More Prep
The longest scariest day so far is over! We had to stop Max's fluid intake at 7:15am and they finally let me in to Recovery at 5:15pm. He is awake now, and in a room up in 4A which is where he will be for his transplant as well. The admitting for that is scheduled for Friday, but today . . . that's what this note is all about.
1. Once he was asleep Max first had a bronchoscopy. This is where they use a tiny camera and some other small stuff and look around the inside of the lungs. The preliminary report on this was very good. They also took some samples from inside to test for any lingering infections. Max's lungs have been the cause for a lot of concern since we've arrived, so we were pleased with the results.
2. Next, Max had new PE Tubes put in. He had tubes already, but as we understand it, they want the kids to have as clean of a slate as possible.
3. Spinal Tap. Not the movie. Around here it's called a "lumbar puncture." Our transplant doc, Dr. Grewal, did the procedure himself and came out to tell us that Max's pressure measured very well and that it did NOT appear that he would need a shunt because of the pressure he was seeing.
4. His Hickman catheter was placed 4th. This was over quickly, but it involved connecting his jugular vein in his neck with a "foreign body" - a catheter tube and then passing it under the skin and out of his chest. This is the standard look for transplant kids. The end of the tubing on the outside branches off into two other tubes and can be used to administer meds and draw blood. You can actually feel the tube under the skin, and that's kind of creepy. Hopefully Max will learn not to pull on them, since he's going to have it in for at least a year.
5. MRI of the head/CT Scan of the chest. We haven't heard yet about the CT, but the MRI went well as far as the head was concerned regarding hydrocephalus. Again it showed that Max needs help, but his skull is still soft and can handle the added pressure his disease is giving him. The best solution for Max's hydrocephalus now is transplant, not a shunt. This was a great relief.
The MRI did, however, point to a more serious concern down the road. Once in recovery I met Dr. Peters. He's the head of the transplant team here, and head of the inherited metabolic storage disorders, and a pretty important dude. He also happened to be the Doc on the unit during recovery. He said the MRI showed that Max's vertebrae at the top of the spine are immature and potentially dangerous to his spinal column. We will learn more about this tomorrow, but this is something that he has been seeing in other Hurler children. His vertebrae are at risk of sliding apart from each other and causing severe spinal damage. The surgery to correct this is quite severe as well. He said we won't be worrying about this prior to transplant, but it will have to be monitored. Some kids do grow out of this on their own, over several years.
After his procedures, they had to "extubate" him and though they could have left him on a vent overnight, they were able to get the tube out and get Max onto regular oxygen fairly quickly. When I got to him, his tube was out and he was asleep behind an oxygen mask. The dressing from his Hickman was a little bloody and he still had his bladder catheter so he looked a little weary. Still, I can't easily describe the pride I had for my son for getting through what obviously was a very full day.
Margaret joined me once we were out of recovery and upstairs on the BMT unit. She'll be staying with our little guy all night. This is the unit where we will have Max for the next 6 months or so. Depending on the results of the samples taken from Max's lungs, if all goes well he'll be admitted Friday and chemo will start Saturday.
I'm back at Ronald's house now and I just got Grace to sleep (at 11). She's had a fever for 3 days but appears to be coming out of it. She 's doing a really great job trying to understand all of this and still be a 3 year old. Hopefully she won't pull his Hickman line out of his chest. Considering it's attached to his jugular, things could get messy quickly.
Finally, I realized that we haven't been able to express our gratitude in these updates, but when we get a chance we would like to express further our appreciation for two recent events: First my sister Dana sponsored a "pampered chef" party in Max's honor and our first official fundraising effort was a success. Second, my friend Joel Lava paid us a visit (he was in town for a wedding) and since he lives in LA, it was an awkward coincidence to be able to see each other, but one the meant a lot nonetheless. It's nice to know that we are being thought of so kindly and when we get a chance we will try to express our thanks more thoroughly.
Please continue to root for our little guy. His strength and determination will be put to the test shortly, and he needs all your help.
Sleepily yours,
mike
PS Our waiting room material today contained a lot more information about Bob Hope's links to Minnesota than I ever knew existed. "It's great to be here in Minnesota, land of 10,000 lakes. And the way I golf, I've been in all of them." Bob Hope (RIP)
1. Once he was asleep Max first had a bronchoscopy. This is where they use a tiny camera and some other small stuff and look around the inside of the lungs. The preliminary report on this was very good. They also took some samples from inside to test for any lingering infections. Max's lungs have been the cause for a lot of concern since we've arrived, so we were pleased with the results.
2. Next, Max had new PE Tubes put in. He had tubes already, but as we understand it, they want the kids to have as clean of a slate as possible.
3. Spinal Tap. Not the movie. Around here it's called a "lumbar puncture." Our transplant doc, Dr. Grewal, did the procedure himself and came out to tell us that Max's pressure measured very well and that it did NOT appear that he would need a shunt because of the pressure he was seeing.
4. His Hickman catheter was placed 4th. This was over quickly, but it involved connecting his jugular vein in his neck with a "foreign body" - a catheter tube and then passing it under the skin and out of his chest. This is the standard look for transplant kids. The end of the tubing on the outside branches off into two other tubes and can be used to administer meds and draw blood. You can actually feel the tube under the skin, and that's kind of creepy. Hopefully Max will learn not to pull on them, since he's going to have it in for at least a year.
5. MRI of the head/CT Scan of the chest. We haven't heard yet about the CT, but the MRI went well as far as the head was concerned regarding hydrocephalus. Again it showed that Max needs help, but his skull is still soft and can handle the added pressure his disease is giving him. The best solution for Max's hydrocephalus now is transplant, not a shunt. This was a great relief.
The MRI did, however, point to a more serious concern down the road. Once in recovery I met Dr. Peters. He's the head of the transplant team here, and head of the inherited metabolic storage disorders, and a pretty important dude. He also happened to be the Doc on the unit during recovery. He said the MRI showed that Max's vertebrae at the top of the spine are immature and potentially dangerous to his spinal column. We will learn more about this tomorrow, but this is something that he has been seeing in other Hurler children. His vertebrae are at risk of sliding apart from each other and causing severe spinal damage. The surgery to correct this is quite severe as well. He said we won't be worrying about this prior to transplant, but it will have to be monitored. Some kids do grow out of this on their own, over several years.
After his procedures, they had to "extubate" him and though they could have left him on a vent overnight, they were able to get the tube out and get Max onto regular oxygen fairly quickly. When I got to him, his tube was out and he was asleep behind an oxygen mask. The dressing from his Hickman was a little bloody and he still had his bladder catheter so he looked a little weary. Still, I can't easily describe the pride I had for my son for getting through what obviously was a very full day.
Margaret joined me once we were out of recovery and upstairs on the BMT unit. She'll be staying with our little guy all night. This is the unit where we will have Max for the next 6 months or so. Depending on the results of the samples taken from Max's lungs, if all goes well he'll be admitted Friday and chemo will start Saturday.
I'm back at Ronald's house now and I just got Grace to sleep (at 11). She's had a fever for 3 days but appears to be coming out of it. She 's doing a really great job trying to understand all of this and still be a 3 year old. Hopefully she won't pull his Hickman line out of his chest. Considering it's attached to his jugular, things could get messy quickly.
Finally, I realized that we haven't been able to express our gratitude in these updates, but when we get a chance we would like to express further our appreciation for two recent events: First my sister Dana sponsored a "pampered chef" party in Max's honor and our first official fundraising effort was a success. Second, my friend Joel Lava paid us a visit (he was in town for a wedding) and since he lives in LA, it was an awkward coincidence to be able to see each other, but one the meant a lot nonetheless. It's nice to know that we are being thought of so kindly and when we get a chance we will try to express our thanks more thoroughly.
Please continue to root for our little guy. His strength and determination will be put to the test shortly, and he needs all your help.
Sleepily yours,
mike
PS Our waiting room material today contained a lot more information about Bob Hope's links to Minnesota than I ever knew existed. "It's great to be here in Minnesota, land of 10,000 lakes. And the way I golf, I've been in all of them." Bob Hope (RIP)
posted by Mike Ciacciarelli
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