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.

1:40PM

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.

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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!

 

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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!

3PM

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!

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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.

 

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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.

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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!

 

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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.

2:11PM

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!

2:57PM

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...

4:30PM

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!

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