I mean really. Cold is cold, right? But, then again, there's a whole different kind of cold when you decide to NOT check the weather and drive off on a beautiful, sunny October morning in a Jeep with no top and no doors...and then the rain moves in and the temperature drops about twenty degrees and you don't even have a sweater...and you are driving down the road at 60 mph. The concept of wind chill takes on a whole new perspective! Really.
That is when you really know who your friends are! :) I humbly called Erlene from Wawa where I was warming my frozen hands around a piping hot cup of coffee when I asked her if I could please maybe borrow a sweater? She lives a mile away from this particular Wawa and she loves me despite myself. So she graciously agreed to lend me one of Kelly's sweatshirts (I totally owe you, Kelly!) that I promptly put on and did not care that it matched nothing I was wearing and have never been so happy to see a hoodie in all my life. I even wore this hoodie into Bloom where I promptly dropped the cup of coffee all over the floor...
How much attention can you possibly draw to yourself? Driving a Jeep with no doors when it's 60 degrees while wearing capris and sandals that are way too cold for the weather and a hoodie that does not match. And then you dump coffee all over the floor.
But I was warm.
And when I got home, I very sweetly told my men that I would welcome assistance in putting the hard top back on the Jeep at their earliest convenience. Darn. Summer's over!
Monday, October 12, 2009
Wednesday, October 7, 2009
Homeward Bound
While we have no intention of getting lost in the woods, we are planning to head toward home this afternoon. Will has been stable for the last 24 hours so all looks good.
We have been really blessed while here. While the first 24 hours was challenging, we had great nurses, nursing students, and the doctors were able to communicate effectively which is incredibly helpful. They even called Dr Teasley who is at a conference to discuss a medication change they wanted to make. I didn't anticipate that it would go so smoothly, but they really were fabulous.
We also learned valuable lessons. Instant oatmeal in the hospital bag is a lifesaver for Mom, coffee's benefits are not to be underestimated, and a private room makes the time much more manageable. Oh, and recliners are not meant for sleeping! :)
Thank you for the emails and phone calls over the last few days!
We have been really blessed while here. While the first 24 hours was challenging, we had great nurses, nursing students, and the doctors were able to communicate effectively which is incredibly helpful. They even called Dr Teasley who is at a conference to discuss a medication change they wanted to make. I didn't anticipate that it would go so smoothly, but they really were fabulous.
We also learned valuable lessons. Instant oatmeal in the hospital bag is a lifesaver for Mom, coffee's benefits are not to be underestimated, and a private room makes the time much more manageable. Oh, and recliners are not meant for sleeping! :)
Thank you for the emails and phone calls over the last few days!
Tuesday, October 6, 2009
Quick Update
Andrew played chaperone to two very tired parents last night. He brought Billy to MCV to spend the night with Will and took me home for some much needed sleep. It is amazing what rest will do for a person. :)
So, here's where we are. Will's fever is significantly lower. It still goes up as medication wears off, but it's not nearly as high as Sunday. (With autonomic dysfunction, the child can be burning up and a thermometer can get a different reading every time you take it. Even with the highest reading, it still may read too low.)
He still has GI issues, so the current discussion is when can they release him. Current philosophy is that he will remain there on fluids until the GI issues resolve because the threat of dehydration is so significant for him. (They put 3 liters of fluid in him Sunday!) When asked how long that might be, the answer was "maybe toward the end of the week." I requested to pull him off of his gastroparesis medication, but that medication also helps the mitochondrial disease issues. So it's a bit of a catch 22.
I need to head south so Billy can return to work...Thank you so much for the encouraging emails and phone calls and visits. They are deeply appreciated!
So, here's where we are. Will's fever is significantly lower. It still goes up as medication wears off, but it's not nearly as high as Sunday. (With autonomic dysfunction, the child can be burning up and a thermometer can get a different reading every time you take it. Even with the highest reading, it still may read too low.)
He still has GI issues, so the current discussion is when can they release him. Current philosophy is that he will remain there on fluids until the GI issues resolve because the threat of dehydration is so significant for him. (They put 3 liters of fluid in him Sunday!) When asked how long that might be, the answer was "maybe toward the end of the week." I requested to pull him off of his gastroparesis medication, but that medication also helps the mitochondrial disease issues. So it's a bit of a catch 22.
I need to head south so Billy can return to work...Thank you so much for the encouraging emails and phone calls and visits. They are deeply appreciated!
Monday, October 5, 2009
Admission
Will has been admitted to MCV main hospitl for an undetermined period of time. His heart rate needs to stabilize before they will discharge him.
More tomorrow...or actually, later today.
More tomorrow...or actually, later today.
Flu...and mito
Sorry for the brevity, but here we are...We went to MCV this am with tacchycardia (our favorite problem these days) and the inability to stand without early signs of passing out. They administered 2 liters of fluids and sent us home.
Upon discharge, he was back to our normal, goofy Will. On the trip home, I literally watched him deteriorate. By the time we got home, his fever was 103. back to MCV we went.
Preliminary lab work suggests it is the flu. Which one we won't know for at least a day. He has received Tamiflu and another liter of fluid. His heart rate is still tacchycardic (came in at 120, has hit 154, and is now hanging around 118.) We are waiting to see if they plan to admit him or not. My presumption is that they will.
The flu is more difficult for William for a number of reasons. The main issue is that his body is busy expending its limited energy fighting the virus and can't make enough energy to support all of the other normal functions as well. Basically, he is in a major energy crisis.
At the moment, he is resting quietly, watching a movie, and waiting to see what the plan is. Billy is here with us. Andrew is holding down the fort.
We do have friends willing to step in in the morning...we will keep you posted as we learn more and have time.
Upon discharge, he was back to our normal, goofy Will. On the trip home, I literally watched him deteriorate. By the time we got home, his fever was 103. back to MCV we went.
Preliminary lab work suggests it is the flu. Which one we won't know for at least a day. He has received Tamiflu and another liter of fluid. His heart rate is still tacchycardic (came in at 120, has hit 154, and is now hanging around 118.) We are waiting to see if they plan to admit him or not. My presumption is that they will.
The flu is more difficult for William for a number of reasons. The main issue is that his body is busy expending its limited energy fighting the virus and can't make enough energy to support all of the other normal functions as well. Basically, he is in a major energy crisis.
At the moment, he is resting quietly, watching a movie, and waiting to see what the plan is. Billy is here with us. Andrew is holding down the fort.
We do have friends willing to step in in the morning...we will keep you posted as we learn more and have time.
Friday, September 25, 2009
And the answer is...
I don't know.
We took Will to see Dr Johnson (ENT). He looked in Will's ears. He performed a hearing test. Yep. Normal. Um, so how do you explain the transient hearing loss, ear pressure, tinnitis, and headaches? Well, Dr Johnson thinks that Will's sodium levels spike after an infusion (it is saline after all and he is on medication that causes him to retain sodium), and the fluid builds up in the mechanisms of the ear and muffles the hearing.
Except that Will's sodium levels remain on the low end of normal. We don't have a post perfusion sodium level, but we do have them only a few days apart and the number is rock solid. Three tests. Almost identical results.
Dr Johnson (ENT) recommended slowing the rate of infusion down (give the fluids over a longer period of time). The prescription calls for two liters over four hours. Last Saturday's infusion took 5 1/2 because it was gravity fed. Well, the nurse can't change the order, so today's infusion was four hours. So I guess we'll see tomorrow whether we have issues or not.
Dr Teasley returned my call this afternoon. We're adding a new med to Will's regime to try to sustain the blood pressure. His heart rate is finally stabilizing, but now his bp is unstable. She thinks his body is just compensating...not a great sign. She called Dr Cohen's office (Cleveland Clinic...where we are scheduled to go in Dec), and apparently his wife is gravely ill and they won't see us any sooner. She recommended finding another specialist and she would happily refer us to wherever we decide. A message did come across the mito forum that a family called every day to see if there was a cancellation and they got in this week. So guess what I'm gonna do every day??? Dr Teasley is referring us to a neuro-ENT specialist at MCV to re-evaluate the hearing issue. Not sure when that will be...
So, as a recap...we just don't know. We get to add a doctor (neuro-ENT), we get to locate another doctor (mito specialist if we can't get to Cleveland), and we pray that things do not continue to deteriorate...esp the hearing.
I asked Will today how many days a week he didn't feel well. His answer? "Are we talking my version of feel well or yours?"
Hmmm..."What IS your definition of don't feel well?"
His answer, "Not having pain more than a 2, not being more tired than a 5, not feeling awful in general."
And how many days a week is that?
His answer, "About half."
"So, by normal standards how many?"
His answer, "None."
Ugh. I just hate that answer. I just want him to be a little boy...the goofy boy that coudn't sit still during school so I finally gave him an exercise ball for a chair. The crazy kid who was always bouncing off the wall, climbing a tree, or redefining mischief. The rambunctious, silly, boy who always smiled. You don't realize what a gift that child is until he disappears into a tired, exhausted, grumpy, I-don't_feel-well, can I just sleep? kind of child who knows the pain scale, what his "normal" blood pressure is, when his heart rate is above 85 without bothering to take his pulse, and knows the medical jargon of a fourth year medical student.
As much as I want a cave and a blanket and a piece of chocolate, I think he needs it more than I do. If only it were that easy.
We took Will to see Dr Johnson (ENT). He looked in Will's ears. He performed a hearing test. Yep. Normal. Um, so how do you explain the transient hearing loss, ear pressure, tinnitis, and headaches? Well, Dr Johnson thinks that Will's sodium levels spike after an infusion (it is saline after all and he is on medication that causes him to retain sodium), and the fluid builds up in the mechanisms of the ear and muffles the hearing.
Except that Will's sodium levels remain on the low end of normal. We don't have a post perfusion sodium level, but we do have them only a few days apart and the number is rock solid. Three tests. Almost identical results.
Dr Johnson (ENT) recommended slowing the rate of infusion down (give the fluids over a longer period of time). The prescription calls for two liters over four hours. Last Saturday's infusion took 5 1/2 because it was gravity fed. Well, the nurse can't change the order, so today's infusion was four hours. So I guess we'll see tomorrow whether we have issues or not.
Dr Teasley returned my call this afternoon. We're adding a new med to Will's regime to try to sustain the blood pressure. His heart rate is finally stabilizing, but now his bp is unstable. She thinks his body is just compensating...not a great sign. She called Dr Cohen's office (Cleveland Clinic...where we are scheduled to go in Dec), and apparently his wife is gravely ill and they won't see us any sooner. She recommended finding another specialist and she would happily refer us to wherever we decide. A message did come across the mito forum that a family called every day to see if there was a cancellation and they got in this week. So guess what I'm gonna do every day??? Dr Teasley is referring us to a neuro-ENT specialist at MCV to re-evaluate the hearing issue. Not sure when that will be...
So, as a recap...we just don't know. We get to add a doctor (neuro-ENT), we get to locate another doctor (mito specialist if we can't get to Cleveland), and we pray that things do not continue to deteriorate...esp the hearing.
I asked Will today how many days a week he didn't feel well. His answer? "Are we talking my version of feel well or yours?"
Hmmm..."What IS your definition of don't feel well?"
His answer, "Not having pain more than a 2, not being more tired than a 5, not feeling awful in general."
And how many days a week is that?
His answer, "About half."
"So, by normal standards how many?"
His answer, "None."
Ugh. I just hate that answer. I just want him to be a little boy...the goofy boy that coudn't sit still during school so I finally gave him an exercise ball for a chair. The crazy kid who was always bouncing off the wall, climbing a tree, or redefining mischief. The rambunctious, silly, boy who always smiled. You don't realize what a gift that child is until he disappears into a tired, exhausted, grumpy, I-don't_feel-well, can I just sleep? kind of child who knows the pain scale, what his "normal" blood pressure is, when his heart rate is above 85 without bothering to take his pulse, and knows the medical jargon of a fourth year medical student.
As much as I want a cave and a blanket and a piece of chocolate, I think he needs it more than I do. If only it were that easy.
Tuesday, September 22, 2009
Mito forums...
While most of you don't hear from me in forever, I'm busy reading my email and studying the mito forum on yahoo. Being a little fly on the wall of this forum has yielded more information that I gained all summer doing google searches.
Friday, Will again complained of random hearing loss and pressure. I really thought he just was being non compliant with his medications and his allergies were an issue. Well, he actually cried over his ears hurting when his little sister shrieked into them, so I decided to take him in. I fully expected he had at least fluid in his ears, but instead, his ears were perfectly normal. And he passed a quick hearing test. Really. No explanation as to why the hearing issue. Saturday, he came to me after his infusion and said that he was having a hard time hearing again. It just didn't make sense, but I had this growing fear that we were looking at a mito issue.
Darn.
Today, on the forum, they were discussing Meneire's Disease...headache (check), pressure (check), transient hearing loss that worsens (check), unstable balance (check). Dizziness. (check) Oh, great. Degenerative. (What with mito ISN'T degenerative????) Eventually leads to deafness.
No cure. But the treatment is a low sodium, low fluid diet. You're kidding, right? He's on medication to stabilize his blood pressure that requires him to retain sodium, he's supposed to take sodium tablets, and he is supposed to drink a gallon of water a day and receive a 2 liter infusion each week.
Am I jumping to conclusions? Maybe. Is it a little too real? Yep. He gets an infusion and he has hearing loss.
Nothing with mito is easy. Nothing. How much more can a 13 yo take? How do we even deal with one more thing?
Oh, Lord. I believe, but please...help my unbelief because right now, I just don't know how on my own to manage mito, much less this. I've never hoped for me to be wrong as much as I do at this moment.
Friday, Will again complained of random hearing loss and pressure. I really thought he just was being non compliant with his medications and his allergies were an issue. Well, he actually cried over his ears hurting when his little sister shrieked into them, so I decided to take him in. I fully expected he had at least fluid in his ears, but instead, his ears were perfectly normal. And he passed a quick hearing test. Really. No explanation as to why the hearing issue. Saturday, he came to me after his infusion and said that he was having a hard time hearing again. It just didn't make sense, but I had this growing fear that we were looking at a mito issue.
Darn.
Today, on the forum, they were discussing Meneire's Disease...headache (check), pressure (check), transient hearing loss that worsens (check), unstable balance (check). Dizziness. (check) Oh, great. Degenerative. (What with mito ISN'T degenerative????) Eventually leads to deafness.
No cure. But the treatment is a low sodium, low fluid diet. You're kidding, right? He's on medication to stabilize his blood pressure that requires him to retain sodium, he's supposed to take sodium tablets, and he is supposed to drink a gallon of water a day and receive a 2 liter infusion each week.
Am I jumping to conclusions? Maybe. Is it a little too real? Yep. He gets an infusion and he has hearing loss.
Nothing with mito is easy. Nothing. How much more can a 13 yo take? How do we even deal with one more thing?
Oh, Lord. I believe, but please...help my unbelief because right now, I just don't know how on my own to manage mito, much less this. I've never hoped for me to be wrong as much as I do at this moment.
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