Hi everyone. Just a very quick update. I just spoke with Sarah and she said that Gracie is feeling a little better today. She has been up and playing, and had her OT this morning as well. Let's hope that she keeps feeling better.
Her counts are also still OK. Her WBC count went up to 3.1, but the Neutrophils went down to 1.2. This is still well within expected range. I'm sure the counts will bounce back even more as days go on. Her creatinine clearance ticked up to .83. Not surprising to me, since they gave her a one-time boost with a turbo-diuretic to get her to pee. Her weight is still up, but has been holding steady at least.
One piece of good news that Dr. Orchard shared yesterday while we went through numbers is that Gracie is starting to produce red blood cells on her own. I don't recall why exactly this is a good sign, but I'll look it up. :) Sorry!
Anyway, just thought I'd pass along some better news early in the day.
Uncle Mack
PS - GROW! GROW! GROW! GROW!
Wednesday, June 4, 2008
Day +26 - A Tough One
Gracie just didn't feel well today. She was fussy all day long. She slept a good bit, and played a good bit, but it's clear she is uncomfortable, and not at the top of her game. She needed a few extra bumps of her pain meds to keep her comfortable.
She still vomits sometimes, and doesn't really want anything near her mouth. However, she loves to "brush her teeth." We clean her mouth with these little pink spongy swabs soaked in saline. She gets three swabs about 3-4 times daily. If she had teeth, her dentist would be so proud! It's so cute to watch... awww.
Numbers Update:
It figures that as soon as I show off by posting the critical numbers and Gracie's perfect report card, the white cell counts go down. Today, Gracie's white cell count was 2.7, and her Neutrophils were 1.7 (I think). Her creatinine clearance continued to go down, today at .73. I'll try to update the graphs and post about once a week as well.
At the end of the night, we called the resident in to ask about a few things, most notably some red bumpy rash looking stuff on her knees, and some skin peeling off of her hands. It could be early GVHD and it could be nothing. The resident sat through all of our questions and the answer to most was that she'd discuss it in the AM with the attending(s), which is a fine response because hopefully that means the doc will have thought about it prior to coming in for rounds in the AM.
Dr. Orchard and Teresa Kivisto, the primary doc and nurse running the Hurler patient studies, stopped by today to check in on us. It was great to see them. Dr. Orchard assured us that fluctuation in the cell count numbers is expected, and also noted that Gracie's counts are still relatively high which eased much of our worry. They also said that we have "an impressive blog." At first I was a little surprised and nervous that they read it, but then I was happy they do. It's a great way for them to keep up to date on Gracie's overall progress beyond just the numbers. Plus, we just post the truth as we experience it. :)
Today was a tough day. Seems like when Gracie has a bad day, we all do. By the end of the night, Uncle Mack was so crabby!!! Here's hoping that we all feel better tomorrow - especially Grace. Good night everyone.
She still vomits sometimes, and doesn't really want anything near her mouth. However, she loves to "brush her teeth." We clean her mouth with these little pink spongy swabs soaked in saline. She gets three swabs about 3-4 times daily. If she had teeth, her dentist would be so proud! It's so cute to watch... awww.
Numbers Update:
It figures that as soon as I show off by posting the critical numbers and Gracie's perfect report card, the white cell counts go down. Today, Gracie's white cell count was 2.7, and her Neutrophils were 1.7 (I think). Her creatinine clearance continued to go down, today at .73. I'll try to update the graphs and post about once a week as well.
At the end of the night, we called the resident in to ask about a few things, most notably some red bumpy rash looking stuff on her knees, and some skin peeling off of her hands. It could be early GVHD and it could be nothing. The resident sat through all of our questions and the answer to most was that she'd discuss it in the AM with the attending(s), which is a fine response because hopefully that means the doc will have thought about it prior to coming in for rounds in the AM.
Dr. Orchard and Teresa Kivisto, the primary doc and nurse running the Hurler patient studies, stopped by today to check in on us. It was great to see them. Dr. Orchard assured us that fluctuation in the cell count numbers is expected, and also noted that Gracie's counts are still relatively high which eased much of our worry. They also said that we have "an impressive blog." At first I was a little surprised and nervous that they read it, but then I was happy they do. It's a great way for them to keep up to date on Gracie's overall progress beyond just the numbers. Plus, we just post the truth as we experience it. :)
Today was a tough day. Seems like when Gracie has a bad day, we all do. By the end of the night, Uncle Mack was so crabby!!! Here's hoping that we all feel better tomorrow - especially Grace. Good night everyone.
Tuesday, June 3, 2008
Following Gracie's counts
Just below are a couple of charts so you can see Gracie's progress over time. Also, if you haven't seen the video if Gracie's trip down the hall, scroll down to the Day +25 post.
On the white blood cell chart, it's important to note that the drop after Day +19 is due to the doctors taking Gracie off of growth hormones on Day +17 because her counts were so good, to see if she would start to grow them on her own. Neutrophils are the most important type of white blood cell, so I've highlighted them in blue.
On the Kidney function chart, you see the levels spike when they put her back on the diuretic after taking her off a bit too early (she puffed up a lot). You see it starting to go back down as they've lowered her dose on the diuretic and other medicines, and slightly increased her maintenance fluid levels, which dilute all of the drugs going in.
It's easy to see the dramatic impact that seemingly small changes have on these numbers, as well as the 2 pages of other numbers we are following. It's a delicate balance to keep everything in check.
On the white blood cell chart, it's important to note that the drop after Day +19 is due to the doctors taking Gracie off of growth hormones on Day +17 because her counts were so good, to see if she would start to grow them on her own. Neutrophils are the most important type of white blood cell, so I've highlighted them in blue.
On the Kidney function chart, you see the levels spike when they put her back on the diuretic after taking her off a bit too early (she puffed up a lot). You see it starting to go back down as they've lowered her dose on the diuretic and other medicines, and slightly increased her maintenance fluid levels, which dilute all of the drugs going in.
It's easy to see the dramatic impact that seemingly small changes have on these numbers, as well as the 2 pages of other numbers we are following. It's a delicate balance to keep everything in check.
Another Florida Hurler Baby
Today I learned of another little member of the Florida Hurler Club. He is an adorable little 8 month old boy named Liam. He recently started ERT. Here is the link to his blog. There was also a TV news story on a St. Pete television station about Liam.
http://www.caringbridge.org/visit/liamlarrow
http://www.caringbridge.org/visit/liamlarrow
Monday, June 2, 2008
Day +25... Out and About!
So today was a pretty good day for Gracie. Her counts are up again today. WBC is 3.8 and Neutrophils are 3.0!!! Great numbers again! Her kidney function is slowly improving as well so we're feeling pretty good with our current plan. We changed the dressing over Gracie's new line and she did so well that I thought that she deserved a special prize... a trip out of the room and for a ride in the wagon around the unit hallway!!! Whee! I got a it on video and decided to post a snippet of it here for all of our loved ones to see. Sorry for the crappy camera-work. Mommy had to pull the wagon and videotape it and I am obviously not so good at multitasking. :) Enjoy!
Mommy is a slacker.
Thanks again to Uncle Mack for catching up on the posting the past few days. Mommy has definately been a bit busy and stressed these past few days... and man, do my feet hurt! Thats the trade-off with the crib sleeping.... lots of standing next to the crib for playtime, diapertime, and everything else.
So, t-minus 6 days until our Daddy is back in Minneapolis, and let me tell you... we can hardly wait to see him! It will definately give Mommy a chance at a good break from the hospital night shift, not to mention the fact that Gracie and I both miss him like crazy in general!!! Hurry Daddy, hurry!!!
Ok, so to help Uncle Mack out, I believe that Gracie's counts for today were WBC 3.4 and Neutrophils at 2.7. Very nice numbers.
Her skin around her line is all torn up again... common at this stage since we're entering a phas of extreme skin sensitivity. I feel so badly for her because it obviously is causing her some pain. :( Here's hoping it clears up pretty soon. Our (non-prickly) resident Erin looked at it this afternoon and suggested we get back on the pain meds for a day or so and then came back by our room to bid us farewell as her rotation here on Unit 5-D is up as of tonight. I'll tell you what... we will really miss her.
We're also keeping an eye on Gracie's kidney function right now because they seem to be taking a beating. We're hoping to find the right balance between fluid retention and diuretics and regulation of some of the immune suppressing drug which can be hard on the kidneys as well. I think we're on the right track and hopefully we'll find our sweet spot. Pray that we get there soon.
Other than that, Gracie seems to be feeling ok most of the time. :) I am so thankful to see her smiling so much these days.
So, t-minus 6 days until our Daddy is back in Minneapolis, and let me tell you... we can hardly wait to see him! It will definately give Mommy a chance at a good break from the hospital night shift, not to mention the fact that Gracie and I both miss him like crazy in general!!! Hurry Daddy, hurry!!!
Ok, so to help Uncle Mack out, I believe that Gracie's counts for today were WBC 3.4 and Neutrophils at 2.7. Very nice numbers.
Her skin around her line is all torn up again... common at this stage since we're entering a phas of extreme skin sensitivity. I feel so badly for her because it obviously is causing her some pain. :( Here's hoping it clears up pretty soon. Our (non-prickly) resident Erin looked at it this afternoon and suggested we get back on the pain meds for a day or so and then came back by our room to bid us farewell as her rotation here on Unit 5-D is up as of tonight. I'll tell you what... we will really miss her.
We're also keeping an eye on Gracie's kidney function right now because they seem to be taking a beating. We're hoping to find the right balance between fluid retention and diuretics and regulation of some of the immune suppressing drug which can be hard on the kidneys as well. I think we're on the right track and hopefully we'll find our sweet spot. Pray that we get there soon.
Other than that, Gracie seems to be feeling ok most of the time. :) I am so thankful to see her smiling so much these days.
Sunday, June 1, 2008
Day +24 - Quick Update
Hey guys,
Welcome to June! Crazy, eh? Things in Minneapolis are ok. The weather is absolutely gorgeous today. Of course, yesterday we heard tornado air horns. :) Yesterday was still pretty hard. Gracie doesn't really like her new line placement and really hates the dressing changes - which need to be more frequent due to the new line and increased infection risk. With just me and Sarah here this week, it'll be tough for Sarah, because she essentially can't leave the hospital for more than an hour or two to get cleaned up and unwind. :( I can do a lot and stick it out for a while, but I'm just not Noni. Pray for Sarah's continued good health.
Sarah said the the interventional radiologist stopped by yesterday to apologize about the PACU experience. Not sure if you say testdriver's comment on yesterday's posting, but it was all 100% true. The solution to this problem was easy - just communicate better and do what s best for both Sarah and Grace.
The apology was a nice gesture, and I'm sure it wasn't easy for him to come up and do that. I guess that means I'll need to find a new main course to go with my side of prickly resident. I'd go with fried Zelda, but she was far too sour for my taste. Even a good batter and grease wouldn't change that. :) Let's just hope we don't need to go through anything like that again.
Gracie numbers continue to climb. I don't recall the exact numbers but will get back to you. I just know they are higher than the other day.
OH! I forgot to tell you... Given Sarah's new tough mom, take no shit attitude with the hospital staff, she took another step yesterday... Not sure if you recall this, but at the outset of her hospital admission, Sarah got to observe different staff members on the BMT unit, and pick a primary team of nurses to take care of Gracie. While she knew that we would be dealing with other nurses too, when the chosen nurses are working, they are supposed to work with Gracie.
Well, for the past two nights, one of Sarah's chosen nurses (Holly) has been on the unit but working with other patients. Sarah talked to Holly, who really wants to work with Gracie too, but has been assigned to other patients. Well, last night, Sarah had a little chat with the charge nurse who sets the schedule and assigns patients. In short, she reminded the charge nurse that she went through the process of choosing a team for a reason, and wants to be sure that the unit management is following her wishes. Go Sarah!!!!
Anyway, while we still kept the same nurse last night, Holly stopped by and said that Sarah did the right thing, and that the charge nurse put a note by Gracie's name saying, "Insists on consistent nursing team" so the rest of the managers will see it. The nurse we've had the last two nights is great, so not a huge problem. But still, so proud of Sarah for sticking up for herself and Gracie.
The other change is that Gracie is chillin in the crib now. Belooking for Gracie's MTV Cribs episode soon - She'll show off her tower of IV pumps and tubes, her collection of binkies, the home-made bumpers in the crib, and of course her big screen plasma monitors. Good news is that means there is room for a roll-away cot for Sarah. Bad news is that you spend every waking moment standing up and reaching into the damn crib. My back is killing me, I know Sarah's must be worse...
By the way, congrats to our friend Rylie down the hall on unit 5-D, who just got her engraftment test results the other day and was 100% engrafted with the new cells! Yay Rylie! Keep up the good fight, sugar booger! We are praying for the same success when we get results early this week. :)
OK, clearly uncle mack isn't capable of a "quick" update. :)
Welcome to June! Crazy, eh? Things in Minneapolis are ok. The weather is absolutely gorgeous today. Of course, yesterday we heard tornado air horns. :) Yesterday was still pretty hard. Gracie doesn't really like her new line placement and really hates the dressing changes - which need to be more frequent due to the new line and increased infection risk. With just me and Sarah here this week, it'll be tough for Sarah, because she essentially can't leave the hospital for more than an hour or two to get cleaned up and unwind. :( I can do a lot and stick it out for a while, but I'm just not Noni. Pray for Sarah's continued good health.
Sarah said the the interventional radiologist stopped by yesterday to apologize about the PACU experience. Not sure if you say testdriver's comment on yesterday's posting, but it was all 100% true. The solution to this problem was easy - just communicate better and do what s best for both Sarah and Grace.
The apology was a nice gesture, and I'm sure it wasn't easy for him to come up and do that. I guess that means I'll need to find a new main course to go with my side of prickly resident. I'd go with fried Zelda, but she was far too sour for my taste. Even a good batter and grease wouldn't change that. :) Let's just hope we don't need to go through anything like that again.
Gracie numbers continue to climb. I don't recall the exact numbers but will get back to you. I just know they are higher than the other day.
OH! I forgot to tell you... Given Sarah's new tough mom, take no shit attitude with the hospital staff, she took another step yesterday... Not sure if you recall this, but at the outset of her hospital admission, Sarah got to observe different staff members on the BMT unit, and pick a primary team of nurses to take care of Gracie. While she knew that we would be dealing with other nurses too, when the chosen nurses are working, they are supposed to work with Gracie.
Well, for the past two nights, one of Sarah's chosen nurses (Holly) has been on the unit but working with other patients. Sarah talked to Holly, who really wants to work with Gracie too, but has been assigned to other patients. Well, last night, Sarah had a little chat with the charge nurse who sets the schedule and assigns patients. In short, she reminded the charge nurse that she went through the process of choosing a team for a reason, and wants to be sure that the unit management is following her wishes. Go Sarah!!!!
Anyway, while we still kept the same nurse last night, Holly stopped by and said that Sarah did the right thing, and that the charge nurse put a note by Gracie's name saying, "Insists on consistent nursing team" so the rest of the managers will see it. The nurse we've had the last two nights is great, so not a huge problem. But still, so proud of Sarah for sticking up for herself and Gracie.
The other change is that Gracie is chillin in the crib now. Belooking for Gracie's MTV Cribs episode soon - She'll show off her tower of IV pumps and tubes, her collection of binkies, the home-made bumpers in the crib, and of course her big screen plasma monitors. Good news is that means there is room for a roll-away cot for Sarah. Bad news is that you spend every waking moment standing up and reaching into the damn crib. My back is killing me, I know Sarah's must be worse...
By the way, congrats to our friend Rylie down the hall on unit 5-D, who just got her engraftment test results the other day and was 100% engrafted with the new cells! Yay Rylie! Keep up the good fight, sugar booger! We are praying for the same success when we get results early this week. :)
OK, clearly uncle mack isn't capable of a "quick" update. :)
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