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.
Friday, September 30, 2011
Wednesday, September 28, 2011
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.
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, September 27, 2011
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, September 26, 2011
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!
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, September 21, 2011
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, September 20, 2011
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
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, September 19, 2011
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.
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, September 18, 2011
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).
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, September 16, 2011
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, September 15, 2011
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.
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.
Wednesday, September 14, 2011
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. :-)
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.
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, September 13, 2011
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.
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, September 12, 2011
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.
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, September 9, 2011
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.
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, September 8, 2011
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.
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, September 7, 2011
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.
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.
Tuesday, September 6, 2011
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.
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.
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, September 4, 2011
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.
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, September 2, 2011
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.
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, September 1, 2011
Thursday (Day 9 with new heart) Pictures of gown
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.
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.
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