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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Just hanging out

Day two has been good and pretty uneventful. Dr. Haddad came in this morning and told Maddy she only has to be here for 8 doses of the ribavirin so that puts her out of here Saturday morning or afternoon. He has also decided to give her a course of IV steroids while she is here... so there is that. Maddy is not looking forward to the steroid rage. And neither am I.

Dr. Haddad also mentioned that RSV causes the lining of your lungs to die but then it regenerates. That explains the nasty sounding cough. He said its best to get it all coughed out so they have her doing the old fashioned CF airway clearance a few times a day as well. No big deal and easy enough to do.

The upside of the ribavirin is that the following sign is on the door. Which keeps it quiet in the room.

I was able to get some sleep and get back here this morning before they placed her IV. It was a one stick hit so Maddy was very happy about that. She seems to be feeling much better already. She has been sitting up chatting with me all day and does not have a fever any more so that part is all over. Now it's just a matter of her getting past this cough and head congestion. The doc said she would feel much better by the end of the ribavirin.

So that's about it. The next hurdle is to find her something she can eat. As usual the hospital food will not cut it. So the next 2 hour ribavirin treatment I will go shopping at Publix to stock her up for the next few days. Did I mention nobody can be in her room during the 2 hour treatment? Conner will be here this evening to hang out with her so I'll go home again. Then I have to work tomorrow. Oh yeah, she will get released from the hospital right in the middle of a pirate invasion. Wish me luck picking her up at the height of the Gasparilla Parade!

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First infection since the transplant

Here we go again. It's been one year and seven months since Maddy's transplant. She has not had to be in the hospital for an infection yet which is good. The last time she had to spend more than a day at the hospital was for her Nissen (check past blogs for that one). As you can see by the pic below she is none too happy about being here.

Here is what went down. Maddy woke up Monday with a fever and feeling like poo. The doctor called in an RX for tamiflu to get her started until they could get her in to test for RSV and other viruses. Tuesday Maddy had an appointment with her new PHP because Medicaid had changed her plan back in November and she has not been able to get a regular appointment with her transplant doctors since then because the new PHP won't give them an authorization number until she is seen by them. Thankfully the appointment was already scheduled so we were able to get in and out with the referral authorization with minimal fuss. This morning we were into the transplant doctors office at 6am to give them the cultures and find out what she has so they know if they were on the right track with treatment. They sent us home to await the results.

Meanwhile Maddy was struggling along at home with fever, chills, stuffy nose and a really scary sounding cough that reminded me of the bad old days. Fortunately she had no vomiting or other harsh flu like symptoms. We got the call around 10:30 am telling her to pack a bag because they were going to admit her for three or four days. But they didn't tell her the results of the cultures. Fortunately I had voice tracked my shift for today and loaded music for next week already so I had the ability to take the day off to get her checked into the hospital. Then we waited for them to have a bed available. And waited. And waited. Finally they called at 7pm! Blah, another late night check in.

We just found out the diagnosis is RSV. The docs want to treat with an inhaled anti-viral med, which Maddy has been on before. It's a very powerful drug, they don't let anyone stay in the room when they give it and we can't come back in for 30 minutes or so after. They are also going to reduce her immune suppression so her body can fight the virus a little better. Which has me scared because I don't want her to start rejecting her lungs. But I won't think about that. I'm sure they will take great care of her and she will come out of this just fine.

So far Maddy is pretty chill in the room. No orders for IV yet and they didn't even schedule blood work for the morning so she may get a little break right at the beginning. Which would be nice because her anxiety is a little high at the moment. As I mentioned she does not want to have anything to do with hospitals any more. ;-)

 

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One Year Later

I can't believe a year has passed since we got the call! Tomorrow marks the 1st anniversary of Maddy's transplant and things could not be any better. Some of the milestones Maddy has achieved include...

• Just under 70lbs when she was released from the hospital after the transplant, now she is 107lbs! 
• Lung function before transplant was 12% now she is in the upper 70's and still climbing. 
• Couldn't walk from the car into the Mall without stopping for breath, much less go shopping, now she walks everywhere and even rides her bike frequently. 
• Had to quit High School because she was too sick to go to class. Maddy got her GED, passed without any studying the first time, and is applying for cosmetology school in the fall. 
• Got her medi-port removed because she has not needed to be admitted to the hospital for lung infections since before the transplant.
• No rejection episodes! 

I'm sure there are more we could list but I think you get the idea. Maddy has a life again! She has adjusted to the new medication regiment to maintain her transplant better than anyone thought she would, and we all knew she would be great at it anyway. It has been a crazy year and there have been plenty of hard times for her during her recovery. But she continues to approach every hurdle with a positive attitude and a desire to have her life back that keeps her going strong. Doctor visits use to be dreadful events that would make her very upset. Now they are celebrations! I can't even describe how much better everything is. 

I am so happy that Maddy has come through this so strong, healthy and happy! Thanks for all the support and for the continued prayers. I look forward to next year even more! 

Bronchoscopie

It's that time again, time to check and make sure everything is going well in Maddy's new lungs. She has been doing very well these last few months. Her lungs are getting stronger every day. She was able to go to Universal Studios for Rock the Universe with ma last weekend and she had a blast. Last year she tried to go but could not get wrong the park because she couldn't breathe. This year she practically ran around both parks and road every coaster in sight!

Today we got to TGH at 6am for her next bronchoscopie, it's 8 now and we are all checked in and waiting. They will be looking for signs of rejection and doing little biopsy checks to make sure all the tissue is still healthy. If everything looks good they said they can finally cut back on her prednisone. Which will be a big relief because it puts her on edge and makes her mad at everyone all the time.

Not much else going on, Maddy's tummy is still giving her problems so her weight is not going up as fast as she would like. But it is going up, she is up about 4 pounds since her last visit three weeks ago. Hopefully they will be able to get things dialed in a little better for her soon.

I'll try to update this post next week when we get the results of today's biopsies.

Day Five

The picture above pretty much sums up Saturday and Sunday. Maddy fought the shoulder pain all weekend long. They continued to use narcotics to keep her pain to a minimum on Sunday. They started her on Ultram every six hours and left her the pump with hydromorophean that she could use every 20 minutes if she needed more relief. She spent a lot of yesterday trying to stay out of bed so she didn't loose any of the new lung function she has been fighting so hard to get. They did a chest x-ray and said everything looked great. The PFT's she does on the little hand held spiriometry machine are still up pretty high. They are only a little lower than when she was at home but that is probably because the pain keeps her from giving as much effort. Overall I think her new lungs have been great through this whole process.

Last night just before bed they took her off the pain pump and just kept the Ultram and Norco by mouth on a regular schedule. That was able to manage the pain without any issues for Maddy. The only problem she had after that is the narcotics have stopped her bowels from moving. And of course they want to make sure everything is moving in the right direction. They already have her on a regiment of Senokot, Colace, and Miralax to keep her moving but she needed a little extra boost. Instead of giving it to her yesterday, while she was up anyway, they gave it to her at 9:00 last night! Remember that little rant the other day about trying to sleep in the hospital. Yeah, that was easy compared to last night. The poor girl was up every other hour having to go to the bathroom. They were staggering the Ultram and Norco to keep the pain at bay so the nurse was in the room every other hour to give her a pill as well. You think those two things would sync up? Nope. We were up every hour to hour and a half last night!

The good news is that will be our last night in the hospital! Maddy's pain is under control and getting easier to manage every day. Her bowels have moved and she is able to drink and "eat" without any issues. The surgeon who did the transplant came by this morning and said he would like to get a CT scan of the area where he repaired the vein before she goes home. So we are stuck here until that happens. Everything else is just about ready to go. Dr. Haddad has already written her discharge orders, we are waiting for the Dr. Goldin's group to come by and write theirs, then a quick chest CT and we are heading home! Hopefully all this happens before noon today.

Thanks again for all the prayers. After this all Maddy has to do is show up for clinic every week and try to keep from catching any bugs! And of course get stronger and healthier every day. One day at a time.