Still Here

365 days...one whole year.

That's how long it has been since I sat down to write here.

In that time we had new babies born in our extended family, we lost family members we love. We started a new school year. We had a grand total of 4 hospital admissions last summer between June and September.

And on that last admission on September 13th, we darn near lost our boy.

He went into cardiac arrest while we were admitted into ICU for hyperkalemia, so I guess if it had to happen that was the best place for it to happen. The hospital team was amazing and jumped in and did everything they had to do to help him.

He was in Joe's arms smiling and flirting with nurses one minute, and in v-tach the next with people rushing into his room. They were so focused on treating him that no one realized we were still in the room watching their every move, crying hysterically.

After what seemed like forever, the doctor who had been treating him that shift came and saw us and had us step out of the room and Matthew was put into a medically induced coma for three days.

We never got a reason for what happened, every medical test done during the two weeks were in ICU and special care came back negative or normal. The ICU staff began calling Matthew the "International Man of Mystery." The closest thing we were able to come up with was that it was a side effect of his being on the Ketogenic Diet. So we stopped doing the diet which had kept him seizure free for almost a year and a half at that point, and his myoclonic episodes came back almost immediately.

Seeing what happened to my baby, and running through all the "what ifs" really messed with me afterwards. I began having panic attacks more frequently, I didn't want to let Matthew out of my sight for school, and I began even more vigilant and was afraid to sleep at night for fear it would happen again. Helicopter Mamas had nothing on me.

It has taken this long to be able to put this behind us, somewhat. I wasn't able to write out the words and wasn't even sure if I should have continued the blog. I missed the friends I made here, I missed the sense of community of people who "get it" when it comes to our kind of extreme parenting.

I hope we haven't stayed away too long, that you will come back and join us for the ride.
We were lucky, so darn lucky. Our boy is still here.

  

Viruses, Intussuspections and Adverse Flu Shot Reactions-Oh My!

So....it's been a while since my last visit here.  Hopefully, I will be able to get this up and running like I always planned soon. Things have been a little chaotic in the last month with Matt in regards to health and schooling and of course, his needs come first and foremost.

 

Shortly after my last post about World Cerebral Palsy Day, Matt began having some problems in school. Prior to this summer, Matt had little to no contact with other kids outside our family and therefore had little to no contact with germs from the outside world. I know that once a kid starts school, it's only a matter of time before he or she starts sharing more than just crayons and toy trucks in class. So less than a month into the new school year, Matt came down with his very first virus ever and begins having issues eating and drinking. We played this game where I would take him to school and at lunch time his teacher would call me to tell me he's refusing to eat for a couple of days. I made an appointment to see his pediatrician, she told me to continue to push fluids and that there is nothing we can do but wait for it to pass. In the end, it passed and he was back in school the next week.

 

Two weeks later, we got virus # 2. By this point Matt had lost a pound and was having Salaam Spasms frequently from not being Keto-compliant, which he had not happened since he started the Ketogenic Diet. It was a constant fight to get him to eat anything and usually ended up in tears, both his and mine. We made another trip to the pediatrician and heard the familiar refrain, "It's a virus, there is nothing we can do but wait for it to pass." And it did pass and he went back to school the next week.

 

The following week, things got fun. Just to keep me on my toes Matt decided to bring out the bigger guns and brought home a sinus infection and an ear infection. So, back to the pediatrician we went. At this point Matt is down 2 pounds because he has yet to make up the weight he lost from not eating during the two viruses. Matt has a wicked allergic reaction to Amoxicillin which means the entire penicillin family is a no-go and the Ketogenic diet limits the method by which he can take antibiotics in that he can't take liquid or chewable medications because of their sugar content. His pediatrician and I went back and forth  through all the literature provided by Matt's dietitian and finally settle on Ceftin. We left with a prescription and a follow up appointment scheduled for the next week.

 

It would be nice to think that all of our fun ended there, but unfortunately for my little Monkey, it didn't . Apparently Ceftin has a nasty metallic taste, which didn't make Matt a big fan. In fact, no matter how we prepared it for him, as soon as the it crossed his lips he would immediately start to gag and throw it up along with everything else we had managed to get into his stomach. Within a couple of days anytime he saw a spoon or a bottle, he would clamp his teeth and lips shut and turn his head away and fight us with everything he had. Three days later, I got a call from his teacher telling me that he is once again refusing to eat and that he seems lethargic and has been sleeping most of the day. So, you guessed it, back to the pediatrician we go! She checks him out and then tells me that he is down 3 lbs., that he is dehydrated and sends us off to the ER for IV fluids. Afterwards, he seems to feel a little better and finally seems to be on the mend. At our follow-up with the pediatrician a couple of days later, he was feeling cruddy again and again we hear that he has a virus, #3 for those who are counting. By now, I've had more than enough. He has been in the pediatrician's office 4 times in about a month, more than he has seen her in the last year. After some discussion with Joe, the pediatrician and his dietitian, we decided that Matt is going to be a preschool drop-out for now.

 

That brings us to last week, the most interesting part of this little drama, so far. After a great weekend of eating, drinking, and pumpkin picking, Matt started getting a little picky with his food Monday. On Tuesday he began turning away from chicken nuggets, a sure sign that something was not right. I called his gastroenterologist and scheduled an appointment for Thursday because this seemed to be a little more than just a virus. Wednesday, he decided that he wouldn't eat anything solid, not even Jello, but he did drink his Ketogenic egg nog drink fairly well. On Thursday, I got him to take about 7.5 ounces of keto egg nog after many hours of fighting. I was panicking and worried by this time. I called our pediatrician and was awaiting a call back when it was time for us to take Matt to the gastroenterologist. We had a 3:30 appointment and by 4:00 we were still in the lobby waiting to be called, when all of the sudden Matt starts screaming in his wheelchair. I know his irritated cries, his tired cries, and his hungry cries, but in the two and half years of parenting this child, I have never heard a cry like this one come out of his mouth. I went to the reception window and told the receptionist that we were going to take him to the ER instead. His gastro heard the screaming and came out the exam room she was in to see what was going on. I explained the situation with her and she agreed the ER was the best choice for us at the time.

 

 When we got into the ER, our pediatrician returned my call and when I explained what was going on and she heard Matt still screaming. She called the hospital and spoke with the triage nurses and we were called within 10 minutes of entering the ER, we were in an exam room. It took the nurses 4 attempts to get an IV into him, and soon we were in another room and Matt was having an abdominal ultrasound. The right side of the scan went well, but as soon as the wand touched the left side of his abdomen Matt started screaming again. The tech was quiet and told us to wait in the room while she went to call the doctor to see if there were any further scans she wanted. About 30 minutes later the tech and a doctor came in and reviewed the ultrasounds and then asked us to lay Matt back on the table again to repeat some scans. After all scans were done the doctor turned to us and told us that Matt had what was called an Intussusception where the intestines can fold inward on itself, kind of like a collapsible telescope, and that he was extremely lucky because his Intussusception resolved itself without surgical intervention. The decision was made that Matt was going to be admitted overnight for observation in case the Intussusception recurred, and that if all went well and he ate and drank we would be released the next day.

 

Friday everything seemed to go better. After a dose of  "Magic Mouthwash" (Carafate, Maalox and Benadryl) to numb his red throat, he began to drink Keto-Cal with no problems. By the time the staff pediatricians made rounds, he had already drank 7.5 ounces and they were okay with us being released later in the day. And here is where I made my next mistake--I asked whether or not Matt could have the flu shot.

 

Matt has had the flu shot before and after the news story back in August stating that children with neurological disorders may be more likely to die during flu season, I didn't hesitate when it came time to decide whether or not he was going to get the shot. My biggest issue at that point was getting him well enough to get the shot, and the doctors and nurses told me that it would be no problem for him to get it done before we were released from the hospital.

 

Well, come Saturday morning we had a problem--a big, red, itchy hive problem. We jumped back in the car and headed back to the ER where my sweet boy was loaded up on Benadryl and Decadron and sent home. Today we saw his gastroenterologist to discuss further testing that he may need, and also, his neurologist to discuss whether the rash he has now is from the flu shot or possibly from an increase in his seizure meds. We are all leaning toward the flu shot as the culprit and tomorrow we see his pediatrician to get a referral for an allergist. Say what you want about our life, it is anything but dull!

Time Off

I never intended to go so long between my first post on here and the next one. Between taking Matt to school and picking him up, all of his therapy appointments last week and a much dreaded ophthalmologist appointment to follow up on his CVI issues, I have dropped some of the plates that I'm trying to spin. I am usually very organized and punctual when it comes to appointments, fueled by massive amounts of iced coffee and a manic fear of showing up anywhere even a minute late. I don't like letting things slip out of control and throw off the schedule. What's that expression again..make a plan and God laughs?

This week has been chaos because the kiddo is sick and that means no therapies and no school until he is feeling better. This is no easy task since he has been on the Ketogenic Diet for a month and all liquid over-the-counter meds are forbidden because of sugar content. I am lost without a schedule to follow now apparently. Since he is home we've been taking advantage of our down time to work on some skills his speech therapist wants to him to start recognizing and implementing. First is the "Get the/Give me the" rule, which works on two skill sets for him.  First, the "Get the..." rule works on his motor skills because he has to locate and grab the object, not so easy with visual impairment and poor muscle tone and grasping skills. Once he has the object in his hand, I put my hand out and tell him, "Give me the..." and let him drop it into my waiting hand. According to our superstar speech therapist, Miss Melanie, this will teach him to 1.) Recognize the object he is grabbing by name,  2.) strengthen his grabbing skills, and 3.) Teach him Cause and Effect, which we will need to master before we get  an Adaptive Communication Device down the road.

But, this week hasn't been all about the work. As much as I hate when he is sick, Matt and I both needed a break. We've been doing a lot of snuggling on the couch with a cozy blanket and watching all things Cars. Listening to him laugh when he sees Lightning McQueen and Mater is literally one of the best sounds in the whole world. I love this time with my little guy and it makes it worth all of the plates that I spin to keep him happy and healthy.