Third time on the Vent

Yesterday stunk! Maddy spent the day working hard, sitting up in the chair, marching in place and doing breathing exercises and airway clearance. I spent the day at work while Melissa hung out with Maddy. The updates she sent me through the day were pretty good. They were worried toward the afternoon because Maddy couldn't keep her O2 sats up. At first they thought Maddy was just working too hard so they wanted her to rest. By late afternoon they decided she needed some help breathing. They hooked her up to the BiPAP again but that didn't help. By the time I got home a little after 4pm Melissa called saying the doctor was there and kicked her out. I headed right down.

Shortly after I got here the doctor called me and said they were going to have to do some tests to find out what was going on. They wanted to look in her lungs and get an esophageal cardiogram to make sure the problem was not some kind of backup in the blood vessels they repaired or the connections they made to the new lungs. I asked if they were going to need to go back in and he said he was not sure, he wanted a better diagnosis of what's going on first.

So the waiting began again. Over three hours later I called to see if I could get an update and the nurse said the doctors had just left. Both Dr. Haddad and Dr. Rolf had been working on her THE WHOLE TIME. They each thought the other one had gone out to talk to us before they left. Oops, the nurse filled us in and then Dr. Haddad chatted with me by phone soon after.

The esophageal cardiogram came out clear. All the vessels were fine and blood was flowing the right direction. Her heart was fine and all the repairs and new connects were good. So she got a clear bill of health from the Cardiologist. The bronchoscopy showed blood in her lungs again and her alveoli inflamed. After "stepping back" and looking at everything they believe her lungs were having an allergic reaction to one of the anti rejection meds, Cell Cept. They discontinued the Cell Cept and started a drip of a steroid called Solu-Medrol which would repair the inflammation in her alveoli and help clear the Cell Cept out of her system. They had taken a chest X-ray mid afternoon and she looked really "wet", they repeated the X-ray after all that work and putting her back on the vent and it looked great. They also spent a lot of time placing new lines in Maddy. They had removed the arterial line in her neck earlier in the day when they thought she was getting better. It was also 7 days old by then and was in pretty bad shape. They had accessed her port but that is not a robust enough line for everything they need to do while she is on the vent. They also tried to replace the arterial line they took out of her wrist. She has had lines placed in both wrists so far. They were not able to get a line successfully put in her artery at either wrist so they had to go into the femoral artery at her groin on her right leg. Apparently they had a hard time placing that line so Maddy was in quite a bit of pain in her leg when she woke up. Poor kid!

Of course there is no test we can do to definitively say the allergy reaction is for sure what's causing her alveoli to become inflamed and bleed. There have been other cases like this so that helps point them in the right direction but the only way to tell is to dicontinue the Cell Cept, let her rest and her body repair the damage, and try again. This time the resting period will be a little longer. They are slowly weaning her off the vent throughout the day today. They did not need Nitric this time, so that is an improvement already. They tough part this time is they want her to keep the tube in for a couple days after she is off the vent. They don't want to keep ex-tubating and intubating her over and over again. If they keep the tube in they can address the problem immediately if it occurs again. Right now she is back on sedation while she rests and repairs but as soon as she is weaned off the vent she will have to be awake and breathe through the tube without sedation.

So we are back to square one. She will be intubated until Saturday or Sunday. Melissa, Natalie and I are taking turns sitting in the room with her as often as they will let us in. Natalie stayed all night last night, I went home about 2:30am and came back this morning after rush hour traffic. Melissa is on her way now and we will take turns being in the room with her. The way her recovery has progressed so far that is probably going to be our protocol until she leaves. Once she is up and breathing through the tube without sedation I will see if I can get her phone to her so she can communicate with us more easily. I will have to put her under strict orders not to contact people outside the room, she will still need to rest!

Finally, by popular demand I have allowed comments on the blog. I will try to check them and let Maddy know everyones well wishes when she wakes up. Don’t forget to fill in all the fields when leaving your comment. If you don’t put your name we won’t know who left the comment. I promise I am not fishing for your personal information. This is my personal website bought and paid for by me so there is no free service that fishes thorough all my comment entries to spam you and generate revenue for this blog. (No google ad’s either. Hey, maybe I should do google ad’s and try to make a buck! LOL)

As always I will continue updating as time allows.

On the switch over from the old blog host to the new one I have copied the comments and published them below.

Toni Ferraro

I am so glad you have this blog. It is good to be able to find out what is giong on without interrupting you with phones calls.Our prayers are for Maddy to make a full and speedy recovery. She is a brave and tough girl and if anyone can pull this off, it is her. We look forward to seeing her a Wednesday diiner soon. Send her our love and let her know we are thinking of her.

"Aunt" Toni

Thursday, June 16, 2011 - 02:34 PM

Eileen Menendez

We're sending many prayers, good thoughts, and good wishes to Maddy. She certainly is a fighter, and we're all pulling for her! Thanks, Davis, for your very informative blogs; I know many people are following Maddy's progress through them. Please give our love to Maddy.

Friday, June 17, 2011 - 12:36 PM

Kevin

Hi Maddy! From one fellow lung transplant recepient to another, I am impressed with your toughness! You also seem to have a great attitude. Keep it up! It's just a matter of time before you start walking down those hospital hallways and eventually leaving the hospital and taking a deep breath of fresh air with your new beautiful lungs! Stay positive Maddy, every road to recovery has it's share of speed bumps.

God Bless,
Kevin (Tom & Florence's nephew)

Friday, June 17, 2011 - 03:06 PM

Niki

Please let me know if there's any way I can come and see her, or if I can find out what hospital she's at.
& let her know that I love her with all my heart and that I'm so, so proud of her for being so strong. Oh, and if her fishy hasn't died.. lol I'm it's second mom so I will take care of it if theres any one at Madds house to let me in to get it [=
I'm so greatful tht these updates are here, I check every day for new ones. Sometimes more than once a day.

Friday, June 17, 2011 - 04:53 PM

tomflo07@embarqmail.com

Last week at Church we said special prayers for you!!!. Continue your fight and hope to see you at the Ferraro Wednesday dinner!!! Sounds like you are getting very, very, much family support, including overnighters. Hope to meet them in the future. Your dad sure does do outstanding blogs! Almost sounds like he has medical training. Love, Lily's Uncle Tom and Aunt Flo

Friday, June 17, 2011 - 05:19 PM

Ariel and T.J.

Hey its ariel and T.J. we really appreciate you taking the time out of your crazy schedule to let us all know what is going on. We love and miss you Maddy, you are such a strong person we both look up to you. We will visit you as soon as you are well enough. Its things like this that really make you steep back and realize how people including us take life for granted. You are in our prayers everyday T.J. even when to church and had a preacher pray for you and you know he doesn't go to church. Make sure you stay in high spirits we are all here for you and know if anyone can do it its you. Again we love you and miss you

Saturday, June 18, 2011 - 10:22 PM

Second time is the charm

This will be a short update for a very long day. Maddy was weaned off the vent overnight and extubated this morning at 6:30 after Dr. Haddad scoped her. Melissa was here overnight and was the first to see Maddy. Natalie came next and I was here shortly after her. Maddy had been sitting up in bed doing her breathing exercises when I got here, much like the first time they took her off the vent. But this time she looked much better and stayed awake chatting with me. She was in a little pain but in very good spirits. Oh, I forgot to mention that the surgeons came in midmorning and removed Maddy’s last two chest tubes. Now all she has are the little drains.

Maddy and I spent the day chatting and doing her lung exercises. She is allowed to eat a little ice but nothing else until she does her swallow test tomorrow afternoon to make sure when she swallows it is going down into her stomach and not her lungs. She spent most of the day trying to figure out new ways of talking her nurse, Jen, into getting her another cup full of Ice. See the above photo. Maddy has just been in the best of spirits. Anytime someone would come in and tell her they were going to do something to her or ask her to do something for them she would just say OK in this sweet little still kind of weak voice. No matter what they asked! She has just been the most agreeable person in the world. When Jen told her that Dr. Haddad had called and wanted her to move into a chair next to the bed Maddy said OK with the slightest of sighs. Then quickly parlayed her rapid and cheerful move into a sitting position for a new cup of ice. It was like watching a master at work! And I thought I was wrapped.

She moved to the chair with no problem and sat up in it from 4:00 in the afternoon to about 9:00 tonight. The doctor only asked for two hours. She is still in a little pain but the meds they are giving her keeps it in check. By the time the pain starts to affect her it’s time for another dose so they seem to have it just right. Maddy spent 2 solid hours chatting with Jen and I while sitting in her chair and her O2 sats did not drop below 98! At the Shift change Jen came in to say bye to Maddy because she will be off and won’t get back to work before Maddy is moved upstairs. She was crying and Maddy told her she can always come up and visit her on the 8th floor. Jen took care of Maddy for 4 of the 6 days she has been in the ICU. That little girl always makes an impression!

Anyway, it’s 11:20 PM and Maddy has been great all day. She knows it’s still going to be a long recovery but she is grateful she got to sleep through the hardest part of it. I think her new lungs knew how much Maddy had to go through leading up to the transplant so they acted up the first few days so the doctors would let the big giant hole in her chest heal up some while she was under sedation so she wouldn’t have to be awake through the worst of the pain. Good going new lungs, now keep up the good work!

Don’t forget about the photo updates at http://maddyslungtransplant.tumblr.com

More to come...

Off the vent, but not for long

They had Maddy weaned of the vent by Sunday morning. Natalie was there a little before me and Maddy was sitting up doing her breathing exercises. She looked really good and was comfortable. By the time I got there the pain had caught up with her and she was asking for more pain medication. Dr. Rolf said he would give her as much as he could but he can’t give her too much because then she wouldn’t be able to breathe. He told her to take the day off and rest, which he never does. He let us know that her chest X-ray showed more fluid on her lungs, which is not surprising right after they remove the vent, so they needed to spend the day trying to get her to shed that fluid. What happens is the positive pressure of the vent keeps the off the lungs, when you remove that pressure the fluid can move back in. They were using Lasix again and her output was good.

So we set about keeping her calm and comfortable for the day. She was in a lot of pain but resting. After talking to Melissa, who was having trouble getting a sitter, we set up a rotation so someone could be there for Maddy to keep her moral up. Natalie had been there all morning so she went home and I stayed to wait for Melissa. Maddy was able to nap all afternoon, she was having a little trouble keeping her O2 sats up so the put her on a BiPAP machine to help push more air in when she breathed so she didn’t have to work too hard. By 2:45 she was starting to have even more trouble and her pulmonary artery pressure started to go up again. They brought in the ventilator so the could give her the Nitric Oxide again to help dilate the blood vessels in her lungs and get her PAP down and her sats up. By the time they had that machine hooked up she was working so hard you could see she was in a lot of pain and she said that she couldn’t breathe. Even thought her numbers looked good she was short of breath and obviously struggling. They had boosted her O2 and the Nitric and her PAP was still too high. Dr. Rolf was on the phone the whole time this was going on and made the call to intubate her again.

Did I mention that as this all started happening Melissa got there and I was going to head out to eat for the first time that day? It was a little crazy because she went from being just fine and napping to needing to be on the ventilator again within minutes. It all just started collapsing in and one problem seemed to roll right into the next. As I look back at my text updates to family it was about two hours between Maddy’s numbers dropping and the doctor getting there to intubate her. Back to the story...

Tony, Maddy’s nurse let me know they were going to intubate but didn’t want to tell Maddy until Dr. Rolf was there because he didn’t want her to stress any more. While we waited for Dr. Rolf to get there you could see how hard Maddy was working for every breath, I could also hear her lungs rattling with every breath. Melissa and I stood by and kept her calm so she could rest. The doctor got there and let her know what was going on, she seemed upset and relieved at the same time. Melissa and I went to the waiting room hoping this set back was not as terrible as it seemed.

After about 40 minutes we got a call from Tony saying everything went well. He needed to straighten everything up before we could come back into the room but he didn’t want us to worry. Dr. Rolf would be around to talk to us soon. After about another 15 minutes Dr. Rolf came in and said that Maddy sure was not making it easy on us. Yeah, she is not much for taking the easy way through anything. He got the tube in and put her on the vent without any problems. He did a bronchoscope while he was in there and said there was blood in her lungs. He said whats happened is her lungs are spasming, which causes the spike in pulmonary artery pressure this causes the little capillaries in her lungs to weep out blood. The good news is that blood in the lungs is reabsorbed very quickly. He has seen this kind of thing before and it’s not uncommon, it doesn’t happen a lot but it happens. The last one her remembered was about 4 years ago with another young girl with CF. That girl just finished organizing and running the lung clinic’s annual 5K. Maddy will need to be on viagra to help keep those pulmonary pressures down and we will have to watch out for spasms.

Maddy will be on the vent for the next 48 hours so she can recover and heal. They have her sedated again and she slept comfortably last night. This morning she woke up in pain and had to be put under heavier sedation because when she is up and aware she struggles a little against the vent and her sats drop. Hopefully this will be the last setback. Natalie, Melissa and I are taking turns being there so that if anything happens there is always one of us around to comfort her and call the others.

Thats all for now.

72 Hours Later

As I sit down in Starbucks at Tampa General Hospital to write this it has been exactly 72 hours since they took Maddy back for surgery. I did not update yesterday so I have a lot to catch up on during this post.

Thursday night they started the process of weaning her off the ventilator. The first step was to get her off the Nirtic Oxide. By Friday morning they had her down to 5 units , which is the lowest setting on the machine. They tried to remove the Nitric completely but Maddy did not tolerate it. The Nitric is used to dilate the small blood vessels in the the aveoli to help with gas exchange. On 5 unites Maddy was saturating well and everything looked good. When they removed it her sats went down and her pulmonary artery pressure went up. They obviously want those numbers to stay the same so they decided to give her another 24 hours to stop needing the Nitric. The other option is to give her Viagra, which is a blood vessel dilator and see if that does the trick. Dr. Rolf said that after the she should be able to be off the vent in a few hours.

That was the plan, what happened was a little different. This morning they took her off the Nitric and put her on the Viagra. Perfect! Pulmonary Artery pressure within specs and O2 saturation at 100%. No problems there. New kink, she has not pooped since the day before the operation. It’s not unusual for the bowels to stop moving so it’s really not a big deal. They also expect the new anti rejection drugs she is on to cause constipation. Because she has been out so long and not up and moving the vet things moving along she has a bit of a back up. The doc had an X-Ray done to make sure there was no blockage. Everything looks find but a little full. he is worried that if she is backed up her diaphragm won’t have enough room to move so she can get those first really good deep breaths she needs to be off the ventilator. So he has ordered an medicine to get her moving again and has to wait until that is clear before she can remove the vent.

That’s all the boring medical stuff. On to the good stuff. Melissa, Natalie and I have all been taking turns making sure someone is around so that she has a familiar face close by when she wakes up. We each got a few moments of awareness yesterday while hanging around her bed at different times during the day. They still had her pretty well sedated so it was very sleepy acknowledgements of our presence. We have all been told to get home to sleep as much as possible while they are keeping her sedated so that we are rested when she is up and needs us. So we have all been good parents and gone home every night since she got out of the operating room. Natalie was the first here today and Maddy was up and aware soon after she got here. Natalie was able to talk to her and let her know what’s going on so she can stay calm and not worry about all the tubes in her. Maddy has taken it like a trooper! She is very calm and accepting of the intubation tube in her throat.

I spent the morning getting Ethan ready to travel to Gram’s house for the summer. Natalie let me know that they kicked her out for 20 minutes while they took the two big chest tubes out of Maddy. No worries they bumped up the sedation while they did it. By the time I got down her Natalie and Melissa had been visiting for a while. Melissa was waiting for Lee so I went in to say hi and Maddy was awake and trying to communicate. Again she took the inability to talk and the tube in her throat in stride. She had a moment when she needed the intubation tube suctioned out and seemed to panic a little but took it all in stride and seemed very calm after it was cleared. She asked for pen and paper to communicate and we asked the nurse. He seemed a little incredulous but granted our wish by bring a clip board, paper and pen and wished Maddy luck. No luck, little Maddy’s fingers were too weak to write. She then motioned for her phone. I apologized for not bringing it and said they probably wouldn’t let her use it anyway. Can’t see how we would sterilize it. She shrugged it off and pointed to where she needed a scratch. They had her hands restrained so she didn’t pull on the intubation tube when she first wakes up. They nurse said we can remove the restraints while we are with her and she gratefully scratched her nose.

I could go on to recount the remainder of these mundane communications that seem so precious to us but are probably rather boring to anyone reading this. So I will refrain. I will finish by saying that Aunt Lee, who was in town visiting William’s mother who is in University Community hospital, got to come by. I had Melissa talk the nurse into allowing her in to see Maddy through the glass. Maddy waved to Lee with a casual wave as if to say “hey, ignore all these tubes, I’m doing just fine”. And just then she needed her intubation tube sucked out again. She looked uncomfortable but much more calm this time it happened. Like I said she is the strongest kid I know. Or has that always just been implied?

Maddy is sleeping again and I expect she will sleep all night after being up and visiting with us all day long. Hopefully her bowels will move tonight and they will extubate her tomorrow. She will very much like to have that tube out of her throat. I will go back up and hang out until they kick me out for the shift change. Then decide if I’m hanging out all night or heading home. I am guessing they will keep her a little more deeply under again tonight since they can’t take her off the vent until tomorrow.

More to come...

The Next Day

Day 2. It’s hard to believe it’s only been two days, well jut over one really. It feels like days and days but it’s only been 30 hours since we got the call. I went home around 6am and got a few hours sleep then went into work. It was good to be able to catch everyone at work up and get all the hugs and support at the station. Now on to what you really want to hear about.

Maddy is doing OK. However it is a rough road and will continue to be for a while. She got out of surgery at 4:15am and we got to see her at 4:30. That’s when I took the picture above. She had a lot of fluid on her that the doctors wanted to shed using drugs that put her kidneys into overtime, Lasix, so she can move the fluid out. Her kidneys are in really good shape so over the last 8 or 10 hours they have mostly done their job. They are also closely watching out for her to be shedding blood into the her chest cavity, and so far that all looks good as well. Not an abnormal amount of fluid coming from her chest tubes and drains and it’s pink not red, so she is not bleeding. Also a good thing! They have her on very heavy immune suppressants so we are not allowed in to the room with her for the first 24 hours. After that we can go in wearing masks, gowns and gloves. However she won’t be awake for a while yet.

Here is where it gets a little complicated, or as Sue the CF coordinator puts it, “bumpy”. They will keep her “asleep” as long as she is on the ventilator. Her new lungs are being rather slow to wake up so the ventilator will have to keep working longer. The X-ray this morning showed a lot of fluid on her lungs. The Lasix I mentioned earlier should help with that a lot, we won’t know how much until she gets another X-ray tomorrow morning. She has gone down from 100% O2 to 60% on the ventilator so she is showing improvement. But at the moment the ventilator is doing all the work of breathing. She is set at 12 respirations a minute and she is doing about 14. Thats two breaths of her own which is good but not a lot. If I understand the nurse right the longer the ventilator does the job for her the more rest her new lungs are getting which is good for them. They are just taking longer to wake up than we thought they would.

What all this boils down to is she will not be up and moving as soon as we thought. Maddy’s nurse told me to not expect them to wean her off the ventilator until sometime this weekend. As soon as that happens she will be awake so I am making arrangements to be available when that happens. I will hang near or at the hospital today in the hopes of speaking to the doctor when he does the evening rounds. If he indicates the same wake up time I will then go home and sleep. Everyone has said to get as much rest as I can now so that I am available when they bring her out of it because she will be in a lot of pain and will very much need the moral support. So that’s what I’m going to do.

More to come...

Surgery Takes a While

It’s 2:03 in the morning and Maddy has been in surgery for 9 hours. Kim, the transplant coordinator, came out a little while ago to give us an update. Maddy needed to be on the heart lung bypass machine because her CF lungs could not oxygenate her blood during surgery. Here is what happens, they test the patients ability to maintain good O2 saturation by closing off one lung. If it’s good with only the one they will allow that lung to keep working while they take the other one out and replace it with the transplant lung. Then the new lung gets going and they see if that one can keep good saturation while replacing the last one. Maddy’s lungs could not keep her blood oxygenated during the surgery so they put her on the bypass machine for the whole procedure.

The complications involved with this are a little disconcerting but nothing she can’t overcome. First there is the problem of the transplant lungs being “off” for such a ling time. They will obviously take longer to start up again and be able to maintain her O2 levels so they have to ween her off the machine. They sometimes have to give an aerosolized drug called nitric oxide to help the new lungs be able to oxygenate the blood. That is what they are doing for Maddy right now. Second, because they don’t want her blood to clot while on the machine they have to use blood thinners. After being on the machine so long there is the possibility that there will be “weeping” of blood into her chest cavity. So they have to keep an eye on that and may possibly have to go back in to clear any discharge that may result. Hopefully this won’t happen!

After Kim explained all of this to us the surgeon came out to give us an update. He said that she was very sick so he was not surprised that the surgery took so long. He explained about the bypass machine again but with a little less detail than Kim. He also said that Maddy had some kind of problem with her pulmonary artery and they had to do some reconstruction of that area. He was sure that would all be fine. He seemed rather concerned at just how bad her old lungs were. I think the disease was worse than any one expected. Maddy is so strong and always puts up such a great front I think everyone was surprised to see exactly how sick she really was. He said that overall she did very well and he was optimistic about her recovery but that it would be lengthy.

Those are all the facts I know at the moment. From the conversations I have just had with Kim and the surgeon I will hazard a guess that Maddy’s recovery will be harder and longer than anyone thought before. I am sure that Maddy has some hard days ahead of her but I am also sure that she will attack them with a determination like no one else I know!

More to come...

It's Time

After waiting only 11 days on the transplant list Maddy got a call this morning at 10am saying they had a prospective donor and she needed to come right into the hospital. She called me, just as I was starting a day of meetings for work, and I thought she was teasing me. Nope, she was serious! I let everyone know and booked on out of there.

Maddy and I got her O2 together and headed down to TGH trying not to get our hopes too high. We kept saying ‘if it’s not a false alarm this is going to be cool’. We made it to the hospital by 11:30 or so and they had us up in the pre-op area by noon. From there things went rather slowly. They started her IV line and accessed her port, took lots of blood and urine and basically went about getting her ready for the surgery. They told us about another young lady with CF who got her lungs yesterday. She was already sitting up and eating by the time Dr. Rolf told Maddy about her. He said the other young lady was setting the bar high for Maddy and she said she was up to the challenge. Maddy also asked if she could get one of her lungs in a jar to take home with her. He laughed and said no but they could take a picture if we wanted to send a camera in with them. We had not even thought of that so we didn’t have anything to send.

I have been taking lots of pictures and I will continue through the recovery process. You can see them at http://maddyslungtransplant.tumblr.com

At around 12:45 Dr. Rolf told us that there was a doctor on the way to examine the lungs and we should know very soon. If they are good he said she could be going back as soon as 3:00. It took a little longer than that but we eventually got the call saying the lungs were good and she is going to the ER.

She went into surgery at 4:45. Now the other waiting happens. From here the surgery will take between 8 and 10 hours. She will go to ICU and they will keep her sedated until sometime tomorrow. We will not be allowed in until 24 hours later. Sometime tomorrow the doctors will wake her up and assess her breathing. She will still be on the ventilator while they check her lungs and make sure they wake up and have gotten used to their new home. Within about an hour from that time they will have her breathing on her on with only a little help from the ventilator. Then they will remove the tube and she will breathe on her own. This will all be within the timeframe that I am not allowed to be by her side! She will also have two chest tubes in each side, one large and one small, to drain the wound site. The two large tubes will come out within the first week and the two small ones will be in there until just before she gets out. She will be in ICU for about a week then they will move her to a regular room on the pulmonary floor. The usual recovery time is about three weeks. Because Maddy has acid reflux she will need to undergo another procedure that will keep her in an extra week.

I don’t know what else to post in this one. As I write this Maddy is still in surgery. Two and a half hours in she is stable and one lung has been removed. More to come...