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.