September 13, 2017 10:45 pm
Lucky 13? We're not so sure.
We'll lead with the big news. First, Josh goes in for surgery at Swedish at 6:30 tomorrow morning. They are going to install a SECOND permanent shunt to drain the brain fluid in Josh's frontal lobe area. Second, Mary went into the ER for the THIRD time and FINALLY got diagnosed with something that makes sense: bronchitis. More below.
Last night was terrible. Mary's coughing was the worst is has been, and it was ALL NIGHT LONG! The neighbors gotta hate us.
Josh started with ST this morning. He was asked to identify 9 different body parts. He was told the answers in advance, and he scored 75%.
He was supposed to come up with three statements about eyes; like, eyes see, eyes can be different colors, etc. He said, "Eyes can be blue, green, or red." That was the only one he thought of.
Josh's next class was OT. He was asked to make Maruchan instant ramen for lunch. He dumped the entire package inside a pot of cold water, put it on the stove on low, realized the herb package was floating on top, opened the herbs, dumped them in, and waited. For a long time ... because it never boiled. The therapist finally convinced him to turn up the heat, and it all worked out in the end.
Then OT and PT teamed up to play a couple of games. The first was dribbling and passing a basketball down one of the hallways.
The only other activity Josh had today was "Bike." He requested that for his schedule, so he gets 30-60 minutes/day to ride a stationary bike. Today he only lasted 20 minutes.
We were supposed to meet with the neurosurgeon between 1 and 3:00 today, but he didn't show until nearly 6:30. So le me splain. No. There is too much. Le me sum up. We have two options: (1) do nothing and (2) have a second shunt surgery.
(1) If we do nothing, Josh's progress may be limited to little more than what he can do now. The ventricles will stay big, and extra-axiel fluid will continue to accumulate in the frontal area. BUT it's possible that the fluid will not accumulate too much more.
(2) A second shunt surgery is not something most hospitals will do. Basically, with injuries as severe as Josh's, if the person isn't in a coma, it's considered a success and they won't push the limits. The risks with this surgery are (a) a 5-6% chance of infection, and if that happens, they have to remove the synthetic skull, wait three months, and install another synthetic skull. That would be really bad. And (b) it won't do any good. The potential upside is that they will be able to drain the frontal fluid and the ventricles and Josh may be able to progress further.
At the doctor's recommendation, we chose option 2, so the doctor offered to do Josh's surgery next Tuesday. We consented, then Mary said, "If you have a cancellation on Friday, maybe you can fit us in. We'd like to get this done." So Dr. Rubin said, "Let me call the OR and see what I can do." He will be gone Friday (it's his wife's birthday so they are flying to Aspen for the weekend), so he rearranged some surgeries and fit Josh in TOMORROW MORNING at 6:30. He will be out of surgery around 10:00 - with another permanent bump in his head and another visible catheter down his neck.
With this surgery, it is now much more likely that we will need to stay here in Denver well into October.
After suffering through ANOTHER miserable day of coughing so hard that it sounds like she is going to explode, and after consulting with her favorite pharmacist (thanks, Josh), Mary went to the ER AGAIN. This time they FINALLY diagnosed her with an advanced bronchial infection and prescribed antibiotics, an inhaler, and cough medicine with codeine. Why they did not do this the first time -- or how about the second time -- is absolutely beyond us. This journey we are taking through the medical world has really left us with serious concerns about the competency of our medical professions. Very alarming. In any case, with actual medicine in her hands now, we are HOPING that she will be able to get some sleep tonight FOR THE FIRST TIME IN A WEEK and start to actually get better. Sorry to be so negative, but the hell Mary has been through this past week is horrendous and both of us are pretty upset about it, as you may have gathered.
We are exhausted and are going to try to go to sleep. Wish us luck.
On a side note: Probably not a lot of you are watching too much TV (Mary's been watching all day and night this last week), but we think that the number of commercials advertising for cruises and Sandals in the Caribbean is bad form.
Lucky 13? We're not so sure.
We'll lead with the big news. First, Josh goes in for surgery at Swedish at 6:30 tomorrow morning. They are going to install a SECOND permanent shunt to drain the brain fluid in Josh's frontal lobe area. Second, Mary went into the ER for the THIRD time and FINALLY got diagnosed with something that makes sense: bronchitis. More below.
Last night was terrible. Mary's coughing was the worst is has been, and it was ALL NIGHT LONG! The neighbors gotta hate us.
Josh started with ST this morning. He was asked to identify 9 different body parts. He was told the answers in advance, and he scored 75%.
His next task was to describe the different body parts. He chose to start with eyes. Allison said, "Write 'eyes' at the top of the page." Josh copied the picture of the eyes instead.
He was supposed to come up with three statements about eyes; like, eyes see, eyes can be different colors, etc. He said, "Eyes can be blue, green, or red." That was the only one he thought of.
Josh's next class was OT. He was asked to make Maruchan instant ramen for lunch. He dumped the entire package inside a pot of cold water, put it on the stove on low, realized the herb package was floating on top, opened the herbs, dumped them in, and waited. For a long time ... because it never boiled. The therapist finally convinced him to turn up the heat, and it all worked out in the end.
Then OT and PT teamed up to play a couple of games. The first was dribbling and passing a basketball down one of the hallways.
The next was a bean bag toss. One person threw the bean bag, and the other person threw their bean bag and tried to get it to land on top of the first person's bag. Therese went first. She threw a bag and Josh threw his right on top of hers! She threw her second bag and he threw his bag on top of hers again! The next two bags weren't so close.
The object of this is to try to get Josh to identify colors and figure out depth perception with his new vision.
Then OT left and PT took over. She almost always does leg strengthening exercises exclusively.
The only other activity Josh had today was "Bike." He requested that for his schedule, so he gets 30-60 minutes/day to ride a stationary bike. Today he only lasted 20 minutes.
We were supposed to meet with the neurosurgeon between 1 and 3:00 today, but he didn't show until nearly 6:30. So le me splain. No. There is too much. Le me sum up. We have two options: (1) do nothing and (2) have a second shunt surgery.
(1) If we do nothing, Josh's progress may be limited to little more than what he can do now. The ventricles will stay big, and extra-axiel fluid will continue to accumulate in the frontal area. BUT it's possible that the fluid will not accumulate too much more.
(2) A second shunt surgery is not something most hospitals will do. Basically, with injuries as severe as Josh's, if the person isn't in a coma, it's considered a success and they won't push the limits. The risks with this surgery are (a) a 5-6% chance of infection, and if that happens, they have to remove the synthetic skull, wait three months, and install another synthetic skull. That would be really bad. And (b) it won't do any good. The potential upside is that they will be able to drain the frontal fluid and the ventricles and Josh may be able to progress further.
At the doctor's recommendation, we chose option 2, so the doctor offered to do Josh's surgery next Tuesday. We consented, then Mary said, "If you have a cancellation on Friday, maybe you can fit us in. We'd like to get this done." So Dr. Rubin said, "Let me call the OR and see what I can do." He will be gone Friday (it's his wife's birthday so they are flying to Aspen for the weekend), so he rearranged some surgeries and fit Josh in TOMORROW MORNING at 6:30. He will be out of surgery around 10:00 - with another permanent bump in his head and another visible catheter down his neck.
With this surgery, it is now much more likely that we will need to stay here in Denver well into October.
After suffering through ANOTHER miserable day of coughing so hard that it sounds like she is going to explode, and after consulting with her favorite pharmacist (thanks, Josh), Mary went to the ER AGAIN. This time they FINALLY diagnosed her with an advanced bronchial infection and prescribed antibiotics, an inhaler, and cough medicine with codeine. Why they did not do this the first time -- or how about the second time -- is absolutely beyond us. This journey we are taking through the medical world has really left us with serious concerns about the competency of our medical professions. Very alarming. In any case, with actual medicine in her hands now, we are HOPING that she will be able to get some sleep tonight FOR THE FIRST TIME IN A WEEK and start to actually get better. Sorry to be so negative, but the hell Mary has been through this past week is horrendous and both of us are pretty upset about it, as you may have gathered.
We are exhausted and are going to try to go to sleep. Wish us luck.
On a side note: Probably not a lot of you are watching too much TV (Mary's been watching all day and night this last week), but we think that the number of commercials advertising for cruises and Sandals in the Caribbean is bad form.
It just didn't make any sense. I'm so glad you were able to wake up one of those doctor's, Paul. If I didn't know better (and I have no idea who "better" is), I'd think they just don't care about the individual. They are interested in the disease, but not so much the patient. Wait until we have a one payer system and the government is in charge!
ReplyDeleteSwitch to Netflix to cut out all those commercials! Hope you finally start feeling better soon.
ReplyDeleteWe don't have access to Netflix in our apartment. Talk about the Dark Ages!
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