1.28.2012
Good Biopsy Results
We are thrilled to have received a good biopsy result late yesterday. Ry scored a zero. This is wonderful news and makes us a little more easy about the high wedge pressure. We are hoping to be discharged late today after her evening dose of IV antibiotics. Thanks for continuing to check in on us.
1.27.2012
Little Speed Bump
This will have to be rather short, as I did not pack the laptop for this trip so my iphone will have to do.
We are currently admitted on C8 :( The good news is that Ry is doing fine (much better than yesterday evening). Yesterday she had a long day including a morning filled with labs, echo, exam, Xray, EKG, etc. all while being NPO. She was a great girl as always as we waited till 2:00 before we even went back! So she wasn't out from cath/biopsy and finished having her line removed till nearly 4. We were happy to remember that her infusion would only b 2 hours rather than 4 though since it was her last. So after a couple of hours in recovery w the infusion going we were leaving campus by 5:45.
Ry was slower than usual coming out of anesthesia. So Gilly and I were watching her closely as we pulled out of town. We got about an hour down the road and pulled over to take her vitals and guess what... She had a fever and an elevated heart rate. So we called Childrens and were told to head back. We came through the ER where she spiked a fever of 103.6. We were soon admitted and with some benadryl and tylenol she did fine. However, a immuno-surpressed child is treated with extremely proactive actions. Ry was cultured and started on two IV antibiotics (in addition to what she received in cath yesterday). So we'll be monitored for 48 hours.
Yesterday's cath also yielded really high wedge pressures. This is the number we've struggled with each time. They had come down to 16 two weeks ago which is only slightly above our hopes of reaching 12ish (although normal is about 7-10). They were as high as 22 several weeks post transplant but yesterday they were 24! Although high wedge pressures are often a sign of rejection, all of her other tests appeared to show a happy heart. The real indicator will be today's biopy results which we hope to have late today.
This should sum up our last 30 hours. I'll keep you all posted as things develop. We are glad Ry is feeling fine today and we are thankful for that. Now I'm really hoping she takes a long nap. I am so tired :)
We are currently admitted on C8 :( The good news is that Ry is doing fine (much better than yesterday evening). Yesterday she had a long day including a morning filled with labs, echo, exam, Xray, EKG, etc. all while being NPO. She was a great girl as always as we waited till 2:00 before we even went back! So she wasn't out from cath/biopsy and finished having her line removed till nearly 4. We were happy to remember that her infusion would only b 2 hours rather than 4 though since it was her last. So after a couple of hours in recovery w the infusion going we were leaving campus by 5:45.
Ry was slower than usual coming out of anesthesia. So Gilly and I were watching her closely as we pulled out of town. We got about an hour down the road and pulled over to take her vitals and guess what... She had a fever and an elevated heart rate. So we called Childrens and were told to head back. We came through the ER where she spiked a fever of 103.6. We were soon admitted and with some benadryl and tylenol she did fine. However, a immuno-surpressed child is treated with extremely proactive actions. Ry was cultured and started on two IV antibiotics (in addition to what she received in cath yesterday). So we'll be monitored for 48 hours.
Yesterday's cath also yielded really high wedge pressures. This is the number we've struggled with each time. They had come down to 16 two weeks ago which is only slightly above our hopes of reaching 12ish (although normal is about 7-10). They were as high as 22 several weeks post transplant but yesterday they were 24! Although high wedge pressures are often a sign of rejection, all of her other tests appeared to show a happy heart. The real indicator will be today's biopy results which we hope to have late today.
This should sum up our last 30 hours. I'll keep you all posted as things develop. We are glad Ry is feeling fine today and we are thankful for that. Now I'm really hoping she takes a long nap. I am so tired :)
1.25.2012
Home Sweet Sweet Home
Man, have we been busy. One week ago I unpacked my and Ry's suitcase. Many folks don't realize just how exciting this really was. I packed a bag on July 18th and headed to Dallas and we have lived out of a suitcase ever since! I was able to put my shoes in my closet and hang my clothes on hangers!! It really is the little things that get me so excited :) Gilly was just as thrilled. He's been between the ranch, our Hewitt duplex, the hospital and our hotel since December of last year. Whew!
So all I can say is that we are are beside ourselves here at home. It's been a lot of work, but our house now feels like home again. Yesterday Gilly and I finished hanging our pictures and everything feels good again. We've been working as hard as we can to get things in place before I get back to work which will be just around the corner!
Ry's been doing great! She is right at home and has been sleeping great in her big girl bed. She loves it!!
She is also happy to picnic with her buddy Dora. The weather has been great so we've been having our snacks and tea parties on the back porch.
This past week, Ry and I also took a special trip. It's been since Thanksgiving of 2010 since Ry has been able to go to my mom and dad's house. We used to take trips for weekend fun or even a weekday dinner when Ry was feeling good, but ever since she was listed for her transplant, their house has been out of our travel circle. As we pulled down the drive Ry kept saying "I remember this place!" although I really doubt she did. She was completely comfortable as we walked in the house and found her way straight to the toys! We enjoyed some lunch, seeing the horses, throwing rocks in the creek, playing with water guns poolside and playing with the puppies. She was so exhausted as we pulled out that she didn't even make it half way down the drive before she was sleeping!
We hope that soon enough we'll get to head to Austin to see Mimi and Papi's house. It's been a long time since she's been there either, but for now she enjoys her time with them out here at the ranch and just thinks that is their house.
Here is a little video clip of her being silly and Gigi and Papa's.
Tomorrow Ry will have a long day at the hospital. We will arrive at Children's at 7:15 and then begin with an echo, EKG, chest Xray and lab work. Then we'll head to pre-op so that she can be worked up for her biopsy and heart cath. In addition to the usual she will also be met by general surgery in order to have her central line removed. Ry has had a central Broviac line since June when she was still on Milrinone prior to her hospital stay. The line has been wonderful because it has saved her from hundreds of pokes. We have been able to draw labs and administer various meds and infusions over the past 7 months. However, the direct line is also an infection risk and with her suppressed immune state it is best that we remove it. (It has also prevented her from being able to take a fun bath for 7 months.) She will soon go from weekly blood draws (we started with twice a week draws) to once every two weeks so this is the optimal time for removal. We are hoping she makes the transition to having to be poked with her office visits ok. Currently she has no hesitations about our trips to the hospital... I hope this doesn't change.
Back to our Thursday hospital visit... Once Ry gets out of the Cath Lab, she'll head to the PACU for recovery. Tomorrow will also be our last cytogam infusion (happy dance). This will take 4 hours. Blah.
So it will be sometime early in the evening before we get out of there. Ry always does great on these long days. Hope tomorrow will be as good as usual. Wish us luck :)
So all I can say is that we are are beside ourselves here at home. It's been a lot of work, but our house now feels like home again. Yesterday Gilly and I finished hanging our pictures and everything feels good again. We've been working as hard as we can to get things in place before I get back to work which will be just around the corner!
Ry's been doing great! She is right at home and has been sleeping great in her big girl bed. She loves it!!
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| This isn't the best pic, but you can tell how excited she is about her pink big girl bed! |
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| Dora and Ry :) |
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| Mmmm... Pink cupcakes. Ry put the sprinkles on herself. |
This past week, Ry and I also took a special trip. It's been since Thanksgiving of 2010 since Ry has been able to go to my mom and dad's house. We used to take trips for weekend fun or even a weekday dinner when Ry was feeling good, but ever since she was listed for her transplant, their house has been out of our travel circle. As we pulled down the drive Ry kept saying "I remember this place!" although I really doubt she did. She was completely comfortable as we walked in the house and found her way straight to the toys! We enjoyed some lunch, seeing the horses, throwing rocks in the creek, playing with water guns poolside and playing with the puppies. She was so exhausted as we pulled out that she didn't even make it half way down the drive before she was sleeping!
We hope that soon enough we'll get to head to Austin to see Mimi and Papi's house. It's been a long time since she's been there either, but for now she enjoys her time with them out here at the ranch and just thinks that is their house.
Here is a little video clip of her being silly and Gigi and Papa's.
Tomorrow Ry will have a long day at the hospital. We will arrive at Children's at 7:15 and then begin with an echo, EKG, chest Xray and lab work. Then we'll head to pre-op so that she can be worked up for her biopsy and heart cath. In addition to the usual she will also be met by general surgery in order to have her central line removed. Ry has had a central Broviac line since June when she was still on Milrinone prior to her hospital stay. The line has been wonderful because it has saved her from hundreds of pokes. We have been able to draw labs and administer various meds and infusions over the past 7 months. However, the direct line is also an infection risk and with her suppressed immune state it is best that we remove it. (It has also prevented her from being able to take a fun bath for 7 months.) She will soon go from weekly blood draws (we started with twice a week draws) to once every two weeks so this is the optimal time for removal. We are hoping she makes the transition to having to be poked with her office visits ok. Currently she has no hesitations about our trips to the hospital... I hope this doesn't change.
Back to our Thursday hospital visit... Once Ry gets out of the Cath Lab, she'll head to the PACU for recovery. Tomorrow will also be our last cytogam infusion (happy dance). This will take 4 hours. Blah.
So it will be sometime early in the evening before we get out of there. Ry always does great on these long days. Hope tomorrow will be as good as usual. Wish us luck :)
1.12.2012
Another Good Biopsy
This week we headed to Dallas for a biopsy on Tuesday. Yesterday we received the results that Ry scored a zero! This is once again great news. Her echo, EKG, and Xray all looked great and the heart cath showed little to no improvement to her wedge pressures. They are hanging out right around 15-16. We hope to see this trend down soon, but for now we are thankful for the good report and are enjoying our crazy little girl.
She once again did great during her day at the hospital. We had an early start, arriving at 6:15. I'm always so proud of her. This time we did not have to hang around 4 full hours in recovery so we were able to leave just after noon. We stopped for a quick bite and then Ry slept the WHOLE way home. We talked with our doctors and although we have hit our 3 month mark, there is little change to her medications at this time. We hope to see things taper off at 6 months. However, because she is doing so well, we are able to try to begin our resumption of a normal life. This being said, we are amidst the worst time of year to rip off her mask and start to be around others. But baby steps. We will continue to use lots of precautions and stay in a lot, but it's great to know we're heading towards normalcy.
Thanks for checking in on us!
She once again did great during her day at the hospital. We had an early start, arriving at 6:15. I'm always so proud of her. This time we did not have to hang around 4 full hours in recovery so we were able to leave just after noon. We stopped for a quick bite and then Ry slept the WHOLE way home. We talked with our doctors and although we have hit our 3 month mark, there is little change to her medications at this time. We hope to see things taper off at 6 months. However, because she is doing so well, we are able to try to begin our resumption of a normal life. This being said, we are amidst the worst time of year to rip off her mask and start to be around others. But baby steps. We will continue to use lots of precautions and stay in a lot, but it's great to know we're heading towards normalcy.
Thanks for checking in on us!
1.04.2012
We're still here and doing great!
In fact, we're doing so good, I hate to sit down and waste time at the computer. :)
It's strange to think we're almost three months post transplant. Gilly and I sat in the kitchen the other evening thinking, "wow, so this is what it's like to really have your prayers answered." We are not oblivious to the reality that we will spend much of Rylynn's life still facing numerous medical challenges. There will be ups and downs for the rest of her life, but what we do know is that we will cherish every bit of the ride and be sure to soak in the ups. It's amazing to see how Rylynn has readjusted to life here at home with little hesitation or question. I know at her age it's easier for her to just accept her daily situation without question of why, how or what lies ahead, but we're super proud of how well she has handled things.
We went back up to Dallas last week for a VERY long appointment on Thursday. It included a heart cath and biopsy, echo, chest Xray, EKG and lab work. Ry received a good report all around. Her pressures did not change much since her cath two weeks ago, but we'll continue to watch how they trend. Her biopsy results came back as a 1R, which is excellent and everything else came back looking good. It winded up being an 11 hour day on campus and then a 3 hour drive home. I was so thankful Gilly came with us. Ry did amazing though. We were both so proud of her. We are headed back to Dallas for an appointment tomorrow. Luckily this time it should be rather short if all goes well. Throughout the month of January, we'll still be seen once a week, but if things continue in the right direction we'll eventually be seen every other week. Gotta tell you, once a week is so nice compared to twice a week that we were seen for the first few months... not that we don't love our Dallas peeps!!
So here's what we've been up to. Enjoy these pics of our happy girl!
First she got right to work with Daddy. We went to see the horses one day and then spent another beautiful afternoon out feeding the cows with Daddy. She was able to do all her favorite things, throw feed out, drive the truck and have a picnic lunch with him at work.
We actually spend about half of our day working super hard and the other half in Ry's favorite spot... her swing! I've been so thankful for the pleasant weather we've been having. Ry is so stinkin' happy in this swing. It makes my heart smile!
I also should report that Ry is walking and dancing more than ever before! I can't wait to have her re-evaluated by the therapists. In just the past three weeks that she's been walking she has made enourmous strides! She's not running yet, but her little feet move so fast sometimes, she only lacks the spring in her step.
Oh yeah, here's a funny story. The day after we returned home. Ry was being super silly and spinning in circles on the living room rug here at the ranch house. She of course then bit the dust as her still slightly uncoordinated feet got twisted. As she pulled herself up from the floor you could already see the big black eye she had. Gilly and I thought, "oh great, we've been home less than 24 hours and she has a black eye!" It really turned into a shiner to be proud of :) In fact, in a couple of days she has discoloring under both of her eyes (just in time for Christmas pictures). This hasn't been her last fall, but that's just part of getting her legs back under her. Luckily, it hasn't slowed her down much, now she knows it's ok to fall sometimes, she brushes it off and keeps going.
This is all I have time for this morning, because I've got to get meds drawn before my party animal wakes up. I will try to get back on real soon and post our pictures of our Christmas fun. Take care and keep checking in on us!!
It's strange to think we're almost three months post transplant. Gilly and I sat in the kitchen the other evening thinking, "wow, so this is what it's like to really have your prayers answered." We are not oblivious to the reality that we will spend much of Rylynn's life still facing numerous medical challenges. There will be ups and downs for the rest of her life, but what we do know is that we will cherish every bit of the ride and be sure to soak in the ups. It's amazing to see how Rylynn has readjusted to life here at home with little hesitation or question. I know at her age it's easier for her to just accept her daily situation without question of why, how or what lies ahead, but we're super proud of how well she has handled things.
We went back up to Dallas last week for a VERY long appointment on Thursday. It included a heart cath and biopsy, echo, chest Xray, EKG and lab work. Ry received a good report all around. Her pressures did not change much since her cath two weeks ago, but we'll continue to watch how they trend. Her biopsy results came back as a 1R, which is excellent and everything else came back looking good. It winded up being an 11 hour day on campus and then a 3 hour drive home. I was so thankful Gilly came with us. Ry did amazing though. We were both so proud of her. We are headed back to Dallas for an appointment tomorrow. Luckily this time it should be rather short if all goes well. Throughout the month of January, we'll still be seen once a week, but if things continue in the right direction we'll eventually be seen every other week. Gotta tell you, once a week is so nice compared to twice a week that we were seen for the first few months... not that we don't love our Dallas peeps!!
So here's what we've been up to. Enjoy these pics of our happy girl!
First she got right to work with Daddy. We went to see the horses one day and then spent another beautiful afternoon out feeding the cows with Daddy. She was able to do all her favorite things, throw feed out, drive the truck and have a picnic lunch with him at work.
Ry's also been busy helping mommy work at our house during the day. Unfortunately, the renters did a real number on our house and landscaping while we were gone for the past year. It was really heart-breaking to see the house that we had just finished working so hard on, in such a disgusting state. But we've been busy again trying to get things prepared and repaired so we can get back in it as soon as possible.
I also should report that Ry is walking and dancing more than ever before! I can't wait to have her re-evaluated by the therapists. In just the past three weeks that she's been walking she has made enourmous strides! She's not running yet, but her little feet move so fast sometimes, she only lacks the spring in her step.
Oh yeah, here's a funny story. The day after we returned home. Ry was being super silly and spinning in circles on the living room rug here at the ranch house. She of course then bit the dust as her still slightly uncoordinated feet got twisted. As she pulled herself up from the floor you could already see the big black eye she had. Gilly and I thought, "oh great, we've been home less than 24 hours and she has a black eye!" It really turned into a shiner to be proud of :) In fact, in a couple of days she has discoloring under both of her eyes (just in time for Christmas pictures). This hasn't been her last fall, but that's just part of getting her legs back under her. Luckily, it hasn't slowed her down much, now she knows it's ok to fall sometimes, she brushes it off and keeps going.
This is all I have time for this morning, because I've got to get meds drawn before my party animal wakes up. I will try to get back on real soon and post our pictures of our Christmas fun. Take care and keep checking in on us!!
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