Ever notice sometimes no matter how well you plan for something, a small thing can fully change your plans?
Okay, so in this case it wasn't something small it was something totally out of the blue. We found out yesterday that Ethan will not be proceeding with spinal surgery next week as tentatively planned.
You might think it is because he is sick with a cold or something...but you'd be surprisingly wrong! Ethan is in good health right now and doing well. It is because plans have changed. Ethan's images were shared with several orthopaedic surgeons over the past month and the one thing everyone can agree on (including us) is that he needs surgery. It is just what type of surgery that is now in question.
Given the severity of Ethan's scoliosis, the surgeon would like to start by putting him in traction. Not the type of traction you usually see in movies, but Halo traction...which the surgeon describes best as a crown of thorns. This would be for about a month and then he would like to proceed with Shilla spine surgery. It is considered experimental and new (has been around for about 10 years), but it borrows elements from the tried and true fusion or growing rods surgeries. It would mean that a small part of his spine (where the scoliosis is the worst) would be fused and then rods would be placed along the spine with special screws that allow the spine to grow as it normally would and the rods would expand (or grow) with the spine. It would significantly reduce the amount of surgeries he requires which would reduce the numerous risks for infection related to multiple surgeries.
We do not have any details yet on when and how we will proceed but hope to learn more later in the week after the surgeon consults with Ethan's neurosurgeon. It sounds very promising though...
Tuesday, March 19, 2013
Monday, March 18, 2013
I keep falling behind in posting...
Late in January, Ethan got one of his 4-6 year immunizations and had a bit of a reaction to it again. This is the second time he's had a reaction to an immunization but it wasn't as bad as the one from his flu shot. He also saw his neurosurgeon for a follow up appointment and we discussed his December MRI. His imaging is a bit of a mystery (as it always has been). The space where his Dandy-Walker Cyst is is still quite large but it is not clear whether or not it is filled with fluid. Since he is not showing any symptoms we're going to continue to monitor him especially since his back is more of an issue right now. Ideally once things are underway with his scoliosis repair, the neurosurgeon would like to see him orally feeding. Apparently it is a good way see how the cyst is affecting him...but it would be hard to tell if his swallow issues are because he hasn't orally fed since November 2010 or if it is a neurological issue. Kind of a catch 22...
On the plus side, Ethan's neurosurgeon has agreed to be available for Ethan's tentative surgery date on March 26th should the orthopaedic surgeon be willing to have an extra person in the OR. We need to find out where the VEPTR will be placed to be sure it avoids the shunt area.
We also saw his cardiologist last month and we won't have to return for 2 years now. His ASD has corrected but his left pulmonary artery is still constricted. It does not seem to be causing his heart any undue stress so we can just monitor it for now.
Recently Ethan was working with a communication iPad for about 4 weeks and he did pretty well. He mastered the phrases, "I want to watch cartoons" and "I need help". With a bit of help he was able to 'say' "I want to play with my iPad". It was pretty neat to see the progression. Since it was just a loaner, we were only able to use it for the 4 weeks. They had a team meeting and decided that they support the idea of proceeding with another iPad for communication purposes. We are now awaiting its arrival. An interesting development recently is that he is pitching full out temper tantrums when things don't go his way. I think a lot of it is age appropriate behaviour, but also think that he is feeling frustrated.
Ethan also tested a new standing frame recently. It is the third one we've trialed. It has been a long time since we've had a standing frame in the house and he did really well with it and seemed to enjoy it. I think he likes the different vantage point. Surprisingly we were able to trial it for longer than was initially anticipated which was great but now we are without again. It is the one national product we tried and it has been our favourite. We need to wait for everything to come through on his walker before we can submit a request for funding assistance with the standing frame. While it was here, we had him in it 2-3 times a day as time permitted.
His respirology appointment went well, they said his lungs sounded really great and that he appears to be doing really well. She thinks that the VEPTR surgery would be of benefit for Ethan.
He had his second hair cut and it went pretty well (although there were more people at the salon than we would have liked). Lorelei joined us and wanted to be part of the photos. He looks so cute with his new haircut (large one below)!
Also big news...my baby boy turned 5 last month! Can you believe it?! We were not able to celebrate with him on his birthday as he was in therapy. We did pick him up early from therapy but that was because he started to show symptoms of being sick with a cold. We celebrated with an ice cream cake and let him try a taste of whipped cream (top centre picture below)...I think most of it came back out of his mouth as he didn't quite seem to know what to do with it (or didn't like the taste/sensation). He did enjoy opening his presents and has likes playing with his new toys.
On the plus side, Ethan's neurosurgeon has agreed to be available for Ethan's tentative surgery date on March 26th should the orthopaedic surgeon be willing to have an extra person in the OR. We need to find out where the VEPTR will be placed to be sure it avoids the shunt area.
We also saw his cardiologist last month and we won't have to return for 2 years now. His ASD has corrected but his left pulmonary artery is still constricted. It does not seem to be causing his heart any undue stress so we can just monitor it for now.
Recently Ethan was working with a communication iPad for about 4 weeks and he did pretty well. He mastered the phrases, "I want to watch cartoons" and "I need help". With a bit of help he was able to 'say' "I want to play with my iPad". It was pretty neat to see the progression. Since it was just a loaner, we were only able to use it for the 4 weeks. They had a team meeting and decided that they support the idea of proceeding with another iPad for communication purposes. We are now awaiting its arrival. An interesting development recently is that he is pitching full out temper tantrums when things don't go his way. I think a lot of it is age appropriate behaviour, but also think that he is feeling frustrated.
Ethan also tested a new standing frame recently. It is the third one we've trialed. It has been a long time since we've had a standing frame in the house and he did really well with it and seemed to enjoy it. I think he likes the different vantage point. Surprisingly we were able to trial it for longer than was initially anticipated which was great but now we are without again. It is the one national product we tried and it has been our favourite. We need to wait for everything to come through on his walker before we can submit a request for funding assistance with the standing frame. While it was here, we had him in it 2-3 times a day as time permitted.
His respirology appointment went well, they said his lungs sounded really great and that he appears to be doing really well. She thinks that the VEPTR surgery would be of benefit for Ethan.
He had his second hair cut and it went pretty well (although there were more people at the salon than we would have liked). Lorelei joined us and wanted to be part of the photos. He looks so cute with his new haircut (large one below)!
Also big news...my baby boy turned 5 last month! Can you believe it?! We were not able to celebrate with him on his birthday as he was in therapy. We did pick him up early from therapy but that was because he started to show symptoms of being sick with a cold. We celebrated with an ice cream cake and let him try a taste of whipped cream (top centre picture below)...I think most of it came back out of his mouth as he didn't quite seem to know what to do with it (or didn't like the taste/sensation). He did enjoy opening his presents and has likes playing with his new toys.
With his upcoming surgery, we felt it was better to move Ethan from his crib to the larger bed that Lorelei was using in a previous post (she is now using a twin bed which friends have loaned us). With spinal correction, there is a high likelihood that he will grow an additional 2-4 inches so we thought that it was better to have him used to the larger bed before he comes home from surgery. I think he likes the extra space...but our bedroom is now even more cramped with his bed in there - we sure hope we have success in finding a new home soon...
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