Update from Sedated MRI, VCUG, and Sleep Study Follow-up
Before I get to the results from the tests and appointments from the last two days, I'd like to reflect on something first. Whenever we are fortunate to stay at the Ronald McDonald House in Cincinnati we are always treated so kindly by the staff and volunteers. It's always so nice to see volunteers who were there when I was pregnant with Kennedy. I was fortunate enough to eat breakfast with one of those volunteers yesterday morning while Kennedy was in her sedated MRI. He is such a kind man who loves to sit and listen to the stories of the house guests. My Grandma would always talk with him while I was in the hospital on bed rest. This morning before we checked out I was so happy to introduce Kennedy to him. He's an amazing man and I am so thankful for his friendship.
Monday morning at 6:45AM EST, Kennedy and I arrived in the Radiology department at CCHMC. I was first informed that I would be able to stay with Kennedy after they put her to sleep, but would need to leave before they inserted her IV. After realizing she has central and obstructive apnea, the Anesthesiologist thought it would be better if I left before they put her to sleep. They also informed me that due to her apnea they'd be placing her on oxygen for her MRI. This was her first MRI on her spine since she was in the NICU last year. They told me that because they were imaging her brain and spine that she'd be in the MRI for about 3 hours. When they were finally ready to take her back I followed close behind and place her on the stretcher. Within a few minutes I kissed her good bye and was escorted back to the concourse. Thank goodness for my Kentucky Mom, Cheryl, who was able to talk me through my tears and fears. I hated leaving Kennedy and couldn't imagine what it will be like when I have to leave her for her first surgery. Shortly before 9AM I walked back over to the Ronald McDonald house to eat breakfast. Around 10:30AM, the nurse called to tell me Kennedy was out of her MRI and would be ready for me in recovery.
When I arrived in recovery Kennedy was eating some graham crackers and drinking apple juice. She seemed to come out of the anesthesia well, although she was a little groggy. After leaving recovery, we headed up to Dr. Stevenson's office to discuss the MRI results. He explained that even though Kennedy's Chiari (hindbrain hernia) reversed in utero and after birth, she still had one. He believes that it's her chiari that is directly causing her apnea. Right now he'd like to give her a couple more months to outgrow it. If she doesn't, she will either need decompression surgery or a shunt to relieve the pressure on the cerebellum. If she has the decompression surgery, they will go into the back of her neck and remove pieces of bone. This will allow the cerebellum to have more room in her spinal column. We are hoping and praying that the apnea will correct itself and she will not have to have either procedure. We will be going back to Cincinnati in February for a brain MRI and follow-up with Dr. Stevenson to see what the next plan of action is.
After we finished up with Doctor Stevenson, we went back down to Radiology for Kennedy's VCUG/Xray of her kidneys and bladder. Basically they placed a catheter in her and filled her bladder with liquid to make sure she wasn't refluxing into her kidneys. While doing all of this they were taking x-rays. She'd had this procedure done shortly after she was born. The Urologist wanted to make sure nothing had changed since the last procedure. Thankfully she's not refluxing and doesn't need to be cathed at this time.
While we were in the waiting room to have the VCUG I met another family whose little boy also has Spina Bifida. Like Kennedy, his lesion is L4/L5-S2 and the opening in his back didn't have a sac, like most babies the condition do. This young man was 5 years old and was such a cutie. He was rolling around the waiting room saying hi to everyone. He asked me what Kennedy was there for and I told him. His mom over heard me and said that's what he was there for too. They had just moved to Dayton from Saint Louis. It's amazing how you almost speak another language when you are discussing Spina Bifida with another parent whose child has the same condition. She had told me that she had opted not to have fetal surgery because at the time it was still too new and she was worried about the risks. It was so nice to have the opportunity to chat with her while we were waiting for the kids to be taken back for their VCUG's. It was a gentle reminder that every child with Spina Bifida is different.
This morning we had a follow-up with Pulmonary to review the results from the sleep study Kennedy had back in August. Dr. Dye explained that her obstructive apnea was getting better, but her central apnea was not. He would like for her to have another sleep study in February to determine if things are still getting better. He'd like Kennedy to have the sleep study before we see Dr. Stevenson so he is able to have the results available to him at the time of her MRI.
It looks like we will making a trip to Cincinnati at least once a month starting in January. We will be going up at the end of January so Kennedy can have a manual muscle test. She had this test performed shortly before she was released from the NICU to determine where the damage in her spinal chord starts. They will continue to do this test as she gets older. In February we will be heading up there twice. Once for the sleep study and then again for the MRI and follow-up with Dr. Stevenson. In March we will be heading up there for Spina Bifida clinic.
Here is an MRI image of Kennedy's chiari. This was taken during yesterday's MRI.
Monday morning at 6:45AM EST, Kennedy and I arrived in the Radiology department at CCHMC. I was first informed that I would be able to stay with Kennedy after they put her to sleep, but would need to leave before they inserted her IV. After realizing she has central and obstructive apnea, the Anesthesiologist thought it would be better if I left before they put her to sleep. They also informed me that due to her apnea they'd be placing her on oxygen for her MRI. This was her first MRI on her spine since she was in the NICU last year. They told me that because they were imaging her brain and spine that she'd be in the MRI for about 3 hours. When they were finally ready to take her back I followed close behind and place her on the stretcher. Within a few minutes I kissed her good bye and was escorted back to the concourse. Thank goodness for my Kentucky Mom, Cheryl, who was able to talk me through my tears and fears. I hated leaving Kennedy and couldn't imagine what it will be like when I have to leave her for her first surgery. Shortly before 9AM I walked back over to the Ronald McDonald house to eat breakfast. Around 10:30AM, the nurse called to tell me Kennedy was out of her MRI and would be ready for me in recovery.
When I arrived in recovery Kennedy was eating some graham crackers and drinking apple juice. She seemed to come out of the anesthesia well, although she was a little groggy. After leaving recovery, we headed up to Dr. Stevenson's office to discuss the MRI results. He explained that even though Kennedy's Chiari (hindbrain hernia) reversed in utero and after birth, she still had one. He believes that it's her chiari that is directly causing her apnea. Right now he'd like to give her a couple more months to outgrow it. If she doesn't, she will either need decompression surgery or a shunt to relieve the pressure on the cerebellum. If she has the decompression surgery, they will go into the back of her neck and remove pieces of bone. This will allow the cerebellum to have more room in her spinal column. We are hoping and praying that the apnea will correct itself and she will not have to have either procedure. We will be going back to Cincinnati in February for a brain MRI and follow-up with Dr. Stevenson to see what the next plan of action is.
After we finished up with Doctor Stevenson, we went back down to Radiology for Kennedy's VCUG/Xray of her kidneys and bladder. Basically they placed a catheter in her and filled her bladder with liquid to make sure she wasn't refluxing into her kidneys. While doing all of this they were taking x-rays. She'd had this procedure done shortly after she was born. The Urologist wanted to make sure nothing had changed since the last procedure. Thankfully she's not refluxing and doesn't need to be cathed at this time.
While we were in the waiting room to have the VCUG I met another family whose little boy also has Spina Bifida. Like Kennedy, his lesion is L4/L5-S2 and the opening in his back didn't have a sac, like most babies the condition do. This young man was 5 years old and was such a cutie. He was rolling around the waiting room saying hi to everyone. He asked me what Kennedy was there for and I told him. His mom over heard me and said that's what he was there for too. They had just moved to Dayton from Saint Louis. It's amazing how you almost speak another language when you are discussing Spina Bifida with another parent whose child has the same condition. She had told me that she had opted not to have fetal surgery because at the time it was still too new and she was worried about the risks. It was so nice to have the opportunity to chat with her while we were waiting for the kids to be taken back for their VCUG's. It was a gentle reminder that every child with Spina Bifida is different.
This morning we had a follow-up with Pulmonary to review the results from the sleep study Kennedy had back in August. Dr. Dye explained that her obstructive apnea was getting better, but her central apnea was not. He would like for her to have another sleep study in February to determine if things are still getting better. He'd like Kennedy to have the sleep study before we see Dr. Stevenson so he is able to have the results available to him at the time of her MRI.
It looks like we will making a trip to Cincinnati at least once a month starting in January. We will be going up at the end of January so Kennedy can have a manual muscle test. She had this test performed shortly before she was released from the NICU to determine where the damage in her spinal chord starts. They will continue to do this test as she gets older. In February we will be heading up there twice. Once for the sleep study and then again for the MRI and follow-up with Dr. Stevenson. In March we will be heading up there for Spina Bifida clinic.
Here is an MRI image of Kennedy's chiari. This was taken during yesterday's MRI.
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