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.

Tough Day

The day after surgery is always a tough one. The doctors were in and out all night long last night. Literally, we went to "bed" a little after 11pm and at 1:30am a surgeon came by to check on Maddy. Lights on, checking incision sites, asking about pain and the like. Then another one showed up at 4am, same deal. And then of course the normal morning routine kicked in at 5am. Here is how that plays out...

5am - nurse comes in to draw morning blood work, try to go back to sleep
5:30am - nurse comes back in with prograf, take under tongue then try to go back to sleep.
6am - patient care tech (PCT) comes in to check vitals, blood pressure, temp, O2 sats, try to get back to sleep.
6:15-6:30 - PCT changes trash and restocks med supplies in room for shift change. Try to sleep through that.
7 am - PCT checks blood sugar, Try to get back to sleep.
7:30 - day nurse comes in for shift change "assessment", which usually includes asking how your pain level is just before poking at the incision sites. Pretend to go back to sleep.
8am - nurse comes back with morning meds, swallow 8 horse pills and ask for more pain meds, TRY TO FALL BACK TO SLEEP!
9am - doctor comes in and wakes her up, asks what's wrong, she says 'nothing, I'm feeling ok' in the hopes of getting out of this crazy house of sleep deprivation. Doctor says, ' then why are you still in bed? You must be sick. Better watch you for a few more days.'

And people think hospitals are for getting rest and recovery. Nope!

Sorry about the little rant. Sometimes I just need to get that out of my system. Back to Maddy's progress.

She was given a pain pump of dilaudid with a button to control the pain last night and that helped with a lot of Maddy's pain issued for the night. This morning she was having a lot of pain in her left shoulder. We thought it was muscle pain from being put in a weird position during her surgery. We were informed by the surgeon later that the pain is from the CO2 they pump into her abdomen for the procedure. They try to remove as much if it as possible but the rest just has to dissipate on it's own. Apparently while it's dissipating it can migrate up into the left shoulder area and cause severe nerve pain. It could take a few days to completely dissipate and the doc said one of the best ways to get it out of your system is to get up and walk. Unfortunately the pain is so bad it's making it impossible for Maddy to be upright very long.

She was hoping to get out of here the day after the surgery but it looks like she will need stronger pain meds to get rid of this nerve pain than she anticipated. That will end up keeping her here longer. It's all in kind of a wait and see scenario at the moment. Maddy has been trying to get off the IV pain meds but that has not worked today. She will allow them to keep the pain meds coming on a regular schedule to stay ahead of the crest today and try to get off the IV meds again tomorrow. The doc said that as long as she is not vomiting and can manage the pain with oral meds he will let her go. We will see what tomorrow holds.

Peace!

Surgery Over

Dr. Goldin came out of the OR at about 12:40 and said everything went well. No need for a larger incision and the procedure went perfectly. I was called back to the recovery room about 40 minutes later. Maddy was wide awake and in pain but she looked good. They got her some more pain meds and she started feeling better quickly. After that she was sitting up in bed drinking ice water in no time flat. The girl is driven! She wants to be out of here as quick as she can. The doctor had mentioned that after the surgery a lot of patients, especially CF patients, find that they can't burp. This causes bloating that can be pretty uncomfortable. To our surprise Maddy was burping right away. Looks like that may not be much of an issue for her. I am hoping it's a sign that she will recover quickly.

We got back up to her room on the 8th floor by about 2:45 and Maddy is resting now. I'm going to go downstairs and eat for the first time today. Hopefully she will get a little rest this afternoon and tonight and be ready to go home tomorrow.

Surgery Information

Maddy went back for the Nissen procedure at about 10:15 this morning. We are praying everything goes well. There are a few issues that can come up because of her previous abdominal surgeries that could complicate things. The procedure is laproscopic so usually they go in through the belly button and then two little punctures on the sides of her abdomen. Because she had the feeding tube before her stomach is attached to her abdominal wall. They have to disconnect that piece of tissue to do the Nissen. Dr. Goldin said he will try his best to do it laproscoprically but there is the possibility they will have to actually open her up. I really hope they don't have to do that because that will double her recovery time. And she really does not want to hang out in the hospital any more.

So now I wait again. This surgery center is much larger than the thoracic surgical waiting room. Lots of people, no offense but I don't want to be around all these people. Especially the people with the hacking TB sounding cough. I am hiding in the farthest corner from humanity I can find. Maybe I will try to watch Netflix on the iPad while I wait. That should get my mind off all of this.

I'll post again after surgery.

Testing the new blog

We are sitting in the doctors office waiting for Maddy's bed to be ready. We got here at 9AM for her regular clinic visit. They accessed Maddy's port without any problems and were able to get her blood work drawn from that. Which made Maddy very happy! She met with the transplant team and did her breathing treatments and PFT's already. She is up to 45% lung function, up three points from last week! They say those numbers will continue to improve over time. Maddy has no problems breathing at all. She even walked five miles they other day while visiting friends and didn't have to stop and catch her breath.

The doctor said the surgery should be quick and easy. That is exactly what we will be praying for! We are going to run downstairs and grab lunch while we wait for a room. I'll post more later.

Oh yeah, I'm testing a new blogger app for my iPad and I hope it works.

Update:
We finally got into a room at around 5:00 and boy are we frustrated! I guess it's better than coming in tomorrow at 5AM, waiting three hours or so to go back for surgery and then having to spend most of the day after her surgery in a recovery room while we wait for a bed. This way she has a room to come back to right after surgery tomorrow. Hopefully it will go well and she will be up and moving quickly afterward. The doctor said as long as she is not vomiting, can walk around and can poop she can go home right away. Non transplant patients who get this surgery usually go home the same day.

That's all for tonight. I'll update again after the surgery!