So, here are the rest of the details of our scare with Spencer. After the code was called we were taken to the ER. Spencer had "come to", but was still not himself. I just wanted to see him smile and then I would know he was okay. He is such a charmer and ALWAYS smiling. So, to see him lying there so lethargic was very, very hard.
They decided to do the some basic, routine tests-blood work, x-ray to check for pneumonia, and a nasal swab for RSV. We were almost immediately told that Spencer had an ALTE (an apparent life threatening event). I was nauseous hearing that Spence had something happen that had quote "threatened his life". In the meantime, they called over to the Skeletal Dysplaisa Center where was Spencer was scheduled for an appointment. The specialists there had a pretty good idea of what had happened. It seems many kids with Spencer's form of dwarfism have something called Foramen Magnum Compression or in simpler terms his skull was pinching off his spinal cord. Apparently 2-5% of babies die from this complication. It's still difficult to think we almost lost him right there in the parking garage.
We weren't in the ER long before they decided to move us to a room for the night. Spencer would have an MRI in the morning to confirm that he had the compression. By that night Spencer was pretty much back to himself, except with a lot of extras wires and monitors!!
Spencer slept pretty well that night, but mom and dad were another story! I don't think Scott and I slept at all that night. Every time a monitor beeped we practically knocked each other over getting to his crib.
Because of the MRI Spencer couldn't nurse after midnight and it was really hard for him. He was such a trooper and really hung in there! The MRI in and of itself was nerve racking. He would have to be put under for it and from what I had already read little people (lp's) need managed more during general anesthesia. One more thing to worry about!
It seemed like an eternity that he was gone during the MRI, but he came through it just great! He was so sweet when he woke up! What a trooper!!
We waited anxiously for the doctor to come in and tell us the results. Finally, the doc came in and asked us to come out to the nurses desk so he could show us the images from the MRI on the computer. Well, you didn't have to be a rocket scientist (or even a doctor-lol) to see right where his skull was pinching his spinal cord. He would need surgery, as soon as possible, to decompress the area. Basically, they would have to open him up from the base of the skull along the spine and remove the part of the skull pinching his spinal cord.
Needless to say, we would not be going home anytime soon. It was Friday and the soonest they could schedule the surgery for was Tuesday. It was going to take a major team of people for this surgery and that was the earliest they could get them assembled. So, until then Spence would have to be constantly monitored and we would have to pray he did not have another episode.
It was a long, uneventful next 4 days. We saw various doctors, including a few we had been scheduled to see that fateful Thursday. Spencer had x-rays called a Skeletal Survey and bloodwork done to see if he had the common mutation that caused his type of dwarfism.
I also learned that I was my child's advocate. So, whatever it took to get him the best care possible I was going to do it. I learned Spencer was a "hard stick" and to ask for the MedFlight/transport team to do any bloodwork and IV's. I learned that it was okay to ask the nurses to wait to do vitals when Spencer was nursing. I learned being an advocate meant not sleep much!
The day of Spencer's decompression surgery came and I had a great sense of peace. Don't get me wrong I was still anxious, but I knew we literally had hundreds, if not thousands, of people praying for him from coast to coast.
It was so hard to hand him over to the nurses in anesthesia though. After all we'd been through I guess I was scared to let him go. My awesome parents were there by our side and suggested we go to the cafeteria and try to relax. The funniest thing happened on the way there. We are rounding the corner and I see the neurosurgeon walking out of the cafeteria with a cup of coffee in hand! I'm thinking, "hey my kid is in surgery, aren't you suppose to be there too??!!" But it was weirdly reassuring that to us what was major surgery was no big deal to him.
So, here is the rest of our stay in a nutshell. The surgery went perfectly! The neurosurgeon's wonderful (and I do mean WONDERFUL!) nurse Renee said it couldn't have went any better. I told her that was because we had so many people praying and she said she knew that without me even telling her! I thought that was so amazing!! More amazing yet was that Spencer never cried after his surgery. We would fuss a little when we got hungry, but that was it. All the nurses commented that he was the calmest, best baby they'd ever seen. He could not have handled it any better. I know he handled it better than I would have!!
Three days later we were sent home! I'll admit it was little scary to leave the safety of the hospital. We'd had such a scare and I was operating on a serious lack of sleep, but I was so happy that our little guy was okay. One of the major hurdles of his condition was already down. It was hard to believe we'd only learned of his condition just 3 weeks earlier and he'd already been through so much.
They decided to do the some basic, routine tests-blood work, x-ray to check for pneumonia, and a nasal swab for RSV. We were almost immediately told that Spencer had an ALTE (an apparent life threatening event). I was nauseous hearing that Spence had something happen that had quote "threatened his life". In the meantime, they called over to the Skeletal Dysplaisa Center where was Spencer was scheduled for an appointment. The specialists there had a pretty good idea of what had happened. It seems many kids with Spencer's form of dwarfism have something called Foramen Magnum Compression or in simpler terms his skull was pinching off his spinal cord. Apparently 2-5% of babies die from this complication. It's still difficult to think we almost lost him right there in the parking garage.
We weren't in the ER long before they decided to move us to a room for the night. Spencer would have an MRI in the morning to confirm that he had the compression. By that night Spencer was pretty much back to himself, except with a lot of extras wires and monitors!!
Spencer slept pretty well that night, but mom and dad were another story! I don't think Scott and I slept at all that night. Every time a monitor beeped we practically knocked each other over getting to his crib.
Because of the MRI Spencer couldn't nurse after midnight and it was really hard for him. He was such a trooper and really hung in there! The MRI in and of itself was nerve racking. He would have to be put under for it and from what I had already read little people (lp's) need managed more during general anesthesia. One more thing to worry about!
It seemed like an eternity that he was gone during the MRI, but he came through it just great! He was so sweet when he woke up! What a trooper!!
We waited anxiously for the doctor to come in and tell us the results. Finally, the doc came in and asked us to come out to the nurses desk so he could show us the images from the MRI on the computer. Well, you didn't have to be a rocket scientist (or even a doctor-lol) to see right where his skull was pinching his spinal cord. He would need surgery, as soon as possible, to decompress the area. Basically, they would have to open him up from the base of the skull along the spine and remove the part of the skull pinching his spinal cord.
Needless to say, we would not be going home anytime soon. It was Friday and the soonest they could schedule the surgery for was Tuesday. It was going to take a major team of people for this surgery and that was the earliest they could get them assembled. So, until then Spence would have to be constantly monitored and we would have to pray he did not have another episode.
It was a long, uneventful next 4 days. We saw various doctors, including a few we had been scheduled to see that fateful Thursday. Spencer had x-rays called a Skeletal Survey and bloodwork done to see if he had the common mutation that caused his type of dwarfism.
I also learned that I was my child's advocate. So, whatever it took to get him the best care possible I was going to do it. I learned Spencer was a "hard stick" and to ask for the MedFlight/transport team to do any bloodwork and IV's. I learned that it was okay to ask the nurses to wait to do vitals when Spencer was nursing. I learned being an advocate meant not sleep much!
The day of Spencer's decompression surgery came and I had a great sense of peace. Don't get me wrong I was still anxious, but I knew we literally had hundreds, if not thousands, of people praying for him from coast to coast.
It was so hard to hand him over to the nurses in anesthesia though. After all we'd been through I guess I was scared to let him go. My awesome parents were there by our side and suggested we go to the cafeteria and try to relax. The funniest thing happened on the way there. We are rounding the corner and I see the neurosurgeon walking out of the cafeteria with a cup of coffee in hand! I'm thinking, "hey my kid is in surgery, aren't you suppose to be there too??!!" But it was weirdly reassuring that to us what was major surgery was no big deal to him.
So, here is the rest of our stay in a nutshell. The surgery went perfectly! The neurosurgeon's wonderful (and I do mean WONDERFUL!) nurse Renee said it couldn't have went any better. I told her that was because we had so many people praying and she said she knew that without me even telling her! I thought that was so amazing!! More amazing yet was that Spencer never cried after his surgery. We would fuss a little when we got hungry, but that was it. All the nurses commented that he was the calmest, best baby they'd ever seen. He could not have handled it any better. I know he handled it better than I would have!!
Three days later we were sent home! I'll admit it was little scary to leave the safety of the hospital. We'd had such a scare and I was operating on a serious lack of sleep, but I was so happy that our little guy was okay. One of the major hurdles of his condition was already down. It was hard to believe we'd only learned of his condition just 3 weeks earlier and he'd already been through so much.
