Claire has been doing much better this weekend. We were all thinking the antibiotics would take care of the dirty work in clearing this infection from her body. She's acting well, but internally something is still amiss. Yesterday they ran blood cultures again, expecting them to come back negative--simply meaning the antibiotic is doing it's job in treating the virus and all is well! Turns out one culture was negative and one was still positive (she has 2 organisms/viruses inside). That's not good. Both infections she has should be responsive to this antibiotic, but for some reason, one of them is not responding as it should. Right after dialysis today, they sent us over to the Heart Institute for Claire to have an Echo on her heart. Basically, they hook up monitors to her heart and then do an ultrasound type thing of her heart to check for an infection. The heart is the other place an infection can go and could be the reason one of the cultures is still positive. Hopefully, that will come back negative and there won't be any problems with her heart. Should know more about the results of that echo tomorrow.
Besides the antibiotics they are giving her through her line, they are also going to start "closing" her line with antibiotics. That antibiotic will stay right there in her line so it can work to get rid of any infection even when we're away from the hospital.
They will draw blood cultures again on Thursday and if one is still positive, they will have to pull out her line. Surgery, pull line...surgery, put new line in elsewhere. Not fun. We will be praying for negative blood cultures Thursday.
Tuesday, October 21, 2008
Saturday, October 18, 2008
Trip to the Ememgency Dept
What a whirl-wind the past few days have been. Here's the story.
Claire was doing great on dialysis Wednesday morning. She was her happy, normal self; waving to all the nurses and her fellow friends on dialysis. After about an hour, I could tell she wasn't feeling too well and figured she was just tired. I got her to go to sleep in my arms she slept peacefully for a half hour. When she woke up, I could still tell she wasn't feeling well. The nurses noticed a change in her as well and decided to have the docs come check her out. No one could pinpoint what was wrong; the docs figured it may have been gas. I vented her through her stomach tube and got all the air out of her tummy and we decided to give her a suppository to see if that would relieve any pain she was in. Since her temp was normal, they sent us home and wanted to hear back from me later that afternoon to make sure she had pooped and was doing better.
She took her usual 3 hour nap when we got home and indeed had a good poop after her nap. She seemed to be doing better so I let the nurses know everything was well. She had an okay evening--wanted to be held a lot and was ready for an early bed time, but nothing too abnormal for the evening. Maybe it was just one of those days for her when you've just had a hard day and need some extra rest and attention. We can all relate to that!!
So we put her to bed after starting her on her nightly dialysis. Her heart rate and blood pressure were all within her normal ranges and we figured we were good for the night. My sister, Aleena has been visiting here with us from Monday - Saturday, so after getting Benson in bed, Jared and I ran to the grocery store to grab some milk and things for the next few days. After returning home and getting things settled for the night, I went into check on Claire. I'm sure all you moms out there can relate to the beauty of seeing your sweet kids sleeping soundly!! Sleeping, she was. But not soundly. She was breathing very rapidly, like someone who had just ran a few laps around the track. That wasn't normal. Something was not right. I checked her blood pressure and heart rate again as she was sleeping and it was not good. With a blood pressure of 126/65, a heart rate of 192, and a respiratory rate of 80 breath per minute, I knew something internal was wrong. We took her temp and it was 103.5. We called the Kidney Doctor and all he had to hear was her stats and he told us to get her to the Emergency Dept now.
I packed my bags, we stopped her dialysis, and checked into the ER at the Children's Hospital at 10:30 p.m. Thankfully, Aleena was here with Benson allowing Jared to be able to come with me. I didn't want to have to go by myself if I didn't have to. What a blessing it was to have her here.
Anytime anyone has a direct line to the veins which drop right into the heart there's always the risk on infection. A fever is the first sign of that infection. So if those two things come together (direct line to the heart and a fever) extra precautions are always taken and blood cultures are drawn to test for a possible infection. And that's exactly what happened. Claire's hemo dialysis line goes right through her blood stream and drops into her heart...and she had a fever. The high heart rate/blood pressure come along with the body's defense system to fight off an infection.
So they drew blood cultures on Claire right there in the ER. Before they even knew the results of the cultures (it takes 3 days to get the final results), they start her on antibiotics. They don't want to waste any time of fighting off a possible infection. Jared left to go back home around 2:00 a.m. as he had to work the next morning. Clarie and I finally got taken up to room 830 around 2:30 am and meet with the nurses and doctors there. Sleep (ha ha) finally came for both of us around 4:00.
The docs came in around 7:00 a.m. Thursday and Claire and I went down to do her daily dialysis on the 4th floor at 8:00. She was beyond miserable. Her temp was still high, even with Tylenol, and she was sooooo tired. She slept though much of the 3 hour dialysis treatment. During this time, the docs let me know that she indeed had an infection in her line. If the infection is "bad" the blood cultures will show it within the first 24 hrs. If it's not a "bad" infection, the cultures will show it within 3 days. Her culture was positive within 12 hrs. They said it was really good we came in when we did because in such a little person, those infections work fast and hard. It was already scary enough as it was with how 'sick' she got so quickly. Had we waited till morning the results would have been much worse with the infection going untreated for 10 hours longer. What a blessing that we caught it when we did.
So they continue to treat the infection with antibiotics after each dialysis session. It takes 1 hour to run the first antibiotic through her line and then 30 minutes to run the second. Thursday was a long day in the kidney center. But I guess we didn't have anywhere else to go...besides upstairs back to our room to sleep!!! And we both did finally get some sleep Thursday afternoon. The rule was that we could go home as soon as Claire was feeling better and her fever was gone (without the help of Tylenol).
Jared, Benson, and Aleena brought dinner out (made by a ward member) that night and we all enjoyed being together. Claire was great when the Tylenol was at it's peak...but then as soon as it started to wear down, she was beyond miserable again.
Jared's parents and grandparents were on their way to Branson Missouri and were planning on stopping by our house that night as their half-way point. Instead they came to the hospital. Jared, his Dad, and Grandpa Roberts gave Claire a beautiful blessing. We all felt of the beautiful spirit that attended Claire and felt a special feeling of peace.
Friday was a much better day. Claire and I slept as good as you can at a hospital ((they come in at 12:00 4:00 and 8:00 around the clock to check vital signs: heart rate, blood pressure, and temp)). Sleep and hospital are just not compatible words. We decided to hold off on the Tylenol and see how she was really doing. We went down to the kidney center for her dialysis and so far, no fever. She did much better during dialysis but still slept for half of it. We checked her temp throughout the morning and never once did she spike a temp. YEAH! Home was in sight!!
The thing about babies is that even though they can't verbally tell you how they're doing, you know. There are no lies. It's in their spirits...their interactions, their smile, their eyes. After she woke up from her dialysis and was getting her antibiotics, everyone in the kidney center knew Claire was feeling better. She was waving, smiling, and playing with her toys. No lies there. She indeed was feeling better. The kidney docs came out and knew as well that she was doing better. And with no fevers for the day, they said we could plan on going home that night!!
They will still be treating her infection for the next 2 weeks. The great thing is that we're already there 6 days a week for them to do that! So there's no need for us to stay there in the hospital for them to do that since we can just do it when we're there the next day! I guess there are advantages to being at the hospital so often!
And so we made it home Friday night and both slept like a champ!! Nothing like your own bed and no one getting you up every 4 hours!! Claire is doing much better now. We still have to be extra watchful of her for the next little while in case the infection spreads to any other parts of her body that need to treated differently.
The list of our blessings continue to grow. The day of miracles has not ceased!
Among many things, I am especially grateful this time for a blood pressure/heart rate machine, a simple thermometer, and the beautiful motherly instinct we all have in checking on our little ones sound asleep!
Sleep well...I plan on it tonight!
Claire was doing great on dialysis Wednesday morning. She was her happy, normal self; waving to all the nurses and her fellow friends on dialysis. After about an hour, I could tell she wasn't feeling too well and figured she was just tired. I got her to go to sleep in my arms she slept peacefully for a half hour. When she woke up, I could still tell she wasn't feeling well. The nurses noticed a change in her as well and decided to have the docs come check her out. No one could pinpoint what was wrong; the docs figured it may have been gas. I vented her through her stomach tube and got all the air out of her tummy and we decided to give her a suppository to see if that would relieve any pain she was in. Since her temp was normal, they sent us home and wanted to hear back from me later that afternoon to make sure she had pooped and was doing better.
She took her usual 3 hour nap when we got home and indeed had a good poop after her nap. She seemed to be doing better so I let the nurses know everything was well. She had an okay evening--wanted to be held a lot and was ready for an early bed time, but nothing too abnormal for the evening. Maybe it was just one of those days for her when you've just had a hard day and need some extra rest and attention. We can all relate to that!!
So we put her to bed after starting her on her nightly dialysis. Her heart rate and blood pressure were all within her normal ranges and we figured we were good for the night. My sister, Aleena has been visiting here with us from Monday - Saturday, so after getting Benson in bed, Jared and I ran to the grocery store to grab some milk and things for the next few days. After returning home and getting things settled for the night, I went into check on Claire. I'm sure all you moms out there can relate to the beauty of seeing your sweet kids sleeping soundly!! Sleeping, she was. But not soundly. She was breathing very rapidly, like someone who had just ran a few laps around the track. That wasn't normal. Something was not right. I checked her blood pressure and heart rate again as she was sleeping and it was not good. With a blood pressure of 126/65, a heart rate of 192, and a respiratory rate of 80 breath per minute, I knew something internal was wrong. We took her temp and it was 103.5. We called the Kidney Doctor and all he had to hear was her stats and he told us to get her to the Emergency Dept now.
I packed my bags, we stopped her dialysis, and checked into the ER at the Children's Hospital at 10:30 p.m. Thankfully, Aleena was here with Benson allowing Jared to be able to come with me. I didn't want to have to go by myself if I didn't have to. What a blessing it was to have her here.
Anytime anyone has a direct line to the veins which drop right into the heart there's always the risk on infection. A fever is the first sign of that infection. So if those two things come together (direct line to the heart and a fever) extra precautions are always taken and blood cultures are drawn to test for a possible infection. And that's exactly what happened. Claire's hemo dialysis line goes right through her blood stream and drops into her heart...and she had a fever. The high heart rate/blood pressure come along with the body's defense system to fight off an infection.
So they drew blood cultures on Claire right there in the ER. Before they even knew the results of the cultures (it takes 3 days to get the final results), they start her on antibiotics. They don't want to waste any time of fighting off a possible infection. Jared left to go back home around 2:00 a.m. as he had to work the next morning. Clarie and I finally got taken up to room 830 around 2:30 am and meet with the nurses and doctors there. Sleep (ha ha) finally came for both of us around 4:00.
The docs came in around 7:00 a.m. Thursday and Claire and I went down to do her daily dialysis on the 4th floor at 8:00. She was beyond miserable. Her temp was still high, even with Tylenol, and she was sooooo tired. She slept though much of the 3 hour dialysis treatment. During this time, the docs let me know that she indeed had an infection in her line. If the infection is "bad" the blood cultures will show it within the first 24 hrs. If it's not a "bad" infection, the cultures will show it within 3 days. Her culture was positive within 12 hrs. They said it was really good we came in when we did because in such a little person, those infections work fast and hard. It was already scary enough as it was with how 'sick' she got so quickly. Had we waited till morning the results would have been much worse with the infection going untreated for 10 hours longer. What a blessing that we caught it when we did.
So they continue to treat the infection with antibiotics after each dialysis session. It takes 1 hour to run the first antibiotic through her line and then 30 minutes to run the second. Thursday was a long day in the kidney center. But I guess we didn't have anywhere else to go...besides upstairs back to our room to sleep!!! And we both did finally get some sleep Thursday afternoon. The rule was that we could go home as soon as Claire was feeling better and her fever was gone (without the help of Tylenol).
Jared, Benson, and Aleena brought dinner out (made by a ward member) that night and we all enjoyed being together. Claire was great when the Tylenol was at it's peak...but then as soon as it started to wear down, she was beyond miserable again.
Jared's parents and grandparents were on their way to Branson Missouri and were planning on stopping by our house that night as their half-way point. Instead they came to the hospital. Jared, his Dad, and Grandpa Roberts gave Claire a beautiful blessing. We all felt of the beautiful spirit that attended Claire and felt a special feeling of peace.
Friday was a much better day. Claire and I slept as good as you can at a hospital ((they come in at 12:00 4:00 and 8:00 around the clock to check vital signs: heart rate, blood pressure, and temp)). Sleep and hospital are just not compatible words. We decided to hold off on the Tylenol and see how she was really doing. We went down to the kidney center for her dialysis and so far, no fever. She did much better during dialysis but still slept for half of it. We checked her temp throughout the morning and never once did she spike a temp. YEAH! Home was in sight!!
The thing about babies is that even though they can't verbally tell you how they're doing, you know. There are no lies. It's in their spirits...their interactions, their smile, their eyes. After she woke up from her dialysis and was getting her antibiotics, everyone in the kidney center knew Claire was feeling better. She was waving, smiling, and playing with her toys. No lies there. She indeed was feeling better. The kidney docs came out and knew as well that she was doing better. And with no fevers for the day, they said we could plan on going home that night!!
They will still be treating her infection for the next 2 weeks. The great thing is that we're already there 6 days a week for them to do that! So there's no need for us to stay there in the hospital for them to do that since we can just do it when we're there the next day! I guess there are advantages to being at the hospital so often!
And so we made it home Friday night and both slept like a champ!! Nothing like your own bed and no one getting you up every 4 hours!! Claire is doing much better now. We still have to be extra watchful of her for the next little while in case the infection spreads to any other parts of her body that need to treated differently.
The list of our blessings continue to grow. The day of miracles has not ceased!
Among many things, I am especially grateful this time for a blood pressure/heart rate machine, a simple thermometer, and the beautiful motherly instinct we all have in checking on our little ones sound asleep!
Sleep well...I plan on it tonight!
Saturday, October 11, 2008
PD Dialysis
Along with the hemo dialysis Claire does at the hospital, we also do peritoneal dialysis on her at home every night. Jared and I trained at the hospital for about 2 weeks to learn how to do her PD dialysis. Claire has a catheter that goes into her abdomen (the one hanging down to the floor in the pictures). This fills up her abdomen area (rich with red blood cells) with a dialysis solution that dwells inside of her for an hour and a half. During that dwell time, an exchange of particles takes place-kind of like osmosis. The dialysis solution attracts the waste within her body and exchanges it for some good 'stuff'. Then she goes into a drain cycle. This is when all the waste from her body is then sucked out of her and taken to the drain bag. Then the whole cycles starts all over again. She is filled up with more solution, it dwells for an extended time, and then it is drained out. She goes through 7 of those cycles a night, over a 12 hour time period.
The great thing about it is that she doesn't even know anything is going on! She sleeps like a champ through the night! Our biggest problem is her getting tangled up in the cords as she tosses and turns. She also gets a tube feeding through the night via her stomach G-tube. She gets about 8 ounces of formula during this time. Again, just another tube we gotta keep straight!
One of the greatest downfalls of PD dialysis is that it puts a lot of pressure on her stomach. That solution pushes against her abdominal wall and makes her tummy feel full. Because of this, she is not hungry. 99.9% of what she eats she gets through her G-tube. Kidney failure in babies also contributes to this. So many things are controlled by the kidneys, including the digestive signals that tells you you're hungry. The docs tell us that once she's transplanted, she'll feel hungry again and will learn to eat. But for now, drinking water through a sippie cup and maybe a bite of yogurt is about all we can count on. Besides the 8 ounces of milk though the night, I also feed her about 12 ounces throughout the day in her G-tube.
The great thing about it is that she doesn't even know anything is going on! She sleeps like a champ through the night! Our biggest problem is her getting tangled up in the cords as she tosses and turns. She also gets a tube feeding through the night via her stomach G-tube. She gets about 8 ounces of formula during this time. Again, just another tube we gotta keep straight!
One of the greatest downfalls of PD dialysis is that it puts a lot of pressure on her stomach. That solution pushes against her abdominal wall and makes her tummy feel full. Because of this, she is not hungry. 99.9% of what she eats she gets through her G-tube. Kidney failure in babies also contributes to this. So many things are controlled by the kidneys, including the digestive signals that tells you you're hungry. The docs tell us that once she's transplanted, she'll feel hungry again and will learn to eat. But for now, drinking water through a sippie cup and maybe a bite of yogurt is about all we can count on. Besides the 8 ounces of milk though the night, I also feed her about 12 ounces throughout the day in her G-tube.
Thursday, October 2, 2008
Ten facts about....
me being home alone
1. Showers only take place in the morning. Night showers are scary...especially because I have to blow dry my hair and that's noisy. I need my best ears on to hear of anything suspicious going on.
2. My sense of hearing is instantly enhanced the moment I say good bye to the last person over 18 yrs of age.
3. I look out the peep-hole and windows more frequently just to make sure nothing fishy is going on out there.
4. The basement is only used for necessary ups and downs. No prolonged stays.
5. The house stays clean...not more clean it stays clean altogether!
6. I get a whole lot more done (imagine that).
7. The electricity bill goes up. Keeping all the lights on makes me feel...brighter!
8. I have to consciously stop myself from writing in my head tomorrows news story of how I got stolen the night before.
9. The saying "early to bed, early to rise" is actually doable.
10. Deep down, I really do KNOW I'm going to be okay.
Hurry back from Moab, Jared and Benson!
Wednesday, October 1, 2008
Happy Fall
This is one of my most favorite times of the year! I love the still warm/not hot/cool evening weather, the candy-corns on the kitchen table, and the anticipation of the coming holidays! One of the best parts about this fall has been picking the tomatoes, carrots, and squash from my garden. The spinach was also a BIG favorite but I devoured all of that the first part of this summer! The tomatoes have especially gone out of control! I planted 3 tomato plants and they literally overtook the entire garden! No complaints from me, though. In my opinion, there are few things better in life than a fresh picked tomato from the garden. That's what makes a sandwich SPECTACULAR, a salad UNFORGETTABLE, and an afternoon snack HEALTHY!!
Wednesday, September 24, 2008
Skinner Update
Most of you already know about our family and the unique trials we face. But just to make sure we're all on the same page, I want to give a quick overview of what life is like in the Skinner household. I apologize in advance for the length of this post...there's a lot to say!!
Claire and Benson were both born with an extremely rare genetic mutation in their liver that produces an excess amount of oxalate in their bodies. This disease is called Primary Hyperoxaluria Type 1. (PH1) Oxalate is normal in all of our bodies, but our liver only produces a small amount which then gets converted into whatever it needs to be. Their liver doesn't. Oxalate numbers in you and I is around 1.8. Claire's oxalate is around 64. Benson's is at 11.5. So what does excess oxalate do...it destroys.
The kidneys are the first to go because it is their job to filter waste from the body. In that filtering process, it can only handle the overload of oxalate for so long...until they've had enough and eventually fail. Claire has had kidney failure since she was 2 months old and has been on dialysis ever since. Significant oxalate deposits have also been found in her eyes and bones and is inevitably in other organs as well.
Benson's condition has not progressed as fast as Claire's. His kidneys are still functioning normal. No one knows why kidney failure happens when it does...and in fact, we wouldn't have known about Benson condition had Claire's diagnosis not been made. There are no signs of this disease...kidney failure is usually the first sign anyone has to tell them there's a problem. Biopsy of the kidney then shows the kidney saturated in oxalate crystals and it is then linked to PH1. Close monitoring of Benson's kidney and oxalate levels along with high doses of B6 vitamin (thought to help remove oxalate from the body) is his current treatment. Keeping him well hydrated (2 liters a day) is also very important as that helps keeps his kidneys clean and flushed of the oxalate.
Claire's treatment is a different story. She is currently on hemodialysis (done at the Children's Hospital) 6 days a week for 3 hours each day. Sunday truly is our day of rest!! Along with that, we do a different kind of dialysis, called pertineal dialysis, at home. She gets that done every night of the week for 12 hours (while she's sleeping). Ultimately, dialysis 24/7 would be ideal for Claire to remove the oxalate that is constantly being built up in her body. Obviously, that is not possible...so we do as much as we can! Dialysis is the only way, besides the B6 vitamin, to remove oxalate.
The ultimate cure: transplant! For Claire, getting a new kidney or liver alone will not solve the problem. She needs both. A new liver will stop the excessive oxalate production and new kidneys will allow her to be done with dialysis! With Benson, we are hoping we can salvage his kidneys by monitoring his kidney and oxalate levels closely and transplanting his liver before it causes damage. When to transplant his liver is still a big question.
And that's how things go around here!! Many questions are still unanswered but we are simply doing ALL we can to keep our beautiful kids happy and healthy (aren't we all?!!)
With all that said (and much more to come in future posts...remember that was just to catch everyone up to speed with the last 10 months of our lives!) for Clarie's one-year birthday, Sept. 8, I took our camera to the hospital to video what a day in the life of a not-so-typical one-year old was like! Since Jared and I are the only ones who take Claire to hemodialysis each day, I thought I'd give you a little insight to what it's all about. I must warn you, the video is rather long...sorry about that. Just be happy I didn't record the whole 3 hours we are there! Make sure you are sitting around with nothing else to do (ha ha) before you embark on this adventure! Later, I'll posts pictures of the pertineal dialysis we do at home to let you know what that's all about too!
Enjoy!
Claire and Benson were both born with an extremely rare genetic mutation in their liver that produces an excess amount of oxalate in their bodies. This disease is called Primary Hyperoxaluria Type 1. (PH1) Oxalate is normal in all of our bodies, but our liver only produces a small amount which then gets converted into whatever it needs to be. Their liver doesn't. Oxalate numbers in you and I is around 1.8. Claire's oxalate is around 64. Benson's is at 11.5. So what does excess oxalate do...it destroys.
The kidneys are the first to go because it is their job to filter waste from the body. In that filtering process, it can only handle the overload of oxalate for so long...until they've had enough and eventually fail. Claire has had kidney failure since she was 2 months old and has been on dialysis ever since. Significant oxalate deposits have also been found in her eyes and bones and is inevitably in other organs as well.
Benson's condition has not progressed as fast as Claire's. His kidneys are still functioning normal. No one knows why kidney failure happens when it does...and in fact, we wouldn't have known about Benson condition had Claire's diagnosis not been made. There are no signs of this disease...kidney failure is usually the first sign anyone has to tell them there's a problem. Biopsy of the kidney then shows the kidney saturated in oxalate crystals and it is then linked to PH1. Close monitoring of Benson's kidney and oxalate levels along with high doses of B6 vitamin (thought to help remove oxalate from the body) is his current treatment. Keeping him well hydrated (2 liters a day) is also very important as that helps keeps his kidneys clean and flushed of the oxalate.
Claire's treatment is a different story. She is currently on hemodialysis (done at the Children's Hospital) 6 days a week for 3 hours each day. Sunday truly is our day of rest!! Along with that, we do a different kind of dialysis, called pertineal dialysis, at home. She gets that done every night of the week for 12 hours (while she's sleeping). Ultimately, dialysis 24/7 would be ideal for Claire to remove the oxalate that is constantly being built up in her body. Obviously, that is not possible...so we do as much as we can! Dialysis is the only way, besides the B6 vitamin, to remove oxalate.
The ultimate cure: transplant! For Claire, getting a new kidney or liver alone will not solve the problem. She needs both. A new liver will stop the excessive oxalate production and new kidneys will allow her to be done with dialysis! With Benson, we are hoping we can salvage his kidneys by monitoring his kidney and oxalate levels closely and transplanting his liver before it causes damage. When to transplant his liver is still a big question.
And that's how things go around here!! Many questions are still unanswered but we are simply doing ALL we can to keep our beautiful kids happy and healthy (aren't we all?!!)
With all that said (and much more to come in future posts...remember that was just to catch everyone up to speed with the last 10 months of our lives!) for Clarie's one-year birthday, Sept. 8, I took our camera to the hospital to video what a day in the life of a not-so-typical one-year old was like! Since Jared and I are the only ones who take Claire to hemodialysis each day, I thought I'd give you a little insight to what it's all about. I must warn you, the video is rather long...sorry about that. Just be happy I didn't record the whole 3 hours we are there! Make sure you are sitting around with nothing else to do (ha ha) before you embark on this adventure! Later, I'll posts pictures of the pertineal dialysis we do at home to let you know what that's all about too!
Enjoy!
Monday, September 22, 2008
One BIG disclaimer
I really can't take much credit for the creation of this blog. Thanks to my cousin, Adrian Johnson, for creating the awesome header and background for me! She is AMAZING! I'm so glad she encouraged me to do this! It will be a great way to keep in contact with each of you. Also, Jared and I have decided to make this a private blog--simply meaning that only people who we invite, through e-mail, can read it. So if you have the email addresses of family and friends that I probably don't have, send them to me (nat_skinner@yahoo.com) so I can invite them to see the blog too! Enjoy--and thanks again Adrian!
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