Tuesday, July 30, 2013

Day 15, Vampire

Maddy got two pieces of news this morning. The first bit of news was positive, her antibodies are down by 40%! The doc said that is good and she should be able to finish up her treatments after this round of pheresis and chemo. Then he wants her to get IVIG every month after this to help reduce the risk of chronic rejection. The not so good news is that her blood count has been on the decline and she needs to receive a blood transfusion. No big surprise there. After all they did take blood from her every hour on the hour yesterday! So this morning they gave her some IV potassium and some magnesium in preparation for the blood. I'm guessing she will be getting whole blood but she can't remember what the doctor said. Oh and they had to give her some weird shot in the back of the arm that has left a nice welt. Poor kid.

Anyway, we are still waiting on the transfusion. Hopefully things will still be looking up over the next few days and we will get out of here by the weekend. But I don't want to jinx it.

Oh, and I got her a smoothie on the way back from work! I'm an awesome dad! Ha Ha.

4:30 PM Blood is here.

They finally got Maddy's transfusion ready. She will be getting 2 units of whole blood. Because she has had an allergic reaction to blood products in the past they will be infusing the blood over an extended period, 3 1/2 hours for each unit, and monitoring her vitals the whole time. So she may be finished by 11PM if we are lucky. That means she is tethered to her IV and a blood pressure cuff for the duration.


Now we wait to see if she has an allergic reaction. She may get hives just from the thought of the possibility of getting hives!

Monday, July 29, 2013

Day 14, A New Week

Here we still are. Today Maddy will get another round of pheresis and the third round of chemo. She is pretty worn out from it all and trying to keep her spirits up. They are still checking her kidney functions frequently and also doing other blood work every hour to check levels of different things. Gotta keep all of the big picture in view. We were hoping for some antibody results today but so far we got nada! They have been working on Maddy for over an hour now trying to get this round of pheresis going. The first try there was a problem with her platelets I think. Then they had to change the dressing on her central access site. I'm hoping all goes smoothly this time around. The machine is spinning up again as I type and I'm finding myself holding my breath waiting for it to beep and say its not gonna do it. Ok, I see albumen moving out of the bottle... And there is plasma going into the bag! We have lift off people! That is a relief. If there was a problem with her central line I would hate to think about how long that would take to correct. Which would put us way behind schedule on these treatments and she would never get to go home.

That's my view during Maddy's pheresis treatment. That big bag full of yellow stuff is her blood plasma which they throw away.

So, tonight after this treatment she will get her next round of chemo. Then tomorrow is a rest day. Hopefully we will have some results about her antibody levels by then. Meanwhile it's just sit and wait and try not to feel too rotten from the chemo. Oh and did I mention the pheresis makes her cold now? So it's about a hundred degrees in the room! I should do some hot yoga! Lol

Saturday, July 27, 2013

Day 12, The Weekend

It's Saturday, I think... Things are moving slowly in Maddy's treatment. They are doing two days of plasma pheresis with a dose of chemo after the second treatment then a day of rest. Yesterday was the second dose so today is a rest day. Maddy said she things yesterday's dose of chemo was bigger than the first one. She is feeling nauseous today and she didn't feel that way the day after the first dose. Yesterday she was really worn out even before pheresis and chemo, she said she pretty much sleepy the day away, she even went right to sleep after getting her chemo treatment at 6PM. They also started her in a daily dose of Ableset, an inhaled anti-fungal to make sure she does not end up with yet another complication while being treated for the rejection. It's a very gross medication to inhale and takes about 45 minutes to administer. Yuck!

They also started her on a new oral supplement of Sodium Citrate and Citric Acid. Not sure what this is for, probably to replace something she is loosing during pheresis, because they said she the levels in one the many things they check every day were down. Then they started giving her this. (Sorry, normally I have better information but I have not been able to be here to chat with the doc for a while.) Anyway, as you can probably guess by the name it is very acidic and hurts Maddy's tummy when she drinks it.

No official word on if her antibodies are going down substantially or not. I am hoping we will have good news on that front tomorrow or early next week. I'm still just trying to take it one day at a time. Maddy is coping well, as usual, but overall just feels rotten. Of course she won't tell anyone that! If you ask her how she is doing her response is always just "fine". She says its just easier that way. Lol

As usual no news will be good news, I'm not going to update about the boring treatments every day. Thanks again for the prayers and we hope to be out of here one day.

Day 13, Sunday

The food is gross in the hospital. Add wicked tummy cramps to that and what do you get? Maddy spending yesterday not eating or drinking very much. As usual she spent most of the day suffering in silence, so I didn't know how bad she was hurting until 7PM. She mentioned a "tummy ache" to the nurse earlier in the day but it was underplayed so the nurse and I didn't even really think anything of it. Turns out it was a very bad tummy cramp that did not go away all day. We finally got her some pain and thay helped. She was able to eat some crackers. I had a suspicion the tummy pain was from the Sodium Citrate and Citric Acid. I looked it up on the Internet and the FDA website says to dilute it with water and take after eating. I guess the nurses don't read the recommendations because they were just popping the little thing open making her drink it straight and giving it to her when ever. I told her to not let them do that any more and make sure she eats something before drinking it. This morning Maddy had the nurse leave it and then she diluted it with water and took it after breakfast. No more tummy ache! I don't know why I have to always figure this stuff out. I guess it's fortunate that I'm good at problem solving.

So this morning Dr. Rolf said that we will get the results of Maddy's antibodie levels back sometime Monday afternoon. Then they will know how to modify her treatment plan. Hopefully they will be gone and we can end this madness but I don't know if they will just stop the treatment course even if her antibodies are gone. Today starts another cycle of pheresis followed by chemo. Maddy's Keaton levels were off in her blood work this morning. I'm pretty sure it's because she is dehydrated from yesterday. They want to make sure her kidneys are protected so they are going to hold back on one of the immune suppressing meds she takes, prograf, and give her some IV fluids before starting pheresis today. I told her she has to make sure she stays hydrated even if she gets a tummy ache because she can't afford to have her kidneys fail at this point! I'm sure this IV fluid will help and she will be back to normal levels tomorrow.

That's it for the weekend update. You all keep cool out there now!

Wednesday, July 24, 2013

Day 9, chemo #1

It's been an interesting day! Here is the scoop. Last night was when they were supposed to start the new chemo, valcade. It is supposed to be done immediately following plasma pheresis. She was supposed to go down for pheresis at 7:30PM and I was going to go hang with her so she was not bored and alone. They postponed because they were short handed and Maddy didn't go down until 10:30! She told me to stay back in the room and go to bed because I had to work in the morning. She is so sweet! It took a few hours for her to get back, and then they had to get the chemo nurse to come administer the first dose of valcade. That didn't happen until about 1:30AM!

I got up with Maddy while they administered the chemo. It was not a huge dose but they had to administer it subcutaneous, like insulin, in her tummy. It burned for a but she said but didn't hurt for too long. I could tell she was very uncomfortable. They had lots of instructions and precautions to go along with the chemo. See the door signs below. The nurses all have to use special chemo gloves when working with Maddy especially when dealing with any of her body fluids. Apparently Maddy is now poisonous until 24 hours following her final dose of chemo. They gave her a dose of benadryl before to make sure she was covered in case of an allergic reaction. They also had an anti-nausea medication. Both if which usually knock Maddy out. So she was hoping to finally get some sleep and not experience any side effects.

She told me to go back to sleep after all the hubbub was over. I got a little bit of restless sleep but. She didn't have quite as much luck. She didn't have any nausea but she did experience some issues with her arms and legs. The best way to describe it is restless leg syndrome in all her appendages. At about 3:30AM she called her nurse who was able to get her some Adavant, which helped her get some restless sleep. When I got up at 4:30 to go to work she was resting a little.

After that she had a bit of a bad morning while I was at work. She tried to catch up on sleep but could not get past the weird feeling in her arms and legs. It was not exactly neuropathy, which is one of the possible side effects, but very uncomfortable and stress inducing none the less. The doctor told her everyone was ordered to leave her alone today. No pheresis, no chemo, only breathing treatments and lots of opportunity for rest. By the time I got back here after work around 2PM she was up and ready to get the heck out of this room for a while! We took a nice long walk to Starbucks and sat by the channel for about an hour in the fresh air and shade. It didn't take long for her to be back to her usual cheerful self! I'm still simply amazed at how resilient this young woman is!

The above pic is before Maddy went for her walk at 3:30PM. The pic at the top of the page is from about 8PM as we prepared to watch one of our favorite movies. What a difference! In other news, despite having to deal with all this hospital stuff and only a few hours sleep in the last few days I managed to have a good birthday too! Maddy remembered my birthday and wished me a happy bday at 1:30AM while she was getting stabbed in the tummy! Then I got to go to lunch with Missy, my new awesome girl friend. I also got a huge Wrights cake at the office! Maddy and I had a great chat during our walk and it was awesome to see her cheer up so quickly. Of course, the only thing that would have made it better is if Maddy was not going through this.

If things continue to proceed like this I will not post to this blog again for a few days. If things go south or get weird again I'll keep everybody in the loop. Remember no news is good news. Thanks again for all the prayers.


Tuesday, July 23, 2013

Day 8

Found out they have DVD players built into the TV here. I brought a bunch of movies to keep Maddy entertained. She is in good spirits today. Last night after the doc told her the rejection was persisting she was very upset and sat in her bed and had a bit of a cry for a very long time. Poor kid! Her nurse, Anne, who has been with her for a number of days in a row was very upset to see Maddy so sad. They had a conversation earlier in the week about Reese's pieces and how Maddy likes the peanut butter part better than the chocolate. So today Anne brought Maddy a giant Reese's cup and Reese's peanut butter chips (see below). So sweet! Anyway, I thought Maddy would be in a funk for at least a day or so but she cheered up within a few hours of getting the news and was cracking jokes with me and laughing at the TV. Amazing! I never cease to be amazed at how strong and resilient my daughter is!

So the bad news for today is that they will be starting a round of chemo therapy on Maddy tonight immediately after her plasma pheresis. It's called Velcade and it will not be a fun experience. The most common side effect is peripheral neuropathy, numbness and possible pain in the fingers and toes. Apparently in order to lessen the risk of this they inject the chemo in her stomach or thigh instead of intravenous. It is very painful and she will also most likely experience nausea so they will have anti nausea meds ready. I think it's going to be a long night! They want to do five of these treatments and I think they space them out every 72 hours. Doing the math that's another 14 days in here just for that treatment! I hope I'm wrong! Maddy was a bit vague when she related the information to me. Nothing we can do if that's the case anyway so we are just battening down the hatches and making a go of it.

I decided to spend as many nights here with Maddy as I can, even though I'm still doing the morning show. I'll go to work at 5am everyday and be back to the hospital by 1ish each day to help Maddy. If things get really bad I will ask John to juggle the staff around and take time off to just be here all the time. For now though I will work and stay here. The more crazy treatments they throw at Maddy the scarier this rejection scenario gets in my head. Maddy is so positive about it, I'm just trying to feed off her energy. She says she has been though this kind of stuff before and she is always fine. She just can't seem to do things the easy way. Lol

Thanks again for all the prayers. I'll keep updating as developments occur. Hopefully her body will not react too badly to this chemo treatment.

Oh, yeah. We took a walk and saw some pretty things around the hospital this afternoon. I took time for find the beauty in our dark moment. The above is the result.

Monday, July 22, 2013

Day 7 and no end in sight!

This SUCKS! Dr. Floreth just came in and let Maddy know that she is in the 20% that needs more pheresis to get rid of the antibodies. As a matter of fact her antibodies are not only still persisting, they have increased! This is really bad news. They will be doing another round of plasma pheresis. Possibly as much as ten days worth. He kept referring to time in weeks instead of days. That was not a good feeling! He also mentioned the possibility of needing more chemo therapy to combat the antibodies. Maddy had a mild reaction of a fever and just plain feeling bad with the chemo last night. The doctor mentioned a more aggressive form of chemo being used if needed.

The plan now is to do the plasma pheresis and check her antibodies every few days until they see clear results. They are working with immunology to make sure they cover all the bases and attack this rejection as aggressively as possible. The pheresis doctor has already come in to get the ball rolling so we don't miss another minute getting started!

He also wants to see greater improvement in lung function before sending her home. The pneumonia is under control and the pneumothorax is completely cleared up. So her persistent low lung functions are a direct result of the rejection.

I guess that's it for now. Hopefully they don't have to make her too much worse in order to get her better. Just being in the hospital is taking its toll on her. She is totally miserable and can't stand the thought of being in here one more day. I think she is feeling like she did before the transplant. It seems hopeless sometimes. But she has always been a fighter so I know she won't let this keep her down! Meanwhile we will be here until this pesky rejection episode is beat down!

Sunday, July 21, 2013

Sunday, day 6

This is Maddy's Sunday brunch! She realized this morning that she does not order food that requires chewing in the morning. Too much effort! Lol

I got the low down from Dr. Floreth this morning so here is the scoop. He said they are aiming to get her out of here tomorrow. The thing that may get in her way is the antibodies. After the last round of pheresis they send off a blood sample to check for antibodies. He said 80% of patients come back free of antibodies after five rounds of pheresis. The other 20% have to do another five rounds! Yikes! I hope the law of averages is on our side! If there are antibodies still showing up in today's round of blood work they will order another five rounds which will keep her in the hospital through next Sunday or Monday! Ugh!

As for the other IV she is getting today. One is called Intravenous immunoglobulin (IVIG), here is the Wikipedia page. Basically now that they have removed her antibodies that were attacking her lungs they will replace them with immunoglobulin so that she still has some protection against infection. The other treatment she will get today is a mild form of chemo therapy designed to further destroy any remaining antibodies that may be floating around in her body. I can't remember the name of it because he said it too fast. She has had both of these treatments back when she had the first round of plasma pheresis immediately after her transplant so she should not have a bad reaction to them. Fingers crossed!

Other than that it should be a quiet day here at club TGH. She was in a good mood this morning and was very chatty. It may have had something to do with the grande iced chai I got her from Starbucks! Now she is taking a little nap before her next round of treatments.


Found out what the chemo is that they are giving Maddy. Rituxan, it's commonly used in the treatment of non-Hodgkin's lymphoma. Basically like I mentioned before its being used to attack the antibodies and fight the rejection episode Maddy is experiencing. There is not much information on the web about its use in this application so I won't bother with a link. She is getting her IVIG treatment now and the Rituxan later.

Saturday, July 20, 2013

Day 5

Last plasma pheresis treatment! Two more days in the hospital and Maddy should be able to go home. She is really tired of being in here. Like that's a surprise!

Not much to report over the last two days. I got a text from Maddy Friday morning saying they had done her EEG. Then her BF hung out with her for the day, which gave me a chance to get my laundry done and go to the gym! Last night about 11PM they took Maddy down for her MRI. They have a weird sense of timing at the hospital. But it kind of makes sense. They do all the outpatient MRI's during the day and get in all the emergency ones they need done between those. So when they have a patient in house they just take them down when ever it's convenient.

I got back down here about mid morning and Maddy was napping. We had a nice walk around the hospital. Literally, we went looking for the food trucks that are supposed to be here every day and they were no where to be found! Apparently they have late hours on the weekend and we were too early. We ended up walking the entire perimeter of the hospital. Poor Maddy, she was a bit upset with me after that one! We finally ended up at McDonald's of course. Yuck! But I did get this cute guy for our troubles.

The neurologist came by after we got back and told Maddy that her brain looked beautiful! She compared this MRI to the one they took two years ago right after the seizures and there is no remaining damage. The EEG came back clean too of course. So they are going to taper her off the anti seizure meds over the next few weeks. That's two less medications Maddy has to worry about.

Now we wait for her blood work to come back showing they got rid of the antibodies that were causing the rejection. Make sure the X-ray shows no more signs of pneumonia. There is some kind of treatment they are giving her for the next few days that is a follow up to the pheresis. Maddy couldn't remember what the doctor said it was but it is one of the same things they give people as a follow up to chemo therapy. I'll try to find out from the nurse and post it later. After all that we get out of here! I'm pretty sure Monday will be the day.

Here is a picture of a seagull just because!


Thursday, July 18, 2013

Day 3

Things went pretty well yesterday so I didn't bother with an update last night. After going into work for two hours, I finally got home and took a shower and a nap! It felt so good. Maddy's BF came down and hung out for a good part of the day, so she had company.

The only little hiccup of the day was shortly after I headed to work in the morning. It seems like her whole life the minute I step away from her bedside something weird happens. The respiratory team came in to give her Colisten treatment and a few minutes into it she had trouble breathing. The inhaled antibiotic can be irritating to healthy lungs so Maddy's tired lungs did not respond well at all. They got her a Xoponex treatment and that opened her airways. After that she was just fine. That evening they made sure to do Xoponex first and she tolerated the treatment without any issues. I came back to the hospital in the evening and hung out until after that treatment to make sure it went well. After that I went home to sleep because I was back on the morning show again today.

This morning while I was doing the show I got a text with the above picture. It's the place where her chest tube was. She said Dr. Floreth was the doc who removed it with Dr. Rolf observing. She told me he said take a deep breath and then let it out. On the exhale he pulled the tube out, but only made it half way before she was finished exhaling. Dr. Rolf yelled "pull harder" and Dr. Floreth had to yank it the rest of the way out quickly. Then Dr. Rolf proceeded to tell Maddy how whiny she was and asked her if she wanted any cheese to go along with it. It may sound bad on paper but you have to know him to understand. That kind of comment is exactly our sense of humor so it was totally funny and appropriate. He gets us. Maddy said that overall it was not so bad. And she is glad to have the tube out. Duh!

After work I had to run home for a few last minute items before coming to the hospital. When I got here Maddy was asleep. She got up for a little but and explained that she didn't sleep well at all last night so she is being really lazy today. I think she deserves it and apparently the staff does too because she has since gone back to sleep and no one will bother her. Usually it's a parade of people in and out of the room, waking her up when ever they feel like it and demanding she do this or that. Today they see that she is asleep and quietly tell me why they came by and very politely ask me to pass on the information. But tomorrow they work begins. Respiratory physical therapy came in and said they will start working with her tomorrow to rebuild the strength in her lungs. Lots of breathing exercises, daily PFT's and incentive spirometer work. It's good for her, but today they are allowing her to rest.

I don't think they have done her pheresis yet today. This will be treatment 3 of 5. Hopefully we are still on track for a Monday release. Maddy has company scheduled for tomorrow afternoon so I will not be coming back until tomorrow night. I will be able to spend the night over the weekend since I don't have to work so she will have me around to get things done for her. Ha Ha. I will probably not post again until Saturday. Thanks for the prayers!


A few things have happened this afternoon that I feel are blog worthy. As most everyone saw Maddy went for a walk with me down to McDonald's. see above pic. We took a nice stroll by the water behind TGH after that and it's been a very nice afternoon.

Shortly after returning from the walk a neurologist stopped by the room. You may remember Maddy's siezure on July 4, 2011 which was a result of viral meningitis which caused her brain to swell up. She has been on two medications for that episode ever since. Keppra for the seizures and Gabapentin for the migraine associated with the brain swelling. Maddy asked Dr. Rolf this morning when it was time to stop taking these since its been two years already. He called in a neurological consult to get the answer. A nice doctor from the group that treated Maddy back in 2011 came by and said they usually wait two years before tapering a patient off of the two medications Maddy is on. What good timing that Maddy happens to be in the hospital exactly two years later! So she doc started the weaning process and will lower Maddy's dosages today. She also ordered a follow up EEG and MRI to make sure there is no scarring on Maddy's brain that could cause another seizure and that her brain function is normal again. She will get both of those tests done while Maddy is here for this visit which saves us a full day at the doctor! So it looks like something good is coming from this visit. Other than getting Maddy better of course!

Ok I'll post again when we have results of these new tests!

Wednesday, July 17, 2013

Day 2

The first night went as well as can be expected. Maddy's pain was manageable and she tolerated the plasma pheresis very well. She took a sleeping pill which worked pretty well. We were only up a few times through the night. Her O2 sats remained consistent and did not alarm at all in the night!

As usual the morning routine is up at 4AM for blood draw, which thankfully they can take from the central line. Then at 5:30 they get her up out of bed and into a chair for the doctor. He likes the patients up and alert for his morning rounds, which can start as early as 6AM! Today he didn't come by until 8:30.

By the time Dr. Rolf came by Maddy was in pretty good spirits even though she is still experiencing a lot of pain at the chest tube site. He told her he will put her on a Fentenol patch to manage the pain, that way there will be less peaks and valleys in her pain management. He also took the suction off her chest tube and removed her from the O2 telemetry. Two less things connecting her to the wall! She will remain on oxygen for another day just to make sure she doesn't have to fight for breath and she can concentrate on getting better. The plan is to remove the chest tube tomorrow if the chest X-ray shows improvement. Continue plasma pheresis for five treatments. He said she should be out of here by Monday!

I took the morning show off today so that I could stay with Maddy over night. I will be going into the station for a little while today to add music and the such. Then I'll go home and shower and come back. Tonight I will leave Maddy by herself and sleep in my own bed so I can do the morning show tomorrow. I will take half days from here on as long as Maddy continues to improve. Even with the pain of the chest tubes and central line sights I can tell she is feeling a little better already.

Here are some more gross pictures!

Chest tube site.


Central line site.


Tuesday, July 16, 2013

From Sucks to REALLY SUCKS!

The results came back from Maddy's CT scan and it has us worried! She has pneumonia in the upper lobe of her left lung and her right lung is partially collapsed, which means there is air in her chest cavity. They have to put her on antibiotics for the pneumonia, obviously, but for the air in her chest cavity they have to put in a chest tube. They will leave the chest tube in with suction on it for a few days to make sure her lung opens all the way up and she can breathe again.

This is really crappy news in one respect but the doctor says on the other hand it's positive. He said if the only reason her lung functions have taken this big a dive were rejection there is not much chance for full recovery of lung function after treatment. Having these other two issues as a possible cause for the drop in lung function increases her chance of having a full recovery. Basically the air and pneumonia are more quickly treated and have better recovery statistics than a full on rejection episode.

Dr. Floreth is very optimistic that Maddy will be feeling much more like herself in a few days. Then after a week or so of treatment her lung functions should be back to where they were. He also said it makes sense that it took three different things to knock a tough girl like Maddy down! She don't mess around!

Maddy went down for her central lines and chest tube at around 4. It was 6:30 before she came back. She is still a little groggy but seems to have wethered the procedure well. They said she tolerated the central lines and chest tube well.

Just as I was writing the above all hell broke loose. The nurse hooked up the suction for her chest tube and Maddy suddenly couldn't breathe. It took us about 20 or 30 minutes to get her breathing again. She was in a lot of pain and couldn't catch her breath. They had her on 3 leters of O2 through a nasal cannula but she said she couldn't get enough breath from her nose. We called in the respiratory tech real quick and she set up a mask so she could gulp air through her mouth. That got her O2 sats up above 90 again. It never dropped below 80 so we knew she was not in trouble. But she was having trouble understanding that she was ok so she started having a bit of a panic attack on too of it all. We finally got everything under control and the doc called the nurse back. He said when they put suction on the chest tube it probably expanded her collapsed lung quickly, causing an imbalance that lowered her sats and made her feel like she couldn't breathe. After all was calm again she was able to tell us she could feel it crackling and expanding a little.

Now that all that is over and she is stable again they were able to start her first IV antibiotic. We are waiting for the dialysis team to come up here for the first round of plasma pheresis. As I typed it they showed up! (Now that's service)


The above pic is of Maddy's central lines. The top line goes in at her neck and if the the pheresis. The bottom lines go in at her collar bone and is used for antibiotics and they will draw her blood work from there as well. So no more sticks! (We hope)


Here is the machine they will use for the plasma pheresis. A quick refresher on pheresis. They take her blood out. Spin her blood to seperate the plasma from the blood. The antibodies they are trying to get rid of are in the plasma so that goes right out the window. Not literally. Then they add albumin to the blood cells and put it back in her body. She will make more plasma but it takes too long to make albumin so they need to add it.

Things are going well with the pheresis so far. Maddy still has not eaten but I'm about to run down and get her some McDonalds. Hooray! I'll update again tomorrow. Thanks for all the prayers. I hope I didn't leave anything out.

Follow up visit & slammed into the hospital!

Well, Maddy has not gotten any better in the week since her bronchoscopy. I think she is even having more trouble breathing. The doctors called in Thursday last week and said its an infection not rejection. They were expecting her to improve over the weekend. Needless to say she didn't. She spent a miserable weekend at home just feeling crappy! She called yesterday and the docs said to come in this morning to get PFT's and see how things look. They said pack a bag just in case. So here we are. She is done with blood work and PFT's. Now waiting to see the doctor.


11:05 AM

Unhappily waiting for a CT scan. They are admitting Maddy and while we wait for a bed to be available they are going to throw her at every test they can think to do. So here is the deal so far...

They are kind of backtracking on the news that this is not a rejection episode. While the biopsies didn't show acute rejection there are signs of antibodies in her lungs and blood work. They said that normally they would just keep an eye in it but with the accompaniment of her dramatic drop in lung functions and the fact that the mega doses of steroids they gave her last week was ineffective they need to treat the antibodies aggressively. Basically the antibodies in her blood are another form of rejection and they are attacking her lungs.

So the treatment for this is plasmapheresis! Yep, just like she got following her transplant. See this entry and this entry for information on the last time this was done to her. She is not looking forward to going through this again. They will be putting a main line in to the the pheresis. It will be done under light sedation and they basically put that crazy line coming out of her neck again. I'm pretty sure there are pictures of this kind of line in the above links.

Ugh! So we are back at it again! The doctor also mentioned seeing signs of infection so they will also be treating her with antibiotics. I am hopeful that this visit will go by quickly but I hate to even say that out loud. I will be continuing to work while Maddy is in. I will go in and do the morning show every day and then take the rest of the day off to come hang out with Maddy. I will update this page again later today when she is settled into her room so check back here for updates on the treatment plan.


1:15 PM

In the room! Waiting to get her main line put in. They tried to get an IV in her but all her veins are still blown from last week. So they ordered a pic line instead. The doctor placing the main line was scheduled to place the pic as well and just came in to check on Maddy. He said looking at her vein history he didn't think they would have much luck placing a pic line so he wants to do a tunnel Hickman catheter instead. It will be a lot like the main line they are going to use for the pheresis. He is hoping they can place both lines on the same side. If not she will have a line coming out both sides of her neck,

They expect to be able to get the line placed later this afternoon. The nefrologist PA came by for the initial pheresis consult. Dr. Floreth has ordered five rounds of pheresis. They expect to be able to do the first round tonight which puts the last one on Saturday night. Not sure what that means for a possible release date but we are expecting to be here at least a week if Maddy does not run into any complications.

Everybody we have spoken to today has referred to this as a rejection episode so I guess we are in for her first rejection since transplant. They told her when she left the hospital after transplant that she owed them one rejection and one infection. I guess two years is a good record!


Wednesday, July 10, 2013

Unexpected hospital visit

I'm going to write this as it happens so I don't have to play catch up. Yesterday Maddy told me she was having a little trouble breathing and her PFT's were down. She called the transplant clinic and they had her take 60mg of prednisone to get started and said to come in as soon as she can in the morning. I'm doing the morning show so I took her in with me and we came to the lung clinic as soon as I could get out of there. We got here about 9:30 and did blood work, chest X-ray, and PFT's by 11AM. The docs said they want to see why her lung functions have taken a sudden drop so they are taking her back for a bronchoscopy. Hopefully we will be able to get in and out and they will treat her at home. I'll post more after we know more.


12:59 PM

Dr. Floreth just came in after the bronch to give me the scoop. He told me there is a high risk of rejection a few months after having a viral infection. Because of the RSV she had back in January thay think she may be having an acute rejection episode. It will take a few days to get the results of today's bronchoscopy and know exactly what we are dealing with. Her PFT's have dropped to 40% so they are worried she may have a little trouble recovering from this procedure. They are going to give her a bolus of IV steroids while she is in recovery from the sedation and keep an eye on her for a few hours. If she is breathing ok and doesn't need oxygen in a few hours she will get to go home. Otherwise they will keep her a few days. So I continue to wait and see if we can leave today.


Waiting in recovery. They are busy poking and prodding Maddy because they always seem to need more blood for something. The poor kid has not been allowed to eat or drink since last night at 9PM and they expect to be able to hit a vein?!?! The first guy to try her blood draw fished around for five minutes before giving up and Maddy just sat there and took it! Then he called a nurse over to stick her and she made a snarky comment about being tattooed and not liking needles. Maddy put her in her place! "I'm not even going to debate this with you. I'm tired of hearing it, that's just a smart ass remark that is not necessary." The nurse apologized and straightened up right away. She got it in one stick and the blood was so thick it looked like molasses. Took forever to fill three tubes. What a pain in the ass!


She has finally been allowed to drink and sucked down the chai latte I bought her before we knew she was going in for the bronch. Feeling a little more like herself now. More to come...

Here is the steroid they give her for anti rejection. Bracing myself for the rood rage to come!


Maddy is having some unexpected pain issues. There is a big knot on her shoulder blade and it keeps getting worse. It just caused her to have a bit of a pain crisis a minute ago. The nurse called the doc and they are going to give her some Norco for the pain. That's a strong pain med and I hope it helps. The nurse said that when they do biopsies during the bronchoscopy there can be issues with radiating pain. Apparently the nerves in your lungs don't actually work as pain receptors but the recognize that there has been damage, removal of tissue from the biopsy, and it causes pain receptors elsewhere to react. Causing the pain in her back. I hope the plan is still to send her home but only time will tell...


Going home! Maddy's pain is under control. They are calling in a prescription for more pain meds in case she needs them. Her O2 levels are fine and her chest X-ray came out clear. So we are good to go!