Monday, December 30, 2013

Stop all this rejection!

Here we go again! The story so far; Maddy has been fighting the rejection that started back in June for the last six months with not much success. Overall she has not really felt good for the last six months. She can barely breathe, gets winded when she walks a few feet, and she has not been able to gain back the weight she lost during the rejection. Her antibodies initially went down a bit in response to the pheresis and IVIG. They continued IVIG every month for the last six months. On Dec 18th Maddy had a clinic visit. Her pulmonary function levels were still stuck where they have been since the rejection episode in June. They also ran blood work to check her antibody levels again. Then on Dec 20 she went in for her final round of IVIG. She got the usual call after her appointment saying that her prograf levels were off so they adjusted the dosage and ordered blood work for Dec 26. The next day, Friday, they called and said her antibodies were still too high and that she needs to go back into the hospital to stop this rejection. So here we are today.

Dr. Rolf said that the IVIG targets your B cells and that usually does the trick for stopping the production of antibodies. But Maddy's T cells are apparently very active and keeping the antibodies in production. They plan on doing another round of pheresis, see explanation at the bottom of this old blog entry, followed by thymoglobulin. Dr. Rolf said thymoglobulin is about the same as IVIG, but attacks all the antibody producing cells instead of just the B cells

The plan is five days of pheresis followed by thymoglobulin. Should be out of the hospital in 8 days or so.

So that brings you up to date onto our visit so far. Dr. Rolf wanted to make sure we got the pheresis started right away so he personally put the large bore line I her neck. I was able to stay and hold her hand through the procedure. You may remember the fun Maddy had getting this line taken out at the end of her last visit. If not, here is a refresher. Needless to say she was not looking forward to getting another one of those lines placed. When she found out they were going to do it in the room with a local anstethetic, instead of down at interventional radiology where they sedate her for the procedure, she was less than happy. They gave her an oral medication to help her anxiety about the procedure but we all know that doesn't work worth a crap. I was able to hang out during the procedure and they even made me wear a hair net, which did provide a little comic relief to the situation. So here is how this procedure works. Do not read the next paragraph if you are squeamish.

The line goes into one of the veins in your neck, in this case on her right side. The doc starts with a quich sonogram scan to see if the vein looks like its accessible. He showed us the vein and said it was huge and will be an easy stick. Then the prep starts. Lots of gowns and blue paper to cover everything and make a sterile field. Then the bed goes up, and her head points down. After about 10 minutes of set up, during which Maddy's anxiety had a chance to marinate into a fine frenzy, he was ready to apply the lidocaine and get to work. Pheresis used the sonogram to spit the vein again and then hit it directly with lidocaine. Ever see a movie where he bad guy jabs a needle straight into a persons neck? Yeah, that! Then he gets an even bigger needle and jabs it directly into the vein. While holding his finger on the new needle he then gets a wire that looked to me to be about 4 feet long and threads it into the vein through the needle. The wire is coiled up in a convienient little sleeve so the doctor can thread it in with only one hand. Well as our luck usually runs the wire was jammed and the doc had to fiddle with it for about two minutes before he could get it to work. With that finally done it was time for more lidocaine. This time in the skin around the puncture to get ready for the big catheter he is about to jab into her neck. Here is a lovely picture of the one that came out last time, it's about the size of a drinking straw. After the lidocaine had about three seconds to take effect the doctor made a small incision in her neck to make room for the drinking straw. It was very obvious by the look on Maddy's face that she felt every bit of what was happening to her. After that he threaded on another slightly smaller catheter into her vein that, I think this one is just a place holder but I don't recall hem removing it. After that it's time to put in the line. Using the wire as a guide he then threads the large bore line into the vein and then removed the wire. Ever see a plumbers snake come out of a drain? Yeah, like that only bloody. Remember all the blue sterile stuff I mentioned before? It was draped over Maddy's chest and that is where he doc slapped that bloody wire, thwack! After that he flushed the lines and capped them off. Sutured the line to her neck so it does not come loose and dressed it. This is Maddy about 20 minutes after the line was placed.

Can you tell she was not very happy? Dr. Rolf said she did so good and was such an easy procedure that he gave her a lung lapel pin. These pins are what he bought the transplant team for Christmas this year. Ginger, the transplant nurse who assisted him today, told us that nobody except team members got one of those pins! Maddy is very special. She put the pin on her purse...

It's been about an hour and a half since they placed the line and things are running as well as can be expected. Maddy is still in a lot of pain but they gave her some Norco and she says it only hurts when she moves. And as if on cue the guy gets here for her first round of pheresis! Time to fiddle with a fresh wound!
They still have to place another line in her to use for blood draws and any IV medication they will need to give her while she is in. The doc said usually they do a pic line but Maddy has not had any luck with those so they are ordering another one of those little lines that will go in her neck near this big one. Just like last time. Hopefully now that they have this big line in they will be able to knock her out to do the little one down in interventional radiology. I guess we will find out later. Dr. Rolf told the nurse there is no hurry on the second line so they will work her into the schedule when they can.
I have packed up to hang out with Maddy for the next few days. I have to cover the morning show tomorrow but then I'm off on New Year's Day. Gonna have to find somewhere to get us a new year dinner! I'll update again if anything weird happens. Otherwise I'll just give boring little updates every few days. I will leave you with the comic relief I provided during Maddy's procedure.

Needless hair net selfie!


Sunday, August 4, 2013

Home after first rejection episode

Well that was quite a ride! We finally got out of the hospital and home on Saturday afternoon. Things are getting back to normal and Maddy is very happy to not be stuck in the hospital any longer. She still has a bit of recovering to so but we hope she will be back to her full self on a few weeks.

Follow up will be ongoing for at least a few months. She has an appointment tomorrow morning for blood work and possibly a consult with cardiology but we can't really figure that one out. We will have to double check when we get to the hospital tomorrow to see what all appointments she will be going to that morning. They will be watching her antibody levels carefully and checking them weekly. She will also be getting IVIG monthly.

I can tell the chemo is still taking it out of her because she has been nauseous and tired all day today and yesterday. I'm trying to get her to eat little bits at a time and hoping that will keep her energy up. I'm also hoping the effects of the chemo will be over very soon! It's really beating her up! I am making pot roast for dinner but don't think she will be able to eat much. Oh we'll.

I guess the only other thing is her PFT's. They have been increasing slowly, very slowly. I'm hoping she will get back to full lung function but the doctors can't promise anything. At this point she is back to being short of breath if she walks around too much. Yesterday while she was cleaning Tweaks cage she said she felt short of breath but checked her sats and was at 99%. So at least she is getting enough oxygen. I'll continue to update the blog as she completes her follow up treatments and appointments to keep everyone posted on how her numbers improve.

Thanks again for all the prayers!

Friday, August 2, 2013

Day 18, not going home!

Well we thought we were going home but it looks like we will be here for another night now. The short story is that there was a problem while they were removing the big central line that they used for pheresis. Let me just say right now that Maddy is doing ok and they are keeping her for observation after the complication but it looks like things are good at this moment. For the long version continue reading.

Maddy got confirmation this morning that she would get to go home after she got her IVIG. I got to the hospital after work at around 1:00 and they had just started it. They administer it in 15 minute phases checking her blood pressure and temp to make sure she is not having a reaction every time they step it up. It goes really slowly and was after 5PM before it was finished. As you can imagine we were chomping at the bit to get on out of here by the time it was finished. They have a doctor, I'm pretty sure it's a surgeon, come up to remove the Hickman and Central lines before we can leave. The nurse told us that Maddy would have to sit in bed and not move for two hours after having the lines removed before she could be discharged. Bummer but oh we'll.

The surgeon ended up getting tied up with an emergency and didn't get up to Maddy's room to remove the lines until 6PM. After all the prep was done and the sterile fields were set up he went about removing the stitches that hold the lines in place. Then he pulled out the Hickman and seriously it is the biggest line I have ever seen in my life. When Maddy described it as a bendy straw in her neck on FaceBook the other day it was no exaggeration. After they remove it they have to keep pressure on the site so the vein will seal and not bleed. He had the nurse keep pressure on the Hickman site while he removed the central line. That one gave a little trouble because they are designed not to come out. The line can actually seal itself to the vein and skin so sometimes they have to use lidocaine to numb the site before they pull that line out. After numbing the area the line was removed with no issues.

Now is when things get a little weird. All seemed to be going well, everyone was chatting about how big the lines are and how crazy they looked, I even got a pic of the Hickman before he took out the other line. Then as they were prepping the sites for the final dressing Maddy said something doesn't feel right and then coughed. The surgeon said don't cough and quickly out his finger back on the Hickman site. Maddy just kept getting worse and saying she couldn't breathe and felt funny. Things moved pretty fast from there, they hooked her back up to blood pressure and O2 sats. Her pressure was ok but her sats were way down and her heart rate was through the roof. We worked on getting her calm and then the surgeon turned her over on her side, Hickman site side up. After she was able to breathe again and didn't feel like she was going to die she told they doctor that she heard a gurgling sound just before she started feeling funny.

I know it's way too late for long story short but the surgeon said he is pretty sure some air got sucked into her vein, a venous embolism, which will dissipate and be absorbed by her body. But in the mean time she has to continue laying in her left side and they have her head titled down a bit. They have taken a chest X-ray to see if there is any air in her venous system near her heart and we are still waiting on the results. It's about 9:20 PM and like I said at the start I'm sure we are here for the night. I'll add to this post if anything happens or changes. In the mean time here are some photos for your enjoyment and probably not enjoyment.

This is Maddy when we were waiting for the surgeon to come remove her lines.

This is the Hickman line. I know there is nothing in the shot to give perspective. I'm not joking when I say it's about the size of a straw.

And finally a picture I just took of Maddy feeling all crappy and not wanting to go through any of this any more!

11:30 PM, X-ray results

The results for the X-ray came back and all is clear! Maddy is allowed to sit up again and they are weening her off of the O2. They put a heart monitor on her so they can monitor her over night. She is on 3 liters of O2 with just a nasal cannula and her sats are around 96. I'm guessing she will be back on room air in a few hours.

The surgeon came back in after taking care of the emergency he was called away for. He mentioned to me before he left that he was being called away to repair someone's bleeding kidneys. I asked him how the guys kidneys were when he came in and he talked to me like I am a vascular surgeon too. LOL. I think he likes us. Anyway he was very happy to see Maddy sitting up and almost smiling, actually I think she cracked a smile or two while they were chatting. He said that she gave him quite a scare and he is very happy she is feeling better. She said "you were scared!?!" That got laughs all around. He is on call all weekend so he said he would pop in again in the morning if she is still here when he gets to the hospital.

One last picture before I try and get a little sleep. This is Maddy happy to be alive!




Thursday, August 1, 2013

Day 17, Final Chemo

To say that Maddy is worn out would be an understatement! But the final round of pheresis and chemo are finished and we think she is in the home stretch. She was told by the doctor that she could go home at the end of this round of treatment and was hoping to leave today, but alas she forgot he mentioned one more round of IVIG which is not until tomorrow. So, don't want to jinx it but we should get out of here tomorrow.

As for today, Maddy was feeling pretty crappy for most of it. She can't seem to eat at all without feeling like she is going to vomit. Just taking a sip of water had her heaving for a few hours. And she has been getting killer headaches. She has been taking strong pain killers to combat them but I'm sure that is just adding to the problems. She is not sure if all this is from the chemo and all the treatments she has had to endure. The heaving session was hours before she got her final dose of chemo so we can't blame it on today's round. She is worried that she has developed C-diff, which is an intestinal infection, commonly linked to long courses of oral antibiotics. In normal people you know you are getting it because you develop diarrhea. However, both my kids present with the inability to keep anything down instead. We are so backward. This is the intestinal infection Ethan almost died from when he was six and Maddy has had a few times and the doctors never believed her because it didn't present with the common symptoms. So we are always on the look out for this pesky little bugger. It's very easy to treat with an oral medication and usually clears up within a few days. Hopefully they will just go ahead and treat her just in case. I don't think it can hurt at this point!

I guess that's it for now. Hopefully I will be posting a final update for this visit tomorrow from home. Please pray for that. Maddy is tired and wants to be home! Oh, and so do I!

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.