All Things Difficult
I've been MIA around here. My life just got exponentially more difficult and worrisome.
Sunday, Sam seemed really tired but okay. In the late afternoon, he came to me and said he was having some extreme pain. We had a house full of cousins and friends so I gave him some Advil and figured things would get better. They didn't and he ended up in the ER Sunday/Monday. IT was a bit of a joke in the ER. We got our favored doc actually but he was not on his game...too many Easter Eggs I guess. He didn't do an exam, didn't order blood work, did nothing but shrug us off. So, it was a wasted visit.
After just a couple of hours of sleep, I was able to get him to a Urologist in the city. We rushed to get there in time only to find out he wasn't in our Network. In fact, there are no Urologists in our Network within 2 hours of here but I knew I had no choice so that will be coming 100% out of pocket. They diagnosed him with Epididymitis, and an infection. They put him on antibiotics and strict rest and I thought that is where the story would end.
I got several distress calls from Sam while I was in Salt Lake yesterday and tried to help him over the phone. I had my neighbor walk down to assess the situation as well. As soon as I got home around 10 pm, I took him back to the ER thinking he had kidney stones. No stones.
They did however find that his kidney function is significantly compromised. The doc was amazing and asked so many questions, considered so many different things, ordered appropriate tests and really spent a lot of time answering questions, teaching me and exploring other possibilities. He really wanted to admit Sam because of how sick his kidney function is but there is no one in this town who is knowledgeable enough to care for him in our small hospital. He is very concerned and called the social worker last night so that today, she can help me find a Nephrologist at the University Hospital and get an appointment in the next couple of days.
I am so exhausted, I'm at a loss as to where to start in finding him a doctor. I'm completely disoriented today.
Anyways...in Spencer news...
He survived the bone marrow biopsy that included no sedation.
I specifically requested the bare minimum which was Ativan to keep him relaxed and Fentanyl to help manage the pain. Those requests didn't get processed so they had planned for nothing! I was a little bugged but allowed Spencer to make his own choices and ask for what he needed. They were able to supply him with a Fentanyl Lollipop.
It was an interesting thing...It was recently invented for the United States Marines in Afghanistan. When a marine has severe injuries, they are given a 'lollipop' until they can get him to medical care.
It was a very difficult procedure. He ended up having to have his hip bone punctured 4 times! The first one for the aspirate, she couldn't get any marrow to come out so that had to be done twice. Even the second time, there was very little marrow she could retrieve- enough I guess but she was working for it. The same thing happened for the actual bone retrieval. So, it was really rough!!! It was rough to watch and harder still for Spencer.
Our PA who does the bone marrows is really great! She does an amazing job keeping the kids calm and she talks them through every step. I have grown to appreciate her ways with them and felt really bad for her as well. It will be a week or two before we get pathology back on that. Here are some pictures of the process and a short video I captured of the failed first attempt to get the core of bone out. It's a very long, thick, smooth, hollow needle that gets pressed into the bone and then twisted out. The video shows the twisting out part.
Sunday, Sam seemed really tired but okay. In the late afternoon, he came to me and said he was having some extreme pain. We had a house full of cousins and friends so I gave him some Advil and figured things would get better. They didn't and he ended up in the ER Sunday/Monday. IT was a bit of a joke in the ER. We got our favored doc actually but he was not on his game...too many Easter Eggs I guess. He didn't do an exam, didn't order blood work, did nothing but shrug us off. So, it was a wasted visit.
After just a couple of hours of sleep, I was able to get him to a Urologist in the city. We rushed to get there in time only to find out he wasn't in our Network. In fact, there are no Urologists in our Network within 2 hours of here but I knew I had no choice so that will be coming 100% out of pocket. They diagnosed him with Epididymitis, and an infection. They put him on antibiotics and strict rest and I thought that is where the story would end.
I got several distress calls from Sam while I was in Salt Lake yesterday and tried to help him over the phone. I had my neighbor walk down to assess the situation as well. As soon as I got home around 10 pm, I took him back to the ER thinking he had kidney stones. No stones.
They did however find that his kidney function is significantly compromised. The doc was amazing and asked so many questions, considered so many different things, ordered appropriate tests and really spent a lot of time answering questions, teaching me and exploring other possibilities. He really wanted to admit Sam because of how sick his kidney function is but there is no one in this town who is knowledgeable enough to care for him in our small hospital. He is very concerned and called the social worker last night so that today, she can help me find a Nephrologist at the University Hospital and get an appointment in the next couple of days.
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| Sam's normal blood pressure is 98/48. Last night he was 166/104- another sign his kidneys are in trouble |
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| Poor Sam...having enough of life and it's finals week at school! Here's to another botched semester! Thank you Dyskeratosis Congenita! |
I am so exhausted, I'm at a loss as to where to start in finding him a doctor. I'm completely disoriented today.
Anyways...in Spencer news...
He survived the bone marrow biopsy that included no sedation.
I specifically requested the bare minimum which was Ativan to keep him relaxed and Fentanyl to help manage the pain. Those requests didn't get processed so they had planned for nothing! I was a little bugged but allowed Spencer to make his own choices and ask for what he needed. They were able to supply him with a Fentanyl Lollipop.
It was an interesting thing...It was recently invented for the United States Marines in Afghanistan. When a marine has severe injuries, they are given a 'lollipop' until they can get him to medical care.
It was a very difficult procedure. He ended up having to have his hip bone punctured 4 times! The first one for the aspirate, she couldn't get any marrow to come out so that had to be done twice. Even the second time, there was very little marrow she could retrieve- enough I guess but she was working for it. The same thing happened for the actual bone retrieval. So, it was really rough!!! It was rough to watch and harder still for Spencer.
Our PA who does the bone marrows is really great! She does an amazing job keeping the kids calm and she talks them through every step. I have grown to appreciate her ways with them and felt really bad for her as well. It will be a week or two before we get pathology back on that. Here are some pictures of the process and a short video I captured of the failed first attempt to get the core of bone out. It's a very long, thick, smooth, hollow needle that gets pressed into the bone and then twisted out. The video shows the twisting out part.
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| This is Spencer finding out what a Fentanyl Lollipop looks like. He said it tasted like salty raspberries. To activate it, you rub it on the insides of your cheeks and then just suck on it. It's actually kind of a cool idea, not entirely effective for bone marrow pain though. |
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| They prepare tons of smears from the liquid marrow which is what you are seeing in the tray on the bottom right side. The tubes are also filled with marrow. |
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| This is the core of bone they removed from his hip. It was an impressive sample. |
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| This is the PA removing the marrow. This is the aspirate part of the test. She's already created the hole in his bone and through that, sucks out the marrow. |
This week is painfully hard. I am trying to manage everyone and their stress but it's tough. I have only been able to work 5 hours this week which is not helpful. I have clients waiting and wondering what happened to me. I would tell them but let's be honest...my life is ridiculously impossible to believe right now.
Five Days. Three kids. Three hospitals. Three Cities. One Mom and medical bills in 5 days to equal close to $75,000 I'm guessing.
Today, I'm headed to the hospital with Shelbie for her pre-op work up. Because she has so many heart and lung issues, the testing will be extensive today in order to have her ready for hand surgery tomorrow morning in the big city! Ugh.
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