Lots of Room

It’s about time! Maddy has been steadily improving over the last few days. She is trusting her new lungs more and more every day. The anxiety is also getting lower, especially now that she is out of ICU. Yesterday the doctors cleared her to go to the regular floor. She was so excited! She and Melissa packed all her belongings and prepped her to move right away. Then proceeded to wait all day and night for a bed to become available.

I had to get back to work yesterday so I was not able to get to the hospital until after 5:00. It was good to be on the air again after being away for so long. There is also a lit to be done to get ready for the upcoming July 4th weekend so I will be back into it full swing all week. I hung out last night until 12:30 hoping I would be able to help Maddy get settled into her new room. But alas they didn’t move her until 4:00AM. Go figure. She did manage to get a few hours sleep and then was able to nap again after they transported her up to the floor. The only problem after that was she developed her first migraine headache. She said she woke up with such pain in her head that she was vomiting. Poor thing. Dr. Haddad came in just as she was waking up to this and crying and asked her what was wrong, she should be happy because she was out of the ICU. Maddy explained about the migraine and he made sure the nurse got her some good pain management. By the time Natalie got here it was subsiding and Maddy was able to get on with her day.

Other than that there is not a lot to report. Just little baby steps toward recovery and restoring her strength. She is working hard at her physical therapy. She did 20 minutes on the little stationary bike the set up on the floor in front of her chair. She wanted to do more but the therapist made her pace herself. She is also using her inhalation spirometer all the time. She is all the way up to 750ml, the first time she tried it she could barely get past the 250ml line. There is still a long way to go to the 2500ml line but she can see the progress and thats important! They also brought her her very own Pulmonary Function Machine. I’m not sure how it works yet but she will be using it every day and charting her progress. She will have to keep the chart even at home after she gets out and do it every day. If her numbers go down she is supposed to call the doctor right away. They will not be messing around for the first year!

All the exercise tires her out but she is still in very good spirits. She is having a little reaction in her right foot tonight so they gave her benadryl soon after I got here tonight. She is out like a light. I told her I would stick around for a bot after she slept but would leave early tonight and let her rest. Besides I have to be at work early tomorrow to meet with a record label rep.

I probably will not blog too frequently any longer. Maddy has her phone and she will have her computer again soon. She will be posting on her own again soon so keep checking her facebook. She will also be calling or texting her friends when she is ready for visitors. As you can see in the picture her room is huge so feel free to send gifts and balloons.

Peace!

Carryover

Joy

Yay! Great news :)

Tuesday, June 28, 2011 - 07:53 PM

Anonymous

I am happy for you Davis and Maddy! Keep working hard on that bike or treadmill whatever they allow you to do. What a great Father's day gift to have your baby girl on the mend. June 2011 will be one to remember! "God is good, all the time..." In Christ, Judy A.

Tuesday, June 28, 2011 - 08:19 PM

tom and flo

sounds like the prayers are bei9ng answered!!! Maddy, sounds like you have so much support from family!!! Are you able to eat ice cream to celebrate your new room? All our love. Tom and Flo

Tuesday, June 28, 2011 - 09:54 PM

Aunt Libby

So glad to hear Maddy is out of ICU. Sounds like she's ready to take control now.

Tuesday, June 28, 2011 - 10:07 PM

Stephanie

So, so HAPPY!!! I knew those lungs would come around! Well, I hoped... Fervently.

Wednesday, June 29, 2011 - 12:02 AM

Aunt Toni

Maddy, is that a smile I see on that pretty face!! You go girl!

Wednesday, June 29, 2011 - 09:37 AM

Jenn, rn

I'm sorry I didn't get to say goodbye to you and natalie but I'll always be thinking of your family. What a great gift you've received and to a great girl. Swing by the icu before you go home!

Wednesday, June 29, 2011 - 06:57 PM

nancy lail

Great news! Good days will turn into good weeks, months and years!
Nancy

Wednesday, June 29, 2011 - 08:51 PM

Judy Jones

Glad to hear you are out of ICU. Life will be a lot easier for you and your family/friends now. Keep those pedals moving :)

Judy Jones, Kevin's (K.C.) Mom

Wednesday, June 29, 2011 - 09:04 PM

Susan Russo

Great news! I hope Maddy continues with her progress. God Bless!

Wednesday, July 6, 2011 - 04:39 PM

Asleep At Last

It has been a crazy ride. The last two days has felt like a week. Maddy was finally ex-tubated on June 23rd at around 1:00 in the afternoon. I had spent the entire night with her from the 22nd to the morning of the 23rd and was not able to sleep because of a group in the waiting room watching international soccer! I was able to be there in the morning when Dr. Rolf came by and discussed the plans for that day with Maddy. She was very insistent, through her pantomime, about getting the tube out that day. Dr. Rolf understood exactly what she wanted. He had her blow through her tube and watched the numbers on the vent screen. Told her everything looked good, her chest X-ray was clear and her numbers looked good. He wanted her to get her next plasma pheresis before lowering the ventilator one more notch and testing her again. If all went well she would have it out. She was very happy with that answer. So happy she gave him a hard time about nicking one of the IV lines she had in her neck the day before when he was putting the new lines in for the plasmapheresis. The line started leaking meds, not any blood, and freaked Maddy out for a little while the day before. he got all puffy and called BS about the whole thing. Then told the nurse never mind, leave her hooked up to that thing forever! LOL, Dr. Rolf is our kind of guy and has exactly the same sense of humor as we do. It was great seeing Maddy laughing over the vent. I went home after they started her plasmapheresis around 10AM and told Natalie to call if anything went wrong otherwise text and don’t expect an answer because I was going to be sleeping!

I got a text Around 1:00 with a picture of Maddy and Natalie, no vent tube and two thumbs up. However, as I mentioned in my last blog it seems like every time the girl gets to take a step forward she has to take two steps back. She and Natalie had a good day but apparently lurking underneath Maddy’s happiness about getting off the vent was a bunch of built up anxiety, about everything and nothing. By the time I got there at 8:45 that night Maddy was in a full panic attack. I got two calls from the nurse on duty and a call from Natalie as I was heading down to the hospital. Poor Maddy, all hopped up on narcotics for days on end and huge amounts of steroids had finally cracked. Let me say that I have not experienced a full panic attack and I hope I never have to endure one. I have been on a moderate course of steroids and I can say from that experience that they put your teeth on edge. Everything got on my nerves for no reason and anything could just set me off on a rampage. I have experience with people on prednisone so I expected these side effects. I warned everyone in the family and I hid in my room. A LOT. Poor Maddy had no where to go and literally hundreds of nagging little things going on to and around her. By the night of the 23rd she was so tired of it all and so worked up there was nothing to do but help her poor little body ride it out. I did not pretend to know what she was going through and neither did her nurse. Her nurse that evening kept trying to encourage Maddy and told her many times how strong she was and that she could not imagine going through what Maddy was going through. We had the nurse call the doctor and try to get Maddy some anxiety medicine. Dr. Rolf ordered her Xanax. That helped take the edge off just enough for Maddy to get about 30 minutes sleep.

In an attempt to shorten this long blog entry I will simply say that Maddy spent the next 36 hours in a full anxiety / panic attack. I stayed up with her all night from the 23rd to the 24th. Then Natalie took over around 10AM. Maddy had calmed down by then and was getting a little rest under the influence of benadryl while getting her plasmapheresis. Just before I left she told me that she thought the vibrating the plasmapheresis did had set off her anxiety the day before. I said I was glad she was taking it better that morning. I should have known better. I had to go to work and Natalie was up again that day, when I checked in she said that Maddy was still having high anxiety and panicky. She got the nurse to contact the Psychiatrist. Dr. Mendoza, who is in charge of all the transplant patients. He ordered a long acting anti-anxiety medication on top of the Xanax and promised Maddy that she was doing just fine and the feelings she had were normal. That didn’t help much. I thought for sure that by that evening, after pretty much being up for 24 hours that Maddy would relax and sleep. Melissa was up next for the night shift and I was wrong. Maddy was up all night again. Lots of anxiety and panic over nothing she could put her finger on. Everything bothered her and nothing felt right. I was back at the hospital again this morning at 8:30 and by then Maddy seemed to finally be calming down. As the day progressed Maddy was able to get more and more composure. As I sat with her all day I just prayed and prayed that the worst was past.

By the time I swapped with Natalie at 5PM this evening Maddy was back to her old self, mostly. I could still see that she was on the edge. She was definitely very tired. Yesterday through all her anxiety they continued her tests and removing tubes. She passed her swallow test and was allowed to get real food. She was able to get out of bed and to the potty chair so they removed the catheter. They also removed the feeding tube from her nose. With less tethers and a little more freedom of movement along with the meds and tiredness she was finally able to get past the anxiety. She and I had a very good day. I spent all day being her servant and making sure she had everything she needed. I read her favorite childhood story, Winnie The Pooh, and we had some great conversations. We talked a lot about the things that were bothering her and I think she was able to get most of it out. I’m pretty sure the perspective helped but could tell that she was still a little foggy with the side effects of all the medications coursing through her little body. I’m writing this at about 10:30. As of 9:30 Maddy told Natalie she could go home for the night and then she went to sleep. Natalie told Maddy she would stick around tonight just in case but that she would leave her alone to rest. Hopefully she will not be needed but I’m glad she will be available if Maddy wakes up and needs a hand to hold.

As far as Maddy’s lungs are concerned things are looking very good so far. Honestly I am still a little hesitant to say that everything is fine. Obviously from the above it is not. But her numbers are good. She is down to 2 liters of O2 an hour through her nose, Which is almost nothing. Her lungs are expanding and she is able to blow up to 500 on the inhalation spirometer. She is able to cough up little plugs of mucus, which I’m told is very impressive because nobody knows how to cough with new lungs right away, and they have turned from bright red to light brown streaks. That means that her lungs are not bleeding and are sloughing off the old material and blood so she can get rid of it. The doctors will continue to go in through bronchoscopes to clean that stuff out for a few months. Her O2 saturation was continually at 99 to 100% all day long. She didn’t even desaturate when she coughed or worked her inhalation spirometer. The only little thing of concern is that she still has a lot of fluid on her. Her hands, especially her left, and her feet and legs are still very puffy. The doctor said her x-ray is looking a little wet. He gave her more lasix today to help her pee it all off. But of course she is no longer catheterized so she has to get up to pee, but that is good for her. I am surprised how strong she is. With that said she is still VERY weak, being in bed for almost 20 days will do that to you. But she does all her physical therapy without complaint and even does stuff, like leg lifts, when they are not asking her too. She really wants to get well and get moving!

I think that’s all. The baby steps continue. We await the next hurdle in her recovery with great anticipation, even some anxiety (LOL). But know all the prayers for Maddy are pulling her through!

Peace...

Comment Transfer;

Stephanie

Baby steps are steps nonetheless... I am right there with you hoping and praying that she is on the upswing now!

Saturday, June 25, 2011 - 11:29 PM

Stephanie

First!

And Second, too!

;-)

Saturday, June 25, 2011 - 11:31 PM

Ariel an T.J.

awsome to hear that she is taking steps for the good you have all of us praying for you. Please let me know when we can vistit i know it will still be awhile but we want to see her as soon as we can tell her we love her and pray everyday for her and your family much love T.j. and Ariel

Sunday, June 26, 2011 - 02:16 AM

"Aunt" Toni

Wow,what a trying journey she is taking. It proves she has a strong will to live and she will get through this. With all of the support from her dad,her two mothers, friends, family, and even people that don't know her that well, she has the support and prayers that will make her get through this. Hang in there Maddy! It will get better.

Sunday, June 26, 2011 - 10:21 AM

Lee

Davis, thank you for this update. My friends in NC have been specifically praying for Madelyne about fear. They told me this in an email a day or so before you mentioned the anxiety. It is a reminder for all of us to give her to God and to not become fearful ourselves. God has not given us a spirit of fear.... I am so proud of her. She is doing things for herself to get better. She will continue to recover this way. She has had a lot of practice coughing in her lifetime and I am glad it has helped with her new lungs. Praying for her and her parents as you continue this journey. Especially praying for no fear. Love to you all.

Sunday, June 26, 2011 - 10:21 AM

Kevin Jones

That's great to hear that she is awake and talking. I pray the worst is behind her and things start going smoother for her. It is also good to hear her new lungs are getting better. The docs are right when they say its tough to cough stuff up that soon after transplant. It's VERY tough, good job Maddie, keep it up! Thanks for the updates Davis, I hope the next update has Maddie doing even better!

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

Sunday, June 26, 2011 - 12:09 PM

Purple Shark

No tube! And EATING!!!! And peeing! I am so very, very thrilled and happy to read all this. Really, I started crying reading this post. Thank you for spreading such great news. I'm glad you got to go home to rest and I'm glad Maddy is finally getting some rest, too. Yes, she still has a hard road ahead, but I am very confident that she'll be climbing mountains next week. All right, maybe next year. If she wants to, that is.

Sunday, June 26, 2011 - 03:20 PM

Judy Jones

I said an extra prayer for you. HE must have been hearing a lot of prayers being said for a very special young lady. I feel your little steps will soon become big ones.
Judy Jones (Kevin - K.C.'s Mom)

Sunday, June 26, 2011 - 05:31 PM

Bob Meixner

Beginning to understand what 'cautiously optimistic' means. Liking the good news better than the no news so far. What a trooper that girl is...and you and Melissa and Natalie for sticking by her side through it all. I know from first hand experience how formidable she can be when she's in a 'mood'.

Sunday, June 26, 2011 - 05:40 PM

Nancy Lail

Still praying. I know the baby steps will turn into big steps and recovery.
with love,
nancy

Sunday, June 26, 2011 - 10:52 PM

Niki

Dear Madds,
I miss you so much, and I love you more than anything in the world. You're so strong and I'm so proud of you and I can't wait until you're all better and out of there so I can see you and give you a hug and tell you that I love you and I promise once you're home things will be different and no matter how busy I am, I'm gonna make Maddie time a priority. Get better soon sweety, I'm rooting for you and praying for you <3
Love, Niki

Sunday, June 26, 2011 - 11:46 PM

Eileen Menendez

We're so glad to hear that Maddy is taking some positive steps toward her healing, and we're all still praying and wishing good thoughts for her speedy recovery. Maddy you are awesome--keep up the good work! And Davis, get some well-deserved rest.

Eileen

Monday, June 27, 2011 - 11:33 AM

Susan Russo

I was very happy to hear this news. Thanks for the constant updates. Keep up the good work Maddy, and keep fighting to get better! You are in my thoughts and prayers! God has truly been by your side...we can do nothing without Him. :-)

Monday, June 27, 2011 - 02:22 PM

Jenn, rn

I was SO happy to see you today! You looked fabulous mads and I'm super proud of you. You are the most positive girls I know and I think dr. rolfe should make you a lung transplant spokesperson! You could bring great encouragement to others. You're amazing and I'm honored to have had the privilege of caring for you. Best wishes always tough girl.ch
Xoxo

Monday, June 27, 2011 - 08:18 PM

Very Slow Recovery

I know I promised that no news would be good news. But sometimes no news means there is just too much crap going on to be able to blog it. I am typing this one on my iPhone and will probably be too tired to edit it so please forgive it’s brevity and possible typoes or incorrect word usage. The baby steps Maddy keeps making toward recovery keep being shortened by new setbacks. The easiest way to get it all "on paper" is just to list them.

Still on vent because...

1. Lungs were too wet

2. Breathing too shallow

3. Want to be sure they won't have to intubate again

4. Who knows why else, it's always 'aiming for tomorrow'

If she can't get off the vent by this weekend they will have to put in a tracheotomy to avoid permanent damage to her vocal chords.

Culturing CDiff. This is an intestinal bug that people get when they are on heavy doses of antibiotics. See past blog entries on both kids for more info about this stupid bug.

Too much fluid all over. Giving multiple courses of lasix to deal with fluid retention.

Now she is showing small signs of rejection. A bad rash on her chest. They found antibodies in her blood so they have ordered Apheresis. They take her blood out, spin it to separate the platelets from her blood. Replace the platelets with new ones that have no antibodies and put it back. It's a lot like dialysis. When they placed the line to start this process they used the placement in her neck where they already have an arterial line. The old line got nicked so they had to access her port again to run her meds through.

Now as I sit with her during the night shift her tummy is nauseous and she keeps retching but can't puke of course because the vent tube is blocking everything. Poor kid just keeps retching and retching.

I really wanted to keep as complete a journal of this whole process as I could but honestly I have run out of energy to do so. Hopefully she will begin improving soon. She is a tough kid but having a VERY rough time of it.

More to come...

Transferred Comments:

tom and flo

Said extra prayers last Sunday. We can tell the toll it is taking on you, Davis. Will add some prayers for you. Do not know how I could handle it with the slow recovery since the last surgery. All of our love to both of you. Tom and Flo

Thursday, June 23, 2011 - 09:16 AM

Nancy Lail

Blogging at a time like this must be awfully tedious but please know that it is a gift to the rest of us - thank you. Still praying.
Nancy

Thursday, June 23, 2011 - 09:41 AM

Josh and Lori

Hey Davis Lori and I are praying for you both. Thanks for keeping us updated. I know how hard it must be. Stay strong and perservere. Gods hands are wrapped around you both. God Bless, Josh and Lori

Thursday, June 23, 2011 - 12:18 PM

Judy Jones

I know Maddy feels the support from everyone around her but there are people that she has never met (like myself) that have her in their thoughts and prayers. I have gotten to know Maddy through the blogs. My prayers are not just for Maddy but her support family too.
Judy Jones - Kevin (K.C.'s) Mom

Thursday, June 23, 2011 - 01:25 PM

T.J. and Ariel

Thank you for the update we have not stoped praying and have faith that God will protect her she is the strongest person i have had the pleasure of knowing and deep down know she is going to beat this thing please tell her we are here everyday with her praying and supporting her as much as we can without being at the hospital but if we were aloud we would be we miss and love her and baby steps are better then no steps

Thursday, June 23, 2011 - 01:37 PM

Michele Menendez

Davis, I think about Maddy & you every day. I admire and respect the courage and faith you both have shown during these difficult times. When adversity hits it is then we find out what we are really made of. Both of you are made of the 'right stuff'. I continue to pray for Maddy’s speedy recovery and your continued strength. Hope to see you all back with us at our Wednesday night family dinners in the near future. Thank you so much for keeping us up to date with this blog.

Sending love, hugs and prayers.

Thursday, June 23, 2011 - 02:19 PM

The Purple Shark

What an ordeal, for all of you, but of course especially Maddy. I hope she's back on the road to recovery with nothing but forward motion from now on. As Nancy said above, your blogging is very much appreciated to all of us who are wishing for the best for you all.

Thursday, June 23, 2011 - 05:44 PM

Linda Smith

Those along the side-lines have heard your story - when strangers are touched by emotion we bind our hearts together and offer prayers hoping to encourage you in the truth that you are not alone - may God gift your mind peace, your body strength and your mind courage beyond your ablities.

Thursday, June 23, 2011 - 07:48 PM

carol taylor

hang tough davis, prayers are for you not to wear yourself out before her recovery really takes off an she needs every last ounce of you + big huggy blanket of God's peace covering you all.

Thursday, June 23, 2011 - 09:24 PM

Niki

Thank you so much for taking the time to write these, especially with so much going on and being so tired.
My prayers are with Madds and your family, and please send her my love and tell her that I think about her every day and I'm rooting for her.

Friday, June 24, 2011 - 01:16 AM

Aunt Toni

Davis we do appreciate the time you take to keep us informed on Maddy's condition. She has so many people pulling for her. We are going to have the biggest and best Wednesday night dinner as soon as she can get here..so let's make it soon! Give her our love and best wishes for a speedy recovery.

Friday, June 24, 2011 - 08:45 AM

Jenn, rn

Hey mads. I'll be back to work mon and tues and can't wait to see you. Hang tough and remember all of life's challenges have some sort of meaning. Even if it's to others around you. You've been dealt a very difficult challenge but many are learning a great deal about life right at this very moment. I'll see you soon sweetheart ! Xoxo

Friday, June 24, 2011 - 10:58 AM

the matos'

hey maddy its alex and alana matos we cheered with you at lutz . we really hope your doing okay and that you get better . we are all praying for you .

Saturday, June 25, 2011 - 12:56 PM

Roller Coaster (Surgery Again)

I guess roller coaster is the best way to describe this journey so far. I can't really remember what my last update to this blog included. I try to cover everything but not repeat. No promises.

Maddy was intubated for the third time on June 15th. The same thing happened as the first time. Her alveoli started swelling and bleeding. Sats went down, pulmonary artery pressure up. They spent the next three days with her on the vent making sure they ruled out all reasons this could be happening. Top on the list of reasons was a backup in blood flow in her lungs and an allergic reaction to Cell Cept. As she recovered on the vent the docs continued checking these other possibilities.

Thursday was a pretty chill day but we were all on pins and needles so no one got much rest or went very far from the hospital. Friday was pretty good too. I got some work done and by the evening we were looking forward to Maddy coming off the vent on Saturday or Sunday. But then the doctors started ordering more tests and did not want to say why. We all figured it was to rule out any other possible reasons for the earlier trouble. Late on Friday they sent Maddy for a CT scan. She was very tired after that so none of us stayed too late. Saturday morning Dr. Faber, the surgeon, came by to let me know that the CT scan came out normal but Maddy had started to have a little blood coming out her left drainage tube. He was watching it carefully and checked her platelet count to see if low clotting factors could be the cause of the bleeding. Her platelets were fine so he said he would just watch it closely. When Melissa got here I went into work.

By early afternoon I got a call from Dr. Faber Saying he was not happy with the radiologists reading of the CT scan. So he tracked him down and they went over it together. He said he was not happy with the look of the blood flow in the vein he had to do the repair on. He believed the blood flow restricted which could cause a backup and high pressures, leading to the problems we see when she comes off the vent. He wanted to go back in and check, and replace the repaired area. He said he would do that on Sunday morning after Maddy had time to digest the nourishment she had been getting through the tube in her nose. He also said they saw some small pulmonary embolisms in her right lung and they wanted to put an IVC filter in to catch any future clots before they get to the lungs. This is a ten minute procedure they do in radiology and they needed me back to sign the consents for the procedures. So I headed back to the hospital.

This all seems to be movement in the right direction. I guess I'm like a surgeon in that I like concrete answers to problems. Find what's broken and go in to fix it. I was not happy they were going to have to go back in, but I was relieved they could point to another possible complication and go in and fix it.

When I got to the hospital the radiologist who was going to do the IVC filter explained everything to me and I signed the papers. Then I went in to hang with Maddy until they took her down. While the nurse, Kelly, was moving all the equipment to Maddy's bed in preparation for transport Maddy started coughing. Kelly suctioned her tube twice and cleared the mucus. Just after she finished that Melissa noticed Maddy's right drainage tube was full of blood. We tried to calmly point it out to Kelly, because Maddy was awake and we didn't want to alarm her. Kelly immediately called Dr. Haddad and he called Dr. Faber. Within minutes there were at least three doctors checking everything and consulting. They decided to get her into the OR right then instead of waiting until sunday morning.

Dr. Haddad pulled me aside and asked if I had any questions. He explained what they believed to be the problem again. Dr. Farber got there soon after and explained it as well. It took about an hour to get the whole surgical team to the hospital on a saturday afternoon and get the OR prepped. Maddy bled out about 400 CC's in the first 15 minutes then it slowed to a minimal amount. All her numbers looked good and she was very comfortable and stable.

After about three hours is surgery Dr. Faber came out to explain everything. He found a stricture in one side of the repaired blood vessel and a clot blocking the other end of the repaired area. He removed it and replaces the repaired section all together. I posted a pic of the diagram he drew us on the tumblr blog. He also checked every other connection they had made during the transplant and he said everything looked good. He said that the problem with the pulmonary vessel can explain the bleeding from her left side. He could not point to any direct reason for the blood that came out that afternoon on the right side. He hoped this problem explains the issues she has when she is taken off the vent. If it does not solve the problem there is nothing surgically that can explain it.

It took another hour to close Maddy back up. They went in through the original incision area they used for the transplant so she is back to square one. We were able to go back and get a quick look at her at around 9:00. She was resting comfortably so we went home. I stayed away as long as I could make myself today because I want her to rest. When I called to check on her this morning Kelly, her nurse again today, told me that Maddy tried to get the night nurse to call me and wish me a happy father’s day at 4am. Such a sweet kid! She was up for a few minutes when I got here but is asleep again and that's good. Dr. Haddad wants to wean her off the vent tonight, scope her early tomorrow morning and ex-tubate her soon after.

So tomorrow we try all over again. We are all excited and nervous at the same time. Praying that this will be the time she can begin her recovery!

Again transferred comments

Lee

I am praying that these loose ends will get her on the road to recovery!

Sunday, June 19, 2011 - 08:36 PM

Nancy Lail

Also praying for a quick and full recovery.
I last saw Madelyn when she was about 4 or 5 years old. You were at your Aunt Jane's in DeLand.
Nancy Lail
(Cousin from the Miller side of your family.)

Sunday, June 19, 2011 - 09:10 PM

Niki Freeman

Can I send Madds get well cards or presents in the mail? [=

Monday, June 20, 2011 - 12:27 AM

Anonymous

we are still praying for you everyday thanks again for taking the time to let us know what's going on.-Ariel an T.J.-

Monday, June 20, 2011 - 01:37 AM

Susan Russo

Hi Davis -

My mother-in-law who is 68 years old with COPD had a blood clot in her lung and was intubated for over 2 weeks recently. I know what you are going through. They tried quite a few times to extubate her, but kept reassuring us that the longer she was intubated, the better the healing process. She had water on her lungs as well. There was mention of either a lung transplant being needed or another surgical procedure where she would have needed to put that machine over her throat in order to speak. Priase God, she didn't need either, especially at her age. Obviously, you don't want Maddy intubated for too long, but her lungs need to heal. My mother-in-law needed speech therapy and rehab as she had trouble walking after the ordeal - very weak. Today (a couple of months later), she is doing much better.

Maddy is a strong, young woman....I pray for a full and speedy recovery.

God Bless you all!!!

Monday, June 20, 2011 - 09:47 AM

"Aunt" Toni

We were anxiously awaiting an update on Maddy's condition. I am glad you had some time to post an update to your blog. We are hoping and praying that the surgery was successful and that Maddy will be on her way now to a full recovery. What a sweet girl to think of her dad on Father's Day after all she has been through. Hang in there Maddy! There are alot of people supporting you and wishing you well.

Monday, June 20, 2011 - 10:04 AM

Jenn schauer, rn

Hi mads! I'm over in orlando following your blog even on vacation. I was bummed to hear about the setbacks. (it's cuz I left and not your nurse right now!) Anyway, it sounds like things have been fixed and you're on your way to yet another recovery! I'm still thinking of you and can't wait to see you when I get back. Keep that awesome attitude of yours and stay positive. Hugs and kisses from me to you.

Tuesday, June 21, 2011 - 10:05 PM

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...