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!

On the Mend

It's been a few days since Maddy got out of the hospital and things are going well. Monday was very busy getting all her instructions and meds for discharge. We finally got out of the hospital at around 4:00 in the afternoon. Just in time to get stuck in all the traffic of the clerical employees from the hospital leaving. But we were out! Monday night and Tuesday we spent most of our time getting everything situated for Maddy at the house. We also took Maddy for a hair cut, she was so excited! She is feeling really good. A little pain from being more mobile than she was in the hospital but they gave her some good meds to manage that. She is eating well and looking forward to gaining her weight back.

Today we had a early morning clinic visit. Originally she was just supposed to come in for a blood draw to check all her med levels but that changed after we left the hospital on Monday. There is a virus called CMV that just about everyone in the world has. When you suppress the immune system it can come out of dormancy. This sounds familiar! They already have Maddy on an oral med to counteract it but today they wanted to give her an IV infusion of something stronger to stomp on it. So the quick check in for blood work turned into a full on clinic visit. Everybody loves Maddy's new blue hair though!

We also have the schedule for her Nissen surgery. She will come back for a clinic visit next Thursday the 28th and they will admit her for the surgery to take place on Friday. After surgery they said she gets to go home as soon as her bowls move. So hopefully that means she will be out again on Saturday or Sunday. Then it's a liquid diet for about two weeks and usually on to soft foods for another week then back to a regular diet. It's a good thing we have lots of Scandi shakes and protein powder at home!

That's about it for now. She has a week to be as normal as possible then it's back to the grind. Her spirits are high and she is enjoying her new lungs!

This just in...

Maddy came to work with me after the doctor appointment and everyone was very excited to see her. So excited they wanted to put her on the radio! lol. She recorded an interview with Jamie that he will play today in two parts, once at 3:35 & 3:50 then again at 5:35 and 5:50. I will post the audio from the interview here soon. Listen online at www.spiritfm905.com

Peace!

On the way OUT!

The picture above is actually from the other day when Dr. Haddad took Maddy’s stitches out from the chest tube sites.

The scoop today is that MADDY IS GOING HOME!

They actually began this process on Thursday of last week but we did not want to say anything in case it didn’t happen. Last week the word was that they were going to have a meeting of the minds on Monday morning and make a final decision as to whether or not they were going to do the Nissen surgery early this week and let her go home Friday or get her out earlier. Yesterday Dr. Haddad told Maddy that she would be going home on Monday but we didn’t want to believe him until we actually saw the ball in motion. This morning at 8:10 Ginger the Transplant coordinator came in and confirmed that after 40 days in the hospital Maddy will be going home today.

We still have to meet with the pharmacist to go over all the medications she will be taking at home. He will give us a 30 day supply before we leave. We also have to be seen by Dr. Rolf, which usually happens by 9 or so on weekdays. Lots of work yet to get done before we are cleared to get out of this place but we see the ball rolling!

It will probably be mid to late afternoon before all this stuff is done so we are trying to take it easy and not get too worked up. But we are ready to walk out the door RIGHT NOW! The next leg of the journey is about to begin. Maddy still has a long road of recovery to go through. Now she gets to recover at home.

More to come...

The Long Hall (pun intended)

There has not been a lot of amazing things going on to talk about on the blog. And we have not wanted to jinx any of Maddy's progress so I have been staying away from blogging. However we are beginning to see a little light at the end of the tunnel. Maddy had her bronchoscopie today and everything looked great. We are just waiting to see if they are going to do the Nissen surgery before she goes home and then we should be ready to go. Things have been a little confusing regarding her need for that surgery so it has been a little frustrating to say the least. We are hoping to have a final answer on Monday.

They are still treating her for the viral meningitis. She has four more days of IV antiviral meds left on that course of treatment so that lines up with a possible release date early next week as well. The headache has been gone for the most part since late Tuesday. It still flares up a little but I think the Gabapenten has finally done it's job. Other than that Maddy has been having a good recovery. She has had a few days where she feels like there is never going to be an end to all this but she usually gets through that pretty quick.

They are spending today and tomorrow teaching Maddy all the new things she needs to learn to take care of her self when she goes home. She will be on insulin for s while after she gets out so she is learning how to give herself the shots. She will be tracking and writing down all her vital statistics every day for about a year. She will be doing her own spirometry at home, checking blood pressure, temp, blood sugar, weight and more. These numbers will help her detect early signs of infection or rejection. The earlier it's detected and treated the less likely she will have to be hospitalized. She will have to wear the anti embolism hose for two more months after she gets out. She will also have to wear a mask when she goes out in public for the next 6 to 8 months. We have already started working on ideas for different respirator masks that she can use when so goes out I'm public. That part is going to be kind of fun.

This weekend she will begin filling in her daily log so she can get use to it and show Dr. Rolf on Monday that she is ready for home. Then we wait to see if he wants the Nissen first or come back for it later. Oh yeah, the Nissen procedure is to keep Maddy from refluxing stomach acid or other stomach contents into her new lungs. Because there is no feeling in the new lungs it is easy to reflux into them without the patient even knowing and then they get an infection and don't know why.

Maddy is getting stronger every day. She walks around her room without any help or problems. She goes for multiple walks around the floor every day. We even wheel her downstairs and outside to walk along the river by the hospital. They say lots of food and exercise will be key to her quick recovery.

I think that's about it for now.

Apparently knowing is only half the battle...

Maddy is up and about again. She was supposed to move back to the regular floor right away but had a facial tick so they held her in ICU to do a few more tests. The spinal tap came back positive for the virus that causes chicken pox. I think I posted here that it was the herpes simplex virus, the one that gives you cold sores, that caused the viral meningitis. That information was apparently wrong. They are waiting for one more test to come back that will confirm this but I think we finally have an answer. Over the last few days Maddy has had a terrible headache. Sometimes up to a 10 in pain and she never says pain is a 10! She has been taking some heavy hitter narcotics to control the pain.

The doctors ordered an MRA, which is an MRI but with contrast so they can see the blood vessels in her brain (magnetic resonance angiography). Dr. Reddy, the neurologist, said the MRA is normal. All the blood vessels in her brain are right. He thinks the headache is a long lasting effect from the meningitis. It could last up to a month. He is going to give her a long acting med to help control it. It’s called Gabapentin and will take a few days to start working to alleviate the headache, but it is safer than the narcotics she has been using to control the pain. Especially if the stupid thing is going to last a month! He also said she should be fine to go to the regular floor. We just have to wait on Dr. Rolf to sign off on that, then hope a room becomes available soon. (update; as of 6:30 Saturday evening we have permission to move and are still waiting on a room to be available)

Honestly I have felt very safe with Maddy back in the ICU, but I know she would like the freedom of the regular floor where she is not hooked up to a hundred wires monitoring everything she does. Hopefully she will be able to get the last procedure she needs next week so we can get out of here. She is really tired of being in the hospital!

While I visited with her today, even through the pain of the headache, we were able to converse in a way that I have not been able to converse with her since she went in on June 8th. As she and I were talking it really felt like I have Maddy back again. The debilitating anxiety and fear are no longer bothering her. Not that she isn't anxious or fearful in any way, she still is, she is just facing those anxieties and fears like Maddy again. While she and I spoke about it she said “you mean I have my muchness back?” This is an Alice in Wonderland reference, I believe it sums up the situation pretty nicely. Maddy has found her muchness again and she is indeed going to behead the Jabberwocky!

The continued prayers are very much appreciated. On to the next chapter...

Carryover;

"Aunt" Toni

Maddy, I am glad you are back on track. The roller coaster ride you have been on cannot be easy but you have proven you have remarkable strength and resillience. We all will contunure to pray for you. I just wish I could do more.

Sunday, July 10, 2011 - 12:18 PM

Diagnosis

After at CT scan, 20 hour EEG, MRI, and Spinal all while under sedation and on the ventilator for 41 hours to protect her lungs we finally have a diagnosis. Viral Meningitis. The next uphill battle begins...

After being ex-tubated today Maddy was very upset and easily agitated. No matter how many times I explained the situation she could not understand why she was in ICU again. I now see that this is because of the viral meningitis as well as a side effect of the anti-seizure medication they have her on. She has spent the entire day looking around the room saying how confused she is and crying. She knows who she is, where she is, what year it is and all the other questions you ask a person to make sure they are all there. She just can’t seem to realize that she is not dreaming. Every since she was in the ICU and ex-tubated after the second surgery she has been complaining of dreams that were too real. She would wake up in the middle of a dream right into another one, and then do it again. It was to the point where she would wake up and ask us if this was real life or a dream. We chalked it off to side effects of the medications she was on. Then she started having migraine headaches, they treated them with pain meds and finally immetrex but by July 4th her little brain finally gave a cry for help we could not blame on side effects, seizures. I am guessing the viral meningitis has been effecting her for some time now. The Neurologist asked about her rash, the one that is all over her chest, back and face, and said that could be an indicator of the viral meningitis. The problem is it’s also an indicator of lots of other things, see previous blogs.

Anyway we are very happy to have a diagnosis to point the finger at. The anti viral meds the doctor has Maddy on will help the infection clear up. I am guessing it’s in the final days any way given her symptoms and what I have read about it on the internet. Maddy is afraid to be alone at all any more, and who can blame her, so I have taken the rest of the week off. Natalie, Melissa and I will take turns hanging out with her around the clock. Today she would not let me leave the room even with Natalie or Melissa there. I finally talked her into letting me eat lunch at 2:00 and come to work for a minute to load music at 5:30. Poor kid!

Like I said today she spent the whole day confused and crying. However even in the middle of all the confusion in her viral brain she was still able to get up and move around the room a little. They had her catheterized again and were able to get that taken out. They had placed a new feeding tube in her nose and she was able to eat solid food so she could get that out. She sat up in her recliner chair for three or four hours. Everyone is very happy with the hard work she is doing to make up the ground she lost being intubated again. Dr. Rolf said if she did all that stuff he would move her back up to the regular floor tomorrow. That was a little comfort to her. But she would rather he just let her go home! Poor kiddo.

I don’t know how much I will be able to update while she is recovering from this round. Especially since she won’t let me leave her side. So don’t expect any news unless something else weird happens. Thanks again for all the prayers!

PEACE!

Carryover;

Anonymous

Please don't leave her side. Tell her I love her. Be better soon. :)

Wednesday, July 6, 2011 - 06:33 PM

The Purple Shark

Continuing to think of you all and to send healing, calming thoughts. Glad they finally figured out what was wrong!

Wednesday, July 6, 2011 - 09:36 PM

With love and prayers, Chuck and Jana

Maddy's ability to bounce back from these setbacks are truly awe inspiring. A small army of devout Catholics are fervently praying for her in Northern Virginia. May God's grace fill her with peace, strength and healing!

Thursday, July 7, 2011 - 09:08 PM

ariel-T.J.

please tell maddy we love and miss her and also would it be possible to come see her and our prayers have not stopped i admire you guys all who have to be there i mean she is my friend and its got me going crazy you have been very strong in every way possible.........thats awsome

Saturday, July 9, 2011 - 12:02 AM

The Pridemore's

All of you continue to stay strong. Hang in there Maddy...you've got this! We love you! Bryan, Candi, Jacoby, Jade & Sage

Saturday, July 9, 2011 - 12:47 AM

Crappy July 4th!

This has turned out to be a pretty crapy July 4th. After the Brandon parade this morning I got a call from Melissa saying Maddy had a seizure. I got down to the hospital as quickly as I could. Maddy had been having a great day. She walked around the floor without her walker, played a bunch of games with Melissa and colored. Then she felt like she was getting another migraine headache so the nurse got her a shot of immetrex. Maddy told Melissa she was seeing some flashes in front of her eyes, very common with a migraine I should know, and then before she knew it Maddy was seizing. She had three seizures before they could get her to the ICU. Dr. Rolf got to the hospital within minutes and the neurologist was there very fast too. They took her to ICU ad had to intubate her so she wouldn't aspirate during a seizure. The anti seizure meds finally started working and they knocked her out on propofol again while she is intubated.

Long story short Maddy is back in the ICU and intubated for at least the next 24 hours. They are doing tests to see what caused the seizures. They are treating for infection in the mean time to make sure they cover all the bases. They have done a CT scan and it came back normal. They are monitoring her on an EEG for the next 24 hours. So far the EEG looks ok but the neurologist can see three is something slightly off on the right side. They will do a spinal tap tomorrow and possibly and MRI soon as well. The neurologist said it's most likely some kind of infection so they will keep an eye in her and keep treating until they narrow it down. They want Maddy to rest so we are not going into the room. She always fights the sedation when she hears our voices. Not sure what is up yet but hoping this is just another little setback and she will be back to normal soon. She was supposed to be going home Friday. Not sure that will happen now...