I'm trying to hold on; sometimes I hold my breath and close my eyes, but I'm trying to enjoy the ride.
Sometimes the scariest part is the incline, knowing what is coming and the anticipating the fear of falling.
Sometimes the worst part is the fall. It's inevitable. You lack control. The pit in your stomach can feel like a thrill or it can make you want to vomit.
For me, the best part is riding the small little hills after the big fall, soaking in the fact the worst is over and feeling that pride that you braved the worst.
I'm finally riding those small hills right now, and it feels great.
The past few weeks have been an honest to goodness whirlwind. I don't know honestly how we've held it together. I thought that we were over the scary stuff. I was wrong. We never really are.
Jayson had his second cranial surgery on March 25th to remove the hardware from his skull. The surgery and recovery went fantastically. Jayson was phenomenal.
After the hardware and head wrap were removed, it was easy to see the changes in Jayson's head. The first images were taken in November, and the second images on March 26th. His head shape looks amazing!!! It was totally worth the pain and the suffering! And I'm sure Jayson agrees, since his brain has more room. He will likely experience less seizures and headaches.
Our stay went incredibly well. We had a phenomenal nursing staff that was consistent during our stay- same nurse during the day, and same nurse during the night. We knew it was time to go home when things started to go down him with nursing students spilling meds and saying offensive things, so we were happy to head home!
I created a picture with descriptions of how Jayson shows pain for this stay. That way the staff could see how Jayson looks when he's well and pain-free!
We received a large package from an amazing organization called Cranio Care Bears. It contained this prayer chain, this car and this handmade quilt, among many other things. We are blessed with so much support.
This was Jayson's first time with a stomach bug, so we didn't know what to expect. He vomited for three awful hours. After the first batch of vomiting Jayson was having horrific, scary seizures. They were more tonic in nature, which I'm not used to, and it appeared that he was going unconscious after two of the seizures. It was super scary. He was able to rest overnight and the next two days we worked on keeping him good and hydrated with his tube feedings running slow all day so that we could keep him out of the hospital. Friday night Jayson started acting strange. He would just stare off and seem really tired and out of it. He also started gagging out of nowhere. Once he fell asleep his alarms were going off and I took videos of what appeared to be seizure activity. His eyelids swelled up and turned purple and he seized one after another for about an hour in his sleep. He finally started to calm down so I crawled into bed. I had only laid down for a few minutes and placed J's CPAP on when he projectile vomited in his sleep a couple of times. He went all stiff again two more times, with complete collapse in between. Again, it seemed like he seized and went unconscious after each seizure, just like Wednesday night. I got worried.
Saturday morning, April 11th, Jayson just laid around. He was having difficulty sustaining a sitting position and his color and eyes looked awful. I was trying to figure out what was going on and I worried that maybe he was dehydrated, despite my attempt to keep him hydrated. I called the doctor on-call for our pediatrician clinic. He listened to my concerns, and without even knowing Jayson's background, asked if I thought there was any chance he could be experiencing intracranial pressure? He said that since J was not experiencing stomach cramping or diarrhea, it was unlikely that he was battling a tummy bug. He said that two nights of projectile vomiting with seizures and impaired neuro status and lethargy screams intracranial pressure. I had the same realization the night before, but I pushed those thoughts out of my mind. Jayson's skull had been expanded. There was no way this could be pressure . . . right?! It terrified me to hear that the doctor was confirming that my worst fears could be reality. I explained Jayson's background and he instructed us to go to Primary's immediately.
And so I packed. And I was shaking the entire time.
We got to our home away from home and got in quickly. People don't mess around with intracranial pressure, and our child had fresh sutures in his head. It was clear he was a time sensitive case. The doctor came in and we talked. He agreed that intracranial pressure was a concern. I wanted him to argue and dismiss me, like they always do. I didn't want this to be a real possibility, but soon we were wheeled off for a CT scan. I wasn't sure what to expect, since Jayson was sedated for the past scan. It went smoothly and Jayson was a champ!! He had to be strapped down, which was further evidence that he was not doing well. He didn't fight it at all. That was not our Little J. Once we got back to the room, Jayson continued to decline. He just stared at the wall and the ceiling. He had a tv with one of his favorite movies right in front of him. We turned on his ipad with one of his other favorite shows right next to him. Yet, he just stared . . . at nothing. I was getting so worried. In between the stares, he was seizing. He just laid down, and it seemed that he was now not only struggling to sustain a sit, but struggling to hold up his head. His coloration was worse, and he looked so distant. I felt like my baby was slipping away and I had no idea why. Suddenly I had a feeling start in my heart and move down to my stomach which resulted in immediate nausea. The CT was going to show something. I needed to be prepared. Sure enough, a doctor walked in and said words that no parent in the world ever wants to hear-- Jayson's brain is swelling. His ventricles are enlarged, and we aren't quite sure why. We are requesting a neurosurgery consult. This was NOT where I envisioned this ER visit going. I was prepared to be sent home in frustration. As much as I hate that, I wish that was what was happening instead of hearing this awful news. Mike and I could hardly speak. We were scared.
A neurosurgery resident came in to talk with us. He told us hydrocephalus was a possibility, but it was also a possibility that his brain appeared to be swelling simply because they are comparing this CT to his last CT, which was taken before his cranial expansion. We would hope that his brain would expand and that the ventricles would enlarge and fill the extra space, but it's hard to know for sure. He left to consult with Dr. B, our beloved (or hated, whatev) Chiari neurosurgeon. He returned, surprise surprise, quickly to tell us that Dr. B wasn't worried. He never is. We were in this mess because our neurosurgeon was not worried. Although it was comforting to hear that the neurosurgeon believes the swelling was simply due to more cranial space, I have ZERO trust in that doctor.
Our ER doctor came in to talk to us and told us, "Give that neurosurgery is not concerned, we could just give Jayson fluids and send you guys out of here. But I can tell already that you guys have that special needs parent Spidey sense, and it looks like it's tingling. If you want to be admitted, we'll admit you." Mike and I were on the same page. Jayse was continuing to decline; it was admit time.
Later that night, like 3:00 am that night, I had time to login online and read the actual CT report. I read about the enlarged ventricles, but also saw a couple of other things that alerted me. The report said Jayson had "partial opacification of left mastoid air cells, which are underpneumatized" which could mean possible mastoiditis or a history of it. Mastoiditis is a bone infection, caused from an untreated ear infection. I looked up this condition and it could cause the vomiting, pressure in the head, and if really bad it can even cause brain swelling through meningitis. Yes, a kid with meningitis typically has a fever and high white blood cell count, but not all kids do. Jayson is always rare, and he never runs a fever. So even though it was unlikely, it was still something I had to consider and push to the forefront of our doctors' minds. Jayson doesn't play by the rules, and it was worth considering.
I don't have a lot of memory of the next couple of days. I had a cumulative amount of 9 hours of sleep over 3 nights in the hospital. I know there was random projectile vomiting. There was lethargy and Jayson struggling to lift his head or play. There was lots of wake up calls throughout the night with updates and concerns from the nursing staff. There were seizures and impaired neurological status. His oxygen was going down and his heart rate was going up, without any real explanation.
Fortunately, Jayson's neuro status started to improve. He started to focus again, and he was very very slowly gaining his energy. He was little by little becoming more active, but progress was very slow. We weren't getting any stool. One night after J vomited and we realized we didn't have stool for a couple of days, the nursing staff started checking what is called J's "residuals". They were using a large syringe to vent J's belly using his g-tube. They were getting a lot of liquid. They were able to pull up the liquid and measure it, then return it to J's belly. They would check a couple of hours later and it was even more. We had to stop feeds and start the IV fluids again. His GI tract had stopped functioning. It was not digesting the food in his stomach, and it was instead sitting there. The longer it sits, the higher the likelihood of developing bacteria. If it gets too full, he vomits. The bacteria creates nausea. And no stool is being produced. This condition is called gastroparesis. THIS was honestly my deepest darkest most distant fear regarding a stomach virus. I have seen some of my friends' kids struggle like this, but I really didn't think J would given that his GI tract has always been pretty normal. Not this time.
The night time team was concerned and wanted to be proactive, but the day time team was very "wait and see". No biggie that my child hadn't pooped in 4 days, and his stomach contents were just hanging out without moving through. It took 12 hours after an order was written to get a suppository. A glycerin suppository. 12 hours of misery. Then, it didn't work. It took another 6 1/2 hours to get an enema. My child sat in misery for at least 18 hours waiting to poop. That's when I realized we needed to be discharged. The hospital wasn't helping. They were hurting us. It takes me 2 seconds to give my child a suppository. If he doesn't poop, I don't have to follow a protocol or time table before giving another or trying something else. I asked the hospital about erythromycin, a med they give for motility and gastroparesis. They told me that J would have to have a hard, distended tummy, and we'd have to get xrays to confirm an obstruction before they'd consider it. An obstruction is life threatening. So things would have to get to that point before they would give a medicine that would help; a medicine that Jayson used to be on for over a year because he has diagnosed motility issues. Ridiculous. It was time to go home, and the hospital was pushing us out anyway. Protocol and everything, I'm sure we had surpassed the recommended stay for a stomach virus.
Right before we were discharged, Jayson was able to have a session of Music Therapy. It was awesome!!
So we left and we went downstairs to clinic B for Jayson's follow up cranial surgery appointment. His surgeon was shocked to see we had been discharged. He said Jayson looked dehydrated and very ill, and like he should be admitted and not discharged. Jayson looked awful, but he had improved neurologically, and that was what I was initially most concerned about during our admit. Jayson's head was healing well so we headed home. (April 14, 2015)
We followed up with our pediatrician two days later. Jayson was still unable to poop without intervention. He laid around and slept all day. He struggled to hold up his head or sustain a sit longer than 30 seconds. Our doctor was shocked at how easy it was to examine him because he wouldn't put up a fight. Jayson was still vomiting. We again talked about post-viral gastroparesis, and our doctor recommended erythromycin. That was the very medicine we wanted. We decided to give it a try and hope Jayson would turn around soon. Our pediatrician also thought that the opacification of the mastoid air cells was due to J's history of ear infections. We may be looking at some upcoming ear surgeries, but he said that wasn't something we needed to look into just yet.
During these days in the hospital and the ones that followed at home, Jayson was also frequently rubbing his head, pushing it against walls/cribs/surfaces, and pushing it into the floor to give it pressure. This was just what he did the months before he was diagnosed with craniosynostosis and had high intracranial pressure. I was hoping we were just dealing with GI issues and gastroparesis, but I was still terrified we might be looking at a hydrocephalus diagnosis and a shunt. Jayson has both Chiari I malformation and multiple suture craniosynostosis. Both conditions are commonly associated with shunts. It would not be a surprise if Jayson needed one, but it sure is something I have always hoped we wouldn't have to deal with.
For THIRTEEN DAYS my son was not well. For THIRTEEN DAYS Jayson did not show much improvement, beyond the initial neurological improvement. For THIRTEEN DAYS I was petrified and consumed with worry and research. For THIRTEEN DAYS I didn't dare think of the future or make any potential plans. For THIRTEEN DAYS I wondered every minute of every day if we were heading back to the hospital, if we were missing something, or if J was going to take a turn for the better or a turn for the worse. I was living in a time warp. I didn't know day from night nor which day of the week it was. I watched J's every move and analyzed every little thing. I was in crisis mode and survival mode. I wasn't living. We were merely existing.
During this time, some traumatic things went down with Chance in our home. We had him stay at a safe place for a night while I got some sleep after being so sleep deprived for so long, and then Mike took him home to Oregon. We were devastated that our plans to keep Chance with us for a while didn't work out, but it was very much out of our control. And we had to focus 110% on Jayson right now. I didn't allow myself to mourn this disappointment for too long. It was for the best.
Finally, a miracle happened. On Monday, April 20th Jayson finally started to show some improvement. It was subtle. He pooped on his own, for the first time in weeks. He also started sitting up for up to 30 minutes to play at a time before laying down to rest. That was huge, yet subtle. Tuesday we saw neurosurgery and our doctor had that approach we thought he would-- wait and see. He wants to do another CT in a couple of months and compare it to this one to see if the ventricles were still growing in size. I decided to go with it since J was starting to finally show some improvement. At this time, Jayson was still banging and putting pressure on his head, but that stopped after Wednesday. Each day Jayson would play more and longer, and he started walking again. He started smiling and giggling. He started playing and engaging with us again. He stopped vomiting and started pooping once to twice a day on his own. He started to get interested in potty training again, and he started asking to eat orally too. I honestly have never been more happy in my life! Currently, we are in a really good place. I think erythromycin has saved him!!! I also think this is a med we will keep! J was on this medicine before and we took him off because we didn't think he needed it anymore. Now I realize he has never felt better nor been this regular before. I think this med is helping him so much with his motility issues, which clearly are not resolved. He also has gained a ferocious appetite!!! He's asking to eat THREE TIMES a day now!!! It's crazy. And he's eating at least 8 ounces each time. It's insane. The nurse today explained to me that it's possible he has had emtpying and motility issues all along. If his belly is slow to empty and is always full, he won't have an appetite. But the motility meds are moving things through so he may actually be hungry now! I'm thrilled! I know he fluctuates so much with his eating, but I am VERY hopeful this is a new beginning for us!!
J has also grown leaps and bounds the past 7 days in communication! We've started using a PECS system for communicating, which is essentially picture cards that give him choices. He gets to pick a card to communicate his wants and needs. I have been impressed with how accurate he has been with picking cards communicating needs like going to the bathroom, hunger, and wanting to go to bed. He surprises me all of the time!
So after a very scary and stressful few weeks, I think we are in the clear . . . for now :) I am very hopeful that we will have an uneventful and fun spring and summer. I'm hopeful we will have a lot of fun events to attend and memories to make. I'm hoping that this time around, I can find this rollercoaster ride to be a little more fun and a lot less fearful. I'm ready for some smiles and some thrilling adventures. After all, our family sure deserve it!
