While in hospital I captured one of my favorite pictures of Ethan. I love how he's holding on to the crib while sleeping...he didn't even wake up when I took the picture. :)
Saturday, June 30, 2012
Home Since Monday
Evening! Ethan was discharged and we were home by 8:30 pm. Both the MRI and CT scans came back stable from previous images. Which is good but still raises a lot of questions. We have several follow up type appointments next week and the fitting for his new brace. I got a call today while at work that Ethan was throwing up again, but despite being sick four times he is still in good spirits and has lots of energy. We're just giving him pedialyte right now, but hope to restart calories tomorrow morning.
While in hospital I captured one of my favorite pictures of Ethan. I love how he's holding on to the crib while sleeping...he didn't even wake up when I took the picture. :)
While in hospital I captured one of my favorite pictures of Ethan. I love how he's holding on to the crib while sleeping...he didn't even wake up when I took the picture. :)
Saturday, June 23, 2012
Still Admitted
...but Ethan seems to finally be improving somewhat. He was more chatty today and awake for a good while. It seems after many tests, his brain is fine. WHEW!!! But his neurosurgeon wants to keep our December MRI date to keep a close eye on Ethan's cysts. Although they are stable they are now questioning their make up - which was a total shock to hear. But this information was 2nd hand and maybe it isn't as it sounded. I will reserve comment on this until we've had more follow ups.
Although they were trying to admit him under pneumonia, he clearly does not have a pneumonia. Our respirologist was by and she is running some additional testing since we are in hospital and it could shed light on his lungs and their function or any lack there of. We just had the CT scan this afternoon so do not yet know the results.
So with all other things ruled out, it seems it is a gastro-intestinal bug. It had a very weird presentation and that confused a lot of us (including the doctors). They took a stool sample today, so hopefully we know at some point what the results are. A swab was taken his first day and we are still awaiting the results to find out if it is a virus and which virus it might be. Apparently, they now send the swabs to a larger city nearby and have them run tests. It is much slower in providing responses. I spoke with the doctor who runs the therapy facility he attends and they assure me that none of the other children nor the staff have any signs of a GI bug...and there isn't any in our house, so where did he catch it?
We took Ethan off the monitors because for the CT the probe spots had to be removed and it was the second time they'd been removed, so hopefully he continues to behave himself tonight and continues to improve health wise. His sleep patterns are all out of whack again, and I hope that doesn't take long to change when he is home again.
Although they were trying to admit him under pneumonia, he clearly does not have a pneumonia. Our respirologist was by and she is running some additional testing since we are in hospital and it could shed light on his lungs and their function or any lack there of. We just had the CT scan this afternoon so do not yet know the results.
So with all other things ruled out, it seems it is a gastro-intestinal bug. It had a very weird presentation and that confused a lot of us (including the doctors). They took a stool sample today, so hopefully we know at some point what the results are. A swab was taken his first day and we are still awaiting the results to find out if it is a virus and which virus it might be. Apparently, they now send the swabs to a larger city nearby and have them run tests. It is much slower in providing responses. I spoke with the doctor who runs the therapy facility he attends and they assure me that none of the other children nor the staff have any signs of a GI bug...and there isn't any in our house, so where did he catch it?
We took Ethan off the monitors because for the CT the probe spots had to be removed and it was the second time they'd been removed, so hopefully he continues to behave himself tonight and continues to improve health wise. His sleep patterns are all out of whack again, and I hope that doesn't take long to change when he is home again.
Wednesday, June 20, 2012
Almost a Year...
That's how long we managed to stay out of hospital!
Ethan returned to therapy on Monday morning and I picked him up on Tuesday at 17:00 as previously planned. When I picked him up I saw a really lethargic, unwell little boy! He was so not himself. They had told me he'd been sick twice that day (during transfers - when moved from one position to another) but was in good spirits otherwise especially in the morning. He'd slept well the night before and had had a nap. For someone who was that well rested, he sure didn't look it! I dialed up Clayton on the cell phone when I got into the car and had him call the after hours clinic because I thought he needed to be seen. I didn't even get out of their driveway before Ethan had gotten sick twice. I picked up Clayton and Lorelei (and Ethan's suction machine and a couple other supplies) on our way to the after hours clinic and Ethan was sick again a couple times. At the clinic he was sick twice. When the doctor came in she said, "And why aren't you at Emerge?" And promptly sent us there. On the way, Ethan was sick again a couple times and in the ER he was sick one more time. Besides the ones in the car it has mainly been when he was transferred (IE: wheelchair to car seat). He was admitted last night and we've been running tests to see what is wrong. We're pretty certain it is not a respiratory illness (they did give him a dose of antibiotics in the ER but we have pushed not to have another set started until it is certain that he has a respiratory illness). He has not been behaving as though that may be his problem. His oxygen saturations are okay (a bit of dipping but not much), he is not working hard to breathe and does not have nasal flaring.
His chest x-ray never looks good, so there is no change there and he has not been sick again since last night...but not for lack of trying. He has been lurching a fair bit but since he doesn't have anything in his tummy he has not been able to get sick. He is only getting an IV right now and specific meds (that he gags on even though they go into his tummy). He has had a shunt series (x-rays of the shunt track) done and they show no concerns. We are awaiting an MRI of his head to see if there is anything going on there. He has had some loose stool, but they've been odd lately, and only started after the antibiotic/IV fluids last night. No one knows what it might be, either a gastro bug or something with his brain. Hopefully we'll find the answer soon. His MRI is tonight at 21:00, and we should know the results tomorrow morning...
He has had moments of more energy today, but still far from being his usually wiggly, smiley self!
Ethan returned to therapy on Monday morning and I picked him up on Tuesday at 17:00 as previously planned. When I picked him up I saw a really lethargic, unwell little boy! He was so not himself. They had told me he'd been sick twice that day (during transfers - when moved from one position to another) but was in good spirits otherwise especially in the morning. He'd slept well the night before and had had a nap. For someone who was that well rested, he sure didn't look it! I dialed up Clayton on the cell phone when I got into the car and had him call the after hours clinic because I thought he needed to be seen. I didn't even get out of their driveway before Ethan had gotten sick twice. I picked up Clayton and Lorelei (and Ethan's suction machine and a couple other supplies) on our way to the after hours clinic and Ethan was sick again a couple times. At the clinic he was sick twice. When the doctor came in she said, "And why aren't you at Emerge?" And promptly sent us there. On the way, Ethan was sick again a couple times and in the ER he was sick one more time. Besides the ones in the car it has mainly been when he was transferred (IE: wheelchair to car seat). He was admitted last night and we've been running tests to see what is wrong. We're pretty certain it is not a respiratory illness (they did give him a dose of antibiotics in the ER but we have pushed not to have another set started until it is certain that he has a respiratory illness). He has not been behaving as though that may be his problem. His oxygen saturations are okay (a bit of dipping but not much), he is not working hard to breathe and does not have nasal flaring.
His chest x-ray never looks good, so there is no change there and he has not been sick again since last night...but not for lack of trying. He has been lurching a fair bit but since he doesn't have anything in his tummy he has not been able to get sick. He is only getting an IV right now and specific meds (that he gags on even though they go into his tummy). He has had a shunt series (x-rays of the shunt track) done and they show no concerns. We are awaiting an MRI of his head to see if there is anything going on there. He has had some loose stool, but they've been odd lately, and only started after the antibiotic/IV fluids last night. No one knows what it might be, either a gastro bug or something with his brain. Hopefully we'll find the answer soon. His MRI is tonight at 21:00, and we should know the results tomorrow morning...
He has had moments of more energy today, but still far from being his usually wiggly, smiley self!
Wednesday, June 13, 2012
Long Time to Compose...
Ethan went to have a casting done to create a mold for his new back brace recently and it was very traumatic. They used fibre glass to create the mold so we laid him on his back and they took the mold of his front side which went pretty well despite me having to hold his hands above his head and Uncle Jon holding down his legs. Then we had to flip him over and Ethan started screaming and fighting...and it didn't stop the whole time we had him on his tummy. Ethan has not had tummy time since sometime in November 2011 or earlier and he's never been a fan of it. On the bright side, he is pretty strong and I guess it is good to work his lungs...but it was really hard to watch. I think he was a bit panicked about the ability to breathe too as his face was on the table and he couldn't easily turn his head to breathe. Because of all his yelling he was drooling and had nasal secretions. I tried to clear it for him with a tissue but it didn't work so well while trying to hold him down. To top it all off, the person creating the brace for Ethan didn't seem to think it was it was going to do much as his curvature is so far and beyond what the Boston brace was meant to do.
If I haven't mentioned it before, with scoliosis, once detected the typical pattern is to sit and watch...then you move on to bracing and once the scoliosis hits 45 degrees the general course is to do surgery. Ethan's scoliosis has progressed to above 70 degrees. We have been trying serial casting in hopes of holding off surgery until Ethan has reached his full growth potential. The earliest they have done a full fusion is at the age of 10. This leaves the growing rods or VEPTR (titanium rib) options...both of which require surgery every 4-6 months until skeletal maturity is achieved. The surgeries are to keep his spine straight at a 1 cm per surgery.
After watching his reaction to the casting for the brace, I started again researching the surgery option with lots of mixed results (and mixed emotions for me). There are several benefits to surgery- typically it straightens pretty well from the start, opens up the ribs allowing for full lung capacity, may relieve pain from being crunched up. Then there are the potential concerns...starting with the major one - surgery could cause death. Surgery can take up to 10 hours, they can lose up to 1/3 of their blood during surgery and it is difficult on healthy lungs. Given Ethan has chronic lung disease it could be harder for him. Add to that, that having surgery at an early age could lead to crankshaft phenomenon (where part of the spine continues to curve and rotate despite the fusion on the other part of the spine - front vs back), despite the possibility it could help back pain...it could cause chronic back pain in adulthood, the growing rods could cause spontaneously fusion of parts of the spine (a 4 year old vertebrae/rib size would not help an adult much), the growing rods could break or become infected... So much to process and try to figure out what is the right course of action for Ethan. If he isn't in pain now, I'd hate to do something that could put him in pain...is it better to do it now, will it actually improve his health? As you can see...so many questions too!
For now I have settled into waiting for the brace to see what it is able to do for him. Meanwhile, I will start to inquire with the various specialists to see what they have to say about surgery and his health going into it (IE are his lungs strong enough to handle such a surgery? has his heart moved due to the scoliosis?).
On a totally unrelated note...Lorelei got her first two wheeler last week. She was too sick to test it out, so only got to try it last night. She has been bugging for one for a bit.
If I haven't mentioned it before, with scoliosis, once detected the typical pattern is to sit and watch...then you move on to bracing and once the scoliosis hits 45 degrees the general course is to do surgery. Ethan's scoliosis has progressed to above 70 degrees. We have been trying serial casting in hopes of holding off surgery until Ethan has reached his full growth potential. The earliest they have done a full fusion is at the age of 10. This leaves the growing rods or VEPTR (titanium rib) options...both of which require surgery every 4-6 months until skeletal maturity is achieved. The surgeries are to keep his spine straight at a 1 cm per surgery.
After watching his reaction to the casting for the brace, I started again researching the surgery option with lots of mixed results (and mixed emotions for me). There are several benefits to surgery- typically it straightens pretty well from the start, opens up the ribs allowing for full lung capacity, may relieve pain from being crunched up. Then there are the potential concerns...starting with the major one - surgery could cause death. Surgery can take up to 10 hours, they can lose up to 1/3 of their blood during surgery and it is difficult on healthy lungs. Given Ethan has chronic lung disease it could be harder for him. Add to that, that having surgery at an early age could lead to crankshaft phenomenon (where part of the spine continues to curve and rotate despite the fusion on the other part of the spine - front vs back), despite the possibility it could help back pain...it could cause chronic back pain in adulthood, the growing rods could cause spontaneously fusion of parts of the spine (a 4 year old vertebrae/rib size would not help an adult much), the growing rods could break or become infected... So much to process and try to figure out what is the right course of action for Ethan. If he isn't in pain now, I'd hate to do something that could put him in pain...is it better to do it now, will it actually improve his health? As you can see...so many questions too!
For now I have settled into waiting for the brace to see what it is able to do for him. Meanwhile, I will start to inquire with the various specialists to see what they have to say about surgery and his health going into it (IE are his lungs strong enough to handle such a surgery? has his heart moved due to the scoliosis?).
On a totally unrelated note...Lorelei got her first two wheeler last week. She was too sick to test it out, so only got to try it last night. She has been bugging for one for a bit.
Watch where you're going!
It will take some practise, which hopefully she's up to the challenge of. As you can see above, she kind of leans in to Clayton and that won't work so when when trying to balance on her own.
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