Oct 2007

It’s amazing what can happen in 7 weeks! We’ve done and been through so much these past weeks that I can hardly think of where to begin retelling it. Let’s see….following Labor Day we’ve plugged along with Vic’s weird(er) diet. Vic already had trouble with keeping his food down on the diet but with the replacement of dairy to oil, he clearly has issues with it. With the inception of the oil diet, it has been even more difficult on his system, leaving him crankier and urpier than ever!

Since I last wrote, Vic has not been taking regular naps and in fact, his sleep habits have been horrible and have only recently improved. For over two months Vic has been quite difficult to put to sleep and stay asleep. These past two months it has been like dealing with a newborn, but worse. It had been difficult to lay him down for naps or to just lay him down to sleep. Regardless of how tired we knew Vic would be, he would wake up multiple times through the night. Gary had been living on 4-5hours of sleep each night! Two weeks ago, after several nights in a row of trying to give Gary a break, I finally phoned our nurse and told her that we are at our wits end. We’ve been unsure as to whether he’d been having seizures in his sleep, causing his sleeplessness. I wasn’t sure if we needed to do another overnight EEG study. She suggested we do a sleep study to see if he is having apnea of any kind and perhaps another VEEG. We are still waiting to hear as to when/if either will happen.

Of course, literally the night following my phone call to the nurse Vic actually slept! Our “little noisy car” has been on good behavior almost ever since I made that call. I now know, and I suppose I always have attributed most of this to that damn teething! This is how it goes…he wakes up grinding, the grinding leads to upset stomach, he pukes, he cries and wakes up. Frankly, all of us have been wiped out with the teething, the diet, and trying to figure out what his meds have been doing to/for him.

If you recall we had an issue with his Lamictal in August. Since then, we’ve been wondering when the lamictal may have spiked in his system which could add to the impending sleeplessness, crankiness, upset stomach. Mid Sept, we flew down to Reno to visit with my family. Although we stayed in a nice resort in the privacy of our own apartment, the trip for us was extremely difficult. Victor was so sensitive in every way, leaving us unable to relax, especially Gary. Vic was still having trouble keeping his food down and was more sensitive to oral feeds than he had in the past. With the stress of travel, in general, Vic’s health issues impacted our ability to fully have a good “vacation”.

It gets worse…literally, the morning of our return flight, two hours prior to leaving for the airport, Vic profusely vomited. Nothing would stay in his stomach! I was a mess! The preparation before travel with a child is always stressful, but now we had to deal with deciding on whether we should reschedule our flight or take him to a local doctor. With the ease of his g-tube and the feeding pump we use each night, we connected him to water and kept him hydrated. He settled a bit and we opted to get home ASAP. We gave him an ativan to calm him down and thankfully, he did.

I did lots of Reiki on the flight home and sat nervously in our back row, while both Gary and Vic had time to catch up on sleep. We weren’t sure if we should take him straight to the hospital when we arrived, but he literally perked up when we got to Seattle. A few hours later, he was able to take in some food through his tube and keep it down. We skipped school the next day and I monitored him. It was as if nothing had happened; he was smiling here and there. I contacted our nurse, told her our story and requested that we test his Lamictal level. We weren’t sure if the lamictal had indeed spiked and had caused all of this commotion. I took him in 3 days later for labs. The results showed that his lamictal level was ok but he had lost so many electrolytes that he was in a fatal state. Basically, had we not requested a blood test for the lamictal, Vic could have had a heart attack and died! The solution: salt water. Since we had changed his diet, he apparently was lacking the sodium he needs, causing him to have an upset stomach worsened with all of the oil. In a matter of days, the salt water has made a huge difference! He is not puking like he was and he is actually quite happy.

With his stomach calmed but his teething kicked in, his sleep disturbed, two weeks ago, the day Gary planned a retreat to help work on a friend’s cabin, Vic had an enormous seizure! The night prior he had hardly any sleep at all, falling asleep at about 7am. I let him sleep until 10:30, woke him up for breakfast and while he sat in his highchair, he convulsed like I’d never seen. Meanwhile, Gary was outside working on our fence. I knew this seizure needed Diastat—no watching the clock, I just had to give the emergency med. I grabbed Vic, ran to his bedroom, yelled out the window for Gary and started to Diastat him. Gary finally came in, we gave him the med and Vic eventually calmed down (me too) and went back to sleep. It was horrifying! I really thought it was going to be a 911 situation. Vic slept that afternoon until 4pm and eventually slept through the night! Gary canceled his retreat.

Needless to say, perhaps you can see the pattern here. Sleep is vital to Victor’s system! Not having had enough sleep, combined with the hard teething, set him into a horrible cycle of seizures.

After dealing with that situation, the past 2 weeks have literally felt blissful. We did another blood test and found that his electrolytes have stabilized and his lamictal did spike. We regularly give Vic salt water and are weaning him slightly from the Lamictal to get him to a level that is safe for him. He is sleeping more regularly and napping but we do have intermittent days. He has been happy—and I mean, like any baby is. He has been so happy and giggling, it is such a joy! To see him smile and giggle at the things he sees or does, gives me the most tremendous feeling of gratitude that I can hardly express it here. Our little guy is so strong, it amazes me what some people (including myself) complain about and I look at this child and think, “he is a miracle”! He is showing me how to love more than I ever thought I could, how to be patient and how to appreciate the life and health that I have.

Throughout all of this hell, we’ve managed to try and remain as Normal as is possible. In September we fit in a zoo trip and day trip to Gig Harbor. Last weekend, Gary (and partly I) finished putting in a fence adjacent to the crazy rental house. We are now searching for a dog for Victor. Eventually, we plan to fill the side yard where the new fence is, in with woodchips and make it a dog run, where Gary also plans to build a shed and dog house (of course). The basement project is coming along and we’ll now re-focus some attention there, if we can get someone to watch Vic while we pound out some frustrations in the basement. Vic has been in school now for several weeks and really enjoys being with the other kids. I continue with weekly yoga and Gary regularly swims. Hopefully, we’ll have a chance to go on a date soon too!

Life sure is a mystery!

Next Update: After Thanksgiving, if not before then.

FYI: we have the ability to video chat with our cool new MacBook. I “chatted” with my sister in Mexico for 2 hours. If you can video chat too, let us know so we can set up a chat time.