained unresponsive he called 911 and tried to revive her. He said his boyscout training kicked in, he gave her a few puffs to help her breathe and sat her up. She had a pulse so he knew he didn't need to do CPR. She was coming around by the time paramedics arrived and was immeadtly responsive and alert as soon as they hit her with O2. She was obviously confused and didn't know why she was waking up to a bunch of people around her. She told them she was a double lung transplant patient with cystic fibrosis. She told them she would go to her hospital and tried to refuse to go but the paramedics said that her O2 sats were 50 when they got there so they were not going to leave without her.

Which brings me to the next little wrench in the works. The paramedics assumed they were dealing with a drug overdose! Apparently when they got there and asked Zach what meds Maddy was on he responded that he didn't know all of them, because he knows she is on a lot but not what all of them are, they then asked about narcotics and he said he only knows that she is on Xanax. I'm guessing there was confusion on the paramedics part because Maddy does not look like a transplant patient and even when she told them they seemed not to know what to do with the information. Needless to say this made Maddy even more upset, because she is trying to get back on the transplant list and if there is an ER report saying she was brought in for a drug overdose she will never be able to get listed.

So I got a call right around 5PM from Maddy while she is riding in the ambulance. How she talked them into giving her phone to her I will never know. She let me know they were taking her to the hospital and when she said TGH the paramedics said "no we are taking you to St. Joe's"! Of course that made Maddy even more upset. By the time I got to the ER the docs were finally beginning to understand they were not dealing with an overdose. A very nice smart doctor came in and let Maddy know that he believed her and that she didn't need to worry about being labeled as an OD. He went on to say thay he wished he could get her over to her regular doctors right away but that it wouldn't do Maddy any good to put her on another ambulance before making sure she was stable and getting some idea what was going on. Maddy said she understands but wishes they had taken her where everyone knows her in the first place. Later on another nice lady doctor came in and let Maddy know that she made sure the report noted that the initial reason of over dose was wrong and that Maddy was not taking drugs. That made Maddy feel much better.

So it's about 11:30 now and Maddy is in a regular room here at St. Joe's. She was hoping to get some sleep but we all know how that goes. The first thing the doctors are worried about is a pulmonary embolism. They ordered a CT with contrast but her bold work came back with high creatin levels. Which means her kidneys are not working very well. This is a side effect of the IVIG and something we worry about while trying to get to the next transplant. Her kidneys hurting is one of the main things that makes her feel like crap after IVIG. Anyway, with her kidneys not functioning at their best they don't want to risk using contrast, which is also very hard in the kidneys. So they are going to check for blood clots in her lungs using nuclear medicin, a PET scan is my guess. The doc said it takes a day to get the isotopes made so that test won't happen until tomorrow. They just took her downstairs a minute ago for a regular ct scan so I guess they are just going to hit her with everything they can.

Speaking of hitting her with everything. We just got the news that her white blood count is up and they are worried she has an infection. So they are hitting her with a bunch of IV antibiotics tonight too. She is a little concerned but we are guessing they are going to keep her here tonight and then let her go tomorrow or transfer her to TGH once they know she is stable.

This is all just too much to handle! The poor kid has been through enough! I don't know why stuff like this keeps happening to her. Hopefully the nurse will get her hooked up aoon so she can rest. The rooms at this hospital are tiny so I'm not sure I'll stay the night. I will update again when we know more.

p.s. I didn't proof read this before posting so please forgive any mistakes.

 

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