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.