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Another eventful week around here.
Shelbie had her transfusion on Thursday. She had a pretty good reaction about 2 hours into it and we had slow things down, add in some new meds and wait until it passed, which it did and things seemed fine. Later that night, she was with her dad and aunts and turned all loopy and really confused and out of it. They brought her home and she truly was acting weird. I just figured it was a combination of stress, fatigue and the IVIG. She eventually fell asleep and that was the end of that...or so I thought.
Friday, the headache started which is really early, historically speaking. We started the migraine meds at the first sign of trouble but it kept escalating. Eventually, I had to take her to the ER. We got home at 2:30am, I stayed up til about 3:30 just to make sure she was okay and sleeping comfortably.
Saturday morning came early...well, about three hours after I went to bed, the neighbor decides to start weed whacking along his back fence which is about 15' from my bedroom window! To say I was grouchy was pretty much an understatement. I laid there trying real hard not to curse the situation and then the phone started ringing off the hook which was odd for a Saturday morning. I got up and got to work. I was sleepy all day!
The migraine was nagging and whining at her all day long but Shelbie tried to ignore it. She was taking migraine meds every two hours and ibuprofen at the hour. It was not good. She was hosting a bridal shower and had to make it through. At 11:00pm, it was more than she could handle and the meds weren't working anyways...so it was back to the ER. Again, they mixed up the migraine cocktail and we got home at 2:30. I stayed up again til 3:30, laid awake another 45 minutes then fell asleep for a couple of hours.
Sunday, she woke up mid morning and was feeling so much better! I thought...hooray! Let's go for a drive!
It has been a hard week and I needed to get out of dodge. So, after church, we decided to head up to some local waterfalls. I missed the turn so we just kept driving, no real agenda. Next thing I knew, we were in Yellowstone! Little did I know, we wouldn't be there for long!
Not even 10 minutes there and Shelbie said, "I don't feel so good. There is so much pressure in my head!"
"Take some migraine pills" I said.
We kept walking and then she said, "MOM! I can't see out of my right eye!"
"That could just be caused from the migraine."
"MOM!! everything is super blurry out of the other eye! MOM!!!"
From there, everything happened so fast! She became dizzy, nauseated, and extremely weak! She could hardly stand! She couldn't put words together. Then, her whole body started bloating up! Her little fingers were at least double in size. I couldn't believe what I was seeing and if I hadn't of seen it, I never would have believed it!
I remembered my friend visiting just two weeks prior. Her son has Mitochondrial disease and they found out the hard way that people with Mito can't tolerate high elevations. They were camping in Yellowstone and she had to bring him in to the hospital. I met them there and got a quick education on Mito and altitude sickness. At the time, I thought I was just there for support.
Once I got Shelbie in the car, it hit me that she was going through a mito crash due to the altitude! All of that from two weeks ago was clearly to prepare me for this moment! I drove to a gas station, ran in and while grabbing candy and Gatorade, called my friend to make sure I was doing the right thing. The one thing the body needs is sugar and lots of it! Her body had been quickly depleted of energy in the mitochondria because of a dangerous build up of lactic acid. (not like drinking too much milk) at a cellular level. So, because it had no energy, it was starting to shut down the non-vital organs like eyesight. Oxygen was being sent to the vital organs like her heart...though that was racing too.
I tried to get the sugar in her as fast as I could while speeding back home. She couldn't even hold a candy bar, she was that weak. For several miles, she just laid in a catatonic state, not blinking...nothing. I was so scared and home was still 50 miles away.
I drove straight to the hospital and got her checked in. She was in bad shape! The whole situation was made harder by the fact that I could no longer say, "She has Shwachman Diamond Syndrome." or "Dyskeratosis Congenita" I had to go into this long, drawn out history about bone marrow failure which may or may not be secondary to an autoimmune issue which may or may not be primary, could be secondary, ITP, connective tissue disorder...vasculitis.. Dsyautonomia, mitochondrial problems, shortened telomeres, blah, blah, blah...The doctor was very patient and listened closely. I was really impressed with him.
Long story short, they started her on treatment for Altitude sickness which is a liter of D10- sugar water, and a liter of sodium! I was kind of freaked out by the amount of sugar they had to pump in her before she started coming 'alive' again.
Today, she is doing better but very weak and tired. The whole episode completely drained her body of energy! I have never thought of the mito being such a problem for her like I have for the boys. I think that because her body was already stressed with the IVIG, it just couldn't handle the change in altitude. Not only that, the lactic acid probably started building on Thursday, with her transfusion which stressed her body and became toxic.
The one amazing thing to me is how efficient, even a sick body is, of taking care of itself. Instinctively, it knew what to shut down and what to keep running. It's really quite amazing if you think about it!
So, I have been feeling so blessed and grateful for the way that God works. Without the trial my friend had just two weeks ago, I never would have known what to do for Shelbie. It was that sugar in Yellowstone that kept her alive really. Even the doctor asked what I had done for her and when I told him, he said, "How did you know to do that? It was the very thing that saved her." It was truly a tender mercy, an act of God. There's no denying that!
Shelbie had her transfusion on Thursday. She had a pretty good reaction about 2 hours into it and we had slow things down, add in some new meds and wait until it passed, which it did and things seemed fine. Later that night, she was with her dad and aunts and turned all loopy and really confused and out of it. They brought her home and she truly was acting weird. I just figured it was a combination of stress, fatigue and the IVIG. She eventually fell asleep and that was the end of that...or so I thought.
Friday, the headache started which is really early, historically speaking. We started the migraine meds at the first sign of trouble but it kept escalating. Eventually, I had to take her to the ER. We got home at 2:30am, I stayed up til about 3:30 just to make sure she was okay and sleeping comfortably.
Saturday morning came early...well, about three hours after I went to bed, the neighbor decides to start weed whacking along his back fence which is about 15' from my bedroom window! To say I was grouchy was pretty much an understatement. I laid there trying real hard not to curse the situation and then the phone started ringing off the hook which was odd for a Saturday morning. I got up and got to work. I was sleepy all day!
The migraine was nagging and whining at her all day long but Shelbie tried to ignore it. She was taking migraine meds every two hours and ibuprofen at the hour. It was not good. She was hosting a bridal shower and had to make it through. At 11:00pm, it was more than she could handle and the meds weren't working anyways...so it was back to the ER. Again, they mixed up the migraine cocktail and we got home at 2:30. I stayed up again til 3:30, laid awake another 45 minutes then fell asleep for a couple of hours.
Sunday, she woke up mid morning and was feeling so much better! I thought...hooray! Let's go for a drive!
It has been a hard week and I needed to get out of dodge. So, after church, we decided to head up to some local waterfalls. I missed the turn so we just kept driving, no real agenda. Next thing I knew, we were in Yellowstone! Little did I know, we wouldn't be there for long!
Not even 10 minutes there and Shelbie said, "I don't feel so good. There is so much pressure in my head!"
"Take some migraine pills" I said.
We kept walking and then she said, "MOM! I can't see out of my right eye!"
"That could just be caused from the migraine."
"MOM!! everything is super blurry out of the other eye! MOM!!!"
From there, everything happened so fast! She became dizzy, nauseated, and extremely weak! She could hardly stand! She couldn't put words together. Then, her whole body started bloating up! Her little fingers were at least double in size. I couldn't believe what I was seeing and if I hadn't of seen it, I never would have believed it!
I remembered my friend visiting just two weeks prior. Her son has Mitochondrial disease and they found out the hard way that people with Mito can't tolerate high elevations. They were camping in Yellowstone and she had to bring him in to the hospital. I met them there and got a quick education on Mito and altitude sickness. At the time, I thought I was just there for support.
Once I got Shelbie in the car, it hit me that she was going through a mito crash due to the altitude! All of that from two weeks ago was clearly to prepare me for this moment! I drove to a gas station, ran in and while grabbing candy and Gatorade, called my friend to make sure I was doing the right thing. The one thing the body needs is sugar and lots of it! Her body had been quickly depleted of energy in the mitochondria because of a dangerous build up of lactic acid. (not like drinking too much milk) at a cellular level. So, because it had no energy, it was starting to shut down the non-vital organs like eyesight. Oxygen was being sent to the vital organs like her heart...though that was racing too.
I tried to get the sugar in her as fast as I could while speeding back home. She couldn't even hold a candy bar, she was that weak. For several miles, she just laid in a catatonic state, not blinking...nothing. I was so scared and home was still 50 miles away.
I drove straight to the hospital and got her checked in. She was in bad shape! The whole situation was made harder by the fact that I could no longer say, "She has Shwachman Diamond Syndrome." or "Dyskeratosis Congenita" I had to go into this long, drawn out history about bone marrow failure which may or may not be secondary to an autoimmune issue which may or may not be primary, could be secondary, ITP, connective tissue disorder...vasculitis.. Dsyautonomia, mitochondrial problems, shortened telomeres, blah, blah, blah...The doctor was very patient and listened closely. I was really impressed with him.
Long story short, they started her on treatment for Altitude sickness which is a liter of D10- sugar water, and a liter of sodium! I was kind of freaked out by the amount of sugar they had to pump in her before she started coming 'alive' again.
Today, she is doing better but very weak and tired. The whole episode completely drained her body of energy! I have never thought of the mito being such a problem for her like I have for the boys. I think that because her body was already stressed with the IVIG, it just couldn't handle the change in altitude. Not only that, the lactic acid probably started building on Thursday, with her transfusion which stressed her body and became toxic.
The one amazing thing to me is how efficient, even a sick body is, of taking care of itself. Instinctively, it knew what to shut down and what to keep running. It's really quite amazing if you think about it!
So, I have been feeling so blessed and grateful for the way that God works. Without the trial my friend had just two weeks ago, I never would have known what to do for Shelbie. It was that sugar in Yellowstone that kept her alive really. Even the doctor asked what I had done for her and when I told him, he said, "How did you know to do that? It was the very thing that saved her." It was truly a tender mercy, an act of God. There's no denying that!
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