Dedication to my Aunt Nancy

I dedicate this entry to my wonderfully loving Aunt Nancy who after suffering a massive stroke, passed away peacefully with loving family around her, on January 5th, 2009. Aunt Nancy (and family) welcomed me to Seattle 12+ years ago when I moved here from Boston and knew no one. Aunt Nancy was always interested in me and what I was doing. She was always concerned with how Gary & I were handling things. She loved Victor dearly. She always wanted to know how his therapies were going and if he needed anything. Despite my telling her that he was fine and needed nothing she’d make a point to get Victor something that he could inevitably use. Below is a clip of Victor's recent ride that was attended with my mother on January 8th. Prior to Christmas, Aunt Nancy was supposed to join us at this ride. We dedicate Vic's session to her.

Aunt Nancy: We miss you dearly, love you fondly and Thank you for your wonderful loving & giving heart!

Dec '08 & Jan '09

(For the November update, scroll down past this entry and then return here)

As we entered December I was still getting over whatever weird bug I caught and soon after Thanksgiving Gary set up the trains and we decorated for the Holidays.

By this time, Gary had completed a big portion of the basement and after the carpet was installed we welcomed Gary’s early Xmas gift: 42” HDTV. The rest of the furniture followed and we began using it just in the knick of time... Seattle & the rest of the Northwest was then pummeled with snow.

With cold weather upon us, and Thanksgiving behind us, Vic had his last hippotherapy session for the quarter on Dec 11th. It was his most delightful session ever! Vic was so bundled that he could hardly move, but the air must have hit him perfectly because he was smiling and giggling the entire time. He was even presented with a wonderful tree ornament from one of the volunteers who helps with his sessions.

I sure didn’t expect it but not only was Dec 11th Vic’s last day of riding for the quarter, it was also the last day of school until January 5th! During one of his snow days, Vic got his 1st Botox shots in both his left and right hamstrings to help loosen his muscles and make stretching and standing much easier. We have seen a difference and Vic’s legs straighten so much better. Unfortunately, the botox wears off and he’ll be getting these shots every 3-4 months or so.

Thankfully, during many of the snow days Vic was able to continue his in-home therapy (when the therapists were able to get here). He also really enjoyed hitting his button and activating the Xmas tree and trains again this year. The snow, while absolutely beautiful, left many of us feeling a bit stir crazy. Bernie, however, loved every minute of it minus trying to figure out where to poop.

During the end of November and into December, Vic maintained keeping food down but had re-developed his sound sensitivity. He was ultra-sensitive again, to the point where we began using his earmuffs more regularly and his seizures became more severe and more common. Also, his sleep pattern was way off! He was waking up multiple times/night and wanted to sleep during the day. Before the break, his teacher told me that he’d snooze a few times during class. So, we decided to try another medication.

For several weeks we put Vic back on Klonopin; this was a med he tried in the summer while in the hospital. At that time, we saw it stop the seizures entirely but we stopped it because he was completely knocked out. However, since time passed and he was much stronger than he was in June/July we gave it another try. At first it seemed to help but slowly we saw him be less present. He only had fleeting moments of alertness and was always very tired. We stopped this med just before Christmas and have replaced it with a specially ordered Canadian med; Clobazam.

To date, Vic is still on the Clobazam and we’ve increased the dose slightly in order to get us over the hump with the change in his Keto Diet. To back up….Vic’s mid-December labs showed both a major decrease in iron and other critical vitamins, so we recently brought his fat content down in order for his body to absorb the nutrients that he desperately needs. Vic has also been getting liver injections to increase his iron level but recently we’ve switched to an easily digested iron supplement. Overall, we are seeing improvements; he is more present and happy, vocal and loose but his sound issues remain and are the cause for most of his sudden seizures.

As we closed out 2008, not only did we end it with watching the last Sopranos episode but Vic fell asleep for the first time ever before 9p and stayed asleep until 10:15a the next day! He’s continued to sleep better these days with a few early morning interruptions due to teething. Basically, he may cry and settle down shortly after we’ve put gel on his gums. We’ve also been keeping his bed real toasty prior to laying him down…this seems to help him stay asleep but we’re still experimenting.

2008 was full of more than one roller-coaster ride! Yet, we are grateful for so many things that have helped us get through those rough moments: supportive friends, family visits, a wonderful dog, good friends who’ve watched Bernie when we’ve been inpatient, super neighbors and of course the best sitter for Vic ever: Lynn! We’re so glad that our year ended with several social get-togethers and are happy to have had another Thanksgiving & Christmas at home. Having a peaceful New Years was a dream! We hope this is the start of a wonderful year ahead and a year filled with good things for Victor’s progress.

**Hospital Complaint Update**
In response to my initial complaints regarding the many times that the ER/hospital messed up, we received both a verbal response from an ER Chief and a written letter explaining that our complaints have not gone unnoticed. In fact, I received a screen shot of the changes that have made within the hospital’s computer system; alerting any medical personnel about specific issues. For Keto Kids, the message now reads: "Ketogenic Diet Precaution! Ketogenic Diet Patient - Seizure Risk" , followed by a list of what can not be administered.

Thank Goodness, Vic and other kids like him may feel safer as they should be!

November 2008

Shortly after my last update, things took another bad turn for Vic. On Nov 13th, Vic awoke from sleep, crying and badly retching. Vic coughed up a large amount of dried blood. We had seen dried blood in the past, it was mostly related to teething and stringy but his was so much more than we had ever seen. After doing some nurse-type work on him, we settled him down, he fell asleep and we went to bed. The next morning, shortly after getting him ready for the day he spent another hour of retching and brought up food with more bits of dried blood.

I phoned the doctor and requested that lab orders be put in at the hospital so we could run some blood tests. After that horrifying hour, Vic’s attitude completely changed; he became happy and was very alert. So, I started to think (again), “maybe this is teething”—he’s always been sensitive with each tooth. We did the blood draw and then we were off to Vic’s osteopath (1 mile away). During his session, I got a call from the Dr’s office; Vic’s potassium was extremely low and I had to rush him to the ER.

Surprisingly, I was very calm during this whole thing. I was NOT at all worried. I knew this had to be related to the hour he spent vomiting in the morning and his system just needed time to “reboot”. He was telling me that he was OK by smiling and being very chatty. I phoned Gary, telling him not to rush out of work. I was sure that after another set of labs and keeping his food down that Vic would be fine and we’d be heading home.

However, Vic’s potassium lowered and he was admitted. While in the ER, and after Gary had come and then gone home to pack for the night, the ER nurse came in telling me that Vic’s potassium IV bag had glucose in it. I was livid! Vic should NOT have sugar because of his diet and ALL of his files show this. Knowing the drill, I told everyone about his Keto Diet as we were checking in. I always make sure to let the nurses and the doctors know this. I could not believe that this error was made again! Quickly, I lost it and demanded to speak to the ordering doctor. I gave her a piece of my mind and am sure many people heard every word that I began yelling.

At about 10p that night, after returning home, I wrote a message to the hospital and all critical staff, regarding this consistent abuse of errors that we and especially, Victor, have endured. The following day, Gary told me that in the wee hours when Vic had (as expected because of the glucose issue) a long series of seizures and when Gary asked for the emergency med (Diastat), it was NOT on the floor. Another letter of complaint was immediately written!

Vic stayed for one night. We wanted out of there as quickly as possible. All of his blood work came back normal and he was no longer retching blood. We were discharged the following evening at 5p but left with no answers re: his vomiting or the blood.

Two days later, I took Vic to see his GI doctor. He, too, had no explanation for what was happening. I told him that I stopped Vic’s Prevacid several weeks before, because he’d been on it so long that I was worried that his body wasn’t producing enough stomach acid to help breakdown food. But, we were giving him Zantac instead. Still, nothing was surmised regarding what was going on with Vic. Several days passed and on Friday, Nov.21, I took him to the hospital again for the same reason. The retching and blood returned and I was focused on seeing a different doctor or having them a GI scope to explain the blood. Gary met me at the hospital and we sat for hours (5+) in the same exact room as one week prior; waiting for answers, getting none and then planning to take Vic to another hospital. We demanded to see someone in charge!

Finally, after hours of being stalled because we mentioned leaving, we spoke to two medical directors and an administrative person. One of the doc’s was a specialist in GI surgery and made a special trip to see us. He kindly explained what was going on. Simply, Vic needs Prevacid. Zantac is just too mild for him and the Prevacid is strong enough to alleviate the irritation that is caused by his feeding tube. We literally just started giving him a 2x dose for a few weeks and he has not retched since. We’ve got him down to 1 tablet 2x/day and he is doing worlds better. I am amazed that what was explained to us in the ER was not explained to me during a routine clinic visit. We know this all could have been avoided, if I was given a simple explanation to begin with. We are so grateful to that very knowledgeable doctor!

Meanwhile, as we were dealing with the hospital experiences I caught some bug that left me in pretty bad shape. I was unable to talk without having serious coughing fits for weeks. Into the night, I coughed, didn’t sleep and was plain exhausted. Somehow on top of his regular work, Gary managed to keep our home ship sailing extremely well.

Thanksgiving was not too far behind and we were so thankful to be out of the hospital! Our gracious friends had us over for dinner and we all had a great time catching up and relaxing. Gary & I rounded out this rollercoaster month by celebrating our 5th anniversary. We had a fantastic dinner and were able to finally relax on a date together (it had been months).