Friday, June 26, 2015
9 month Post-op MRI Results
Auggie's 9 month post-op MRI looks good - his CSF flow has improved and the syrinx has decreased by about 60% since pre-surgery. He will need another MRI in 12 months. I'll post images shortly.
Monday, February 9, 2015
3 month Post-Op MRI shows good news!
Auggie recovered after his constipation and is now back on track with eating and drinking. We never did the endoscopy because he started eating again. He is still on miralax - about 1 tablespoon daily to prevent constipation. It seems to be working. The MRI in December showed that his syrinx has shrunk by about 30%. This is great news. The next MRI will be in July and we hope to see further improvement then.
Friday, October 24, 2014
GI complications after surgery
Surgery is almost 7 weeks behind us now and we are dealing with a host of issues. Auggie has not really been eating for about a month now. He got constipated and started holding his urine. We have been in to see his gastroenterologist and we did a whole treatment for constipation including enemas, suppositories and miralax. We feel like he is better but the appetite has not returned. In 2 weeks he will have an endoscopy to look for obstructions, inflammation and anything else that could be wrong in his upper GI tract. They will also do a biopsy to check for celiac disease and the presence of eosinophils - the little buggers that show up in your intestine when there is a food allergy. We hope this is just a slow recovery after being constipated and nothing more serious. He is also having his follow-up MRI 1 month sooner than planned to make sure everything is okay there. We're also planning a renal ultrasound and a modified swallow study (x-ray movie of him swallowing)
Surgery Day and Recovery
I am writing this a few weeks after surgery - it was just too much to keep up with this blog! After we checked in for surgery we had to force him to drink the pink medicine (valium). He was not happy about that but once it kicked in he was giddy and was wheeled away from me with no problems - the surgeon reassured me, gave me a hug and then walked into the operating room to start preparations. The waiting was the hardest part. After surgery the neurosurgeon came and talked to us and told us that it went well, but there had been quite a lot of bleeding and they had given him plasma. They had actually taken off a bit of C2 to make more room - normally only C1 is removed (the first vertebrae). We elected to participate in a genetic study so the bone was mailed off to a research center, I believe at Duke University.
After recovery he was moved to the PICU where he looked up for a little but was mostly knocked out after anesthesia and pain meds - fentanyl and Tylenol were given for pain through his IV along with adavan and Zofran for nausea and vomiting. He vomited bile a couple of times and then he was better. He was to receive amicar (the medication that helps keep blood clots formed) for the next 5 days. After 2 nights in the PICU he was moved to the floor and we had a private room with bathroom. He didn't really start eating until day 4 and then only nibbles. His neck was so sore and he was barely able to walk. The physical therapist came to work with him a couple of times and he could barely move - I thought recovery was going to take forever. We were discharged after 5 nights at the hospital and by day 2 at home he was moving so much better. He was started on a steroid while at the hospital to help his appetite and we tapered it off at home. He actually was eating really well the first 10 days after surgery and then he got sick and stopped eating.
At home we continued to give Tylenol for a week or so until his headaches went away. The incision healed nicely and we kept it covered for a good 2 weeks so afraid that he would pick and get it infected. Now the sutures have dissolved and his scar is looking reddish.
After recovery he was moved to the PICU where he looked up for a little but was mostly knocked out after anesthesia and pain meds - fentanyl and Tylenol were given for pain through his IV along with adavan and Zofran for nausea and vomiting. He vomited bile a couple of times and then he was better. He was to receive amicar (the medication that helps keep blood clots formed) for the next 5 days. After 2 nights in the PICU he was moved to the floor and we had a private room with bathroom. He didn't really start eating until day 4 and then only nibbles. His neck was so sore and he was barely able to walk. The physical therapist came to work with him a couple of times and he could barely move - I thought recovery was going to take forever. We were discharged after 5 nights at the hospital and by day 2 at home he was moving so much better. He was started on a steroid while at the hospital to help his appetite and we tapered it off at home. He actually was eating really well the first 10 days after surgery and then he got sick and stopped eating.
At home we continued to give Tylenol for a week or so until his headaches went away. The incision healed nicely and we kept it covered for a good 2 weeks so afraid that he would pick and get it infected. Now the sutures have dissolved and his scar is looking reddish.
Auggie's posterior fossa decompression surgery: Pre-op
Pre-op MRI
Auggie had a very difficult time with his quick MRI, He had such a bad experience last time after his fall that he associates the whole experience with pain and discomfort, plus he is terrified of the noise. Even though we had practiced at home and pretended that we were astronauts going on a mission in our space capsules he would not have anything to do with it. Basically we had to swaddle him and force him to lay down. I was able to lay just below him between his legs and try to comfort him - I think I promised him every toy in the world if he would just lay still. We got through it after much screaming.
Next we met with the anesthesiologist to go through medical history and the dietary restrictions for the following morning. After that we met with he neurosurgeon to go over the procedure and sign consent and waiver forms. We were told that the MRI still showed chiari malformation with a significant syrinx. Since he has a blood disorder they were going to give him two medicines prior to surgery to help with clotting - amicar and novoseven. In addition they would have plasma at their disposal if needed for heavy bleeding. Off to the hotel now for some rest before the big day....
Auggie had a very difficult time with his quick MRI, He had such a bad experience last time after his fall that he associates the whole experience with pain and discomfort, plus he is terrified of the noise. Even though we had practiced at home and pretended that we were astronauts going on a mission in our space capsules he would not have anything to do with it. Basically we had to swaddle him and force him to lay down. I was able to lay just below him between his legs and try to comfort him - I think I promised him every toy in the world if he would just lay still. We got through it after much screaming.
Next we met with the anesthesiologist to go through medical history and the dietary restrictions for the following morning. After that we met with he neurosurgeon to go over the procedure and sign consent and waiver forms. We were told that the MRI still showed chiari malformation with a significant syrinx. Since he has a blood disorder they were going to give him two medicines prior to surgery to help with clotting - amicar and novoseven. In addition they would have plasma at their disposal if needed for heavy bleeding. Off to the hotel now for some rest before the big day....
Monday, September 1, 2014
Wednesday, August 20, 2014
Noonan Syndrome test result is positive!
We just found out a few days ago after waiting over 2 months for the results that Auggie has Noonan Syndrome (NS). We don't know yet which gene it is that is causing it as there are 11 different possibilities, but we will meet with the genetics team later in September after his surgery to find out more. We are not surprised as we suspected it all along - my husband an I were actually the ones who requested that the test be done as our research showed too many similarities between Auggie's symptoms and other people with NS, specifically valvar pulmonary stenosis, bleeding disorder, easy bruising, developmental delays, growth problems, and specific facial features.
Our genetic counselor asked me how it felt to have this answer and I must say that it is a relief to know which condition he has so that he can get the help he needs and we can communicate his needs to others better, but he is still just our fun-loving Auggie-doggie!!
Our genetic counselor asked me how it felt to have this answer and I must say that it is a relief to know which condition he has so that he can get the help he needs and we can communicate his needs to others better, but he is still just our fun-loving Auggie-doggie!!
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