Jaxon was able to have surgery (Endoscopic Third Ventriculostomy) on Tue Jan 3rd. We were supposed to check in at 9am. As usual when your not the 1st surgery of the day you're bound to get delayed. When we were talking to the Nurse Practitioner who works with the surgeon she asked if Jaxon had had bronchitis in the last 30days and I said Yes. She said well we can't do the surgery then. I almost came unglued. We had met with anesthesia on Friday and I explained how his Pediatrician thought it was probably bronchitis and prescribed antibiotics but didn't do a chest xray. Finally she said well if there's no chest xray and anesthesia passed him then we are fine. OH my momma bear almost came out. Don't get me wrong I always want the safe route but we should have been told 3 weeks ago when I explained on the phone about his illness and then again on Friday when we saw anesthesia for his physical. It was another 2 hours before we saw the surgeon. That's a really long time to have a baby sitting in a tiny room with nothing to do. He was hungry and not happy. Walking to the surgery doors is probably one of the worst things in the world for a parent. I don't care how many times you make the walk it never gets any easier. We've done it from everything to saying good bye through the plastic walls on his bed when he was in the NICU (2lbs) to a now 2.5 year old who knows a little more about what is going on. You just want to give them one more hug and kiss.
We were told it would take about 2 hrs and they would call when it started. About 1.5 hrs went by and we hadn't heard a word. Then we got the call they had started and been working for awhile everything was going good. About 45min later we went into the privacy room to meet with the surgeon. The surgery was a success. Everything went as planned and we would be able to see him in about an hr.
When we went to meet him, he was wide eyed and began crying for us to pick him up. Of course we couldn't, he had to be moved to the Pediatric Intensive Care Unit (PICU). Well things really started going downhill from there. Once we were allowed back, he got really upset, his breathing was very labored almost like a hiccup. His heart rate stayed around 200. After 30min or so he would let his respiration's go down in the teens and his oxygen dropped like a rock into the 40's. Oxygen ideally should be 100%, with Jaxon's lung damage its usually 96-97ish. His eyes were crossed and he just wouldn't relax. He cried and cried, no tears just crying out for hours. In that time he had a couple seizures, one where they had to give him more oxygen and seizure medication. The Dr ordered a chest xray to see if his lungs were having any problems, and after his seizure he ordered a CT scan. At this point we were really questioning if we had made the right decision. After both tests everything appeared to be OK, but he still wouldn't relax. Jason sat with him the chair all night long. Only 1 parent was allowed to sleep in the room in a rocking chair. Since Jaxon was doing so poorly and we are from out of town, we were given a Ronald McDonald room inside the hospital. What a blessing. I slept there most of the night. In the morning I went and relieved Jason so he could go to the room and sleep until we had to be out at 11am. Jaxon had finally calmed down around midnight and slept until 4am. At 4am he got a little fussy again but overall he had come a long way. We were scheduled to move to a normal room out of the PICU later in the day.
The hospital was completely full so we waited all day for a room to get out of the PICU. Finally late afternoon and a room was ready. We were happy, we could have visitors and eat in our room. In your private room both parents can stay the night and you have a private bathroom. Jaxon would be a lot more relaxed.
The surgeon had ordered an MRI the next day at 2pm and if it looked good we should be able to go home afterward. WRONG. Jaxon's heart rate dropped when coming out of the anesthesia. The Dr wanted to keep him one more night for observation and then release him the next day (Friday). The MRI came back normal, possibly even a little less pressure on the brain than before the surgery. The next morning we met with the surgeon again and he released us to go home. As we got Jaxon ready to go home, it was like he knew what was going on. Jaxon and I waited on a bench with our cart of stuff for Jason to pull the car around and Jaxon just laughed and squealed. He couldn't wait to get out those doors.
Everything seemed to be going really good until Friday night at about 8pm, and he began vomiting. We waited until around 3am and finally decided we better take him to the emergency room just to be sure it wasn't from the surgery. Vomiting was on the list of precautions. The ER Dr and surgeon at Children's Mercy didn't think with the absence of any other symptoms it was related to the surgery. He was given anti nausea medication and we took him home around 8am on Saturday. He didn't keep a thing down all day Saturday and just dry heaved and slept all day. By 10pm Saturday night he still hadn't had a wet diaper and now I was getting concerned about dehydration. We decided at 10:30pm we would give him a little water by mouth, it had been 2 hrs since he had last vomited, and if he didn't keep it down we would take him in for IV fluids. He kept all 10cc's of water down. And the wild animal came out. We only wanted him to have the 10cc's and wait 30min. Good luck with that, he was yelling at us, pulling at our clothes and trying to get across the bed to where he had seen me put the syringe. He wanted more water and now. We managed to hold him off 20min and then gave him more. He took 8oz of water by mouth over about 3 hours and kept it all down. This kid doesn't drink anything by mouth ever. He's on the mend!!
Today has been a really good day. Jaxon is tired but he wants to play and kept down milk all throughout the day. I will post a picture of the incision tomorrow he was a little uncooperative today with the camera. They shaved a little square of hair and the incision is fairly large on his little head.
The Neurosurgeon said it would take up to 6 months for his brain to reshape to where it is supposed to be. He has lived his whole life with what looks like a dome from the fluid pressure and it just takes time for it to return. We will go back in 6-8 weeks for another MRI to make sure everything is still working as intended.
We greatly appreciate the prayers and support we get from our family and friends. It means the world to us, we have lost friendships and family relationships along the way because some people will never understand what we go through. And that's OK we sincerely hope no one ever has to understand through experience. We apologize if anyone didn't get a timely update or we just didn't get you called back. We had no cell service, my phone died and had no charger and plain and simple Jaxon took up all of our time and energy.
We were told it would take about 2 hrs and they would call when it started. About 1.5 hrs went by and we hadn't heard a word. Then we got the call they had started and been working for awhile everything was going good. About 45min later we went into the privacy room to meet with the surgeon. The surgery was a success. Everything went as planned and we would be able to see him in about an hr.
When we went to meet him, he was wide eyed and began crying for us to pick him up. Of course we couldn't, he had to be moved to the Pediatric Intensive Care Unit (PICU). Well things really started going downhill from there. Once we were allowed back, he got really upset, his breathing was very labored almost like a hiccup. His heart rate stayed around 200. After 30min or so he would let his respiration's go down in the teens and his oxygen dropped like a rock into the 40's. Oxygen ideally should be 100%, with Jaxon's lung damage its usually 96-97ish. His eyes were crossed and he just wouldn't relax. He cried and cried, no tears just crying out for hours. In that time he had a couple seizures, one where they had to give him more oxygen and seizure medication. The Dr ordered a chest xray to see if his lungs were having any problems, and after his seizure he ordered a CT scan. At this point we were really questioning if we had made the right decision. After both tests everything appeared to be OK, but he still wouldn't relax. Jason sat with him the chair all night long. Only 1 parent was allowed to sleep in the room in a rocking chair. Since Jaxon was doing so poorly and we are from out of town, we were given a Ronald McDonald room inside the hospital. What a blessing. I slept there most of the night. In the morning I went and relieved Jason so he could go to the room and sleep until we had to be out at 11am. Jaxon had finally calmed down around midnight and slept until 4am. At 4am he got a little fussy again but overall he had come a long way. We were scheduled to move to a normal room out of the PICU later in the day.
The hospital was completely full so we waited all day for a room to get out of the PICU. Finally late afternoon and a room was ready. We were happy, we could have visitors and eat in our room. In your private room both parents can stay the night and you have a private bathroom. Jaxon would be a lot more relaxed.
The surgeon had ordered an MRI the next day at 2pm and if it looked good we should be able to go home afterward. WRONG. Jaxon's heart rate dropped when coming out of the anesthesia. The Dr wanted to keep him one more night for observation and then release him the next day (Friday). The MRI came back normal, possibly even a little less pressure on the brain than before the surgery. The next morning we met with the surgeon again and he released us to go home. As we got Jaxon ready to go home, it was like he knew what was going on. Jaxon and I waited on a bench with our cart of stuff for Jason to pull the car around and Jaxon just laughed and squealed. He couldn't wait to get out those doors.
Everything seemed to be going really good until Friday night at about 8pm, and he began vomiting. We waited until around 3am and finally decided we better take him to the emergency room just to be sure it wasn't from the surgery. Vomiting was on the list of precautions. The ER Dr and surgeon at Children's Mercy didn't think with the absence of any other symptoms it was related to the surgery. He was given anti nausea medication and we took him home around 8am on Saturday. He didn't keep a thing down all day Saturday and just dry heaved and slept all day. By 10pm Saturday night he still hadn't had a wet diaper and now I was getting concerned about dehydration. We decided at 10:30pm we would give him a little water by mouth, it had been 2 hrs since he had last vomited, and if he didn't keep it down we would take him in for IV fluids. He kept all 10cc's of water down. And the wild animal came out. We only wanted him to have the 10cc's and wait 30min. Good luck with that, he was yelling at us, pulling at our clothes and trying to get across the bed to where he had seen me put the syringe. He wanted more water and now. We managed to hold him off 20min and then gave him more. He took 8oz of water by mouth over about 3 hours and kept it all down. This kid doesn't drink anything by mouth ever. He's on the mend!!
Today has been a really good day. Jaxon is tired but he wants to play and kept down milk all throughout the day. I will post a picture of the incision tomorrow he was a little uncooperative today with the camera. They shaved a little square of hair and the incision is fairly large on his little head.
The Neurosurgeon said it would take up to 6 months for his brain to reshape to where it is supposed to be. He has lived his whole life with what looks like a dome from the fluid pressure and it just takes time for it to return. We will go back in 6-8 weeks for another MRI to make sure everything is still working as intended.
We greatly appreciate the prayers and support we get from our family and friends. It means the world to us, we have lost friendships and family relationships along the way because some people will never understand what we go through. And that's OK we sincerely hope no one ever has to understand through experience. We apologize if anyone didn't get a timely update or we just didn't get you called back. We had no cell service, my phone died and had no charger and plain and simple Jaxon took up all of our time and energy.
No comments:
Post a Comment