Monday evening

Hard to believe that this time last week we got "the call" that a donor heart had become available for Rachel.  Now, six days later, she looks amazing!  No more chest tubes as of today and no more IJ line (a line that was in her neck).  She has definitely had a good day today despite the setback from the swallow study, but, we know we will get there in time with that issue.
It seems like it has been a whirlwind since last Monday that we haven't really had the opportunity to stop and think abour the donor family.  Our hearts are grateful to the donor and the family for their gift of life.  We can't imagine the anguish and grief that the family is going through during this difficult time but we hope that they can take comfort that the generous donation helped save the life of our little girl.  Words will never be enough to thank this family.
Also, while we have been blessed with the gift of life, too many times here in the PICU, we see so many families having to deal with heartbreak and sadness, such as today, unfortunately.  Please say a prayer for all of the families that are here in the PICU and for their little ones.  This is a place where miracles happen all the time but unfortunately also very much sadness.

Day 6 with a new heart (afternoon update)

Just got back from the Fluro swallow study and it was decided to give Rachel another few days, maybe a week or so, before she can eat and.or drink anything for now.  Since she had the breathing tube in for a little over two months, the drink and food that they had her take, wasn't going down the vocal cords rahter going into the lungs, which would in turn, cause her to aspirate.  So, they plan to do some exercises with her to strengthened the vocal cords and they will take her back down for another study at a later date.  This isn't totally unexpected and we experienced this after her last surgery five years ago.   

So, for now, the sweet-tea party is on hold.

Monday (Day 6 with a new heart)

Already have taken the "art-line: out of her groin area and they will be taking the I-J line out of her neck at some point between now and 3:00 p.m.  She is scheduled for a swallow study test at or about 3:00 p.m. today to make sure she doesn't swallow drink/food into her lungs.  If she does okay with the swallow study, they will allow her to have small sips of water and/or other clear liquids today.  She isn't quite ready to chug a whole glass of sweet tea (Well, in her mind she is) but she is getting closer.
She has been more sleepy the last two days and we mentioned it to the docs during rounds this morning and the consensus was that she still has some pain meds in her system that is making her sleepy but they are beginning to slowly ween her off of the meds, starting today.
The only other area of concern has been an issue with diarehha but it could be due to some of the antibiotics that she is on.
One particular area that we are happy to report on is that since her transplant, not one time has she experienced any nausea!  We keep asking her about her tummy and whether she feels sick and she says "No."  
There is also a chance that they may take out another chest tube today as well.  If so, that will be three tubes taken out in one day!!
We also ask that everyone continue to pray for little "Caleb" who had a very rough night last night.  This little fella is such a tough little guy but he and his family really need prayer.

Sunday (Day 5 with a new heart)

Pretty good day today, so far.  Rachel sat-up in the chair for about an hour and this time instead of them sliding her from the bed to the stretch-chair, she actually got up on her feet, turned and sat in the chair.  She is going to sit-up once more today probably sometime between 5:30 and 6:30. 
We ask that everyone please keep a special little boy name "Caleb" in your thoughts and prayers.  He has been really sttruggling the last two days.

Saturday (Day 4 with a new heart)

The good news continues.  Yesterday after taking the breathing tube out, they put Rachel on the BiPap mask for several hours and at night and in between, let her breathe with the assistance of a nasal canular.  Well, today, the doctors are so happy with the progress she is making that they are completely taking her off of the BiPap mask and letting her breathe with the assistance of the canular!
She looks great and we can finally hear her speak, although her voice is still raspy from having the breathing tube in for so long.  When asked, she said that she is hungry but the main thing she wants, more than anything, is something to drink.  Before that can happen though, they have to take her down sometime on Monday for a swallow test.  Since its been a while since she has had anything to eat or drink, they want to make sure she doesn't swallow anything into her lungs and risk aspirating.  We have promised her that as soon as they give her the green light to drink and eat as much as she wants, we will have a "Sweet-tea" party for everyone.  We will note the date and time and will ask everyone to hoist a glass of sweet tea at that particular time in honor of Rachel.
Please continue to pray for progress as Rachel recovers and please remember to lift-up her friend, Emily, who has had a little bit of a setback the last couple of days.  Also, pray for two other "heart" families that are waiting for hearts for their little ones and a special prayer request for a little 29-month old little boy name Caleb who really needs a special touch.

FINALLY!!!!! No more breathing tube!!!!

LeAnne, respiratory therapist, taking the Bi-pap mask off!!

LeAnne with the beautiful Rachel minus the breathing tube and the 

Bi-Pap mask. 

From Yesterday, Rachel with Lauren and Josh sitting up in bed.

Second day after Transplant!!

Friday or Day 3 with a new heart

For the first time since mid-June, WE ARE BREATHING TUBE-LESS!!!!! YES!!!!!!!!!!!!!!
She did amazingly well with her first big "breathing test" last evening and this morning and her "blood gases" looked great too so the decision was made and around noon time it was decided to take it out.  They have put her on the BiPaP machine for now (the mask-looking thing) for at least the next few hours.  The goal is to have her gradually move from the BiPaP to the nasal canular.  But at least we get to see that pretty face without all of the tape and that big 'ol breathing tube.
And, to make this day even better, little baby Gracie, who was five months old when she got her new heart, and who had been here before we got here, got discharged today.  What an amazing sight to see the nurses and doctors hugging/high-fiving the family as they were leaving. 
Just a great day.

Thursday afternoon/early evening

Yay!!  Two of the three chest tubes are coming out in a few minutes and the surgeon was happy with the results of her first breathing test results and he may consider taking the breathing tube out tomorrow.  The surgeon continues to be amazed at her overall color and how well she looks.

Thursday or Day 2 with new heart

Quick update.  Rachel continues to progress in her recovery.  They may even take two of the three chest tubes out later today.  She sat-up in the bed for a total of an hour which helped dumped out some of the fluid into the chest tubes.  She is more alert and awake and she hasn't had to have a whole lot of medication for pain.
She did run a slight fever of around 100.4 during the night and she is currently being treated for a bacteria infection; hoever, these are not uncommon after such a major surgery.  Both the surgeon and the team of doctors aren't too worried about the fever/infection at this point and if they aren't worried, we aren't worried.
Yesterday, she wanted to see her incision so Tammy took a picture of it and showed it to her in which Rachel gave a thumbs-up! 
Please continue to pray for the recovery to go as it is suppose to and also keep a little boy name Noah in your prayers as he is waiting for his new heart and also a little 4 1/2 month baby girl.

Wednesday (Day 1 with new heart, YAY!)

Finally getting the chance to provide an update.  Wow, what an incredible past few days to say the least.  We got the call Monday afternoon around 5:00 p.m. to say that they had a matching heart, which meant that everything (blood type, size, antibodies, etc) matched with Rachel.  There was still a chance that the heart could be rejected at the last minute when the surgeon eyed it for the first time, so, we were still a little apprehensive until we got the call saying that the heart was good.  They took her downstairs around 1:45 a.m. and called us sometime between 2:30 and 3:30 a.m. to let us know that the heart was good indeed.  They called us back around 4:00 a.m. to let us know that they were starting the surgery.  It was around 11:30 a.m. or so when they brought her back here to the PICU but it was not until around 1:15 or so before we could get back here to see her.  And, she has never looked so beautiful despite the 8 or 9 medications that they have hooked up to her plus all of the other tubes and wires.  From the time we got back to see her until we finally konked out due to a lack of sleep, the nurses were constantly doing something, whether ir was drawing blood or changing meds or hooking/unhooking stuff up.  They were constantly moving and most of the time there was at least two nurses in here working on her.  So far, the surgeon said she looks "great" and he is just amazed at the "numbers."  They had briefly talked about taking out the breating tube today but they are a little hestitant given that her left lung was collapsed due to how big her old heart was.  However, this morning, they said the lung has begun to open up a little bit on its own and her chest x-ray looks good.  So for now, they will take it nice and slow and not rush into taking the tube out.  She is progressing like they had hoped she would and so far, Praise God, nothing unexpected has come up.
The surgeon did tells us yesterday that the heart came in at just the right time.  He said that he couldn't explain it and we quickly told him that we could, that God delivered it at just the right time.  He said that was true.  He explained that when she was on the table, she went into v-tach, which where her heart rate skyrocketed and the pacemaker did not capture it and it did not fire which meant that they had to shock her with the paddles to get the heart started again.  He said that he thought to himself how fortunate that it happened while she was in the OR waiting to get her new heart and that had it happened a day before, he would have been faced with a major decision of whether to do a procedure to replace the pacemaker lead-wire or consider a mechinal heart for a temporary fix.  He said again that she was meant to get the heart at that time.  Needless to say, we cried.  He also said that the heart was "perfect" and it was meant for Rachel to have.  Needless to say, we cried again.  He did tell us that we can see her old heart and he can show us all of the defects, so we are waiting to see it.  We have to also say that due to the high risk of rejection and/or infection, we can not allow any visitors until further notice.  We even have to wear a mask, gown and gloves while we are here with her.
We are so very grateful and thankful for the donor and his/her family for giving life so that Rachel can now know what its like to have a good healthy heart.  Plus remember this family, whoever and wherever they are, that lost a love one.  And, plesae remember to pray for two other families here in the PICU that are waiting on new hearts for their little ones.  One little boy, age 19 months and one little girl, about 4 months old. 
We continue to thank everyone for the support and prayers during this time and ask that you continue to pray for Rachel during this recovery period; the next several days will be critical.
We also would like to express our gratitude to the doctors and nurses and respiratory therapists here.  What a bunch of sweet, compassionate people.  The coolest thing was yesterday morning when we were outside of the unit standing around waiting to hear something and the nurses coming on for the 7:00 a.m. shift were hugging our necks and/or high-fiving us.  Some of them had heard and some of them hadn't heard.  The ones that hadn't heard were just about in tears with joy of hearing the news.  Most all of the nurses came by at one point during the day to check on her and all of them were just so happy for her and us.
Okay, my fingers hurt from too much typing.  Another post later.

Tuesday 10:35 a.m

Rachel's transplant surgery was successful (Praise God) and we are currently waiting for them to bring her back up to the unit.  She went down around 2:00 a.m. and around 3:30 a.m., they called to let us know that the heart looked good and surgery was a go.  They got started around 4:00 a.m. and the last we heard, they had the heart in, it was beating, and they were waiting to take her off of the by-pass machine.  Haven't talked to the surgeon yet.
And, by the way, sleep is way overrated.  All of us have been up since yesterday morning and were up all night. Sleep?  Who needs it?
Please continue to pray as today and the next several days will be rather tough.

Tuesday morning 4:00 a.m.

Just received word at 4:00 a.m. that the heart looked good (Praise God) and the surgeon was now in the process of opening up the chest cavity.  Going to be a looooooooooooong night/early morning.  Will post with an update later after surgery.

Monday Evening 8/21/11

PRAISE GOD !!!! They have officially excepted the heart. We will update more when we have a time line. Thank you Everyone for the support and prayers!!!!  WE LOVE YOU ALL!!!

Saturday 8/20/2011

Still treating infections with antibiotics, nothing major. Other wise numbers look good. However we continue to have issues with one of the leads on her pacemaker. Which has all of us very jumpy. She is having some anxiety issues so we are trying to work through them as well. I do have to say though she is doing a lot better than I would because they would have to tie my hands, feet, and head to the bed. Otherwise her numbers are stable.  She wanted daddy to stay with her last night so mom went back to apartment and slept in a bed for the first time in 3 months. Which was nice however mom is so use to waking up every two hours when they turn Rachel mom was up every two hours, but is was nice to be in a bed.

We were blessed that she sat up in the chair and went around the unit once. For a total of her being up and out of bed for an hour and a half. She is such a fighter and inspiration to us.

Saturday (08-12-11)

Here is a pic taken two years ago at Camp Boggy Creek.  Rachel, Ms. Monica, a former PICU nurse here at Shands and Emily, who just got her new heart this week and is doing well.  Also pictured is Jori, a heart-transplant recipient from 2008.  She is also the sweet young lady who started the "Hearts Unite for Rachel" facebook page.
Rachel was started on  three antibiotics this week as she had an infection that was in her PICC-line, which had been in for about two months.  They removed the PICC-line yesterday and put in another one.  Also, they have done a sputum-culture this morning as a precaution; nothing has come back on it yet.  Otherwise, number-wise, she seems to be doing pretty good.  Since they started her on antibiotics, they are going to let her rest this weekend and not have her get up and move around the unit.  She has been able to tolerate the feeds that she is getting through the feeding tube relatively well.
Please keep praying that we stay "bored" until a heart comes in.  Also, please continue to pray for Emily as she recovers.  In addition, there are a couple of "heart families" that were here when came in way back in April for Rachel's surgery that were eventually discharged.  Unfortunately, they are back here with their little ones.  Please say a pray for all the families in the PICU, especially, these "heart-families."

Sunday Morning Aug 7th

We are late posting this but this is from last weekend. She has been able to go around the unit in a wheelchair and able to get out of her room. She has gone around at least once a day this past week. Not a whole lot of changes. Still BORED. Which is a good thing. Thank you for your continued prayers.