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.