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.