Jayson had a great night... well, until 4:00 AM. The poor little man was woke up NINE times between 4:00 AM and 9:30 AM-- for vitals, resident neurosurgeon shined a light in his eyes, neurosurgery team came by to examine him, the neurosurgery nurse practitioner came to look at his incision, vitals again, the biohazard guy came to collect syringes, housekeeping came to clean, a pharmacist came to discuss medications, and the nurse came to discuss discharge. Each time he was woke up, he realized he was in pain and he'd cry for a while until I'd get him settled and falling asleep, just in time for the next visitor. He also threw up, likely from the pain. His vomiting was a little set back. We needed to make sure he was going to be stable before going home.
By 2:00 in the afternoon, we were looking good. Jayse got a good nap in, hadn't vomited since the morning, and was tolerating his pain better. Miraculously, I got him into the car seat without him crying. I was so careful to not hurt his head. We went home just in time before the big winter storm. It began snowing on our way home.
It felt so good to walk into our house, and it was much earlier than I had anticipated. Of course, Maya was happy to see us and she frantically licked the baby's toes to welcome him home. In her excitement, Maya ran in front of me when I had my arms full and I tripped over her, fell and hit my head on the wall without even catching myself. I spent the next couple of hours on the couch, possibly with a mild concussion. I was dizzy and wasn't able to talk without stuttering for hours. Thank goodness I have a sweet husband who took care of me and our little man. We spend the evening watching movies and cuddling on the couch, just like I dreamed. Jayson was happy and comfortable, and I felt so blessed.
Saturday, January 12, 2013
Things are still going well. Jayson seems happy, comfortable and playful and we are weaning him off of his lortab. It seems his pain is tolerated well on Motrin and Tylenol. I started to get concerned today when his incision was getting more and more red. He's not running a fever and he's acting normal, so I'm trying not to get too worried. I called the neurosurgeon on-call at the hospital, whereas I was told to watch out for too much redness and swelling. He told me that Jayson may be having a reaction with his stitches, and that we should come to the neurosurgery clinic to have the stitches removed on Tuesday instead of going to our regular pediatrician. That way, they could look at him. I felt a little better after talking with the doctor. He told me to watch for a fever and leaking CSF fluid.
Today Jayson was able to sit up on my lap and hold his head up without too much discomfort!! This was a great sign of progress! He was even able to give me a hug and cuddles.
Sunday, January 13, 2013
I woke up today more than a little concerned. Jayson slept well, for the most part, but his incision looked much worse. The redness had spread and he was swollen. Even worse, there was fluid on his pillow case he sleeps on propped up on his wedge. It was blotchy with blood and clear dried liquid. I didn't see any liquid on his incision, but it looked like it could be dried. I remember the doctors telling me this was the most concerning thing to look for-- CSF spinal fluid. A spinal fluid leak typically requires emergency surgery, so naturally I was freaking out. Mike and I debated all day about whether or not we should take Jayson to the hospital. He still didn't have a fever, and he was acting happy and active. And if we go to the hospital on a Sunday, we will have to go to the E.R. which is full of very sick kids with many bad illnesses. I got sick at the thought of exposing Jayson to all of those illnesses, just after brain surgery. We went back and forth. Let's go. Let's wait. Let's go. Let's wait. I called the on call neurosurgeon again, who took 2 1/2 hours to call me back. He said that Jayson definitely needs to be seen. The safest thing would be to come in right away, but we'd have to go through the E.R. and they were slammed with lots of sick kids. He said that the doctors in the E.R. would look at him first and may or may not even call him to look at Jayson. The best bet was to come in first thing Monday morning to the clinic where we would definitely be seen. That's what Mike and I decided to do. We prayed that Jayson's condition was not serious enough that it wouldn't wait for the next morning.
Monday, January 14, 2013
Our night was long and difficult. Jayson was up a few times, I was up many times giving medicine, and Mike was up all night coughing and really sick. He honestly didn't sleep at all. Then Jayson has us both up at 5:15 AM with the blowout of the century. It was so bad, I gave it a name-- Pooplosion 2013. It took both of us until 6:00 to get the situation under control.
Jayson had more fluid on the white blanket I laid under his head to sleep on. His head was even more red and swollen. I was glad we were heading to the doctor. Shelby, his nanny, came over to help me get him to the doctor. When we arrived, we realized we had a problem... Jayson's stroller was in Mike's car. So Shelby and I had to haul the baby in his car seat covered in quilts, his oxygen, his pulse oximeter, his feeding backpack, his diaper bag, our purses and his extra blanket to the clinic in PCMC without the assistance of the stroller. Yes, it was definitely a challenge. Thankfully I had Shelby's help. There's no way I could have done it otherwise.
We got right in to see the doctor. Unfortunately, it was our doctor's day in surgery so we could only see the resident. He was concerned right away due to the redness and swelling. He wasn't suspecting a fluid leak, but he was thinking Jayson had an infection. He took a picture of Jayson's head, then went straight to the O.R. to talk with our doctor. Our doctor didn't think it was an infection since Jayson was acting fine and wasn't running a fever. He felt he was having a reaction to the stitches, and that they should be removed. However, he wanted to put Jayson on an antibiotic just in case. That sounded good to me.
I got sick at the idea of the resident pulling out Jayson's stitches without any pain medication or numbing creme. I had stitches out of my knee recently, and it was awful! Poor poor baby. I set up his favorite show, Yo Gabba Gabba, on my eye pad and gently held him down. He did so well on the top half. He only flinched a couple of times and held really still. The bottom half was bad. He was so swollen that the stitches were completely covered by his skin. The doctor had to dig in his skin with the scissors to cut them out. Jayson, naturally, did not like this and was screaming, crying and trying to roll away. This just resulted in more scissor jabs to the head. I couldn't believe how casually the doctor was cutting and jabbing, and I saw more blood dripping from the bottom of his incision do to the cuts and jabs. I just held my baby as still as I could and whispered I loved him in his ear as I said a prayer that it would all be over soon. He is so strong. I don't know that I could have tolerated such a traumatic experience as well as he did. As soon as the doctor was done, he wiped up the blood and put some orange liquid (iodine?) on the incision and then I was able to scoop up my little guy and kiss him all over. He calmed down quickly and soon acted like nothing even happened. That is my son!
Tuesday, January 15, 2013
Worst. night. ever. It started around midnight when I got a terrible feeling. The feeling I get before we land ourselves in the hospital. I tried to blow it off because everything seemed fine. I spent the next 10 hours trying to console my baby in pain. He struggled to sleep. He would wake up crying and screaming and rubbing his head. He would whimper in his sleep until he woke himself. He would cry out, "Mommmm" and "Owwww" in the middle of the night. He and I hardly slept. It broke my heart, and I couldn't figure it out. I assumed the incision was sore, and I ended up giving him more lortab, even though he hadn't had any in days. In the morning, I inspected his incision. It actually looked slightly better. Less swollen. He didn't have hardly any fluid on his pillow case. He didn't seem to mind me touching and pushing on his incision, so I don't think that was it. Jayse and I got some sleep between 10:00AM and 1:00 PM before he once again woke up hysterical. I spent the entire afternoon and evening trying to keep Jayson happy and comfortable. Just when he would start smiling and playing, his smile quickly turned into a pout and he would cry. He just couldn't stay happy or comfortable. It didn't matter if he was laying, sitting, next to me, on my lap, he was not happy. I was going crazy trying to figure out the problem. He was still rubbing his head, eyes and ears, which he does when he has a headache. Yet, somehow I wondered if his antibiotic was causing a tummy ache, or if he was getting a sore throat and catching Mike's cold. He was definitely teething, but he has never cried over teeth before, and especially not while taking Tylenol, Motrin and/or Lortab. My mommy feeling got stronger and stronger. I have fought the urge to throw up all night from the massive amount of anxiety I have been feeling. Something is not right. I'm scared it's his brain. I'm almost hoping he's catching an illness. Either way, it's bad news. It is never good when the happiest baby in the world spends the day whining in agony. I think we could use some prayers. I may be taking him back to the hospital tomorrow, and hope somebody will listen to me when I say something is not right.
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