They had to chip away more of his spine than they thought to cut the tumor out. He described to us that Reid's nerve endings and the fatty tumor they were attached to looked like a tree with a large tree stump. Nerve endings are suppose to be free flowing through the spine and hang above the tail bone. Reid's were attached though to a tumor. Imagine the tumor in the tree stump and the trunk are his nerves. Rather than cutting the nerves or cutting the tree off the stump the Dr. decided to take another approach. By cutting nerves there could have been a ton of damage. You never want to mess with nerves. So he chipped away at the tumor (tree stump) and hollowed it out to make it look like a canoe. That was the nerves were free flowing again. He chipped it away so much that hopefully it won't re-attach later in life. Unfortunately this is a possibility. Tethered cords re-attach to a fatty tumor about 25% of the time.
So while that is a possibility all we were happy about was that Reid wasn't paralyzed. We went back to the PACU and Reid was asleep. After just a couple minutes he started to barley wake up and he moved. I never thought I would be so happy that my child is moving.
After walking upstairs to the PICU all the nurses started getting busy. They hooked him up to the monitors, moved his folley bags (2 bladders remember) to their proper place, tried to have us use a colostomy bag again to help with healing and keeping his back 100% poop free and to let him rest. Because the surgery involved opening his spine he had to be on sedation medication so that he would stay flat for 48 hours to let the inner layers of his skin heal up before testing them out and seeing if he starts leaking spinal fluid. The drugs were strong enough to keep him very very sleepy. He would wake up to have a bottle and then go back to sleep.
I couldn't hold him until Saturday morning after they turned off the sedation drugs. It was a long 2 days. During those days Michael and I sat in his PICU room, talked to nurses and watched lots of Netflix. When Saturday morning rolled around I was very excited to pick him up and try to nurse him again. I was scared that he would not want to anymore since he had bottles for 2 whole days.
Saturday morning Michael and I walked over to the PICU and asked if it was time… the nurses said yes. So at 8am they turned off his sedation drugs. He was still pretty sleepy so we wanted him to wake up on his own. After a few hours it was time for him to eat so I woke him up and snuggled with him. I fed him and he drank for maybe 30 seconds and didn't want anymore. I didn't want to push it so I just let him sleep. He was really waking up at this point and was flailing his arms around all over the place. To the point where I put him back in bed because his arms and legs were going crazy.
He spit up pretty quickly, but I didn't think anything of it. After this Reid was really fussy so we tried to hold him, but he was still flailing around so we put him down and he would cry. The nurses thought maybe he was in pain so they gave him tylenol. His heart rate was pretty high but no one seemed concerned so we didn't think anything of it. They took out one of his follies to let him start peeing on his when they turned off his medication and he hadn't peed yet. I tried feeding him again and still he didn't want to eat. He would have a tiny bit and spit up shortly after. Something was going on. By the evening Reid still hadn't peed, barely took any liquids and starting actually vomitting. What was going on with my kiddo?! Increased heart rate, lack of urine, vomitting, no appetite, and very very sweaty. One of his nurses finally said, this looks like withdrawal. LIGHT BULB! Yes this was textbook withdrawal. Poor baby was having a tough time coming off his sedation drugs since they weren't weaned off but just shut off. So we had to talk to the Dr's. They Dr's wanted to re-introduce the sedation drugs and then slowly wean him off of them. I didn't care what they did I just wanted him to be ok. Michael however was very against this. He said Reid had already been withdrawing for 12 + hours so why start over, let him finish this. At this point his resting heart rate was in the 180-200's! Crazy high. Michael finally decided that I'm the Mom so I can choose. I said do it. Well that afternoon Reid had pulled out his IV and they couldn't get one back in. So no sedation drugs. He finally started to act normal again at around 9pm, except he hadn't peed. Ummm it had been 12 hours since he peed… not even the bladder with the folly still in had produced urine. So that was our next hurdle. The nurses tried to re-insert the folly thinking that would allow for urine to escape. They weren't saying it but they and we thought had lost function of at least 1 bladder. The nurses and Dr's had such a hard time re-inserting the folly. This is very uncomfortable and Reid was screaming throughout the procedure. The Dr decided that Reid needed to go under an ultrasound to be able to assist in inserting the folly. If this didn't work he was going to be transferred to a different hospital because this late at night on a Saturday they couldn't get a hold of a pediatric urologist. Shut the front door. ON TOP OF ALL THIS Michael was leaving that night. He started work Monday and the only way he could get home was a friend getting him Saturday. We didn't expect to still be in the hospital. I was so scared to be alone at this point. It was one thing after the other going wrong with him. I couldn't take it. I was freaking out.
The Dr. was finally able to get the folly back in… hooray. BUT nothing was consistently coming out. ummm isn't that suppose to work like every time? We went back to the JW house that night and I cried and cried. I was so scared to deal with these things alone but we didn't have a choice. Michael had to go to work. The next morning when I woke up I didn't want to go see Reid. I didn't want to hear the bad news that was awaiting me. I just wanted to stay at the JW house where I could pretend nothing was wrong. But Reid needed his mommy. So I went. He still hadn't peed. Throughout the day we waited. I thought for sure his kidneys were now failing on top of his bladders no longer working. IT was a long day of stress. I was barely eating. I was like a zombie. There but not actually present. I just sat there. Luckily I have amazing parents who came up to stay with me that day and brought Parker, who is always a delight to see. I asked my Mom if she could stay with me until Reid went home, I couldn't do this alone. I realized that too late and was on the verge of a mental breakdown. Sunday night my Mom and I sat in Reid's room looking for any answers. None of the weekend Dr's knew why Reid wasn't peeing. It had been 24 hours since a tiny bit of pee came out. His nurse (the one who thought he may be withdrawing) thought he would try a few things. He put a syringe in Reid's folly line and pulled back on the syringe sucking out whatever would come out. From his right bladder urine came out! So urine was there, just not dropping into this folly bag. Then he tried from his left side and nothing. He pushed some saline in and tried again, no more than the saline. Ugh why. Why was this happening and what was wrong with him. The Dr's said because his anatomy was so different they had no idea what to expect. As I sat next to Reids crib and silently prayed that he be okay my Mom exclaimed… theres pee in his bag. !!!!!!!! Sure enough from the left side, the side that was giving us the hardest time, there was more urine in the folly bag. We waited and even more came out. I was jumping up and down, my Mom was exclaiming that he peed, I ran out and told his nurse who was just as happy as I was. He finally peed!! After about 5 minutes of celebrating I told the nurse, I need to leave now and eat. I hadn't eaten barely anything since Saturday morning and all of a sudden I was starving!
After being able to release urine, Reid was back to his happy self. But his follies were still in. Monday morning his urologist came by to check on him and he said pull the follies again one at a time. If after 12 hours there is no urine do a bladder scan to see if there is urine in his bladder and if he had a significant amount then do a straight cath. This was basically putting a folly in, but just to release the urine and then take it out. We were happy to have a plan. That day I wanted pee. I wanted pee so bad for my baby! But none came. That night the nurses had a tough time cathing him again until our angel of a nurse came in and cathed him on his first try. He talked so sweetly to Reid before any procedure and Reid loved him. We learned that he had a neurogenic bladder (what we thought Reid had since he had gone 3 days without peeing himself and it was a known complication of his spinal surgery) and was a fully functioning adult. This made me so happy. To know that even if Reid's bladders weren't working it wasn't the end of the world. He would be okay. Yes it would suck but it would be okay.
His neuro team came by on Tuesday and said that the sensors on Reid's nerves never showed any change in function so they thought what Reid had was spinal shock, but to his bladders. They said hopefully in the next few weeks or months he would be able to empty his bladders on his own. So I had to learn how to insert a catheter. Michael was able to come to the JW house after work Tuesday night so that he could learn from our angel nurse Bryan how to cath Reid. He did it so wonderfully that Reid barely cried. Unfortunately the other nurses weren't as good. Not their fault, they didn't have as much experience doing it on such a tiny baby. Bryan had done it himself for years. The urologist taught me how to do it and then Bryan watched me a couple times. This was going to be our new normal, every 3 hours during the day and once during the night. Wow. This would be different. Wednesday morning the nurses said Reid had been discharged by all his Dr's, so after cathing him one last time we were free. 8 days of in the hospital and we were able to go home. I missed Parker so much and was ready to get into our routine… before his next surgery 7 days later.
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