Ry has been holding steady and we have been weaning her from teh oxygen today. In the last hour they just turned off the last bit of it, so she is now breathing room air. So far, so good. Her sats are staying right at 75 which is th elow threshold they want her at, but we are still considering this a small victory. There is no way to know yet if they will let us go home without it, we'll watch her overnight. The plan was to be dischanged tomorrow, but I know there is a good possibility it may still be Wednesday. We will have a follow-up with the transplant team on Thursday. We will have to stick around Dallas until that appointment, but we are desperately hoping that we will be able to go home while we wait for her heart.
Thanks for all the prayers that have been lifted for Rylynn. We pray that she remains stable and doesn't struggle. We pray for the wisdom of our care team. We pray for strength and patience. We pray that if there is a family out there who has to endure a tragedy and loss, that they will choose to donate life to others who wait for a miracle.
I hope you all have had a wonderful and safe Memorial Day.
With love . . .
5.30.2011
5.28.2011
Holding Steady on the 8th Floor
Ry's had another good day. She was able to play in the playroom for a couple of hours today. It was not easy wheeling to poles, an oxygen tank and keeping her 4 wires an dtubes from being tangled. She had a great time though.
She also had a real bath today. Our first since we've been here. Gilly and I are trying to practice bathing her with oxygen and PICC line. We failed miserably despite the plastic and tape and Gilly there to hold things out of the water, we still got everything wet that wasn't supposed to be. I hope we get the hang of this before we get home.
This afternoon, while Ry and Gilly napped, I left the hospital for an hour and a half. It was the first tim eout of the hospital in 12 days. It was good for my mind and body! I was glad to be away for a bit, but the entire time I kept worrying that they would come by the room to change a dressing or flush her IV. But all was well and the time away was good for me.
They are still thinking that we will be discharged on Tuesday or even Wednesday. We have to coordinate home health care and a few other things that aren't easy to do over a holiday weekend. Besides we are secretly hoping that if we're here a couple of extra days, maybe we'll get to try to wean her from the oxygen.
It's time to try to get Ry to wind down (although we had a tea party after dinner tonight so she's on a caffine high)!
I will update as we know more. I hope you all are enjoying the summer weather and a long weekend. We wish we were using Ry's new Dora fishing pole out at the ranch and eating some of Gilly's grilled steaks, but maybe next year!
With love . . .
She also had a real bath today. Our first since we've been here. Gilly and I are trying to practice bathing her with oxygen and PICC line. We failed miserably despite the plastic and tape and Gilly there to hold things out of the water, we still got everything wet that wasn't supposed to be. I hope we get the hang of this before we get home.
This afternoon, while Ry and Gilly napped, I left the hospital for an hour and a half. It was the first tim eout of the hospital in 12 days. It was good for my mind and body! I was glad to be away for a bit, but the entire time I kept worrying that they would come by the room to change a dressing or flush her IV. But all was well and the time away was good for me.
They are still thinking that we will be discharged on Tuesday or even Wednesday. We have to coordinate home health care and a few other things that aren't easy to do over a holiday weekend. Besides we are secretly hoping that if we're here a couple of extra days, maybe we'll get to try to wean her from the oxygen.
It's time to try to get Ry to wind down (although we had a tea party after dinner tonight so she's on a caffine high)!
I will update as we know more. I hope you all are enjoying the summer weather and a long weekend. We wish we were using Ry's new Dora fishing pole out at the ranch and eating some of Gilly's grilled steaks, but maybe next year!
With love . . .
5.27.2011
Thoughts for the week
~ The bathrooms here smell like bubble gum ... and I like it.
~ Nothing beats fresh air on a warm afternoon. I miss the sunshine.
~ I am proud of Rylynn's manners, even in this terrible situation. She tells the nurses thank you and says sorry and please.
~ It's funny how mom's worry about their children. Mom has been here all week washing my laundry, trying to make me eat and rest and looking out for me. Thanks mom!
~ I miss Gilly terribly. It's been hard not having him here. We love our daddy and can't wait for him to come see us today! :)
~ Play-doh eyebrows are awesome!
Made it up to the 8th Floor!
So after another few days in ICU and a cath, we have made it back to the 8th floor. Yay! Ry made the move perfectly this time. It is a blessing that she did so poorly on Sunday and we went back downstairs which led us to the heart cath. Her new medicine has worked quite well. We have started on the lowest dose and do see some improvement. It is administered every 6 hours... boo. But oh well, we might as well get used to it because post transplant we'll have plenty of those. The other bummer thing about the med is that she HATES it. Rylynn has always been great at takingher meds. She's done it since she was born, so I don't think it ever crossed her mind that she could fight us on it. But apparently the bubblegum flavor of this medicine just makes her sick. After two doses of gritted teeth, spits and tears I knew we had to do something. She had begun rejecting all her meds... this could be real trouble.
We have added just enough cherry syrup to the bublegum that its bearable and hopefully she'll resume back to her wonderful medicine-taking self before long.
Since being on the new med, she's come down to only 1L of oxygen and her sats are holding steady in the high 70s. After her first two doses of the Sildenafil she would get VERY flushed and her sats actually reached the low 90s!! They haven't been that high since she was just born.
We aren't sure just how long we'll have to be here on the floor and if we'll have to home on the oxygen, but we're getting anxious knowing it should be on or by Tuesday.
Thanks for all the prayers and well wishes. We are so grateful for our friends and family, ya'll are the best!
With love...
We have added just enough cherry syrup to the bublegum that its bearable and hopefully she'll resume back to her wonderful medicine-taking self before long.
Since being on the new med, she's come down to only 1L of oxygen and her sats are holding steady in the high 70s. After her first two doses of the Sildenafil she would get VERY flushed and her sats actually reached the low 90s!! They haven't been that high since she was just born.
We aren't sure just how long we'll have to be here on the floor and if we'll have to home on the oxygen, but we're getting anxious knowing it should be on or by Tuesday.
Thanks for all the prayers and well wishes. We are so grateful for our friends and family, ya'll are the best!
With love...
5.25.2011
Recovering from Cath
So the Docs did decide to have a Cath performed today. It was a miserably long day. Ry was NPO (no food or drink) beginning at midnight and we did not end up going into the lab until 2:45!! Rylynn begged me for water all day in the sweetest sadest voice. It broke my heart not to give her what she really needed. She even began asking GiGi and the nurses for it.
The cath did not provide us with any unexpected information. The pressures in her lungs is higher than in December, there were not a detrimental number of collaterals developed and as expected there were a number of AMVs. The nitric oxide test showed positive results, so we are began Ry on a new med tonight. I am sad that this is our first med to be administered every 6 hours. I know we will have so many medications post-transplant; many of which will be every 4-24 hours. We have always just been so lucky that they've been daily or twice a day. The new medication should help open her caprillaries a bit carrying more red blood to her body. This will hopefully raise those saturations levels. It will be several days before we would see any results of the medication, but we hope to see some changes.
Rylynn came out of anesthesia well. We are still monitoring her BP carefully because it's been quite low since the procedure. She was up for a couple of hours, drank A LOT, played play-do and then crashed. I am hoping she sleeps well through the night.
We are STILL in ICU! We're hoping that by tomorrow or Friday we can be moved up to the floor. At this point we just have to conitnue to reach a safe point to take Ry home. We would love to go home without oxygen, but she's still on 5L so we have a ways to go to wean her down.
I am exhausted and am calling it a night. I just hope after an afternoon of resting that Ry will sleep well.
I'll post again soon!
With love. . .
The cath did not provide us with any unexpected information. The pressures in her lungs is higher than in December, there were not a detrimental number of collaterals developed and as expected there were a number of AMVs. The nitric oxide test showed positive results, so we are began Ry on a new med tonight. I am sad that this is our first med to be administered every 6 hours. I know we will have so many medications post-transplant; many of which will be every 4-24 hours. We have always just been so lucky that they've been daily or twice a day. The new medication should help open her caprillaries a bit carrying more red blood to her body. This will hopefully raise those saturations levels. It will be several days before we would see any results of the medication, but we hope to see some changes.
Rylynn came out of anesthesia well. We are still monitoring her BP carefully because it's been quite low since the procedure. She was up for a couple of hours, drank A LOT, played play-do and then crashed. I am hoping she sleeps well through the night.
We are STILL in ICU! We're hoping that by tomorrow or Friday we can be moved up to the floor. At this point we just have to conitnue to reach a safe point to take Ry home. We would love to go home without oxygen, but she's still on 5L so we have a ways to go to wean her down.
I am exhausted and am calling it a night. I just hope after an afternoon of resting that Ry will sleep well.
I'll post again soon!
With love. . .
5.23.2011
STILL in ICU
I'm wondering how many more posts I will have to label this way :(
We had a pretty good weekend here. Ry's sats were holding steady in the mid 70s with Liters of oxygen and her desatting spells had withered to only about once every 24 hours. We would bump her oxygen flow up a bit to get her through the spell, but she could always work her way through it and then come back to 4L and hold steady. Sunday we were thrilled and ready to move up to the 8th floor. We hoped a few more days of slowly lowering her flow and some time to be trained for the care of her PICC line and we'd be home before long. Rylynn was not happy about that plan.
We moved up to the floor after lunch. I did not want Rylynn to get the impression that we were leaving, so I honestly told her we were moving to another room like the one that had the cowboy hats. The eighth floor has boots, cowboy hats, etc on the walls and floors. Well, we took one step into our room which happen to be outfitted with stars instead of hats and she was not happy! Anyone who knows Ry knows she has a mind of her own! This was the beginning to a terrible evening. Her sats dropped, and even after being put on 9L of flow with a vapotherm machine they would come out of the low 60s. By 10:30, although there was slight improvement, we were re-packing all our snacks, clothes, toys, and DVDs back up for a move back down to the ICU. We walked into our new ICU room around 11:00 and her sats continued to improve. Within a half hour she was back to holding steady at 73 and playing with her new ZhuZhu pets with the nurses! We can't clinically say that the move is what caused the change but the Doctors do throw around the term "therapeutic move". Either way it was a VERY late night / early morning!
Today was a good day. Her sats remained in the mid 70s with no spells. An echo showed mild improvement to her heart function. And labs continue to show a slight improvement of her liver, kidney, etc. from last week.
We are definitely on the right path, but we have some more exploring and tweaking to do. Rylynn in scheduled for a heart cath sometime on Wednesday to check for capillary formation and to check the pressures of her lungs to see if this can explain the drop in oxygen. There are always risks to her going under anesthesia again so I ask for additional prayers for her as she undergoes this procedure. And please pray for the wisdom of all those who care for her daily here at Children's. This is truly a team effort to get these little ones taken care of.
I am going to try to get a little sleep. I'm thrilled to be climbing into this vinyl pull out couch before 2am! I am hoping for a peaceful night.
I'll update again on Wednesday.
With love . . .
We had a pretty good weekend here. Ry's sats were holding steady in the mid 70s with Liters of oxygen and her desatting spells had withered to only about once every 24 hours. We would bump her oxygen flow up a bit to get her through the spell, but she could always work her way through it and then come back to 4L and hold steady. Sunday we were thrilled and ready to move up to the 8th floor. We hoped a few more days of slowly lowering her flow and some time to be trained for the care of her PICC line and we'd be home before long. Rylynn was not happy about that plan.
We moved up to the floor after lunch. I did not want Rylynn to get the impression that we were leaving, so I honestly told her we were moving to another room like the one that had the cowboy hats. The eighth floor has boots, cowboy hats, etc on the walls and floors. Well, we took one step into our room which happen to be outfitted with stars instead of hats and she was not happy! Anyone who knows Ry knows she has a mind of her own! This was the beginning to a terrible evening. Her sats dropped, and even after being put on 9L of flow with a vapotherm machine they would come out of the low 60s. By 10:30, although there was slight improvement, we were re-packing all our snacks, clothes, toys, and DVDs back up for a move back down to the ICU. We walked into our new ICU room around 11:00 and her sats continued to improve. Within a half hour she was back to holding steady at 73 and playing with her new ZhuZhu pets with the nurses! We can't clinically say that the move is what caused the change but the Doctors do throw around the term "therapeutic move". Either way it was a VERY late night / early morning!
Today was a good day. Her sats remained in the mid 70s with no spells. An echo showed mild improvement to her heart function. And labs continue to show a slight improvement of her liver, kidney, etc. from last week.
We are definitely on the right path, but we have some more exploring and tweaking to do. Rylynn in scheduled for a heart cath sometime on Wednesday to check for capillary formation and to check the pressures of her lungs to see if this can explain the drop in oxygen. There are always risks to her going under anesthesia again so I ask for additional prayers for her as she undergoes this procedure. And please pray for the wisdom of all those who care for her daily here at Children's. This is truly a team effort to get these little ones taken care of.
I am going to try to get a little sleep. I'm thrilled to be climbing into this vinyl pull out couch before 2am! I am hoping for a peaceful night.
I'll update again on Wednesday.
With love . . .
5.21.2011
Ready to bust out of this place!
We're still here in ICU :( Ry had a great day yesterday! She was acting like herself, ate well, shared stickers with every nurse, doctor, nurse practioner, respiratory therapist, specialist, etc. who came in the door! She was her polite and social self. No more grunts for her visitors!
We had a pretty good night too (which is when Rylynn seems to always desat). She is still on 6.5L of oxygen which really is our only obstacle. I wish we could get her weaned from it rather than having to keep raising it. The PICC med seems to be helping her body in many ways though. All her other organs are functioning great and circulation is strong.
There is talk that we may get to move up to the 8th floor today, but we're still not sure. Docs haven't come by yet this morning, so we'll just wait to see what they think.
I appreciate all the prayers and kind words from our friends and families. Please stay the course with those prayers.
With love...
We had a pretty good night too (which is when Rylynn seems to always desat). She is still on 6.5L of oxygen which really is our only obstacle. I wish we could get her weaned from it rather than having to keep raising it. The PICC med seems to be helping her body in many ways though. All her other organs are functioning great and circulation is strong.
There is talk that we may get to move up to the 8th floor today, but we're still not sure. Docs haven't come by yet this morning, so we'll just wait to see what they think.
I appreciate all the prayers and kind words from our friends and families. Please stay the course with those prayers.
With love...
5.19.2011
Still in ICU
I am just now sitting down to the laptop to report to you all. I apologize I could do this sooner. We've had a busy few days since Monday evening. I will try to keep this as short as possible, but it seems I have a lot to cover!
Ry was scheduled to go into our Pediatrician's office on Monday to run some followup labs for our transplant team. A few numbers seemed a little off at our last appointment. Ry and I went in, and as always we had her sats checked there in the office while we were in. We had hoped they came up a bit from the low reading of 78 a week prior. Ry had been fighting a bit of an allergy spell the week before and we assumed that was the reason for the lower reading. We were concerned when we could not get a reading above the mid-60s. Labs were run and calls were placed to our Dallas team. There was a very high level of concern and Rylynn and I were sent home with just enough time to back bags and get straight to the local ER. (I will later get into the fury of packing our bags and heading out!)
The ER was expecting us and put Ry on oxygen right away while we waiting for the Dallas transport team to arrive. I had tried to ask that Ry and I just drive ourselves to Dallas, but with such low sats, they did not want to risk her detiorating along the way. They prefered that she be kept on oxygen. OK. Understandable. However, due to a string of circumstances, we would not be transported by ambulance or even helicopter... we'd be picked up by their fixed wing plane!! Ry was a champ and never cried in teh ambulances or the plane. We arrived at Children's around 11:00 (I think, but the time ran together that evening). After labs, chest Xray, and an echo. We were settled in our bed around 2:00am. Tuesday morning was spent reviewing the finds. While there seems to be no major change in Rylynn's heart or body physically, she had reached her threshold. Her little (or should I say huge becasue of how much it's enlarged) heart just can't keep up anymore. Doctors told us it was time to give Ry a PICC (Peripherally Inserted Central Catheter) Line and begin her on a 24 drip medication. The good news is that this should help ease the stress on her heart while we wait for the transplant. This is no small step in our journey though. Ry was immediately bumped to a 1A status on the list. We need that heart ASAP!
The hope was to go home with the PICC. This would mean Ry carries a backpack holding her pump and meds and is simply walking and living life with an IV.
HOWEVER, it has been since Tuesday afternoon that they started the PICC and the meds don't seem to be working at all. We've made no headway and frankly, Gilly and I are terrified. This is the part where I ask all family and friends to pray for some improvement. I'm not sure how much longer we will wait to see signs of the medication taking effect before we try something else. Doctor's have told us to be patient, but Ry's had a couple of rough nights and we feel we're no longer treading water, but starting to go under a bit. They are keeping us in ICU because of the desaturation spells she keeps having.
I unfortunately, have to stop short here because it's almost time to talk to the Doctors.
Please pray for Rylynn.
Ry was scheduled to go into our Pediatrician's office on Monday to run some followup labs for our transplant team. A few numbers seemed a little off at our last appointment. Ry and I went in, and as always we had her sats checked there in the office while we were in. We had hoped they came up a bit from the low reading of 78 a week prior. Ry had been fighting a bit of an allergy spell the week before and we assumed that was the reason for the lower reading. We were concerned when we could not get a reading above the mid-60s. Labs were run and calls were placed to our Dallas team. There was a very high level of concern and Rylynn and I were sent home with just enough time to back bags and get straight to the local ER. (I will later get into the fury of packing our bags and heading out!)
The ER was expecting us and put Ry on oxygen right away while we waiting for the Dallas transport team to arrive. I had tried to ask that Ry and I just drive ourselves to Dallas, but with such low sats, they did not want to risk her detiorating along the way. They prefered that she be kept on oxygen. OK. Understandable. However, due to a string of circumstances, we would not be transported by ambulance or even helicopter... we'd be picked up by their fixed wing plane!! Ry was a champ and never cried in teh ambulances or the plane. We arrived at Children's around 11:00 (I think, but the time ran together that evening). After labs, chest Xray, and an echo. We were settled in our bed around 2:00am. Tuesday morning was spent reviewing the finds. While there seems to be no major change in Rylynn's heart or body physically, she had reached her threshold. Her little (or should I say huge becasue of how much it's enlarged) heart just can't keep up anymore. Doctors told us it was time to give Ry a PICC (Peripherally Inserted Central Catheter) Line and begin her on a 24 drip medication. The good news is that this should help ease the stress on her heart while we wait for the transplant. This is no small step in our journey though. Ry was immediately bumped to a 1A status on the list. We need that heart ASAP!
The hope was to go home with the PICC. This would mean Ry carries a backpack holding her pump and meds and is simply walking and living life with an IV.
HOWEVER, it has been since Tuesday afternoon that they started the PICC and the meds don't seem to be working at all. We've made no headway and frankly, Gilly and I are terrified. This is the part where I ask all family and friends to pray for some improvement. I'm not sure how much longer we will wait to see signs of the medication taking effect before we try something else. Doctor's have told us to be patient, but Ry's had a couple of rough nights and we feel we're no longer treading water, but starting to go under a bit. They are keeping us in ICU because of the desaturation spells she keeps having.
I unfortunately, have to stop short here because it's almost time to talk to the Doctors.
Please pray for Rylynn.
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