Time to celebrate!!!

Okay, this is one post that we have been waiting for.  Rachel nailed her swallow study yesterday and she has now been cleared to eat and drink anything she wants!  So, this means that she can finally have her sweet tea and drink until she "pukes."  (her words).  We are planning a sweet tea celebration for Thursday (11/17) at 6:30 and are asking that everyone have a glass of sweet tea in honor of Rachel at that time.  Please let us know that you did indeed have a glass of sweet tea for her; it would mean a lot.
We are hopeful that this is the last week of being at the apartment in Shands.  She is scheduled for another biopsy on Wednesday (11/16) to again check to make sure there is no rejection.  She will be admitted to the hospital after the biopsy in order for her to receive one of her meds that has to go through an IV drip over a 24-hour time period and where she has to be hospitalized.  Once the med has run through, and if there are no complications, we anticipate her being discharged on Thursday.  She has a test when she see the pulmonary doctor (lung) on Friday and we are hoping to gather-up all of our stuff and head back home on Saturday!!
Of course she will be making frequent visits to the cardiac-clinic for check-ups and there is a possibility that she may have to receive another med by IV (something other than the med tomorrow) and will have to be hospitalized for that too, but, would be able to return home afterwards.
It's hard to believe that this has been ongoing since late April and now here we are, about a week away from Thanksgiving.  Needless to say, we have a LOT to be thankful for.

Finally.....an update!

Been a long while since our last update but here is the latest.  Rachel had another clinic visit today and heart-function-wise, Dr. Fricker was extremely happy with her progress.  She had had some fluid in her lungs as recently as her last visit, around October 24th, and she had been retaining some fluid within the past couple of days.  However, he said that her lungs sounded better than they did the last time he listened to her and they didn't sound as wet.  He had gone up on her diauretics a little over the last two days which had also helped.
He still wants her to see the pulmonary doctor for some additional tests on her lungs to make sure he isn't overlooking anything.  He did say that because she was on the ventilator for so long, it may take a lot longer for her lungs to heal up than it would for someone who was on the ventilator only a short time.  He also wants a follow-up visit with the ENT doctor so that they can re-do the bronchoscope to re-access her vocal cords.
He did say that she is scheduled for another biopsy on November 16th.  Also, depending on the "numbers" from her blood-work, she may have to be hospitalized overnight in order to receive one of her meds that has to be administered through an IV drip.  He did say that we should be able to leave Gainesville and come back home the next day.  Soooooooooo, looks like we might get to leave Gainesville and have everybody back home altogether again by Thanksgiving.

Monday - 10/24/11

Rachel had another clinic visit today.  Dr. Fricker said that the chest x-ray showed that some fluid is still prevelant in her lungs so he wants to schedule her to see a pulmonary doctot at Shands; he said that heart-function wise, she is doing great.  He did say that the issue with the lungs could be due to how long she had the breathing tube in and that it may just take a little more time for her lungs to fully recover.  He wants to be a little more cautious considering what all she has been through.  He also said that they may have to go up on her diauretics even more as she has shown signs of retaining some fluid.
He also wants a follow-up with the ENT doctor that performed the bronchoscope shortly after her heart transplant to see how her vocal-cords are doing.  He said the goal is to be able to get her to take her meds in pill form as opposed to liquid form currently going into her JG tube.  When the ENT doctor did the bronchoscope he did say that he wanted to follow up with her in about six weeks so it should be time for another evaluation.
He was pleased with the fact that she was eating although she needs to be able to eat more in order for the breathing tube to come out.  He said that the more she is able to eat by mouth, the better the Prograf (the one med for anti-rejection) works in her system.
We had thoughts about maybe seeing if we could bring her home after next Monday's clinic visit, however, he was not in agreement with that.  He wants to address the lung issue, get her to be able to take her meds in pill form, see what the ENT doctor has to say, plus, he stills wants to see her once a week and she still has another biopsy scheduled sometime around the middle of the month.  So, his advice was to hang around for another few weeks instead of going all the way home and have to travel back so much, which makes sense.

Wednesday

Hard to believe but yesterday was 8 weeks since Rachel got her new heart.  She had  clinic visit on Monday and her bloodwork looked good and the doctor was pleased that she was eating more.  Since she has scored all zeroes on her first three biopsies, they have decided to wait until the middle of November (tentatively scheduled for 11/16) to do her next biopsy.  She continues to improve with her physical therapy.  While at the gym, they have her walking two five minute intervals on the treadmill and a two-minute cool down walk. 
If everything goes well during her clinic visit on October 31st, and we don't have any setbacks, we may try and bring her back home either later that same day, the 31st, or the next day, November 1st.  It will be her and Tammy's first time home since May 10th.

Saturday

Camden is sick so we didn't get a chance to go to Gainesville to see Rachel.  We don't want to risk her catching whatever it is he has.
Tammy did say however that Rachel has been eating a little bit more yesterday and today and overall she seems like she feels really good.  She has been going back to the gym at Shands this past week for physical theray and has walked on the treadmill five minutes at a time, twice and she starts with a two minute warmup.  Tammy said that the gym usually wears her out so she has had no problem with coming back to the apartment and taking a nap. 
She will have another clinic visit on Monday and we are hoping for another great visit.  And, if we get a good report, maybe be able to come back home in about another week or two.

Tuesday

Rachel's clinic visit went well and this time around, they did not need to re-admit her to the hospital!  The preliminary blood work came back and this time around her Prograf level was dead on where it should be.  Prograf is one of the anti-rejection meds that she is on and the last time she went for her clinic visit it was too high and that, along with her being dehydrated, is what caused her to have to be re-admitted.  Also, her elecrtolytes, which were out of whack last time, looked good this time around.
When she was discharged from the hospital on Friday, she did have some fluid in her lungs.  However, the chest x-ray from yesterday morning looked better than it did on Friday and they told us to make sure that she continues to walk as much as possible as that will help move the fluid on out. 
We have been told that we can leave Gainesville and head back to home if we feel comfortable.  However, we will probably wait for about another two weeks or so before we feel comfortable enough to head back home.  She still has a clinic visit every Monday and will probably have another biopsy in another couple of weeks.  Probably after that time, if she continues to do well, we will head back home.

Friday (or Second discharge day)

Rachel is being discharged, for a second-time, today.  Her biopsy results came back this morning and she scored another big fat zero! 
She does have some fluid buid-up but with them giving her IV Lasix and with us getting her up to walk a lot, they believe that this should be enough to move the fluid on out. 
She continues to be able to eat (she had a whole baked-potato last evening along with pudding) and so far so good.  The loose stools issue is beginning to get better as well.
She has a clinic visit Monday morning and one of the things they will do is another chest x-ray to see whether the fluid issue is clearing up.

Tuesday or First day eating food!!!

That is right!  Rachel got to eat her first bites of real food for the first time since late May!! Her first bite was some banana pudding!  They also let her eat some roast, mashed potatoes with gravy and carrotts.  Hopefully, will post a pic of her taking her first bite.
Also, she is scheduled for her third biopsy early in the morning.  The Transplant Coordinator Nurse is trying to get her discharged back to the apartment sometime tomorrow.

Monday (10/03) update

Rachel has PASSED her swallow-study!!!!!!  However, there is a catch to it.  She can have only "clumpy" type foods--mashed taters, baked taters, mac & cheese, cottage cheese (She likes this stuff), milkshakes, etc.
For liquids, we will have to add some "thickner" to it to make it easier for her to swallow.  So, while she is anxious for a big 'ol glass of sweet tea, not sure if she is going to want her first glass of sweet tea to have the thickner in it or not.  If she does, we will let everyone know when we will have a sweet tea toast!

Friday

Okay, here we go again with the ups and downs.  First, the ups.  They have her blood-work, as far as her electrolytes are concerned, pretty much leveled out.  She looks/acts/feels a lot better now.

Now, the docs seem to think that the nausea/diarrehea issue might have been caused by the feeds that she was put on upon discharge.  She was on something called "Peptamen" while she was in the hospital and she was doing good--no nausea, even when given her meds.  She was still having loose stools but it was beginning to get some better.  It was suggested that we could add some fiber to the feeds to help firm the stools.  However, upon being discharged, they changed her feeds from Peptamen to something called "Jevity 1.5."  The reason being that the Jevity has more calories (of which Rachell really really needs) plus it already contained some added fiber.  Makes sense.  However, she was on the Jevity 1.5 before her heart transplant and her stomach/system couldn't tolerate it.  It was thought though that at the time it was b/c of her poor heart function and not enough blood making it to the gut, thereby causing the nausea.  Well, they swtiched her back to the Jevity 1.5 on the day she was being discharged without seeing whether or not it would have an effect on her stomach/system.  Well, as we found out, it did.  Apparently her stomach/system can't handle the Jevity 1.5, thus, the reason for them switching back to the Peptamen.

Since she has been switched back to the Peptamen, she has been doing well and seems to be tolerating her feeds okay, even at a higher rate.  She did get a little nauseated this morning but that may have been due to one of the meds, which they may either completely do away with or have us add something to it. 

Now, for the down.  One of the docs is really concerned about Rachel's vocal-cord issue and has asked that the swallow-study be done again to see if she has made any improvements with her swallowing.  The doc has said that he isn't comfortable in discharging her from the hospital until the vocal-cord/swallowing issue is taken care of.  He explained that an open airway, which is what is happening in Rachel's case, only presents more of the same problems that brought her back to the hospital.  The thinking is that if she were to get nauseated and got sick, with her airway still opened, she could aspirate into her lungs, thereby causing an infection and she would be right back in the hospital.

So, a swallow-study is supposedly scheduled for sometime today--what time we don't know--and hopefully we will begin to get some answers.  So please pray that Rachel is able to pass her swallow study test, that her vocal cords have improved enough, so that she doesn't have to undergo another surgery/procedure.

Wednesday (Day 2 back-in-prison)

Here is what we have found out.  Rachel's sodium was really high and they have been able to get it back down to a more normal range and she is actually looking and feeling better.

The GI doc did come by and said that he has seen this before in kids who have a G-J tube.  He said that the nausea could be due to all of the meds going in her J tube, which goes directly to the intestines, and suggested that it go in the G-tube, which goes into the stomach.  He said that the liquid meds that she is on are more of a syrup-like texture and some have a sweetness to them which can't be broken down by the intestines.  He also said that perhaps pharmacy could switch her meds from liquid to pill form, crush the pills into powder and put the meds, with some formula in her G-tube.

Sounds like they have a plan and hopefully she will be discharged by the weekend.

Tuesday - back in jail

Well Rachel's pardon from Shands prison didn't last too long.  She is being re-admitted this afternoon.  The doctors called back this morning and said that her blood work is "out of whack."  She is dehydrated due to the diarrehea and with her not being able to tolerate her feeds b/c of the nausea, she isn't getting enough fluids.  Also, her Prograf count is too high and her CellCept count is too low.  These are two meds that she is on for anti-rejection. so the docs will have to try to balance out both of these counts.  The hope is to get her hydrated and get her blood work back in balance.

Monday (Day 5 out-of-jail)

Well, the last post to the blog was the good news that Rachel had busted out of jail after 144 in "Shands Prison."  Discharge day was crazy busy and it started that morning with Rachel going to the gym for physical therapy and then downstairs for a Dexi-scan (bone density test).  When we got back to the room, some members of the UF soccer and softball teams were visiting and they stopped in to say hello to us.  Of course what made this great was that Rachel and Dad were both wearing their FSU shirts!  Shortly after they left, the transplant coordinator came by to give Mom and Dad their "discharge class" in learning how to care for Rachel and how to administer her medications; the class was nearly two hours long.  Not long afterwards, Keith went downstairs to pick-up the prescriptions from the hospital pharmacy and literally came back carrying a box b/c of the amount of meds!  Finally, after learning of all her meds and when and how often to give them, and all of the paperwork that goes along with being discharged, it was time to say good-byes to a special group of people--the PICU nurses, therapists and doctors.  What an emotional time for all!  When you've been around such wonderful people for so many months there is just no way to say good-bye without getting emotional.  Several of the nurses that took care of Rachel during her stay stopped by and posed for pics with Rachel and hugged our necks.  We had to wait a little while for the surgeon to get there before we could leave as he was in Jacksonville doing a procedure but he did make it before we left and we got a couple of great pics with him and Rachel (will post pics later).  Finally, we were heading out of the exit door!! 
We managed to get to the apartment around 6:15 p.m. or so and it definitely felt odd but we managed on our own.  The last few days, Rachel has been nauseated when its time to take her meds (she was discharged on 17 different meds) and still has very loose stools.  Also, she wants to sleep a lot.  However, during her first post-transplant clinic visit today, the doctors begun to adjust some of her meds and adjust her feeds to see if that will help with the nausea and loose stools.
Overall at clinic this morning, the doctor said that heart-function wise, she is doing great and that her new heart is fantastic!  Once they get her meds and feeds straightened out, she should be feeling even better.  She will continue with physical and speech therapy at the hospital Monday through Friday and will have a clinic visit every Monday morning at 9:30 a.m. and her third biopsy probably sometime next week. 
A very special thank-you, again, to all the wonderful nurses, therapists and doctors in the PICU.  What a great bunch of caring people.  We could not have asked for better care than what we got there.  Thank you, thank you, thank you!

Wednesday (Day 29 with new heart)

Rachel is out on Parole!!!  After 144 days!!!!!!  We will be staying in Gainesville for another 6-8 weeks for various appoints ( clinic visit, labs, biopsy, Gym (Rachel's favorite), speech and etc.)  WHOOOO!!!!!! However apartment has no internet so Camden, or G-ma will update as needed. Keith will be headed home Sunday and going back to work and will be updating then. Members of the Lady Gator Soccer and Softball team stopped by to talk this morning but couldn't get them to do the FSU warchant :) Some never learn the error of their ways.

Tuesday (Day 28/4 weeks with a new heart)

Rachel is updating the blog:  I GOT A BIG FAT 0 on my biopsy today!!!!!!!! AIN'T THAT GREAT?

Discharge from the jail will be this week!!!! Not sure if it will be tomorrow, Thursday, or Friday. But all I know is that I will be released from jail VERY VERY SOON!!!!! WOOHOO!!!!!!!!!!!!!!

I'd like to thank everyone for praying for me and my family duriing this time. I really appreciate it.

Thanks also for all the gifts , visits, and calls
By the way, even though I have been in Gatornation, I am still a Seminoles all the way!!!!!!!

Rachel

Monday (Day 27 with a new heart)

Okay, here is what we found out this morning during rounds.  She is scheduled for her second biopsy tomorrow.  Depending on the results, the transplant coordinator has said that she will try everything in her power to discharge us on Wednesday!!  Mom and Dad will have a "discharge class" tomorrow afternoon to teach us how to administer all her meds and her feeds in the GJ tube and all of the other things that we will have to learn.
The transplant coordinator also said that once she is discharged and back at the apartment, she can go to some of the museums in town, to the mall and to the movies and that she will not be strictly confined to the apartment.  Her eyes lit up when the transplant coordinator mentioned the word "discharged" and when she told us that Rachel would also need to "nap" once or twice during the day, Rachel looked at us, smiled and said, "Did you hear that?"  (She is learning to like her naps!).
Now, we are beginning to get excited about the possibility of FINALLY getting out of here.

Sunday (Day 26 with a new heart)

A good weekend.  Yesterday, Rachel walked around the unit four times and sat-up in the chair off and on for several hours at a time.  Her and Daddy watched college football all day long (Daddy had to suffer through watching football, instead, he wanted to watch the Disney channel but Rachel wouldn't let him).  Rachel enjoyed spending most of the day on the computer chatting with her grandma (Keith's monster-in-law) and working on writing a story; Stephen King better watch out.
Today, so far, she has walked around four times and will probably go around another couple of times before the evening is through.  She has sat-up most of the day today and hasn't complained at all about it.
She is still having some diarrhea issues, probably due to the 8,000,0000,000,000 medications she is on, however, we plan to mention this to the docs in the morning during rounds to make sure there is nothing else going on.
Otherwise, she is getting stronger and stronger each day and as each day goes by, she looks more and more better.  She is sooooooooooooo ready to get out of "jail" (her words).
We should out tomorrow whether the biopsy is scheduled for Tuesday and if so, we would get the results sometime Wednesday morning and "maybe breaking out of here" (her words again).

Friday (Day 24 with my new heart)

Keith said to put under these pictures "look at this beautiful face, Rachel not Keith" and Rachel looks at him and says "aint that the truth." 

Thursday (Day 23 with a new heart)

A busy last two days.  Yesterday it was downstairs for the doctors to put in the port and the GJ tube.  This morning, she had a visit to the ENT doctor.  He did a bronchoscope (sure I know how to spell it, I just choose not too) which revealed that her left vocal cord is still paralyzed (which we already knew) but her right vocal cord isn't moving as much as he had anticipated.  He said that he would like to repeat the procedure in about 6-8 weeks to see whether or not it has improved.  He did say that sometimes, given a period of time, the vocal cords can heal on their own, and that is what he is hoping will happen here.
He did say that continued vocalization and swallowing exercises would help build the vocal cords and compared it to someone lifting weights to build muscle; she has to build up the vocal cords.  He had considered a procedure where he could go in and "fatten" up the left vocal cord with an injection but with the right cord not working properly, he is worried that it could effect her breathing so he wants to give it some time before he rushes in to anything.
She is still sore in her abdomen from where they put the GJ tube so she got to skip a trip to the gym today.  She does not usually ask for pain medicine but she did yesterday and after having to move around this morning, she asked for it again.
During rounds this morning, the doctors mentioned about trying to get her down to the cath-lab for her second biopsy on Tuesday of next week.  Depending on the outcome of the biopsy, and with the port and GJ tube in place, we might be discharged next week.
Speaking of being discharged, Rachel's friend, Emily, is being discharged tomorrow.  Her and her mom will stay in town for a period of time as well but at least she will be out of the hospital.  So happy for them.
Also, please continue to pray for Noah and Ella and their parents as they wait to get the call about their new hearts.

Rachel's Birthday

Pictures from Rachel's b-day and a birthday thank you walk around the unit.

Wednesday update

Rachel got back to her room around 12:45 or so and everything went well.  The port and GJ are both in.

Rachel's surgeon just peeped his head in to check in on Rachel and to ask her how she was feeling.  Rachel cut her eyes toward him in a look that had "death to you" written all over it.  The surgeon then asked, "How can such a small little girl strike so much fear into a big bad heart surgeon?"  :-)

We believe that while he is the greatest pediatric heart surgeon in the world, secretly, he is very scared of Rachel.  :-)

Wednesday (Day 22 with a new heart)

Well, we found out yesterday that it would be beneficial for Rachel to have a "port" and a "GJ tube" put in so that she can be discharged, by next week.
The "port" is for access that allows the nurses to draw blood for lab work for when she discharged.  She will have a number of clinics visits/tests over the first year post-transplant and instead of having to stick her with a needle each time, all the nurses need to do is draw blood from the port.  It is more or less like the PICC-line that she has in her arm now that allows them to draw blood but the difference is that the port is under the skin just below the collarbone.  Plus, the risk of infection is much lower with a port than it is by leaving the PICC-line in.

The "GJ" tube is basically a temporary feeding tube inserted into the abdomen area.  Since she has not been cleared as of yet to be able to eat and drink, the GJ tube will allow her to continue to receive feeds while at home.  Also, since she can't take her medications by mouth, the GJ tube will also serve as a way to get her her meds.  We are also waiting for ENT to come up for a possible scope where they will look at her vocal cords to determine whether or not they might be able to do a procedure where they can "fatten" the left vocal cord.  This would allow the left vocal cord to pair up with the right vocal cord thereby creating a seal when she talks and swallows.  This would be a temporary fix we have been told, hopefully.

The doctors have said that she needs another dose of one of her anti-rejection meds tomorrow and she will go down for another biopsy at the beginning of next week.  Depending on the results of the biopsy, they may feel comfortable in discharging us from the hospital, although we would stay in town for a while.

The doctors have said that from a cardiac standpoint, she is doing great.  All of the "numbers" (remember, its all about the numbers) look good, she looks great and feels great.  The main area of concern is still the vocal cord issue (thus the GJ tube) and her mobility (thus the visits to the gym) but other than that, they are very, very pleased.

Finally, thanks to some of the wonderful nurses up here, she had a great birthday (as good as one can have while being in the hospital).  She got gifts from several nurses and balloons, banners and plenty of birthday wishes.  We have a video of her walking and a birthday pic we will post later.

Thanks again to everyone for the continued prayer and support during this time.  We certainly appreciate all of the monetary gifts, cards, phone calls and visits.  You all have blessed us beyond what words can describe.

Tuesday (Day 21 with a new heart)

HAPPY 19TH BIRTHDAY TO OUR AMAZING SWEETHEART!

Some of the nurses here in the PICU have gone all out for Rachel's birthday.  They have put up "Happy Birthday" banners and balloons in her room and a couple of the nurses even got her gifts.  We truly believe that the best nurses in the world work here.  The compassion and love they show to their "kids" is amazing. What a great bunch of nurses here; they are like family.

Waiting on physical therapy to come up here to get her and take her to the gym again today.  They discussed yesterday having her walk on the treadmill today.

We are hoping to post some pics later today.

Monday (Day 20 with a new heart)

Overall, a good weekend.  Plenty of laps around the unit and plenty of chair sitting time as well.

This morning, she got to go down to the sixth floor and do some leg exercises in the physical therapy gym.  Somewhere, we heard the two guys from the old Saturday Night Life skit saying, "We are here to pump.....you up!  She did some leg presses and leg curls.  Shoot, the football players ain't got nothing on her!
Also, she got to go outside and get some (Gator) air and made a visit to the gift shop too!

For the first time today, we actually heard the "H" word (H being home).  She has to have another biopsy, probably sometime the first part of next week and she is finishing up one of the meds (anti-rejection) today and has to finish another one on the 17th.  She has to be hospitalized for these.

There is a slim chance that they may discharge her from the hospital late next week. Maybe.  Of course, we would need to stay in Gainesville for a few weeks.  For the first month or so, she will be scheduled for clinic vists and tests once a week.  Plus, we want to be close by just in case.

Please continue to pray for Noah and Ella as they wait on their hearts and for Rachel's friend, Emily, who got a good biopsy report too.

Thanks for your continued prayers.

Friday afternoon

Swallow-study did not go quite so well.  When given liquids, she showed signs of having it go down into her lungs.  However, she did better when given pudding although it had a tendency to "pool" on top of the airway.  The worry is that when it "pools," that when it mixes with her saliva, it could go into her lungs rather than her vocal cords.  So, for now, the doctor in charge of the swallow study needs to speak with the cardiac team as well as the ENT doctors to see how to proceed.  The doc in charge did say that she could probably eat and drink if they added some "thickener" to it whatever it is she eats/drinks but again the worry would be if it "pools." They did mention that there was a procedure that they could to "fatten" the vocal cords to where they both pull in the same direction (Dad has offered his fat for this procedure!).  That would be a temporary fix until the vocal cords heal. Needless to say, Rachel is a little bummed that she can't full on eat and drink her sweet tea yet.  However, she has been through a lot and it will take time to heal up.

Friday (Day 17 with a new heart)

YES!!!!!!!!!!!!!!!!!!!!!!!!!!!  We scored a big fat 'ol 0 on our first biopsy!!  What a praise report!

Typically, as we understand it, the biopsies are usually done about two weeks apart.  Not sure whether we will actually be in the hospital for the next one or whether we will be discharged by then, but have to come back in.

Next up, is the swallow-study @ 2:00 p.m.  Please continue to pray that she does well on the swallow test so that she can begin to eat and drink.

Thursday (Day 16 with a new heart)

Well we were scheduled for the biopsy cath this morning around 7:30 a.m., however, due to a scheduling conflict, we got bumped back and it was around 1:00 p.m. when they got her in the cath-lab.  We won't find out the results until tomorrow but the cardiologist did say that he didn't see anything unexpected and that everything went well.
They gave her some meds to put her to sleep as opposed to anaesthia have no clue how to spell it and am too lazy to do a spell check) and she has been snoring ever since she got back to the room.  Before going down to the cath-lab, she did take her lap around the unit one-time this morning.
She will go back down sometime tomorrow afternoon for her second swallow study.  So, by tomorrow, we will have the results of her biopsy and her swallow study.
Praying that all goes well with test results.

Wednesday (Day 15 with a new heart)

Well we have already gotten up and walked around the entire unit this morning with another lap or two coming later this afternoon.  Before too long, we will be timing her in the 4.40 and depending on her speed, she may be receiving recruiting offers from some of the major schools!
We found out this morning that her first biopsy is scheduled for tomorrow morning.  We should find out later today whether or nor she will be the first case, if so, she will go down early in the morning, or the second case.  Please pray that she scores a zero, which would indicate no rejection or at the very least, a "1A" or "1B," which would indicate "mild rejection."
We also found out that her second swallow-study test is scheduled for Friday afternoon.  She has been practicing her swallowing and vocalizing techniques so that she can pass her test.  If she passes her test, she will finally be allowed to eat and drink.  She has been adding to her food list everyday.  (The list now includes french fries!)
Overall, the doctors, especially the surgeon, can't get over how well she looks.  Last evening, she laughed with Daddy as they watched "The Andy Griffith Show" and she had a smile on her face most of the evening while sitting in the bed playing on the computer.
We continue to be amazed at the progress she has made and how much better she seems to feel.  Not once since transplant has she felt nauseated, and the fact that she wants to eat, well, its just incredible.

The Trouble Maker

This is her old heart shown to us by Dr. Wallis today. He said it was extremely enlarged that a normal heart should be half this size of this one. Keith said  the texture reminded him of a big pot roast. He was able to point out the defects she was born with and the devices that over the years they inserted such as closures devices to close up the wholes in her heart. Below is the video of him explaining it to us. 

Going Mobile

Quick clip of Rachel walking her second lap of the day around the unit. 

Tuesday (Day 14 with a new heart)

Hard to believe but its been two weeks today since Rachel got her new heart!  Yesterday, she walked around the entire unit, stopping only a couple of times, to catch her breath.  She is still a little unstable on her feet and it has been suggested that she go to the gym starting this week to do exercises to help strengthen her leg muscles.

Also, she is scheduled to go down sometime tomorrow for another swallow study.  Please be praying that she passes this test as this would allow her to begin to start eating and drinking.  She has been working on a "Things I want to drink" and "Things I want to eat" list.

Also, at some point this week, she should go down to the cath-lab for her first post-transplant biopsy.  Haven't heard a specific date as of yet.

And, at some point today, we should finally be able to get a look at her old heart.  One of the transplant docs told us late last week that we should be able to see it today.

Now that the long holiday weekend is over and everyone is back in place, physical therapy should come by more than one time today which means that she should be getting up to walk at least twice today.

Sunday (Day 12 with a new heart)

Did not post yesterday but, so far, a pretty good weekend.  Since its the weekend, not a whole lot going on although physical therapy did come by and Rachel walked further than she has walked yet.  She sat-up in the chair a couple of times for extended periods of time as well.  She even let Daddy stay the night with her, allowing Mom a chance to sleep in a real bed.  Now Daddy knows why Momma is so tired this next morning and its true, you don't sleep when you are in the hospital.
Today, Rachel has already walked, about 3/4 of the way, around the whole unit!  She is still very shaky on her feet, needing someone on both sides of her to steady her, but during her walk today, she did it without stopping one-time!  Simply amazing!
This week looks to be a rather busy week as she will probably go down for her first post-transplant biopsy to determine where she is at on the rejection scale.  Also, they will probably send her down at some point this week for another swallow-study test.  She has been doing some swallowing techniques to help strengthen her vocal cords.
Still waiting word on a new heart for Noah and Ella; please continue to pray for these two little ones.

Friday (Day 10 with a new heart)

Pretty good day so far today.  She sat-up in the chair for about an hour and a half and walked across the hall to visit her friend Emily and then back to her room.  Yesterday, she walked to Emily's room but on the way back she had to sit in the chair and be rolled back about halfway before getting up and walking the rest of the way.  But today, she walked there and back, stopping only to sit and catch her breath for a few minutes before resuming her walk. Excellent exercise day.
It is obvious that her being in the bed, hooked up to the ventilator for two months, has taken a toll on her muscle tone.  She is really shaky on her feet when she walks and has to have both physical therapists helping her when she walks.  The docs believe she would benefit from going to the gym located on the 6th floor to do some leg-strengthening exercises in addition to the walking.
Speech-therapy continues to work with her to try and strengthen her vocal cords so that she can pass her next swallow study test, scheduled for sometime next week.
Also, next week, probably on Tuesday, she will go down to the cath-lab for her post-transplant biopsy.  The ideal score would be a zero (This could be the first time she is allowed to score a zero on a test), which would mean that there is no rejection, however, most transplant patients experience some level of rejection, at least on their first trip for biopsy.  If there is some "mild" rejection, it can be treated by upping some of the steroids that she has been on.
And finally, we were hoping to be able to see her old heart today but just found out that it will probably be Tuesday before we can actually see it.  It has been in pathology since it was removed.  Can't wait to see the little booger that caused her so many problems.
Overall, she looks great, she is smiling occasionally, talking and seems to be in good spirits.  In addition to making a list of "drinks she wants to drink," she also has decided that she wants to eat, in no particular order, "Cocoa Puffs," (She saw a commercial for this), baked potato with butter and salt, nachos, KFC with mash potatoes and a dinner roll.  It is amazing to hear her say that she is hungry (and this time, we believe her!).
And, we have to say, with everything that has gone on this summer with Rachel, and with school starting back, Camden has been completely awesome.  He started school, went for three days, when we got the call about Rachel's heart, missed three days of school while being down here for his sister, but has managed to get all of his school work done and is making great grades so far.  He is pretty awesome.
Please remember to continue to pray for Noah and Ella as they wait for their new hearts and their respective families.  Also, please remember to pray for family who lost a love one, one whose heart now beats in Rachel, during their time of grief.  Hard to believe that it's been 10 days already.

Thursday (Day 9 with new heart) Pictures of gown

Thank You Jennifer!! The nurses and doctors are talking contracting out to have you do this on a regular basis.  This has been a huge hit!!

Thursday (Day 9 with new heart)

Been a few days since we've been able to post an update.  Since the last update, they have moved us from our bigger room at the end of the hall to the smaller room on the other side of the unit since Rachel doesn't have as much equipment hooked up to her.  Currently, the only thing hooked up to her is her PICC-line to administer her meds and to draw blood and her monitor.
She has gotten up out of bed the last two days and has walked from her bed to the door about six or seven steps.  She has also been sitting-up a little more too.  Yesterday, she actually wanted to color and paint a ceiling tile that will eventually be placed in the Pediatric ER.  She seems, overall, to be feeling better each day and she looks GREAT!
Two areas of concern over the last two days has been the results of the swallow study and the need to ramp-up the drugs to suppress her immune system even more.  Yesterday, ENT did a test that showed her left vocal cord was not moving at all, which is not at all, surprising.  Considering that the breathing tube was in for over two months it was bound to cause her problems.  The docs believe that with some rest and exercises, it should improve.  We experienced the same problem after her last surgery five years ago.  So, they aren't allowing her to eat/drink until her vocal cords improve.  Believe it or not, she actually wants to eat!!  I asked her what she wanted to eat, she said she wants "Cocoa Puffs" for breakfast and a baked potato with butter and salt for dinner!
Yesterday, we found out that the latest test showed did show some antibodies B were showing up in her latest blood work so they have to start her on some heavy duty steroids to beat back the antibodies.  Since the new heart is a foreign substance in her body, antibodies would normally try and fight the new heart so that is why they have to totally suppress her immune system to keep this from happening.
And, finally, thanks to Jennifer D, for  the awesome hospital gown.  Rachel has also said that she feels like she is in jail here so Jennifer made her an orange gown with a patch that reads: "R. Smith Property of Shands Prison 042811."  (042811 is the date of her heart surgery when we first came here).
Please remember Noah and Ella as they wait for the new hearts and the Adamyk family as they deal with the loss of their little boy, Caleb.

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.

Sunday morning

Rachel seemed to have a pretty good day yesterday and overall she looked and acted like she felt better.  She had several visitors and even started a craft project for her friend, Emily, who is down the hall waiting on a new heart too.
Things have seem to level off for the past few days and we are back to being "bored."  We hope and pray that this continues until she gets her new heart.  On a good note, they were able to start her feeds back through the feeding tube at a very slow rate and so far she has not had any complications (heaving, nausea) since she started back on the feeds.
She had a pretty good night last night and slept well, which meant that Tammy was able to sleep too.
Praying for another "boring" day today.
Thanks to my sister, niece and her little girl for visiting us yesterday as well as a wonderful couple from our church family.
Also, please remember to keep Rachel's friend, Emily Warren, in your thoughts and prayers too.  She had an off day yesterday and wasn't feeling too good. 

Tuesday update

After rounds this morning, here is the latest.  The doctors are showing concern about the fact that her kidney numbers are up and are closely watching the liver numbers too.  Yesterday, the discussion was that they would hope that the kidney numbers would plateau or level off, however, as of this morning, the numbers were still going up slightly.  Right now they don't know if ihe numbers are up because she hasn't been peeing-out much lately because they went down on the Lasix a few days ago after they thought she might have been to dry.  So now they are going back up on the Lasix to see if that works. 
Just now, the Renal doctors came in to assess her per the request of the cardiac and critical care doctors.  The renal doctor said that the kidney issue could have been caused by the recent arrithymias, which in case the kidneys just have to recover in their own.  If its due to too salt or some other chemical in the blood work or urinalysis, they would have to see about adjusting medications and/or the TPN to correct the issue.  And, if it is cardiac-related, they will have to work with cardiology to maximize the blood flow that is going to the kidneys.  He did say that if he had to guess, he would think that it had something to do with the arrithymia issue because her kidney numbers looked okay before the arrityhimia issue.  So, to recap, please pray that the kidney issue is temporary and can be corrected and not a blood profusion issue.
Also, this morning during rounds, Dr. Fricker (The E.F. Hutton of the group; when he speaks, people listen) did say that she has been listed as a 1a status for quite a while and believes that she should be of the highest priority for the next matching heart. 
We resolved the issue from last evening regarding miscommunication with certain doctors.  During rounds yesterday morning, Tammy overheard one of the critical care doctors talking about Rachel's liver and kidney numbers and the issue with her gut and made it sound as if her body was shutting down, which in turn, caused Tammy to call me all worried.  We spoke with him this morning expressing our frustration with how things are presented and he agreed to not mention anything to us until it is addressed by the whole team.We would like to apologize for our part in the any miscommunication with all the doctors. We truly have the best set of doctors anywhere.

Monday afternoon/evening

Well,we are just about to go postal on some doctors up here in the unit as they have done made Momma mad and you know the old saying, "If Momma ain't happy ain't nobody happy."  During rounds this morning, the critical care doctors made it sound as if the numbers indicated that Rachel's liver and kidney were taking a major hit from her heart failure.  They made it sound that her body was beginning to shut down.  However, when the surgeon came by later on this evening (he was not present during morning rounds) he said that she is stable and maintaining.  He did say that her liver numbers look good but her kidney numbers were elevated.  He said that as long as the kidney numbers plateau out and don't go up dramatically, she should be okay.  He did say that he was concerned about the fact that she hasn't been able to get her feeds through the feeding tube cause she has felt nauseated and having "loose poops."  He said that he has seen this before in other kids waiting on a heart to where their digestive system begins to have problems.  He added that it is probably due to the blood not flowing out enough to her gut.  We did ask him about all of the problems she is encountering:  the digestive system issue, the liver/kidney numbers, etc., and he said that this is not uncommon in children waiting on a heart; that he has seen it before.  He did caution us that they are still very concerned, mainly about her not being able to get enough nutrition.  They did start her on TPN and Lipids to counter her not getting the nutrition through the feeding tube.  TPN contains all of the vitamins and nutrition that she needs and the Lipids is fat but the problem is that its coming through an IV and is not the ideal way to get nutrition into the body; it is not designed for long term use.
Also, early this morning, around 2:00 a.m., she encountered another arrithymia issue causing the pacemaker to go off.
So, please pray more urgently that a heart will come in really quick and in the meantime that she doesn't have anymore arrityhmia issues as that hurts her total heart function even more than what it is.
So to recap:  Pray for a heart to come in quick.  Pray for a heart to come in quick,  Pray for a heart to come in quick.  Pray for a heart to come in quick.  Hopefully, a heart will come in quick.

Sunday afternoon (07/24/1e

Well, unfortunately, this weekend has been frustrating and not boring.  Late in the week, they started Rachel on antibiotics b/c something grew out of the sputum and urine cultures.  However, when they repeated the sputum culture, it came back okay, so, they aren't sure whether it was a faulty reading or not.  They still have her on an antibiotic to treat the past urinary tract infection as well as anything else that might have tried to start.

As if that wasn't enough, Rachel has been having a time with nausea due, they believe, to her not being able to handle of all the feeds coming through the feeding tube.  They have switched feeds from a higher concentrate to a lower concentrate and lower the rate at which she was getting it through the tube.  Unfortunately, that didn't really solve the problem so they (at our request) stopped the feeds for two days to give her and her stomach a break.  She hasn't had the nausea and wretching as much since. They have since started her on TPN and calcium chloride drips.  They are going to start her on lipids (fat) sometime this evening and try start her back on her feeds as slow rate as possible with something that is very lightly concentrated.

And then, last evening, she started having arrithymia issues again,  At one point during the evening, her heart rate accelarated to about 222 nearly causing her pacemaker to kick in before she broke the arrityhmia on her own,  Also, her heart rhythm changed for some unknown reason early this morning.  They brought in a representative from Medtronics to interagate the pacemaker.  Still not sure what caused the arriythimia but the pacemaker did what it was suppose to do.

So, we ask that everyone please pray for a boring week, and by boring, we mean that any/all infections will heal up and that she will not have anymore arrithymias or strange heart rhythms and that nothing else heart or health wise shows up.

Wednesday 7/20/2011

Haven't updated much but Rachel hasn't been feeling herself. The last set of urine cultures grew something and her sputum grew something. They have started her on Zosyn (an antibiotic). However she has been sleepy and not herself so they have run another set of cultures today. We had a scare that the arrhythmias were starting again. Thankfully it is just the loose lead making noise so they set the pacemaker a little higher hoping not to scare us again.

I would like to personally thank the special group of women that came to visit and took me to lunch on Monday.
It was great seeing you all and it really meant a lot.

We would like to thank everyone for your continued thoughtfulness, support, love and prayers. 

Sunday

Rachel has a slight fever and has also been started on an antibiotic to treat her for a urinary tract infection.  She hasn't looked/felt like herself the past two days.  She walked only once, very briefly, yesterday.  Not sure whether she is going to feel like walking at all today. 

July 13th, 2011

Rachel walked 56 ft. today that is 16 ft more than yesterday. She is supposed to get up and walk again at around 1:30.

Rachel's fan club.

Respiratory Therapist- Assi, Physical Therapist - Diane, Nurses- Tricia and Christen and the star of the show our hero Rachel.

Rachel Walking July 11, 2011

Our hero walked twice today!!!!  Way to go Rachel we Are so Proud of you!!!

Monday 7/11/2011

Kind of an off day. She got up this morning and sat for an hour and did some leg exercises.  However since she has been back in the bed she has been nauseated. Not sure what from. So we may not make it up into the chair for a second time today, we will have to see how the nausea medication works.  Please pray the nausea passes and she isn't trying to come down with something.  

July 6th morning

We would like for all of you to please keep a friend of Rachel's from heart camp (Boggy Creek), Emily Warren, in your prayers for she was added to the heart transplant list this morning. Thank you all for your continued prayer for us.

Tuesday July 5th

The last two days have been boring and yet busy. Rachel has been sitting up two times a day for an hour at a time to build her strength up. She has been doing sprints on the ventilator (that is where she is doing most of the breathing work on her own.). She has been doing her IMT (breathing exercises to get her lungs stronger).  So as you can see while we are waiting we are working on making her good and strong in hopes it will help in her recovery.

Also Dr. Wallis on the transplant team says they are getting heart calls for her just the hearts have not been what they feel will be the best match for her. They are doing everything they can to keep her as a 1A status.  So please be in prayer with us that she can remain a 1a status, we get the call with the best heart to match her, and that while we wait we continue to be boring.

I do have to say God has blessed us with a great son. he may not be able to sit up in the hospital room very long but he has not complained once and he calls through out the day to check on her. He is becoming such a thoughtful,caring and loving young man.

Saturday afternoon

Another "boring" day so far today; let's hope it stays that way.  No fever, no infections, and chest x-ray looks good.  The doctors did tell us that chances for getting a heart actually increase during a holiday weekend.  We sure wouldn't mind if that held true.
She has been able to "sit-up" the last three days for about an hour at a time.  They are able to slide her from her bed onto another bed that converts into a chair.  She has already sat-up twice today for a total of two hours.  The doctors are pleased with how she is doing.

We know this might sound like a broken record but we again want to thank everyone for all that you have done for us.  Receiving cards, e-mails or visits sure lift our spirits.  And, certainly all of the prayers being lifted up on Rachel's behalf is encouraging as well.  Also, to those who have helped us out financially, we certainly appreciate your kindness and generosity.
Words can not express the gratitude we have in our hearts for everything that has been done for us.

Answer to Prayer

I am so thankful for a boring day!!! There is no changes to report. Praying the next change I can post will be that we have a new heart!!!  Thank you Lord for the boring day today.

Monday Evening 6/17/11

What an afternoon!!!As you all know from our last post they were doubling up on her Amiodarone to try and break the atrerial flutter. Well that didn't work either so they contacted the adult pacemaker team hear at Shands about another drug that might break it. After much discussion Dr. Fricker decided that she was stable and comfortable with the flutter and they have her on a Heprin Drip to dissolve and/or prevent any blood clots and thought it was better if we didn't rock the boat at this point. Cause all of you that know Rachel well knows she doesn't like her boat rocked. 


About 4:30, 5:00 pm she went in to a tachycardia event and the pacemaker fired and then she went into a short seizure. All the while the cardiology team is standing outside the door because they had just brought a patient up from surgery to the room next to us.  They did an EKG to see what her rhythm was like and the shock from the pacemaker has broken the Atrial Flutter.  She is back in her OWN sinus rhythm instead of being continuously paced (they had lowered the settings on the pacemaker earlier do to the flutter). Both her and her heart seem to like this very well. 


Praise God for a much needed answer to prayer. Praying he will keep us bored until a heart becomes available.  Thank everyone so much for all the prayers, please keep praying . 

Monday

The latest:  After consulting with the head of the Pediatric Cardiology department, Dr. Fricker, it was decided not to have Rachel go through the procedure under anesthia after all.  They decided to try and "break" her from the atrial-flutter by doubling-up on one of her medications, Amiodarone.  The doctor told us that if upping this particular med did not work, they could add another med to it to see whether or not that does the trick.  He feels that she is doing okay, heart-rate wise, that even if the flutter doesn't break, she should be okay, given all that he has seen this morning.  So, they have started the doubling-up of her med and she seems to be stable for now.
We are SO ready to be "bored" that we can't hardly stand it. 

Sunday

Several weeks ago when we were told that Rachel would be a candidate for a heart transplant, we were told by the surgeon that everything needed to be "boring and frustrating."  Well, unfortunately, it hasn't been boring, especially today.
Rachel has been having "atrial-flutter," meaning that the top chamber of her heart, the atria, had been in a "fluttering" state for several hours in a row.  If the flutter remains, there is a chance that it could lead to a blood-clot formimg.  So, the doctors wanted to do a procedure where they would insert a long tube down her throat with a camera on the end of it to that would go into her heart. This would allow them to see whether or not a clot had already begun to form.  If a clot had formed, they would start her on a Heparin drip (blood thinner) to help desolve the clot.  If there was no clot, they would shock the heart by pacemaker to get her out of the atria flutter, if they could not get her out of the atria flutter by pacing, they would have to use the shock paddles instead.  Howwver, they can not shock the heart, with or without the pacemaker or shock paddles, without the procdure of going down her throat first.  If they shocked her heart and there was a clot there, it could send the clot off thereby causing major problems.
Unfortnately, they had to sedate her before they could put the tube down her throat.  However, she had built up such a tolerance to the sedation, that she didn't fall asleep so they could not do the procedure.  So now, the plan is to take her down to the OR sometime tomorrow and put her under anesthia in order to do the procedure.  The drawback with that is that it causes the heart to supress and given her poor heart function, that can be tricky.  For now, they started her on a Heparin-drip and she is relaxing.
This is so dang aggravating as it seems the longer she is here, the more problems arise.

Determination: The Story of Our Fighter

Every couple, when they find-out that they are going to have a child, want nothing more than to have a healthy baby. Sure, there are other things that are important such as the sex of the baby, maybe finding the right name, but nothing is more important than the health of the baby. In most cases, a baby is born and everything is good and life goes on but sometimes it's not good. A baby can appear, on the outside, to be perfectly fine but can have problems that are hidden from view, like those we experienced with our daughter. She appeared to be perfectly healthy whenever we first saw her, heard her wonderful cry, held her, kissed her, but later learned differently. It is in that moment when you find out that something is wrong with your baby that your world gets turned upside down, that things just don't make sense and you feel completely helpless.

This is the story of one amazing little girl, a fighter. Our daughter, Rachel, has had to fight since the day she was born. She has never known what it's like to lead a "normal" life, never known what it is like to "feel good," never known what is is like to not take medications, never known what is it like to not go to the doctor's office on a regular basis, never know what is is like not to be stuck with needles, never known what it is like not to have heart-caths, never known what is it like not to be hospitalized several times, and never known what is it like not to have had multiple heart surgeries. Her life has been surrounded by adults, mainly nurses, doctors and therapists because she has spent her life in and out of doctor's offices, hospitals and therapy.

We have heard it said that Rachel is "tough" and she is a "fighter" and we couldn't agree more. According to the World English Dictionary, the word tough means, "strong or resilient: durable," and the word fighter means, "a person who has determination," Certainly, these words are perfect descriptions of Rachel. This is why she is truly our hero and we are proud that God blessed us to be her parents.

         
The Fight Begins

September 13, 1992. It's a day we will never forget. For it was the birth of our first child, a baby-girl we named Rachel Smith; a beautiful name for a beautiful baby.

We arrived at TMH shortly after midnight (Sept. 13th) and stayed in the labor and delivery room for what seemed like countless hours. The early morning hours dragged on and finally, after hours and hours of labor, Tammy gave birth to our first-born at approximately 1:58 p.m. on Sunday, September 13, 1992. What a beautiful baby; the prettiest baby ever to be born for sure! We cried with excitement and were both overcome with emotion to see our first child being born. It's a feeling that is indescribable to someone who hasn't witnessed it before. We were both smiling ear-to ear at hearing Rachel cry her first cry, of seeing her look around in amazement at her brand new world and looking into her beautiful little eyes. And did she have a tinge of red-hair? Yep, she sure did! At that moment, it seemed that everything was perfect, but, we would soon find out that it wasn't.

Shortly after her birth, while getting her first "bath" in the nursery, Rachel turned "blue." Initially, we were told by a nurse that as a precaution she would be moved to the Neonatal Intensive Care Unit (NICU) and doctors would be examining her to try and find out why she turned blue. Okay, they probably see this all the time, no big deal. It was later that we learned that our newborn baby, only mere hours old, had something seriously wrong with her. We later found out from the pediatric cardiologist in Tallahassee that our baby had "some type" of heart problem and that she would need to be flown by Life-flight to Shands Hospital in Gainesville for further assessment. You have to be wrong. Please tell us you are wrong!

Questions flooded our minds; emotions took over. Plenty of tears shed. The anxiety of not knowing what was going on scared both of us. How could this be?How could our world turn upside down in a matter of hours?How could we go from being on top of the world as we watched a new life come into the world to a feeling of disbelief and uncertainty? This just did not make any sense. This had to be really bad dream: a nightmare that we expected to wake up from at any minute. Please God, why was this happening to our baby?

Rachel was admitted to the NICU-3 at Shands and remained there for the first two weeks of her life. It was there, in a waiting room, that we found out that our baby girl--- so innocent, so precious, so little --had a congenital heart defect known as "Tetralogy of Fallot" one of the most common cyanotic heart defects and the most common cause of "blue baby syndrome."  (This explained why she turned blue shortly after her birth).  We were absolutely stunned by this news. There had to be some kind of mistake. This is our baby, not someone else's baby. Please tell us you are wrong in your assessment. We learned that Rachel's pulmonary artery as too small to carry blood through to the other parts of her heart.  As a matter of fact, we were told  that her pulmonary artery was almost non-existent.  It was explained to us that in a "normal" heart, the pulmonary artery would be about the size of a pencil, however, Rachel's artery was about the size of a pencil-lead.  Therefore, there was hardly any blood passing through her artery and out to the other parts of her heart.  Also, we were told that she had multiple holes in her heart, with the most significant being a large hole between the two bottom chambers of her heart known as a Venrtricukar-Septal-Defect (VSD). And, finally we were told that she has variety of other problems within her heart that would eventually need to be addressed but for now the most pressing issue was the narrow pulmonary artery. She would eventually need surgery but doctors wanted to wait until she had grown a little more before she had the surgery.

After about two weeks in the NICU at shands, we finally got to bring Rachel home for the first time. For the next 5 1/2 months, we got to enjoy the everyday challenges that comes along with being first-time parents and adjusting to having a baby in the house. We enjoyed every minute of it, including those early morning hours when she would wake up hungry. Eventually though, we knew the day was coming that she would need surgery.

In March 1993, at only six-months old, Rachel had open-heart surgery at Shands. Dr. Daniel Knauf performed the surgery. He would put in a conduit from the right ventricle to her right pulmonary artery with the purpose being to provide more blood flow into the pulmonary artery. The thinking being that the more flow of blood along with her growing and getting bigger, the more the artery would grow with her. Nothing in our lives was as tough as the morning of that surgery. Handing our daughter over to a man that we had only met the night before and trusting that he would not let her die, that he would take care of her is a feeling we will never forget. It's a feeling that no parent should have to encounter.

The night before her surgery, one of the doctors asked us if we had noticed anything odd or different in Rachel's development. We did mention to him that she had always kept her right are drawn-up to her body and that she kept her right hand in a fist, that she didn't use her right arm/hand at all. So, an MRI was ordered. We learned from the MRI, that it appeared Rachel might have had a stroke while still in the uterus. The MRI revealed that the left-side of her brain "didn't form all the way" and this would affect the right side of her body, could effect her speech and language development. We were told that because of this she could be susceptible to seizures. Great! Another thing to worry about in addition to her heart problem!!

From after surgery in 1993 until 2006, Rachel  had numerous heart-cath procedures and visits to the Cardiac clinic at Shands. At one point we were told not to let anyone ever do a cath on her again that our next surgery would be a heart/lung transplant. When she was around five years old, she had surgery to repair her sub-mucus cleft palate as she had also had palatal problems since birth. Rachel eventually began undergoing speech, physical and occupational therapy. Eventually, we learned that Rachel has "Velo-Cardio-Facial Syndrome" (VCFS), a deletion of the 22q11.2 chromosome, also known as "DiGeorge Syndrome." A syndrome is a compilation of abnormalities that affect a person. We later learned that heart defects are one of the more common abnormalities of VCFS. We also discovered that Rachel has a number of these abnormalities including: palatal problems, learning difficulties (she is developmentally delayed), speech/language impairments, hypothyroidism, seizures, scoliosis,and feeding difficulties to name a few.

It seemed that Rachel was constantly in and out of doctor's offices for various reason as she grew from a baby to a teenager. As a baby, she had numerous ear infections which eventually led to her having tubes in her ears. During the winter months, she would always catch a bad cold complete with severe coughing and fever. She began to experience migraine headaches which would, in turn, make her nauseated and cause her to get sick. It seemed like that if anything came along she caught it. For reasons not known, she would sometimes wake up sick during the middle of the night. This would happen off-and-on for several years. Her file at the pediatrician's office was beginning to resemble a New York City telephone book.

In August 1995, Rachel became a big sister to her little brother, Camden. God blessed up with a perfect brother for Rachel. Of course, as sibling they fought like most siblings do and continue even unto this day. But deep down inside Camden has a special place in his heart for his sister and Rachel has that feeling for her brother. Camden has also had to grow up around nurses, doctors and hospitals because of Rachel but not one time has he complained. He has always been there in support of Rachel. So, it has been hard on Camden as well, but in him being around Rachel and seeing her in the hospital so many times it gives him a greater sensitivity for other children who may have difficulties but just want the love and friends like everyone else. He isn't shy about befriending another child with health problems, both seen and unseen. God truly picked a special person in Camden to be Rachel's brother and for that, we are thankful.

In May 2006, Rachel underwent her second open-heart surgery at Shands. The surgery would be preformed by Dr. Mark Bleiweis, chief of  pediatric cardiothoracic surgery. The surgery would entail Dr. Bleiweis replacing her pulmonary artery with a gortex-tube in order to allow enough blood to flow through her artery; to replace the conduit that was put in her when she was six-months old with a pulmonary valve and to close off some of the holes in her heart.  Once again, we had to hand our daughter over to a man that we barely knew and had to trust him that he would take care of her. The surgery was successful and after a hospitalization of about two weeks, Rachel was discharged from Shands. However, our stay at home was short-lived as she seemed to regress after we got home; she had to be re-admitted to Shands about a week later. It seemed that after being re-admitted, Rachel did not get better. After weeks and weeks of no progress it was decided that she would need to undergo an Electrophysiology study (EP study), a procedure which tests the electrical conduction system of the heart to assess the electrical activity and conduction pathways of the heart. Eventually, it was decided that Rachel would benefit from having a pacemaker. So, in late July, while still hospitalized at Shands, Rachel underwent the procedure to have a pacemaker inserted to help regulate her heart rhythm. After nearly four months of being hospitalized, Rachel was discharged and returned to her home.

In November 2006, the weekend before Thanksgiving, Rachel experienced her first seizure. We had no idea that it was a seizure; we assumed it was cardiac-related. She was eventually airlifted to Shands and admitted to the PICU. The doctors determined that it was not cardiac-related and suggested that it could have been a seizure. After a few days at Shands, Rachel was released and we traveled back home on Thanksgiving Day. However, a few days later, she experienced another seizure. Eventually, she was seen by Dr. Ricardo Ayala at TMH and was put on anti seizure medication. Our minds went back in time to the night before her very first surgery when it was revealed to us what the MRI had shown and we were told that Rachel could experience seizures as she got older. Are you kidding?!? Hasn't she been through enough already?? Now she is experiencing seizures too!!

In April 2011, Rachel underwent her third open-heart surgery at Shands. Once again, Dr. Mark Bleiweis performed the surgery. The surgery consisted of Dr. Bleiweis replacing the pulmonary valve from her previous surgery because it had begun to narrow and leak and he wanted to close off the VSD. The surgery was successful but once again complications arose afterwards. We learned that Rachel's aortic valve was leaking more than the doctors realized. We had known for several years that the aortic valve was leaking but it had been categorized as "mild to moderate" and that if it worsened something would need to be done to correct the leaking. A heart-cath revealed that the aortic valve was leaking more than before and in doing so the excess blood from the leaking valve would cause the left ventricle not to relax during the relaxation phase of a heartbeat. The doctors were now faced with a dilemma: attempt to have Rachel undergo a fourth open-heart surgery to try and replace the aortic valve, which would have to be replaced about every two years, thereby putting Rachel through multiple heart surgeries or list her on the national transplant list for a heart transplant.

On June 7, 2011, Rachel's name was officially listed with the United National Organ Sharing transplant list to receive a new heart.  Dr. Bleiweis told us that a new heart would give Rachel something she has never had before: a healthy heart.  He also said that after she receives her heart she will finally experience the joy of what feeling good feels like.

So here we are, waiting on a new heart. 18 years of battles and our little hero, refusing to go down but instead fighting in the next round of her fight with life.  Our little hero, so strong, so resilient and so durable, determined not to give up.  Looking at her, it's as if she is saying to life, "This is the best you can do to me?  Well, I'll show you?  I'll take your best shot and give it right back to you?"

So the next time you hear the words "tough" or "fighter," please remember one very special girl.  A girl who is small in stature but is strong, resilient, durable and most of all, determined.  That little girl is our beautiful hero, Rachel.

P.S. - To every parent: If you have a healthy child, take the time to thank God for him or her. Take the time now to thank God that you don't have to experience seeing your child with a long incision down the middle of his or her chest from having had open-heart surgery; or having to watch your child be hooked-up to so many tubes and wires while laying in a hospital bed; or seeing your child with a breathing-tube down his or her throat; or seeing your child get stuck with needles so many times that you wonder if he or she has any veins left; or having to watch your child take so many pills during the course of a day; or taking your child to the doctor's offices over and over; or seeing your child suffer a seizure; or seeing tears stream down the face of your child because he or she is scared of what might happen next. Take the time to wrap your arms around your child today and thank God for them.