Wednesday, August 31, 2011
The Numbers Game
Boo continues to make improvements. His blood work shows steady gains in red blood cell and platelet counts. The real key is to make sure urine output continues and increases in conjunction with steadily improving numbers indicating proper kidney functioning. Thus far this happening.
Tuesday, August 30, 2011
Hall Pass
We did it. We took Boo out of the hospital for the first time in 11 days. We met my dad, Penny, Daniel and Carmen at U Village. Seeing his brother and sister in a stimulating environment proved a little more than Boo could handle so we came back after 30 minutes. That's about what we anticipated.
Oh yeah, and he pooped today. Twice. The first one already came back negative for the E. coli bacteria. We should know in the morning about the second. Assuming it's negative we'll drop the "contact isolation" restriction within the hospital, allowing us access to the family centers and play areas.
Today was the day were waited for all last week. (Large exhale) Finally.
Boo Belly
Here are a few pictures of Boo taken about a month ago. He's since lost that little Buddha belly and leg definition. Don't ask me to explain the pictures. Just enjoy the fact it's Boo being Boo.
2 down, 1 to go
Just received official word from the Health Department:
-Daniel tested negative for E. coli. He never had it.
-Carmen submitted two test. The first was positive and the second negative which means it cleared her system between the tests. They now consider her completely free and clear of E. coli and non-contagious.
It's been a great day!
-Daniel tested negative for E. coli. He never had it.
-Carmen submitted two test. The first was positive and the second negative which means it cleared her system between the tests. They now consider her completely free and clear of E. coli and non-contagious.
It's been a great day!
Keep Rolling, Boo
-Dialysis went really well this morning. Having the new line is way easier and comfortable for him.
-He had a pee-pee diaper this morning which is great. He's increasing pee output everyday.
-He ditched all his monitoring devices: no wires, no IV
-All future blood samples can be taken from his dialysis line which means no more pokes!
-No dialysis tomorrow. Another welcomed day off.
-We now get hall-passes from the hospital. We may take a quick trip to U Village if he's up to it later.
-He's eating more and more. The twinkle in his eyes is slowly returning. He's talking more, interacting with us more and expressing a desire to color, read, paint, etc.
-No official word but I have a feeling we'll be out of here before the end of the week. He may continue dialysis but he can do it as an out-patient.
-He had a pee-pee diaper this morning which is great. He's increasing pee output everyday.
-He ditched all his monitoring devices: no wires, no IV
-All future blood samples can be taken from his dialysis line which means no more pokes!
-No dialysis tomorrow. Another welcomed day off.
-We now get hall-passes from the hospital. We may take a quick trip to U Village if he's up to it later.
-He's eating more and more. The twinkle in his eyes is slowly returning. He's talking more, interacting with us more and expressing a desire to color, read, paint, etc.
-No official word but I have a feeling we'll be out of here before the end of the week. He may continue dialysis but he can do it as an out-patient.
Rays of Sun
Boo's dinner last night was a four course meal consisting of various desserts, each one richer than the previous. He then watched cartoons until he couldn't keep his eyes open. I certainly hope he forgets the content because some of the late night cartoons are anything but age appropriate for Boo. He's even to sleep through all the nightly vitals checks.
We're off to dialysis.
We're off to dialysis.
Monday, August 29, 2011
Good Day
He's back. And a little stoned from all the medicine.
His procedure went well. They removed the line sticking out of his neck like an errant dart and replaced it with what appear to be jumper cables sticking out of his chest. His platelets are still low so we need to keep an eye on bleeding but all-in-all he's good to go.
We also received some encouraging news from our new doctor. His platelet count, which had been in the 20's, was in the 50's this morning. That's great news because it's generally the first indicator of improvement. Yes!!!
His procedure went well. They removed the line sticking out of his neck like an errant dart and replaced it with what appear to be jumper cables sticking out of his chest. His platelets are still low so we need to keep an eye on bleeding but all-in-all he's good to go.
We also received some encouraging news from our new doctor. His platelet count, which had been in the 20's, was in the 50's this morning. That's great news because it's generally the first indicator of improvement. Yes!!!
One Down, One to Go
Dialysis is done. It went much better today, mainly because we gave him Benadryl at the beginning and it calmed him down. He even fell asleep for a while. During his dialysis they gave him a blood transfusion, platelets and a dose of EPO. The EPO helps promote red blood cell growth.
The transfusion makes a big difference. He has way more color and the hint of a twinkle in his eye. We're still scheduled for his new line around 12:30 today. I'll breathe a little easier once that's over.
The transfusion makes a big difference. He has way more color and the hint of a twinkle in his eye. We're still scheduled for his new line around 12:30 today. I'll breathe a little easier once that's over.
Sunday, August 28, 2011
Perspective
A couple years ago we found a new home for Merlin, our beloved black lab. It was a tough decision, but the right decision. His new family offered the perfect home- kids to entertain him, an active lifestyle sure to burn off his excess energy and most of all a loving commitment to care for our first baby.
We were fortunate to remain open and friendly with is new family and they were kind enough to let Merlin visit us a few times per year. We couldn't believe how much better behaved he was on his first visit home. They were obviously better masters than Mollie or I could ever hope to be.
They started a special Facebook page just for Merlin and Mollie received regular texts/emails from Katrina (Merlin's new mom) updating us on Merlin and his new family. Rather quickly the emails started paving a friendship centered not just around Merlin but around being moms and raising kids. Katrina Lewis and her husband, Jason, have an adult son and two girls- Marissa, age 13 and Sophia, age 3 (Boo's age).
So what do Merlin and his new family have to do with Boo? Why am I sharing this story? Because as bad as our situation with Boo might appear, their situation is 100x worse.
-Last summer Katrina miss-carried half-way through her pregnancy
-In September Jason got laid off from his job
-Sophia has grown up a frequent visitor to the hospital. In late September or early October she was diagnosed with Intussusecption (this was an early concern when we first brought Boo to the hospital. It's where the intestines kaleidoscopes in on itself), migraines, food allergies and inexplicable joint pain
-Katrina became pregnant last February and has been on bed rest since March
-Because Jason wasn't working and couldn't find a job, they lost their house in July
-Their church graciously rented a temporary house. It's located next to a rail line where trains all night.
-The first night they were in the rental house a pipe burst and leaked throughout the living room.
-Marissa used to spend her time riding horses and travelling with her dad on business trips. Now, due to Katrina's bed rest, she's busy helping her dad raise her younger sister. And she even helped move from their old house to the rental. Neither are jobs for a 13 year old.
-Sophia, as I said earlier, is constantly in pain due to Intussusecption, constant migraines and inexplicable joint pain. And she's acutely allergic to most foods.
-Katrina is 31 weeks pregnant, been on bed rest most of the time due to placenta previa, has gestational diabetes, a kidney infection, and gallstones. She's 90% effaced and has contractions every three minutes. She goes to the hospital a few days per week for monitoring and they're worried about the overall health of the baby, Lily. Lily is having decelerations and is also under constant monitoring.
-All of this and they don't have insurance. It's to the point where they can't even afford gas to drive to the hospital for necessary monitoring.
-Jason served as the Vice President- Pacific Region for American Waterways Operators, the eyes, ears and voice of the tugboat, towboat and barge industry until he lost his job last September. He's tried getting jobs but is generally so over-qualified potential employers fear he'll quickly leave once he finds a better job.
Unfortunately the list could go on. These are good people going through a very bad ordeal. They don't even have family around to help and support them. You're probably still wondering what this has to do with Boo. Everything. We have the financial means to handle Boo's condition. Mollie and I both have families bending over backwards to help. We have so many people offering to make/bring us food we had to put Sarah LeClercq in charge of managing it. We even have the happiest nurses because of all the great treats people want to bring. You should see all the balloons and toys filling Boo's room. It's heartwarming. But it's also a little heart breaking because we know the Lewis family doesn't have it half as good as we do.
Spending so much time in and around the hospital has given us a new appreciation on health and a new perspective on how good we have it. The last thing on our mind is whether we can afford to put gas in the car to drive to/from the hospital. Can you imagine?!
Many of you have asked, and continue to ask, how you can help. The dinners, hospital visits, toys for Boo and treats for Boo have been fantastic and greatly appreciated. But Mollie and I think it's time to pay-it-forward. It's time to reach out and help the people who really need it.
For those of you who really want to help us, instead, help the Lewis family. They're the ones in need. There are a number of ways you can help:
-job leads for Jason (His resume his posted below)
-gas card
-grocery store gift card
-Costco gift card
-money
-other
Boo is sick but he'll quickly recover. The Lewis family has a long road to recovery. If possible please help:
The Lewis Family
8342 49th Loop SE
Olympia, WA 98513
Thanks,
-Nate and Mollie
We were fortunate to remain open and friendly with is new family and they were kind enough to let Merlin visit us a few times per year. We couldn't believe how much better behaved he was on his first visit home. They were obviously better masters than Mollie or I could ever hope to be.
They started a special Facebook page just for Merlin and Mollie received regular texts/emails from Katrina (Merlin's new mom) updating us on Merlin and his new family. Rather quickly the emails started paving a friendship centered not just around Merlin but around being moms and raising kids. Katrina Lewis and her husband, Jason, have an adult son and two girls- Marissa, age 13 and Sophia, age 3 (Boo's age).
So what do Merlin and his new family have to do with Boo? Why am I sharing this story? Because as bad as our situation with Boo might appear, their situation is 100x worse.
-Last summer Katrina miss-carried half-way through her pregnancy
-In September Jason got laid off from his job
-Sophia has grown up a frequent visitor to the hospital. In late September or early October she was diagnosed with Intussusecption (this was an early concern when we first brought Boo to the hospital. It's where the intestines kaleidoscopes in on itself), migraines, food allergies and inexplicable joint pain
-Katrina became pregnant last February and has been on bed rest since March
-Because Jason wasn't working and couldn't find a job, they lost their house in July
-Their church graciously rented a temporary house. It's located next to a rail line where trains all night.
-The first night they were in the rental house a pipe burst and leaked throughout the living room.
-Marissa used to spend her time riding horses and travelling with her dad on business trips. Now, due to Katrina's bed rest, she's busy helping her dad raise her younger sister. And she even helped move from their old house to the rental. Neither are jobs for a 13 year old.
-Sophia, as I said earlier, is constantly in pain due to Intussusecption, constant migraines and inexplicable joint pain. And she's acutely allergic to most foods.
-Katrina is 31 weeks pregnant, been on bed rest most of the time due to placenta previa, has gestational diabetes, a kidney infection, and gallstones. She's 90% effaced and has contractions every three minutes. She goes to the hospital a few days per week for monitoring and they're worried about the overall health of the baby, Lily. Lily is having decelerations and is also under constant monitoring.
-All of this and they don't have insurance. It's to the point where they can't even afford gas to drive to the hospital for necessary monitoring.
-Jason served as the Vice President- Pacific Region for American Waterways Operators, the eyes, ears and voice of the tugboat, towboat and barge industry until he lost his job last September. He's tried getting jobs but is generally so over-qualified potential employers fear he'll quickly leave once he finds a better job.
Unfortunately the list could go on. These are good people going through a very bad ordeal. They don't even have family around to help and support them. You're probably still wondering what this has to do with Boo. Everything. We have the financial means to handle Boo's condition. Mollie and I both have families bending over backwards to help. We have so many people offering to make/bring us food we had to put Sarah LeClercq in charge of managing it. We even have the happiest nurses because of all the great treats people want to bring. You should see all the balloons and toys filling Boo's room. It's heartwarming. But it's also a little heart breaking because we know the Lewis family doesn't have it half as good as we do.
Spending so much time in and around the hospital has given us a new appreciation on health and a new perspective on how good we have it. The last thing on our mind is whether we can afford to put gas in the car to drive to/from the hospital. Can you imagine?!
Many of you have asked, and continue to ask, how you can help. The dinners, hospital visits, toys for Boo and treats for Boo have been fantastic and greatly appreciated. But Mollie and I think it's time to pay-it-forward. It's time to reach out and help the people who really need it.
For those of you who really want to help us, instead, help the Lewis family. They're the ones in need. There are a number of ways you can help:
-job leads for Jason (His resume his posted below)
-gas card
-grocery store gift card
-Costco gift card
-money
-other
Boo is sick but he'll quickly recover. The Lewis family has a long road to recovery. If possible please help:
The Lewis Family
8342 49th Loop SE
Olympia, WA 98513
Thanks,
-Nate and Mollie
Saturday, August 27, 2011
The Tables Are Turned
Boo has spent a large amount of time under the stethoscope, heart rate monitor and needle this last week. He just received a little Play School doctor kit with his very own stethoscope, thermometer, syringe, eye examiner, heart rate monitor and band aid. He's more than happy to turn the tables on mom and dad.
In Good Hands
Seattle Children's Hospital ranked #2 in the country for Pediatrics: Nephrology. Nice knowing we're in good hands.
Link if interested: http://health.usnews.com/best-hospitals/seattle-children%27s-hospital-6910560
Link if interested: http://health.usnews.com/best-hospitals/seattle-children%27s-hospital-6910560
Ugh
Just got back from dialysis. It was awful. He was on the machine for 90 minutes and he spent the first 45 minutes crying and trying to get out of the seat. He kept screaming to, "Get out of here! I want to go! I want to get out of here!" They finally gave him some Benadryl and he calmed down. It sounds like we get to take tomorrow off from dialysis. It's a welcomed break especially after today.
Fun fact: during today's session they circulated just over 2 gallons of his blood through the machine over a 90 minute period.
Fun fact: during today's session they circulated just over 2 gallons of his blood through the machine over a 90 minute period.
Friday, August 26, 2011
Health Department
Throughout our hospital stay I've been in contact with the Health Department. While the hospital was quick to diagnose E. coli 0157:H7 the health department requires a little more time.
There are two tests they run when looking for E. coli.
Test 1
This test looks for the presence of a shiga-toxin associated with E. coli. It's not actually testing for E. coli. This test takes about a day.
Test 2
With this test they can confirm E. coli and the which strain of E. coli. It takes 5-7 days for results.
I just received word today the Health Department officially declared Boo positive for E. coli 0157:H7. We've know this for some time but he now officially becomes a statistic.
As for Carmen we won't know definitively for a few more days. Although, there were some interesting initial results. Carmen gave samples on two different days. One last Friday, the day we came to the hospital with Boo. The second on the following Monday. According to the Health Department she tested positive for the presence of the shiga-toxin in the first sample but negative in the second sample.
So what does that mean? She was probably on the tail end of the symptoms and her body flushed out all the toxins between the two samples. And that would be great news. But it takes time to get the final results. As always we're waiting. Not that it matters at this point. She's fine.
There are two tests they run when looking for E. coli.
Test 1
This test looks for the presence of a shiga-toxin associated with E. coli. It's not actually testing for E. coli. This test takes about a day.
Test 2
With this test they can confirm E. coli and the which strain of E. coli. It takes 5-7 days for results.
I just received word today the Health Department officially declared Boo positive for E. coli 0157:H7. We've know this for some time but he now officially becomes a statistic.
As for Carmen we won't know definitively for a few more days. Although, there were some interesting initial results. Carmen gave samples on two different days. One last Friday, the day we came to the hospital with Boo. The second on the following Monday. According to the Health Department she tested positive for the presence of the shiga-toxin in the first sample but negative in the second sample.
So what does that mean? She was probably on the tail end of the symptoms and her body flushed out all the toxins between the two samples. And that would be great news. But it takes time to get the final results. As always we're waiting. Not that it matters at this point. She's fine.
Treats
We can't thank enough people for all the help they've provided and offered. Everyone wants to help and we've found a great way people can get involved. We simply can't say enough good things about the quality of care received at Children's Hospital. At every turn and at every level the resources have been amazing. Our doctors are amazing and are world class.
But I have to give special recognition to the nursing staff. They are phenomenal!!! And they really enjoy treats. So while we organize on-going support one thing people could do is make treats we can hand out at the hospital. Cookies, cakes, pies, etc. It's a nice gesture and it keeps us in the good graces of the nurses.
If you're interested please email me.
natebahner@gmail.com
But I have to give special recognition to the nursing staff. They are phenomenal!!! And they really enjoy treats. So while we organize on-going support one thing people could do is make treats we can hand out at the hospital. Cookies, cakes, pies, etc. It's a nice gesture and it keeps us in the good graces of the nurses.
If you're interested please email me.
natebahner@gmail.com
The Duck
Our doctor came in to check in on Boo and fill us in on what's happening.
-He received a blood transfusion today during dialysis
-His numbers are still trending the wrong direction (expected)
-We're giving him Tums (sodium carbonate, liquid form) to help ease stomach discomfort and bind to phosphorus. Phosphorus is filtered by the kidneys. Phosphorus and calcium need to stay in a certain ratio and this will preserve the ratio.
-He's getting a drug called EPO (that's what I'm calling, there's an actually medical term with 11 syllables). He'll get this during dialysis, so like the blood transfusions so it doesn't add a noticeable procedure.
Boo received a goose hand-puppet this morning. Mollie was laying (lying? Stupid english) in bed with Boo as the doctor was talking with us. Boo was getting tired and rolled over to cuddle with Mollie. A couple times while we were talking he'd raise his goose arm and open/close the mouth, in essence telling us to be quiet. Mollie and I started laughing along with the doctor. It's one of those you-had-to-be-there moments but the poor doctor couldn't stop laughing. Here we are trying to have a very serious conversation about Boo's condition, possible side effects and the new treatments and the doctor is trying not to laugh which is making her laugh even harder. Every once in a while we get a good shot of the old, healthy Boo.
-He received a blood transfusion today during dialysis
-His numbers are still trending the wrong direction (expected)
-We're giving him Tums (sodium carbonate, liquid form) to help ease stomach discomfort and bind to phosphorus. Phosphorus is filtered by the kidneys. Phosphorus and calcium need to stay in a certain ratio and this will preserve the ratio.
-He's getting a drug called EPO (that's what I'm calling, there's an actually medical term with 11 syllables). He'll get this during dialysis, so like the blood transfusions so it doesn't add a noticeable procedure.
Boo received a goose hand-puppet this morning. Mollie was laying (lying? Stupid english) in bed with Boo as the doctor was talking with us. Boo was getting tired and rolled over to cuddle with Mollie. A couple times while we were talking he'd raise his goose arm and open/close the mouth, in essence telling us to be quiet. Mollie and I started laughing along with the doctor. It's one of those you-had-to-be-there moments but the poor doctor couldn't stop laughing. Here we are trying to have a very serious conversation about Boo's condition, possible side effects and the new treatments and the doctor is trying not to laugh which is making her laugh even harder. Every once in a while we get a good shot of the old, healthy Boo.
A Word From Boo
Boo had dialysis and his first blood transfusion this morning. He generally comes back from dialysis and eats a little so for an hour or two after dialysis he's pretty spunky (relatively speaking). He's a little sample:
Thursday, August 25, 2011
A Little Lul
No medical updates. To a large extent I need a breather from all the medical terminology, labs, numbers, etc. Boo is still very sick but closely monitored. Medically there isn't a lot we can do. It's a waiting game to see how long it takes Boo's body to bounce back. The sooner the better but it's out of our hands.
I've been so focused on the results I've been a bit negligent in talking about Boo. As in Boo the little three and a half year old kid suffering not only emotionally but physically. He's exhausted. He's run down. And he's a sick little boy. His kidney's aren't working. His blood is under assault. And his life hangs in the balance of the doctors (and nurses) and their ability to medically compensate for his symptoms.
He's pretty tolerant of this whole experience but on those occasions where the pain is too much he has one request: he wants to go home. I know, Boo. So do I.
I've been so focused on the results I've been a bit negligent in talking about Boo. As in Boo the little three and a half year old kid suffering not only emotionally but physically. He's exhausted. He's run down. And he's a sick little boy. His kidney's aren't working. His blood is under assault. And his life hangs in the balance of the doctors (and nurses) and their ability to medically compensate for his symptoms.
He's pretty tolerant of this whole experience but on those occasions where the pain is too much he has one request: he wants to go home. I know, Boo. So do I.
Dialysis Day 2
The ups and downs of HUS:
-Boo ate a little carton of strawberries last night. And drink a few ounces. These little signs of life are welcomed.
-Boo slept from 10pm until 8am this morning at which point we actually had to wake him up for dialysis.
-Dialysis went well. His line is tender and awkward but he tolerates it fairly well.
-We just got his lab results and all the numbers remained about the same or went the wrong way. This was expected. Tomorrow he'll receive his first blood transfusion. This occurs during dialysis so it doesn't introduce an additional procedure.
-He had a fairly healthy appetite this morning. He even voiced excitement about eating eggs and toast.
-He's regaining a little color, especially in his lips. He's a little more swollen today but his blood pressure is normal so it's not a major concern.
-The plan is to perform daily dialysis until his kidneys start functioning on their own.
-Assuming Boo and his kidneys don't make a quick improvement he's scheduled to switch to the "permanent" dialysis line Monday at 12:30.
Takeaway points and big picture thoughts:
The HUS symptoms are progressing as predicted. Boo slept great last night and ate a solid breakfast this morning. Both factors should give him a little more energy. Thus far all the supposed "worst case scenarios" happened and we're effectively managing them. Right now it feels as though we've switched from crisis mode and moved to monitoring and treating. Mollie and I are setting sleep schedules so we don't get too run down. It's still one day at a time but the burden constant crisis has lifted.
There are so many people to thank but we want to shine a special spot light on our parents.
-We can't thank my dad and Penny enough for taking Daniel and Carmen. Penny took a week of from work to help.
-My mom has also been a great support and a good sounding board. Boo won't run short of books or movies thanks to Granny Ina.
-Not enough good things can be said about Bubba (my dad) and Pappa (Mollie's dad). They've done everything from taking early and/or late shifts, helping manage yesterday's crisis, managing all the pets at home and providing constant moral support. They've been there at every turn.
-Boo ate a little carton of strawberries last night. And drink a few ounces. These little signs of life are welcomed.
-Boo slept from 10pm until 8am this morning at which point we actually had to wake him up for dialysis.
-Dialysis went well. His line is tender and awkward but he tolerates it fairly well.
-We just got his lab results and all the numbers remained about the same or went the wrong way. This was expected. Tomorrow he'll receive his first blood transfusion. This occurs during dialysis so it doesn't introduce an additional procedure.
-He had a fairly healthy appetite this morning. He even voiced excitement about eating eggs and toast.
-He's regaining a little color, especially in his lips. He's a little more swollen today but his blood pressure is normal so it's not a major concern.
-The plan is to perform daily dialysis until his kidneys start functioning on their own.
-Assuming Boo and his kidneys don't make a quick improvement he's scheduled to switch to the "permanent" dialysis line Monday at 12:30.
Takeaway points and big picture thoughts:
The HUS symptoms are progressing as predicted. Boo slept great last night and ate a solid breakfast this morning. Both factors should give him a little more energy. Thus far all the supposed "worst case scenarios" happened and we're effectively managing them. Right now it feels as though we've switched from crisis mode and moved to monitoring and treating. Mollie and I are setting sleep schedules so we don't get too run down. It's still one day at a time but the burden constant crisis has lifted.
There are so many people to thank but we want to shine a special spot light on our parents.
-We can't thank my dad and Penny enough for taking Daniel and Carmen. Penny took a week of from work to help.
-My mom has also been a great support and a good sounding board. Boo won't run short of books or movies thanks to Granny Ina.
-Not enough good things can be said about Bubba (my dad) and Pappa (Mollie's dad). They've done everything from taking early and/or late shifts, helping manage yesterday's crisis, managing all the pets at home and providing constant moral support. They've been there at every turn.
Wednesday, August 24, 2011
Lobster Claw 2.0
What A Day
Wow!!! Finally sat down from just after I wrote the post this morning. Here's how it played out:
-Boo's condition continued their downward trend. This was anticipated but still hard to hear.
-His doctors decided to install a catheter in his chest. It wasn't a matter of "if" Boo would need dialysis but "when" he would need it.
-About the same time I learned about Boo's catheter I learned Carmen tested positive for a toxin associated with E. Coli and would require a blood test.
-One option was to take her to the pediatrician. The other option was Children's. We decided to bring her to Children's because the test results would come back sooner and if for some reason something showed up on the test she would have immediate access to excellent care.
-There are two types of catheters for Boo. One is considered "temporary" while the other is considered "permanent." The surgeon expressed concern about using the permanent catheter because of the potential for it to "ooze" (low platelet numbers mean the blood doesn't clot as well) and create discomfort and potential infection. The only problem is now the tubes stick out of his neck and aren't as secure as the "permanent" type.
-Carmen's blood work came back great. Everything is perfect. She was officially discharged from the hospital. Right now we're 1 for 2 on discharges!
-Boo's surgery went well and they took him directly to dialysis.
-(Deep breath) Okay. Wow. That was a pretty big day. Hopefully we're rounding the corner.
-Still no timeline but I'll throw out 10-14 days. Maybe less, maybe more.
-Boo can eat and drink a little now that he's on dialysis. He's really happy about that!
-Boo's condition continued their downward trend. This was anticipated but still hard to hear.
-His doctors decided to install a catheter in his chest. It wasn't a matter of "if" Boo would need dialysis but "when" he would need it.
-About the same time I learned about Boo's catheter I learned Carmen tested positive for a toxin associated with E. Coli and would require a blood test.
-One option was to take her to the pediatrician. The other option was Children's. We decided to bring her to Children's because the test results would come back sooner and if for some reason something showed up on the test she would have immediate access to excellent care.
-There are two types of catheters for Boo. One is considered "temporary" while the other is considered "permanent." The surgeon expressed concern about using the permanent catheter because of the potential for it to "ooze" (low platelet numbers mean the blood doesn't clot as well) and create discomfort and potential infection. The only problem is now the tubes stick out of his neck and aren't as secure as the "permanent" type.
-Carmen's blood work came back great. Everything is perfect. She was officially discharged from the hospital. Right now we're 1 for 2 on discharges!
-Boo's surgery went well and they took him directly to dialysis.
-Still no timeline but I'll throw out 10-14 days. Maybe less, maybe more.
-Boo can eat and drink a little now that he's on dialysis. He's really happy about that!
Carmen
There is a little confusion surrounding Carmen at this point. Initial results on her stool sample show it is not E. coli 0157:H7 (the same strain as Boo). Instead it is some other bacteria infection. Nothing worrisome.
But the health department hasn't ruled E. coli out yet and their final results may take a couple days. Our pediatrician scheduled a visit for her today to run blood tests looking at the same things we're tracking with Boo. But in talking with him we both decided to error on the side of caution and bring her to Children's. We should be able to get the test results soon. And in the unlikely event there's evidence of changes in her blood she'll have immediate access to doctors.
Yes, I'm worried but in an optimistic way. Her symptoms aren't following the same timeline as Boo's and there has been no evidence of blood in her stool. Those are great signs. She has been feeling great and this is all precautionary simply due to what we know about Boo.
Daniel has zero symptoms. He never felt sick. Never had diarrhea. Hasn't had blood in his stool. There are zero signs and zero evidence he has E. coli or any other bacteria for that matter.
But the health department hasn't ruled E. coli out yet and their final results may take a couple days. Our pediatrician scheduled a visit for her today to run blood tests looking at the same things we're tracking with Boo. But in talking with him we both decided to error on the side of caution and bring her to Children's. We should be able to get the test results soon. And in the unlikely event there's evidence of changes in her blood she'll have immediate access to doctors.
Yes, I'm worried but in an optimistic way. Her symptoms aren't following the same timeline as Boo's and there has been no evidence of blood in her stool. Those are great signs. She has been feeling great and this is all precautionary simply due to what we know about Boo.
Daniel has zero symptoms. He never felt sick. Never had diarrhea. Hasn't had blood in his stool. There are zero signs and zero evidence he has E. coli or any other bacteria for that matter.
Line Placement
Frankly I've been too tired and busy to post lab results. The short of the the long is this:
-Boo's labs keep showing further development of HUS
-Red blood cell counts are going down (bad)
-Creatinine is rising (bad, but this is in conjunction with symptoms so it's not a important as other numbers)
-Platelets stayed about the same (good)
-Still no urine output (bad)
-Potassium is increasing (very bad, in addition to his body's inability to process what he already has, when red blood cells are broken down they release potassium)
Boo is going to get a line placement today. This is where they put a catheter into a main vein by the neck. The tube actually enters in the upper chest near the shoulder and then they snake it under the skin to the neck.
Depending on his potassium levels he may require dialysis today.
He's looking a little swollen today because he's not outputting liquids besides normal forms of liquid loss due to sweat, breathing, etc.
We don't know when they'll perform the line placement but he has to be put under during the procedure. We don't know if he'll require dialysis today but it appears he probably need it at some point. It's a matter of when.
-Boo's labs keep showing further development of HUS
-Red blood cell counts are going down (bad)
-Creatinine is rising (bad, but this is in conjunction with symptoms so it's not a important as other numbers)
-Platelets stayed about the same (good)
-Still no urine output (bad)
-Potassium is increasing (very bad, in addition to his body's inability to process what he already has, when red blood cells are broken down they release potassium)
Boo is going to get a line placement today. This is where they put a catheter into a main vein by the neck. The tube actually enters in the upper chest near the shoulder and then they snake it under the skin to the neck.
Depending on his potassium levels he may require dialysis today.
He's looking a little swollen today because he's not outputting liquids besides normal forms of liquid loss due to sweat, breathing, etc.
We don't know when they'll perform the line placement but he has to be put under during the procedure. We don't know if he'll require dialysis today but it appears he probably need it at some point. It's a matter of when.
Tuesday, August 23, 2011
Carmen
Just got a message from our pediatrician's office regarding Carmen's stool sample. It tested positive for E. coli. One more thing to monitor.
Edit @ 8:45pm
I didn't make it clear that Carmen is doing fine. She's acting fine, feeling fine and appearing fine. She is staying with my dad and will follow up with her pediatrician but doesn't require immediate attention. We'll keep an eye on her but aren't terribly concerned.
Edit @ 8:45pm
I didn't make it clear that Carmen is doing fine. She's acting fine, feeling fine and appearing fine. She is staying with my dad and will follow up with her pediatrician but doesn't require immediate attention. We'll keep an eye on her but aren't terribly concerned.
Things Are Looking Up
We met with the Nephrologists this afternoon. They were very supportive and informative. Some takeaway points:
-Boo is in a good position right now. He's properly hydrated which is really critical.
-Boo just had blood drawn and we'll get the results later tonight. We're looking for platelet levels to start rising. That typically indicates turning the corner. There is no set timeline at this point. Recovery might occur in a few days or a few weeks.
-We're closely following his electrolytes. Among other things the kidneys process sodium and potassium. A build up either can have negative side effects.
-All symptoms and complications can be handled. HUS isn't treated as much as it's supported. All treatment methods simply allow the body to heal itself, they don't actually treat HUS.
-Boo's off the IV and drinking on his own. He should be drinking 750 ml (a bottle of wine) every 24 hours. What he doesn't do orally will be supplemented by IV.
-Boo's showing signs of spunk. The concern is he in a healthy window: recovering from the diarrhea but not yet suffer some of the HUS side effects.
-We don't know if/when Boo might require blood transfusions or dialysis.
Here's a little (admittedly, boring) video of Boo showing signs of life:
-Boo is in a good position right now. He's properly hydrated which is really critical.
-Boo just had blood drawn and we'll get the results later tonight. We're looking for platelet levels to start rising. That typically indicates turning the corner. There is no set timeline at this point. Recovery might occur in a few days or a few weeks.
-We're closely following his electrolytes. Among other things the kidneys process sodium and potassium. A build up either can have negative side effects.
-All symptoms and complications can be handled. HUS isn't treated as much as it's supported. All treatment methods simply allow the body to heal itself, they don't actually treat HUS.
-Boo's off the IV and drinking on his own. He should be drinking 750 ml (a bottle of wine) every 24 hours. What he doesn't do orally will be supplemented by IV.
-Boo's showing signs of spunk. The concern is he in a healthy window: recovering from the diarrhea but not yet suffer some of the HUS side effects.
-We don't know if/when Boo might require blood transfusions or dialysis.
Here's a little (admittedly, boring) video of Boo showing signs of life:
Doctor Change
It hasn't officially happened yet but it looks like we will be changing doctors. Our current team of doctors are generalists whereas our new doctors are from the Nephrologists. Nephrologists specialize in the kidneys. And our main concern right now is kidney function. We should learn more when we meet with the new doctors.
HUS
I was in the middle of writing a post trying to focus on some of the positives when the doctor came in. Boo now has HUS. So much for positives.
His Creatinine level jumped from .4 to 2.2. Normal range is less than 1.0.
His blood count dropped from 34 to 32. This is a very small drop. At 20 they become concerned and start discussing blood transfusions.
His Platelet count dropped from 195 to 56. At around 15-20 they discuss blood transfusions. Although in some cases transfusions can make matters worse.
His sodium and potassium levels are okay which means his kidneys are able to process some toxins.
We will meet with the Renal team later this morning to go over more details related to dialysis (if needed), nutrition (he hasn't eaten since last week) and fluid management. There are so many variables and so many results to monitor. It's really hard to wrap my head around everything and it's an emotional roller coaster.
They are hesitant to give a timeline but it sounds like a few weeks.
There are a few positives:
-We have complete confidence in our team of doctors and nurses. Children's Hospital has been great.
-Boo has been carefully monitored from a very early stage. We are in a good position in terms of fluid management as opposed to some people who don't get to the hospital as soon as we did.
-All of the issues are treatable! I have to keep reminding myself of this one.
-We have a ton of support from family and friends. Thank you.
-
His Creatinine level jumped from .4 to 2.2. Normal range is less than 1.0.
His blood count dropped from 34 to 32. This is a very small drop. At 20 they become concerned and start discussing blood transfusions.
His Platelet count dropped from 195 to 56. At around 15-20 they discuss blood transfusions. Although in some cases transfusions can make matters worse.
His sodium and potassium levels are okay which means his kidneys are able to process some toxins.
We will meet with the Renal team later this morning to go over more details related to dialysis (if needed), nutrition (he hasn't eaten since last week) and fluid management. There are so many variables and so many results to monitor. It's really hard to wrap my head around everything and it's an emotional roller coaster.
They are hesitant to give a timeline but it sounds like a few weeks.
There are a few positives:
-We have complete confidence in our team of doctors and nurses. Children's Hospital has been great.
-Boo has been carefully monitored from a very early stage. We are in a good position in terms of fluid management as opposed to some people who don't get to the hospital as soon as we did.
-All of the issues are treatable! I have to keep reminding myself of this one.
-We have a ton of support from family and friends. Thank you.
-
Big Drop
The first of today's blood results were not good. Boo's platelets dropped from 195 to 59. That's a significant drop and a pretty good indicator he's developing HUS. They are really watching his fluid intake and output as his kidneys are struggling to keep up with fluid maintenance. His doctors have called in the Renal (kidney specialists) team to assist. He can't eat or drink anything right now and they aren't adding any fluids via IV until the Renal team advises.
Boo is resigned to the fact his vitals are checked on a regular basis by a number of different doctors and nurses. But getting blood drawn is a whole other issue. The second he realizes it's not a vitals check he breaks out in a dripping sweat. It generally takes one or two support people to keep him still because he's crying and fighting it. To make it worse once the blood tech left this morning he kept saying he wanted to go home. I told him we needed to speak with his doctor first. A little while later the nurse came in and he asked me to ask her if he could go home. That's tough...
Boo is resigned to the fact his vitals are checked on a regular basis by a number of different doctors and nurses. But getting blood drawn is a whole other issue. The second he realizes it's not a vitals check he breaks out in a dripping sweat. It generally takes one or two support people to keep him still because he's crying and fighting it. To make it worse once the blood tech left this morning he kept saying he wanted to go home. I told him we needed to speak with his doctor first. A little while later the nurse came in and he asked me to ask her if he could go home. That's tough...
Monday, August 22, 2011
Not Out of the Woods
We just found out Boo had higher levels of protein and blood in the urine analysis he gave tonight compared to the urine analysis he gave this afternoon.
In increase in both levels is bad. It means his kidneys are not functioning as well as they should. The doctors and nurses now have to closely watch his fluid intake and output. These signs are pointing towards HUS although it hasn't officially been diagnosed.
Boo seems to be feeling better. He was more alert and interactive today. But this is not a step in the right direction.
Current Trends
Boo's doctor came and spoke with us this evening. While he's still positively optimistic he had some concerning news. I don't pretend to speak in medical terms but I'll do my best to convey the message.
There are many different lab results doctors use to look for HUS. Two of them are Creatinine levels and platelet counts.
Boo's Creatinine level was .3 when we arrived, dropped to .2 on Saturday, went back to .3 Sunday and was .4 today. Creatinine levels indicate how well the kidneys are functioning. Normal range is less than 1.0. Again, a big fear with HUS is kidney failure.
Platelet counts were ~250 yesterday and ~195 today. I don't fully understand the importance of platelets but as I understand it they are blood-clotting cells. I believe it's also a potential early sign of HUS.
The doctor said these aren't necessarily signs Boo is heading towards HUS but they are significant trends requiring ongoing evaluation. On a positive note Boo's red blood cell counts remained constant. We're waiting on a urine analysis to determine if there is any blood or protein in his urine- both early indicators of HUS.
This is really frustrating. Boo finally started drinking and eating more only to throw up. Just as his diarrhea and stomach pains start to subside we get worrisome test results. One step forward, one step backwards.
There are many different lab results doctors use to look for HUS. Two of them are Creatinine levels and platelet counts.
Boo's Creatinine level was .3 when we arrived, dropped to .2 on Saturday, went back to .3 Sunday and was .4 today. Creatinine levels indicate how well the kidneys are functioning. Normal range is less than 1.0. Again, a big fear with HUS is kidney failure.
Platelet counts were ~250 yesterday and ~195 today. I don't fully understand the importance of platelets but as I understand it they are blood-clotting cells. I believe it's also a potential early sign of HUS.
The doctor said these aren't necessarily signs Boo is heading towards HUS but they are significant trends requiring ongoing evaluation. On a positive note Boo's red blood cell counts remained constant. We're waiting on a urine analysis to determine if there is any blood or protein in his urine- both early indicators of HUS.
This is really frustrating. Boo finally started drinking and eating more only to throw up. Just as his diarrhea and stomach pains start to subside we get worrisome test results. One step forward, one step backwards.
Better and Worse
We've been having a pretty good day. As I mentioned earlier Boo was pounding apple juice this morning and even having little bites of solid food. But it caught up with him and he threw up.
It seems to have taken a bit of the wind out of his sails. Now he's shying away from food and water. I got to listen in as the doctors made their rounds today and they're really looking for Boo to start drinking and eating on his own. He needs to drink and eat enough solids on his own before they'll consider releasing him. They've lowered the amount of IV he receives per hour in an attempt to stimulate his thirst. Back to the waiting game.
It seems to have taken a bit of the wind out of his sails. Now he's shying away from food and water. I got to listen in as the doctors made their rounds today and they're really looking for Boo to start drinking and eating on his own. He needs to drink and eat enough solids on his own before they'll consider releasing him. They've lowered the amount of IV he receives per hour in an attempt to stimulate his thirst. Back to the waiting game.
Apple Juice
Boo seems to be doing a little better today. He's been downing apple juice like a frat boy downs beer. The doctor said his blood work looks good although his platelets are slightly lower than yesterday. It doesn't mean he has HUS but it's something to keep an eye on. His diarrhea has decreased in frequency and his spirits seem better today. He got a big Blue's Clues Mylar balloon today and it was the first big smile I've seen in days. I even heard a little laugh while he was watching cartoons. All-in-all a pretty good start especially compared to yesterday.
Sunday, August 21, 2011
IV
Poor Boo. Something happened with his IV so they removed it and put a new one in his other hand. It took two tries and three people holding him down. One little sicko can only take so much poking and prodding.
On a more positive note he's able to drink more which is a good sign.
On a more positive note he's able to drink more which is a good sign.
Thank You!
This sucks. Boo feels like shit. Mollie and I are tired and worried. But it's been so much easier because of all the help and support we're receiving from our family and friends. It hasn't been lost on us how lucky we are to be surrounded by such great people.
-Nate and Mollie
-Nate and Mollie
The Long of the Short
Assuming you've read the posts below you're as well versed in E. coli and HUS as us. But all that information glosses over the emotional toll it takes on the patient and family/friends.
Background
About 10-12 days ago Carmen started having diarrhea and an irritable personality. We figured it was a little stomach bug and didn't think twice about it.
About 5 days ago Boo started experiencing similar symptoms. Again, we figured it was a little stomach bug he's picked up from Carmen so we didn't really think much about it. Carmen had started to get better and it stood to reason Boo would follow suit.
But this last Friday night everything changed. About 5pm we changed his diaper but instead of diarrhea we found what looked like a mixture of blood and mucus. That prompted a phone call to the doctor who told us to get him to Children's Hospital.
Day 1-Friday
We arrive at Children's about 8pm where they start running tests trying to determine the cause. Boo was fairly dehydrated and they put him on an IV. He also had blood work, X-rays and an ultrasound. They kept ruling things out like Intussusception (a condition where part of the intestine folds into itself like a telescope), appendicitis and a specific blood disease whose name escapes me. They took a stool sample and figured it was a bacterial infection such as E. coli, salmonella or something else along those lines. Due to his dehydration and lack of appetite/thirst they decided it was best to keep in the hospital for observation for a few days. During this whole time Boo was having frequent diarrhea and severe abdominal pain. It was coming in waves generally about an hour apart.
Day 2-Saturday
The frequent diarrhea and severe abdominal pain continued throughout Friday night and Saturday. He had a few bursts of energy where he would color or interact with people but for the most part he slept. He didn't drink more than 8 oz over the course of the day. In the afternoon we received the news the test for E. coli came back positive. It was a long day as everyone was super tired.
Day 3-Sunday
Sunday didn't start well. Boo didn't have any energy and spent all morning and the first part of the afternoon doing nothing but sleeping and pooping. The diarrhea and severe abdominal pain continued. He continued and still continues to have blood in his stool. At one point we thought he was starting to develop a fever. We kept looking for signs of improvement but nothing came. Finally about 3pm this afternoon there were some signs of life. While the diarrhea and pain continued he was awake and alert. He has been drinking more fluids and even ate some string cheese and yogurt. He puked up a bunch of the food but didn't seem too phased by it. He has some pretty bad diaper rash as he's pooping about 24 times per day.
Background
About 10-12 days ago Carmen started having diarrhea and an irritable personality. We figured it was a little stomach bug and didn't think twice about it.
About 5 days ago Boo started experiencing similar symptoms. Again, we figured it was a little stomach bug he's picked up from Carmen so we didn't really think much about it. Carmen had started to get better and it stood to reason Boo would follow suit.
But this last Friday night everything changed. About 5pm we changed his diaper but instead of diarrhea we found what looked like a mixture of blood and mucus. That prompted a phone call to the doctor who told us to get him to Children's Hospital.
Day 1-Friday
We arrive at Children's about 8pm where they start running tests trying to determine the cause. Boo was fairly dehydrated and they put him on an IV. He also had blood work, X-rays and an ultrasound. They kept ruling things out like Intussusception (a condition where part of the intestine folds into itself like a telescope), appendicitis and a specific blood disease whose name escapes me. They took a stool sample and figured it was a bacterial infection such as E. coli, salmonella or something else along those lines. Due to his dehydration and lack of appetite/thirst they decided it was best to keep in the hospital for observation for a few days. During this whole time Boo was having frequent diarrhea and severe abdominal pain. It was coming in waves generally about an hour apart.
Day 2-Saturday
The frequent diarrhea and severe abdominal pain continued throughout Friday night and Saturday. He had a few bursts of energy where he would color or interact with people but for the most part he slept. He didn't drink more than 8 oz over the course of the day. In the afternoon we received the news the test for E. coli came back positive. It was a long day as everyone was super tired.
Day 3-Sunday
Sunday didn't start well. Boo didn't have any energy and spent all morning and the first part of the afternoon doing nothing but sleeping and pooping. The diarrhea and severe abdominal pain continued. He continued and still continues to have blood in his stool. At one point we thought he was starting to develop a fever. We kept looking for signs of improvement but nothing came. Finally about 3pm this afternoon there were some signs of life. While the diarrhea and pain continued he was awake and alert. He has been drinking more fluids and even ate some string cheese and yogurt. He puked up a bunch of the food but didn't seem too phased by it. He has some pretty bad diaper rash as he's pooping about 24 times per day.
HUS and Boo
Important: This post discusses HUS which was briefly mentioned in the post below. To better understand the relevance of this post please start with the post below.
Q: What is HUS?
A: HUS stands for hemolytic uremic syndrome. It's most often caused by an infection from E. coli 0157:H7. About one in 10 children who are infected with E. coli 0157:H7 develop HUS. HUS is an illness that affects the blood cells and blood vessels. It destroys red blood cells, causes swelling of tiny blood vessel walls and causes clotting in small vessels. When the vessels in the kidney that filter blood become clogged, they cannot clean the blood as well. This can lead to kidney failure in some children.
Q: What problems can happen with HUS?
A: Some children have mild problems and no treatment is needed. Yet HUS can cause more serious problems. It can cause the blood disorder called anemia, which may require a blood transfusion. It can also lead to kidney failure, which requires kidney dialysis. HUS can also affect the nervous system, causing children to become irritable, restless and easily upset. Their blood pressure can go up, and the pancreas or other organs may become involved.
Let me be clear, while Boo tested positive for E. coli he has NOT tested positive for HUS. But you can see why we are seriously concerned.
Q: What is HUS?
A: HUS stands for hemolytic uremic syndrome. It's most often caused by an infection from E. coli 0157:H7. About one in 10 children who are infected with E. coli 0157:H7 develop HUS. HUS is an illness that affects the blood cells and blood vessels. It destroys red blood cells, causes swelling of tiny blood vessel walls and causes clotting in small vessels. When the vessels in the kidney that filter blood become clogged, they cannot clean the blood as well. This can lead to kidney failure in some children.
Q: What problems can happen with HUS?
A: Some children have mild problems and no treatment is needed. Yet HUS can cause more serious problems. It can cause the blood disorder called anemia, which may require a blood transfusion. It can also lead to kidney failure, which requires kidney dialysis. HUS can also affect the nervous system, causing children to become irritable, restless and easily upset. Their blood pressure can go up, and the pancreas or other organs may become involved.
Let me be clear, while Boo tested positive for E. coli he has NOT tested positive for HUS. But you can see why we are seriously concerned.
So what's up?
I think FAQ's will be the easiest way to explain what's happening. This is information provided by the hospital. Answers in RED are specific to Boo.
Q: What's wrong with Boo?
A: Boo has E. coli. The specific strain is 0157:H7. All subsequent information is related to 0157:H7.
Q: What is E. coli 0157:H7 infection?
A: E. coli are bacteria that normally live in the intestines of humans and animals. Although most strains of this bacteria are harmless, several are known to produce toxins that can cause diarrhea. One particular E. coli strain called 0157:H7 can cause severe diarrhea and kidney damage. Boo has 0157:H7.
Q: Who gets E. coli 0157:H7 infection?
A: Anyone of any age can become infected with E. coli 0157:H7, but children and the elderly are more likely to develop serious complications.
Q: How does one get infect with E. coli?
A: The bacteria are acquired by eating food containing the bacteria. The bacteria live in the intestines of some healthy cattle, and contamination of the meat may occur in the slaughtering process. Eating meat that is rare or inadequately cooked is the most common way of getting the infection. Infection can also occur after consuming foods such as lettuce, alfalfa sprouts, salami, and unpasteurized milk, juice or cider. Person-to-person transmission can occur if infected people do not wash their hands after using the toilet. We don't know how Boo got it.
Q: What are the symptoms of E. coli?
A: Some infected people may have mild diarrhea or no symptoms at all. Most identified cases develop severe diarrhea and abdominal cramps. Blood is often seen in the stool. Usually little or no fever is present. Boo has severe diarrhea and abdominal cramps almost every hour. Blood has been present in almost all stools since Friday evening.
Q: How soon after exposure do symptoms appear?
A: the symptoms usually appear about three days after exposure, with a range of one to nine days.
Q: How is infection diagnosed?
A: Stool culture.
Q: What is the treatment?
A: Most people recover without specific treatment in five to 10 days. Antibiotics should not be used because studies have shown that they may increase the risk of complications.
Q: What complications can result from infection?
A: In some people, particularly children under five years of age, the infection can cause a complication called Hemolytic Uremic Syndrome (HUS). This is a serious disease in which red blood cells are destroyed and the kidneys fail. Transfusions of blood or blood clotting factors as well as kidney dialysis may be necessary. A prolonged hospital stay is often required. Fortunately, most people with HUS recover completely, but it can be fatal. And this is what has us truly concerned. There is still a chance Boo could develop HUS.
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