Sunday, December 28, 2014

Post Christmas fever

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

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

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

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

Saturday, December 20, 2014

Going home

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

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

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

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

Wednesday, December 17, 2014

Pneumonia and high blood sugar

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

Here is what Maddy had to say yesterday...


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

Here is what was up today...

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

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

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

Tuesday, December 16, 2014

The plan so far...

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

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

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

Welcome back to TGH!

It's barely been a month since Maddy got out of the hospital and we are back again! She really hasn't felt very well since getting out but that is pretty much her life now so she has been making due. Friday she was very tired and slept all day. I made her get up and eat when I got home from work she told me she was just really tired and wanted to sleep she had a bowl of soup and went back to bed. Saturday was much the same. It seemed to me that her cough got a little worse. We monitored her condition and sumptomes and there was nothing really pointing to her actually being "sick" again. She did have a low grade temp, never over 100, so we called the doctors in the afternoon just to do our due diligence. They said the virus she had last month can really beat her up for a few months and to keep an eye on her. If she got worse or her fever spiked over 100 to give them a call. By Sunday afternoon she seemed on the upswing. The transplant coordinator called around 3 to check up on her and she was doing fine. Today she rested much of the day but started wheezing in the afternoon. Then she took a turn for the worse around 9. The wheezing got worse and she started having coughing fits that were hard to recover from. By the time she was ready for bed at 10 she started shivering so she checked her temp and it was at 101.5. We called the doc and they decided to admit her directly into the hospital. We were expecting a long wait in the ER but they had a room available so that was a good bit of news.

So here we are. They got a chest X-ray right away and have ordered IV fluids and antibiotics for right now. It's about 12:30 and we are still getting settled into the room. They should have the IV in her soon and get those fluids and antibiotics flowing. I'm hoping that helps pretty quick. As we were waiting for the nurse to come in a respiratory tech rolled one of those hepa filters they use when she gets ribavirin. Maddy said "if they try to bring that thing in here I'm going to make a gun out of something in his room and shoot someone!" Ha ha! They haven't even tested her for RSV yet so I'm pretty sure aren't going to just start giving her that crap for no reason. The nurse said no, it's for another patient. I'll update sometime tomorrow when we know more.

Monday, November 17, 2014

Getting Sprung!

This is how I look during Maddy's ribavirin treatment. At least I'm not in the tent!


This is the last treatment she has to do then we get to go home. As usual Maddy didn't get to sleep last night so she has been sleeping most of the day. By most of the day I'm mean she started to take a nap around 10AM and has been getting some shuteye between people coming in to bug her for the last 4 hours. This morning when the doctor came in he said she looked like she was feeling better. She even got her voice back so he was happy with that. She has been coughing up that slime from her lungs really hard for about the last 20 hours or so. Dr. Haddad said her lungs are sounding much more clear already. Like I mentioned before the virus killed off the lining of her lungs and she will be coughing that up for the next few days. Then her lungs will grow a new lining. Maddy said it feels like she has CF lungs again. Not a fun experience. But it will pass. So far we don't think there has been any new perminant damage to her lungs. Her PFT numbers on her little mobile maching are about the same as they have been at home so that's good news. At 30% lung function she does not have a percentage point to spare!

So this last treatment should be over by 4ish. Then discharge paperwork and we head home. I don't want to count any chickens too soon but I'm pretty sure we will be home tonight. Maddy should be feeling much better in the next few days if things progress the same way they did last time she went through this kind of treatment. Thanks again for all the prayers. I will only update again if something changes.

Sunday, November 16, 2014

In defense of Health Care Professionals

This is a supplemental blog to respond to what's been happening with Maddy's care over the last few days. Let me start by saying I did not intend to say that Maddy has been getting poor treatment this visit. It's just that not everyone seems on their "A" game this time around. Including me! I don't know if it's because they are understaffed, overworked, or just extra busy because it's flu season. I must also say that I am very grateful to all those who choose to care for others as health care professionals at every level from trained technicians to doctors. I have to live with and help a chronically ill person but they choose to help chronically ill people every day. I also want to say that Tampa General Hospital overall does a great job treating Maddy every time she is here.

That being said I must also make a case for the family of a person who is sick. Whether it be a chronic illness, like my children have, or a sudden sickness that must be treated in a professional setting. You are the only advocate that person has when they are not at their best and need someone to watch over them. In our case, most of the time, both Madelyne and Ethan know exactlly what to watch out for and how to advocate for themselves. However when a person is sick they need someone there to advocate for them.

I don't know what it is about this visit but it seems everything that can go wrong with Maddy's treatment has gone wrong. Some things I have been able to catch before they got weird and some things I have not. Some confrontations with staff over these incidents have been very easy and others have been very trying. Some things are controllable and some things are out of our control. The important thing to remember is that we must all be on the same team. I have to gently remind myself that often, and remember it when approaching hospital staff about issues. No ones perfect, least of all me, so we must take a deep breath and work through it all.

One of my frustrations, that is beyond my control, is the treatment schedule they have Maddy on this time around. How can someone expect to get better while fighting a virus if they are kept awake with treatments all night long? This time around the treatment schedule is beyond our control due to the overcrowding of the hospital when Maddy was admitted. It's no ones fault, but sometimes we feel like the system treats people like machines they can just plug things into when ever it's convienient. I have spent enough time in hospitals to tell you that it's easy to see the paitent as an object instead of as a person with needs. It's the advocates job to point these issues out to staff so that our loved ones are treated like human beings and not objects. In past experiences with bad treatment schedules we have been able to work with the doctors and staff to adjust the clock and make things work more smoothly to allow for proper rest at night. This visit has not been one of those. Again it's no ones fault. Yet it is still frustrating, especially for Maddy.

Much of this blog entry turned out to be a venting session. But I hope everyone can see that I have nothing but respect and admiration for the hospital staff. Yes, this has been a frustrating visit. But I am confident that everyone is trying their best to make sure Maddy gets the best treatment possible. We have just not been on our "A Game".

Just plodding through

Not much progress has been made in the last day but here is whats been going on. I just spoke to Dr. Haddad and he said the virus she got will act like RSV, in that the lining of her lungs will be sloughed off and she will have to cough all that crap up before she feels better. Not sure how much of that I explained back in January 2013 when she got RSV but I remember it was a long recovery even after she got out of the hospital. The doc said 9 doses of Ribavirin then we will see how she is feeling and go from there. That puts the last dose around 2PM tomorrow so I'm hopeful for an exit strategy by Tuesday.

On to how Maddy is feeling and how the stay is going so far. Only two words to describe it "Not Good". She has gone through three IV's so far and the fourth one is already about to blow. She needs to get one of those deep vein IV's that only the vascular access team can put in but they have been too busy to get to her. The nurse put in an order yesterday afternoon to have them access her and as of 11AM today still no team. I spoke to her nurse today about it and she said the team is usually swamped and understaffed so there is no telling when they will be able to access her. This whole situation made a bad treatment schedule even worse.

Here is how last night looked.

7PM - finally gets to eat dinner after it gets reheated
8PM - Respiratory treatments begin. 15 min bronchodilator, 30 minute inhaled antibiotic
10PM - Ribavirin treatment begins. 20  minute or more to set up treatment then 2 hours in a tent while treatment is administered. No one can be in room unless they wear a duck mask and stay 5 feet away.
1AM - IV antibiotic. This was delayed because they had to put in a new IV because vascular access never came the night before. This takes anywhere from 45 min to an hour to infuse. Then a loud alarm goes off to let you know it's finished at which time you page the nurse and hope she comes in to turn it off quickly because the alarm goes off until she does.
4AM - Lab team comes in to take her blood. No you can't get the blood from the IV site you have to get stuck every morning!
6AM - Ribavitin treatment begins. Same procedure as above.
8AM - IV Antibiotics again
8AM - Respiratory treatments, same as 8PM.

And then the doctor wonders why Maddy is so tired and trying to sleep when he comes in between 9 and 10 AM. Maddy of course rarely stands up for herself. This morning I was around to tell Dr. Haddad what went on all night last night so he didn't give her any flack for sleeping today.

Hey, it's 11:20 and vascular access has arrived! Hopefully he will be able to get a good deep vein that won't give her any more problems.

One more thing, the poor kid is still experiencing flu like symptoms, chills, body aches and now this terrible cough from the lining of her lungs dying off. So it's no wonder she just wants to sleep and be left alone.

So thats the update. Hopefully she will start to feel a little better by later today or tomorrow. I have been going home at the 10PM ribavirin treatment and coming back in the morning after the 6AM treatment is finished. I will have to go to work tomorrow morning so I won't be able to get here until afternoon sometime. But I try to e around to get her better food as often as possible. She did have Jayson hang out with her for most of yesterday so that was a good thing. Guess I will update again when we know the exit strategy.

Friday, November 14, 2014

Que the crappy stay music!

So here is the rundown so far. Maddy has pneumonia and tested positive for flu. That means the flu triggered the pneumonia. Because it's a viral infection antibiotics are not much use. So no IV antibiotics at this point. They are treating her with tamiflu and will also start ribavirin as well. In case you don't remember what that is its basically an inhaled antiviral treatment that melts your contacts to your eyeballs if you have them. Here is the blog from last time she was on it.

Today has been pretty stupid. We were still stuck in limbo until about 6PM. After finally getting into a real room they realized Maddy was late getting her prograf. Now this is a big problem because of the diatary restrictions they have on this medication. You can't eat anything for one hour before taking the pills and can't eat again until two hours after taking them. That's a three hour window twice a day where Maddy can not eat. Normally in the hospital they give it to her at 5AM and 5PM. Which is a pain because that means she can't eat until 7. And the food usually comes around 5:30 or six. So tonight they are an hour late which means Maddy can't have dinner until 8PM. Top that off with a stupid nurse who can't understand what's going on and so telling people Maddy doesn't want to eat! Wtf?!?! Of course she wants to eat! She just isn't allowed to unless she doesn't want her anti rejection medication to not work! So now the respiratory people are trying to start the ribavirin, which takes two hours and no one can be near her while that's going, and she has to sit in a little 2X2 tent with a big ventilator blowing on her the whole time. And the resp tech is asking Maddy why she doesn't want to eat? All this is of course going down the minute I step downstairs to get my stuff out of the car and Maddy has no voice from her throat being so messed up from the flu so she's having trouble getting the message to the tech that she indeed does want to eat. And sleep sometime tonight for that matter so they better get this scheduling shit figured out or somebody is going to have a cow! That somebody is both Maddy and I.

Ok, rant over. I will stop writing in run on sentences now. Anyway, I am currently waiting for the respiratory people to come back so I can tell them to bug off until after Maddy eats her dinner. Hopefully they got the clue and won't be back until later. But not too much later or Maddy won't get any sleep tonight. I think it will make the most sense for me to go home tonight when they start the ribavirin and just come back in the morning since they are going to kick me out anyway. Hopefully Maddy will be ok. Guess I'll update again tomorrow.

Slammed in the Hospital again

I am composing this entry from my desk at work, still in the clothes I wore to work yesterday. Gross I know! Maddy got a bit of a sore throat on Wednesday and was running a very low grade fever so she "kept an eye on things" through Thursday. Then around 5:30 on Thursday she spiked a fever of 101 so she called the doctor. Of course they said to go to the ER so off we went. At least this time she wasn't hallucinating! After many pokes and rays later they said she is sick and will be admitted to the hospital. Duh! Of course there were no beds available on the main floor so we were moved to a holding area of sorts around midnight. The rooms are about the same size as a ER room but with a regular hospital bed instead of a gurney. I of course sat up in a chair all night. Dr. Rolf came in this morning and said she has pneumonia. They are going to start her on some antibiotics and keep her until they get her lungs clear.

It's amazing to me how quickly the poor little thing can go from totally fine to being on her death bed. I guess even with all the crap she goes through we forget how fragile her system is. Her cough Wednesday night was a little elevated but nothing scary or excessive. By this morning she sounded like she did just before her transplant again. Scary!

The other scary thing is the antibiotics they need to use to treat her pneumonia are the kind she is allergic to. So they will be doing the whole desensitization thing again. That always scares me.

Anyway I'm going to knock out my Friday work and get back to the hospital to hang with her for the weekend, maybe longer. Please start praying if you haven't already.

Thursday, October 9, 2014

All clear

We should be going home today. Dr. Floreth came in and said the MRI looks good. No sign of brain injury. The spinal tap came back clear of infection too. Can't remember if I posted that yesterday. So the consensus is the problem was from the Amitriptyline. All the other docs agree that the other medications she was on are fine and the dosages are good. They will start her back on those and send her home. I'm wondering what she is going to do about these headaches that have been persisting since the accident. The Amitriptyline was supposed to be for them, but we can't put her on something that makes he lose her mind. This is frustrating!

Maddy is still very tired but she got better sleep last night. No one bothered us from 1pm to 4am. Hopefully she will be able to sleep at home now that she is stopping the Amitriptyline. Now we just wait for the paperwork and all the consulting doctors to sign off on her discharge. They are trickling in a little at a time. Hopefully we will get out of here soon. Not that it really matters to Maddy right now, she's still sleeping. Guess she is catching up from that week of insomnia. Thanks again for all the prayers.


Wednesday, October 8, 2014

Some sorta answers.

It's been a long night! But Maddy has getting back to her normal self. I think when I left off in the last post Maddy was finally sleeping after being given a dose of Haldol. We got up to the room around 10:30 and when the nurse didi her assessment Maddy knew where she was and why she was here. I almost fainted from relief but didn't want to count my chickens too soon. We got Maddy settled in and back to sleep by 11. Then the parade of wake up events began! It went like this...

  • Midnight - wake up and take oral medication she missed due to being in ER.
  • 1AM - wake up when nurse comes in to hang another IV antibiotic.
  • 1:50 - wake up when IV pump alarm goes off because Maddy bent her arm!
  • 2:00 - wake up when nurse comes in to switch antibiotic.
  • 3:00 - wake up when alarm goes off to alert the nurse the infusion is complete. Page nurse. Just as we drift into sleep nurse comes in to disconnect antibiotic.
  • 4:00 - wake up to take Maddy's vitals.
  • 4:15 - wake up to take Maddy's blood.
  • 5:00 - wake up to give Maddy her prograf and hang another IV antibiotic.
  • 5:50 - alarm goes off, antibiotic is finished. Sike! Still anothe 50ml to pump in, reset infusion.
  • 6:00 - oh wait, now they give Maddy her prograf. And take down the IV.
  • 7:00 - shift change, "hello I'll be your nurse today. I will be right back with your meds and to assess you".
  • 8:00 - nurse brings Maddy's morning oral meds and does assessment. Doctor comes in as this is being done. By 9 they are all finished.

Needless to say we didn't get much rest. I talked the nurse into giving her three hours of uninterrupted sleep. We put a do not disturb sign on the door and her nurse, Elisha, said she would push back any medications until then so Maddy can rest. Now on to the "sorta answers".

Dr. Floreth is the doc on this morning, which is great because he is the nicest and that's when Maddy needs right now. He said we are still looking into meningitis but those cultures can take quite a while to come back. He is also considering the side effects of the drugs she is on. Many of which can be dementia and confusion to say the least. He's particularly concerned about the meds they put her on for the concussion reacting with the anti anxiety and antidepressant meds she is on. He said the high dose of steroids she needed after the concussion can trigger adverse effects from those psychotropic drugs. So he is going to wipe her clean and call in the psychologist and the neurologists to reassess her medications and dosages so we can try to get the balance right again. He said he has seen this type of reaction before when someone has been on their normal drug regiment and something new happens, the new drugs put everything else out of whack. Also now that Maddy is more herself again she was able to tell us she has only been getting about 3 hours of sleep a night. Which is not good for anyone much less someone on such a precariously balanced regiment of anti rejection and other drugs.

So as I am won't to do, I just used 600 words to say what I could have said in one sentence. Maddy is feeling more like herself and they are resetting her medications in the hopes of getting everything back in balance. Oh yeah, two sentences. They are still looking into the possibility it's meningitis.

That's all for now.

Tuesday, October 7, 2014

Confusion is back! Very bad 24 hours so far.

I don't have any solid answers but I will post this update anyway. Maddy started getting confused and sending weird garbled texts again yesterday. I was working and had a dentist appointment so was out of the house until after five. I spoke to her on the phone and she sounded mostly normal but I could tell something was up again. By the time I got home she was acting very weird and mixing up her phrases. I called the doctor, much to her distaste because she didn't think anything was wrong. Boy was she mad! They said to watch her for 24 hours and call in the morning with an update. Here is where things started to get hard. I was scheduled to run the sound board for the morning show while they did a live remote broadcast. That meant I had to be at the station by 5:30am. I tried to get Melissa to come hang out with Maddy but she was sick and had just gotten put on antibiotics that day. Then I called Ethan and invited him and his gf to stay the night so they could be ther for Maddy in the morning while I worked. That was cool with them but Ethan already had plans for the night so he asked if he could come over later. No problem! An hour later, problem. I got a call from Ethan screaming in pain, he has taken a spill off his skateboard and broken his arm. He was on his way to the ER in Northdale. I couldn't believe it. His update by the way is left arm broken near the wrist, both bones, and possible broken thumb. He's to see an orthopedist to get a cast in three days.

So with Ethan out I reached out to my sister, the sibling who lives and works closest to me. She agreed to drop everything and some over at 5am to sit with Maddy. Her work is flexible enough for her to work from her laptop sometimes. Fortunately today was one of those times. Elizabeth hung out and reported to me while I worked and then I got home as soon as I could. Oh, Brian of course heard through the grape vine (wonder who that could have been?) and he happened to be off so he came over later in the morning and kept Eliz company. I have great siblings!

Anyway, Maddy was still confused this morning when she woke up and even started hallucinating by the time I got there. She was very agitated and still very confused a lot of the time. I called the doctors while I was driving home so by the time I got there they were updated and on the job. They told us to come to the ER so we were out the door and heading here before noon. Last night I was hoping she was just having some residual effects from the concussion but by this afternoon I was not convinced it would be that simple.

The ER is crazy busy and it took a while to get her back. That didn't help matters because she couldn't remember why I made her come. Actually I don't think she was convinced I knew what I was doing. She thought she was fine. This is very unlike last time when someone pointed out she was talking to people who weren't there she accepted that her mind was not thinking right. This time there was no such acceptance.

All day long they have been doing different tests. Enyone who spoke to Maddy for more than 30 seconds could tell something was very wrong. They got an X-ray right away, then a CT scan of her head, then they did a lumbar puncture (spinal tap). Through all this Maddy just keep getting worse. She was having conversations with people who were not there. Every time someone tried to talk to her she slipped into aphasia and mixed up words, even whole sentences. They tried Adavant twice to help calm her down and give her brain some rest, to no avail. By the time they did the lumbar puncture, which she did really well for thankfully, she had deteriorated pretty bad. She was twitching, always rolling her eyes and scanning the room as if something was always just outside her preferial vision and couldn't sit still for ebp en a minute. I was worried she would freak out the minute I left the room for her perocedure. But she didn't, not until I got back!

The lumbar puncture was at around 5PM. She had spent an entire day, and probably a sleepless night last night, compleatly out of her head. She was so angry and agitated after the puncture I asked if ther was anything at all they could give her so she could get some relief from these maddening symptomems. They got her some halodrol, not sure I spelled that right. That ended up sets ding her completely off the rails. She went from laughing along with friends who were not in the room to kicking and screaming because she just "couldn't take it any more". I almost died during that hour. She finally fell into a twitchy running sleep. Like when a dog dreams and runs in its sleep. What ever is supposed to turn off your body when you sleep didn't turn off for her. That lasted another 30 or 40 minutes and just as she see,Ed to start to get some real rest they needed to take her vitals and start running some IV antibiotics. Fortunately that only set her off for 20 minutes. I think that puts her to sleep around 7:20 and she has been sleeping pretty well since then. (It's 9PM as I write this)

That's my nightmare, sorry I shared so much. I just have to get this stuff out. Some is cathartic and some is so I will remember exactly what went down for her medical history. So far we have no solid answers. Her CT scan looks normal. The X-ray was of course normal. They have not shared any of the blood test results. Oh yeah they took lots of blood! And we have not heard anything about the lumbar puncture. The only thing that seems to fit to me , and I'm no doctor, is that this is some sort of meningitis. You can go back in the blog to see what happened last time she got viral meningitis. I swear she looked like she was going to have a seizure any minute today. I'm kind of surprised they haven't done an MRI. I think that would give us a better idea if here were swelling in her brain. But I guess the CT looked normal enough to not call for an MRI. If I remember correctly it took a week or more to find out what caused the seizure back then, turned out to be the chicken pox virus crossing over into her spinal fluid and causing the meningitis. So I guess it takes a while to get results from that puncture.

In the meantime we sit in the ER... Oops, the nurse just came in and told us they are moving her upstairs. So i'll post another blog when I get some real answers.

Thursday, September 25, 2014

Home again

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.

Thanks again for all the prayers and good vibes.

Wednesday, September 24, 2014

Update to the update


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.

That's all for now.


Another day in paradise!


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!


Tuesday, September 23, 2014

Not how we wanted to spend our Tuesday

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.


Tuesday, July 22, 2014

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.


Monday, July 21, 2014

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!


Sunday, July 20, 2014

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.


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.



Saturday, July 19, 2014

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.


Monday, June 23, 2014

Home again

Maddy got out of the hospital today. It seemed almost too easy to be true. Doc came pretty late in the morning, but said he was gonna send her home. She was all packed up and out by a little after 1:00. The is still coughing pretty bad but is very happy to be home. Hopefully getting real food and being comply at home will help her heal quickly.

Thanks again for all the prayers. Please keep them up as she continues to recover and gets ready for her final round if IVIG in early July.

Sunday, June 22, 2014

Slow weekend

Maddy has had a pretty chill weekend. The ribavirin treatments were finished Friday night. Saturday they took Maddy off the IV antibiotics and switched her to oral. Today they said they want to run a few more cultures and they will send her home on Monday. So hopefully she will be home tomorrow. But we know better than to get our hopes too high.

She still feels pretty bad. I think she feels a little better because as Patrick put it, "when you ask her how she feels today she says ok. Yesterday all she would say is, I feel like death" Ha Ha, this boy is gonna fit right in!

Melissa visited yesterday afternoon for a good long while. I came by last night and took Maddy for a walk along the water. It was cool because they were doing fireworks off Harbor Island just as we got outside. I tried to snap a pic but failed. I did get a good pano shot that you see at the top of the blog.

That's about all. Hopefully she will get out tomorrow. I have to work but Patrick is here with Maddy's car so he will be able to get her home when she gets out. It's so nice that she has a good boyfriend to lend a hand.


Friday, June 20, 2014

Still fighting!


Maddy found out today that she has a bacterial infection as well. That means IV antibiotics to knock it out. So they will keep her in hospital for the weekend and into next week. Hopefully she will be able to do home IV's and not be stuck here the whole time.

She has not had a very good stay do far. These infections are kicking her butt pretty good. She is coughing lots, like pre-transplant amounts of coughing! Her O2 sats are down even when she is just sitting around. So she is on oxygen all the time now. All the coughing has given her a permanent headache, not to mention how much her body hurts from it all. She asked the doc if he would up her pain meds and he said no. In his defense I'm sure he doesn't want the meds to effect her breathing. She is having a tough enough time as it is.

The other bad thing is, as always, the food situation. Not only is the food crappy, they have not been very consistent getting her meals to her. When the ribavirin is going they put a big "NO ENTRY" sign on her door. Nobody has been following up to make sure she got her food after the treatment was done. And because of all the pain and lack of sleep she has been pretty out of it and didn't bug them about it either. By the time I got here today she didn't even really know what day it is. Poor kid.

She has perked up a little since I've been here. I talked to her nurse about the stuff and we should be back on track. She got a shower a few minutes ago and I think that made her feel a little more human. The last dose of ribavirin is tonight at 8PM, so that's a bonus! Patrick has been great and only left her side long enough to go pick up his paycheck today and bring her some dinner from Panera. He's a good egg! I'm glad Maddy is happy with him.

I don't have any pressing work over the weekend so I should be able to hang out here more and make sure everything goes smoothly. At the very least I'll be able to get her some good food more often. Thanks again for the prayers.

Wednesday, June 18, 2014

Fighting the virus day two

I stole the picture above from Maddy's Facebook. They stick her in a tent with a big blower/filter unit while she breathes the ribavirin. Have I mentioned yet the medicine they are making her breathe for two hours at a time every 8 hours is so toxic that if you have contacts in while it's being used the droplets of this stuff in the air will fuse the contacts to your eyeball?!?! Yeah, there is that!

Anyway, Maddy is handling it like a pro as usual. She is super tired because they wanted to start her in this med as quickly as possible so her first dose was at 2AM. So her schedule is 2AM, 10AM, 6PM. And it starts all over again. Each treatment takes 2 hours, plus 15 min or so of set up and year down of the tent, so that's about 7 hours of that treatment each day. Then she has to deal with all the in and out traffic of nurses and doctors. I think she got a two hour nap or so this afternoon. It's a little after 9pm now, hopefully she will be able to get a little sleep between now and the next ribavirin at 2.

I came out a little after 6 when they kicked Patrick out for her ribavirin and took him out to Pannera for dinner. Then we did a little grocery shopping for Maddy. We are lucky because her room already had a fridge when we got here. So she is stocked up a little bit with juice and snacks now. The doc said the only plan right now is to do the ribavirin and go home. Hopefully that means she will be out Saturday or so. She is going to chat with him tomorrow about getting that IVIG treatment she couldn't get at the beginning of the month because her insurance was being weird. It will be good if they can get that out of the way while she is stuck here anyway.

Thanks for all the prayers. I will probably not update again for a while unless something weird happens so don't worry if you don't see anything.


Tuesday, June 17, 2014

Viral Infection

Maddy started feeling pretty bad yesterday and running a very low grade fever. She kept an eye on it and when she didn't show any improvement in 24 hours she called the doctor. They had her go in and do a switch test which came back this evening as a viral infection they want to treat in the hospital. So we checked in through the ER around 8:30. Now we are waiting for the orders to get in the computer so we know what the plan is. As soon as I know that i'll update more...

It's 10:30 and we still don't know what the heck the doctor wants to do. The nurse is still getting all Maddy's info into the computer. We are also waiting on the IV access team to come put Maddy's line in. So far there has not been any talk about needing a large access point in her neck this time around.

11:00 and Maddy is getting her oral night meds. Still waiting on the IV team to come access her. Doctors orders so far is just for ribavirin every 8 hours for 9 doses. Starting at 2AM! Hopefully that will be all she needs to get rid of this virus!

So that's 72 hours. Hopefully that means she will be out in three days. If you are wondering what ribavirin is check out the blog from last time she had it.

Ago that's what's going on. It's 11:30 so I'm going home now. Ill post again tomorrow after work.

Tuesday, May 6, 2014

Rejection, Oxygen & Re-transplant looming

They have been battening this rejection since June of 2013. Last hospital stay was January 2014. Since then they have been monitoring her antibodie levels and trying to get them to zero in the hopes her lung functions would come back up to normal levels. That included doctor visits and IVIG every month. Last month the docs said if her antibodies get down to zero there is a chance she would regain some ling function. Today she came in for a check up and IVIG and they said her antibodies are zero but her lung functions were down again, from about 35% last month to 25% today. Doc said that means she will need to be re-transplanted.

The plan right now is to get her back on oxygen, so she can be a little more mobile. She took the walk test and definitely needed O2! Then had to wait and do the test again to see how much she needed to bring her sats to normal levels so they could write the script. That all done we are off to get her IVIG treatment today.

They said there was no reason to entertain the idea of getting another transplant until they got her antibodies to zero because you can't get on the list of you have active antibodies. She has two more IVIG treatments before this course is finished. Then they will work on getting her on the list. So the process begins again! She is going to start getting all the preliminary appointments with all the other doctors out of the way, i.e. dentist, vision, gyno and the such. So at least we can get that out of the way early!

So my guess at the moment, and it's just a guess, is they should get her back on the list by July or August. Hopefully the process will be a little less crazy and faster this time around. Last time it took more than a year! This time around she is not having bunches of bad coughing fits so she should be able to drive and do more stuff while we wait. The last few months have been pretty hard because she can't breathe, now that she is back on O2 she should feel a little better on a daily basis. Hopefully with the antibodies gone her lung functions well stop going down and level off.

That's all I have right now. We will be at IVIG all day because it took so long to get her over here from the clinic. The home health company should be coming by the infusion clinic to get her first O2 tank to her. She has a hospital tank right now. Then we will set up a delivery schedule to the house. I will update again when we know more but don't expect much until next month or later.


Thursday, January 9, 2014

Recovering at home

A rainy day seems appropriate for how Maddy feels these days.

Well, we made it home on Tuesday night. As anticipated we did not get out of the hospital until 6:30 or so. I must say Maddy's nurse on Tuesday was great! She got everything moving and stayed on top of it all day long to make sure Maddy got out of there as quickly and efficiently as possible. Thats the good news.

The bad news is that this trip to the hospital really beat Maddy down. It really sucks that the stuff they have to do to make her better has to make her so much worse first. So I wanted to write another post so everyone knows that even though she is at home and no longer getting poked and stuck in the hospital she is not really any better. Her entire body hurts all the time. She is still not breathing very well, and she feels sick every time she eats. I'm hoping she will start feeling better very soon. There is not anything I can do to make her feel better and that is a very helpless feeling.

I had to take her with me to work this morning so she could get blood work done. Usually she should just hang out at my office after while I worked but she feels so rotten I took the rest of the day off and brought her home after. Just got a call from the doctor adjusting her prograf levels again, which means blood work next week too. Then a clinic visit the week after that and the monthly IVIG after that. Looks like she is back to weekly doctor visits again for a while. What a pain!

That is all.

Tuesday, January 7, 2014

Hopefully the final update of this visit

I started to update last night but then Maddy started having a reaction to the needs so I stopped. The next two paragraphs are what I got done last night then I will post the current update

Right so, remember how I said they were going to skip the Thymo on Sunday because her numbers were not right for it? Well they changed their mind. The doc really wanted her to get the most bang for her buck while here so he ordered another round of bloodworm in the afternoon. The numbers came back good enough for them to run the Thymo. Just a reminder the Thymo is a SIX hour infusion. They didn't get started until 6PM!! That meant Maddy was going to be up all night. I had already adjusted my work schedule so I had told my boss I would be there on Monday. No big deal I'm use to long nights and early mornings. I ran out to grab Maddy some dinner and a couple movies from Redbox around 7:30 so she could eat. When I got back she asked me if I would be offended if she asked me to go home. I said of course not. I will be here or not depending on what she wants. Basically she didn't want to worry about keeping me up all night when I had to work the next day. She was also tired of people in general and just wanted some alone time. No sweat off my back. I headed out to a warm bed. 

Just as I was going Maddy's two best friends showed up unannounced. She seemed happy to see them and they were all very excited. They brought gifts and balloons, it really cheered up the place. I'm told they hung out for an hour or so. I got a text from Maddy around 9:30 telling me she was having an allergic reaction to the Thymo. Lots of itching, hives and her throat felt really itchy. The reaction had started a little when I left at 8 but apparently got worse as the night progressed. They tried lots of different antihistamines to help fight the itching but could never get ahead of it. Needless to say Maddy had a horrible night. 
Which brings me back to Monday night. They got Maddy's thyme treatment going a little earlier on Monday but before that could happen Maddy had it out with the doctor a little about getting her properly premeditated before the Thymo this time around. She did not want to have that bad a reaction with no relief again. Unfortunately there was some miscommunication and the doctor stuck with the oral Benadryl, with a follow up dose of two other antihistamines in reserve if she started to react. Have I mentioned they are giving her LARGE doses of steroids before every round of Thymo? Yeah, it kind of slipped our mind too. We were so focused on the new medication we forgot that the large doses of Solu-Medrol wreak havoc on poor little Maddy. So if the stress of going through rejection, anxiety over having to deal with strangers all day, itchiness from an allergic reaction to the Thymo and overall loathing of being in the hospital didn't knock Maddy down the Solu-Medrol would. I can't even begin to describe what high doses of Steroids feel like. I think I have tried in the past and failed. Needless to say this whole situation is just one big cocktail to send a person over the edge never to return. Thus the crisis we had on Saturday and again last night and I'm sure on Sunday night when she sent me home and I was not around to see it. Poor little kid!

She got through the dose of Thymo by around 10PM and was able to start feeling almost human again in time for bed. She was actually able to get a decent amount of sleep last night. I think we both got around four hours of uninterrupted sleep then another two before everything started up again this morning. She had a bout of tummy trouble after breakfast but was able to get medication for it pretty quick so it was under control fast.

The doctor came in about midmorning and checked all the charts and numbers and said she gets to go home today. I almost hate to write that until we are actually out the door given what happened last time they took a Hickman line out of Maddy's neck.  But we are hopeful that everything will go smoothly this time. She is getting a dose of IVIG before they can remove the line and it just got hung at 12:30. IVIG can take up to 5 hours to infuse so we are still going to be here a while. Also she will have to sit still in her bed for at least an hour after they remove the line. Maybe we will be home for dinner? But at least we will be home!

The plan from here is to monitor her immune levels and antibodies. She will also still get monthly infusions of IVIG so that is another great bit of news! (there really needs to be a sarcasm font) The doctor today described what they did to Maddy as a thermonuclear attack of her immune system so she is yet again severely immune compromised. That means being very careful of contact with the outside world and watching very closely for any signs of infection. We still don't have any idea if her lung functions will return to normal but I am hopeful.

Thats all for now. I'll post again if things change.

This was my view when I peeked out into the courtyard this morning. It was about 37 degrees but the blue skies made up for the cold! Looking for more blue skies ahead! 

Sunday, January 5, 2014

Sunday Update

This seems an accurate picture for how Saturday went.

Well things have been going along here with their usual ups and downs. Thursday and Friday were pretty uneventful. I got to go home and get my laundry dome and spend a little quality time with Missy on Friday so that was good for me. Maddy got to have her BF come visit and  spend a bit of time with her so that was a highlight of her day. I came back Saturday afternoon after the first round of Thymo. It took all day to infuse, its a 6 hour process. Maddy was ready for a walk about by the time it was all over and she was free to move about the building so we took a walk to the waterfront around 5:30. Thats when things got a little rotten.

Maddy's still been having shortness of breath if she tries to walk at a normal human pace. By the time we got off the floor and half way to the waterfront she had to stop and rest. So we had a seat on a nearby bench and chilled for a bit. Then we took off again and when we got to the parking lot we spotted an abandon wheelchair and she asked if I could drive her the rest of the way. No problem, into the chair we got and off to the waterfront we went. I could tell she was getting frustrated and it didn't take long for it all to come to the surface and turn into a full fledge bummer party. She was bummed that she is still sick, bummed that she has to be in the hospital again, bummed that it seems like she will never have a "normal" life and there is nothing we can do about it. All totally understandable and sometimes the only way to deal with it all is to have a little cry and get it out. So thats what we did.

Forty minutes later we were back in the room and she was still pretty bummed out so I put in Monsters University in the hopes of cheering her up. Then she mentioned almost off handedly that her chest was hurting, it felt like it was on fire. This of course concerned me so I asked her why she didn't tell the nurse a few minutes before telling me when she was in the room. Wrong thing to say! I totally blew it and started another round of being very upset. Apparently Maddy had been having a bit of a panic attack and I had mistaken it for a little case of the blues. Anyway we couldn't figure out if the chest pain was from the panic attack or something else so we got the nurse involved. They gave her some stuff to calm her down and called the doctor. He ordered a chest X-ray, a GI cocktail (I'll get to that later, fun stuff) and put her on a heart monitor just to make sure nothing was going wrong. Maddy's chest pretty much felt like it was on fire the remainder of the night. Nothing came back showing any cause for concern so it was either a reaction to the Thymo, a delayed reaction to an inhaled med she had a problem with earlier that day or a result of the panic attack. Either way she is better this morning so we are happy about that.

Ok, let me backtrack a little. Earlier that day the doctors wanted to put her back on that inhaled anti-fungal, you know the gross orange stuff that takes forever to nebulize and SUCKS! Anyway this time within two breaths of the stuff she started wheezing and had a huge coughing fit. An immediate negative reaction to the medication. The respiratory ted stopped it right away and called the doctor who discontinued the med and gave her something to take by mouth that should make sure she doesn't get a fungal infection. BTW, if there is a pill you can prescribe to stop this fungal infection from happening why use the stupid orange stuff that everyone hates, is toxic to everyone in the room and makes the patient have lung spasms?!?! Crazy!

Now on to the GI cocktail.  Here is a picture of the bottle...

Note the 2% lidocaine! It made her throat and tongue immediately numb. She got a kick out of it and we both had a pretty good laugh just when we needed it. Of course she knows what heart burn is and what she was experiencing was not heart burn. But they have to rule everything out so she got some stuff to calm her tummy and numb her throat. It didn't make a dent in the check pain but was a bit of comic relief.

Of course all this went down just as I was supposed to get her dinner. Then add the pervious cocktail into the mix and she was not allowed to eat until after 10PM. I ran out to Sweetbay and picked her up a late night snack so not all was lost.

That brings us to todays news. AS mentioned before her chest pain has gone away, I'm guessing it was a side effect of the Thymo or left over problem from the anti-fungal. Today she was supposed to get the second dose of Thymo but the nurse just came in and told us the doctor canceled it for today. He said one of the numbers they look at in her blood work was too low for her to get the treatment. Something about the white blood cells. So for now she is on hold with the Thymo. The plan was three to five doses of Thymo, depending on her antibody levels each day. Then one dose of IVIG before she goes home. That puts us out of here Tuesday or Wednesday instead of our hoped for Monday release date. The nurse said that taking today off the Thymo shouldn't put us off schedule because they will not give the treatment if its not safe. In other words they are not stuck on that three to five doses number. We are however stuck until at least Tuesday, probably Wednesday before we get out of here.

I was going to take tomorrow off so I would be ready to take her home when she gets released. Instead I will go to work tomorrow and take Tuesday and Wednesday off. I hope that does the trick because we have an event for work on Saturday that I can not miss.

Anyway looks like she gets a "day off" today. Not that it does her any good to have a day with nothing to do. But at lease she is not tethered to a tube for six plus hours. They already gave her Benadryl in anticipation of receiving the Thymo so she is a little tired this morning. Maybe we can have a better walk by the water after she wakes up some. Thanks for the prayers, I'll update again soon.

Wednesday, January 1, 2014

Happy New Year...

...or not so much! I'm trying to keep my promise and update every other day or so. Here is how things are playing out. Maddy never got her second access line in. There was a mix up with interventional radiology and they never got her on the schedule. I asked Dr. Rolf about it this morning and he said he doesn't want to put her through getting another line if he doesn't have to so we are just going to make due with the Hickman she has in her neck now. They can only use it for Pheresis for the next five days but they don't need to give her anything else by IV until after Pheresis is over anyway so they will just deal without an IV at the moment. Then after the five days of Pheresis they will use the Hickman line for any antibiotics they decide to give her before she goes home and for the Thymo treatment. Hopefully nothing comes up in between that and she will be able to get away with just this. She said that she is ok with just getting a peripheral IV at the end if thats all she needs. They have been able to get her morning blood draws from the veins on her hands so far so all is going well on that front at the moment.

Yesterday was not too bad for Maddy. I had to work in the morning and then run errands in the afternoon so she was alone for the day. She was bored but nothing major happened so that was good. My aunt Jane called as I was leaving work and told me the Botts sisters were buying us New Year's Eve dinner! So they wired us the funds and I was able to pick up Taco Bus for our dinner last night. What a treaty! Thanks again mom, aunt Jane, aunt Libby and aunt Susan! Maddy enjoyed her dinner very much. We planned on staying up and taking a walk down to Channel Side to see the fireworks at midnight. But that got busted because the nurse gave Maddy her evening meds and we forgot to hold off on the sleep aid. So by 11:30 Maddy was zonked out. I went down and watched them by myself, which was not the most fun I have ever had but it was a great view. The hospital is located across from downtown Tampa and the channel between them is where the barge full of fireworks is positioned. All they partiers are across the channel on the downtown side near the convention center and Harbor Island so the hospital side was practically empty. There were a few people who drove their cars over to the hospital and jumped out at the last minute just in time to see the fireworks. I'm guessing most of them were residents of Davis Island which is where the hospital is located. It was nice to have such a close view of the fireworks without the crowd. I wish Maddy had been able to stay up for it.

Thats all the good news I have, not on to the not so good news. Today has not been a good day for my little Madelyne. It started ok but early as always with a blood draw at 4 and the doctor in by 6. Maddy was able to sleep through most of that. Then everything started coming along full force by 7:30 and I got her up to eat her breakfast while it was still warm. I picked her up a Chai Latte when I got my coffee and was looking forward to a good day. Then when I got back it turns out they brought Maddy all kings of wrongness for breakfast. But she was a trooper and ate most of it anyway. Within about ten minutes of finishing breakfast she started to feel nauseous and her stomach was in a lot of pain. No real reason of it, she took all her enzymes and her lactaid. She told her nurse that sometimes she just gets stomach pain and feels sick for no reason. They got her some Zofran pretty quickly and that seemed to help with the nausea after about 30 minutes. Again she troopered up and took all her other oral medications while still feeling sick. I don't know how she does it.

While the nurse was getting her the anti-nausea meds and sorting out her tummy the dialysis unit sent transport up to get Maddy to take her down for Pheresis. They said because of the holiday they could not do it in the room like usual and had to take her down with all the other patients. Well I was not about to have any of that! They did that once last time she was here and both Dr. Rolf and I gave everyone what for with both barrels! There is no need for an immune compromised patient to be put in a room full of sick people! Especially when she is feeling shitty! Anyway, I promptly told the nurse that Dr. Rolf gave strict orders for Maddy to get her Pheresis in her room and that she was not going down there. The nurse didn't even blink an eye, she said thanks and picked up the phone and told them to send someone up instead. Didn't even double check it with the doctor! Good nurse!

So thats our day so far. They came up to do Maddy's Pheresis by around 9:30 and she was able to rest comfortably in her bed through the whole thing. She had two different nurses doing her Pheresis, they switched out midway through, and both were very sweet and accommodating of her not feeling well. They did their job like little church mice and didn't let anyone else bother her while she was getting her treatment. It's about 1:30 and she is still resting. I hope her tummy feels better when she gets up.

I'll update again in a few days.