Post Hospital: Week 1

We have had a wonderful week! Vic’s overall health is really good and he’s showing us how much better he feels. Not only has it been great returning home but also we’ve now got Victor moving on the right track and with much laughing! We continue to be amazed by Victor’s overall new demeanor. The once cranky child with intermittent smiles and laughs is now a truly HAPPY Victor--laughing all of the time. He loves spending time flat on the floor, as he wiggles and feels his body moving and revels in being swung both by us in a blanket and in his bedroom swing. He is now moving all of his limbs and his hands are much more loose than ever before. Following his wiggling, he is giggling with joy and wonder. This is SO refreshing!

On top of this laughter, Vic continues to be undeterred by the various sounds around him. We have not felt a need to use those earmuffs, once! Vic still may show a slight irritation to some sounds but this is mostly when he is transitioning toward sleep or the sound is particularly startling.

We’ve also noticed that Vic’s seizures are few and far between. One day, I recall him having maybe one 10second seizure for the entire day! So far, we feel that the new medication, Clorazepate, is working well for him. He is on an extremely low dose so he is not sleepy all of the time. Another good thing is that we’ve not been glued to a schedule as much as previously. We used to have Vic’s meds spread 4x throughout the day; now it is only at noon and 8:30pm.

Vic continues to be fed solely via his tube into his duodenum. We’ve increased his rate so that he is allowed 5.5 hours off of the pump. When we were in the hospital, he was only allowed off for 2 hours. We plan to continue increasing his rate and then slowly attempt food in his tummy again.

Also, during our first week Vic and I went to Boyer to say our Final Goodbye’s to his classroom. We had cupcakes for everyone and gifts for his teacher and therapists. Surprisingly, I didn’t get as teary-eyed as I expected. Rather, it was so nice just seeing everyone; I enjoyed our moment of calm among chaos.

Vic enjoyed swinging outside in the sunshine and being held by his various therapists. During circle, both his teacher and I were amazed to see how much more engaged he was with the activity; he looked at the object, smiled and vocalized—he’s done this before but not as definite as he did on Monday. During circle, I kept thinking, “it sucks that this is our last day…just when he’s really started to explore”. Oh well, he’ll have a great teacher at his new school who’ll engage him 4 days/week (her name is Laura).

Last, I know many of you wonder how Gary & I are doing…we are back to work and back to our regular routine: Gary goes swimming and I started up yoga again. On Sunday we got out (alone) and played tennis together. Many years have passed since either of us hit a ball with a racket. We did surprisingly well even if Gary won (not next time). It was certainly a good stress release!

And as far as the basement goes: colors have been chosen, paint has been purchased, partial flooring has been installed and the rest ordered. We are on our way!

In sum, a pretty darn good week!

Next Update: Saturday, July 26th.

FREEDOM!

We're free!
We're free!
And, freedom is now our reality!
(sung to the tune by, The Who)

Finally, our day arrived and at 4:30pm we left Children's Hospital. Gary spent the bulk of the day and the previous night with Vic, while I filled up the fridge with food and prepared for our return home. Vic smiled in the car and giggled on the way home but really let out a true guffaw, when Gary put Vic down on his bedroom floor. Bernie welcomed him with kisses and we all had a good laugh together.

It feels so good to have dinner in our own home and know that we can all sleep in our own beds with no machines beeping through the night or having constant nurse/doctor interruptions and best of all Vic will not have to endure the 11am daily blood draw! During our 20 day stay, poor Vic had 5 different IV's placed and required daily finger pokes to see where his protein and nutritional levels were. Unfortunately, we still need to take Vic to the hospital 3x/week for blood tests but they aren't daily. We'll do this for a couple of weeks to make sure that he has fully bounced back from the intestinal virus and is able to produce albumin as he needs to.

For the next few weeks we'll continue feeding Vic mainly through his feeding tube directed into his duodenum for 2o hours/day on a slow continuous drip with a feeding pump. It is a pain to have that pump going so much through the day, but it will be on our time! Eventually, we will introduce food into Vic's stomach again and slowly make sure his stomach can handle the volume that it once did before all of this mess. Also, it will be awhile before introducing oral foods but we are confident that he will have no problem chewing like he did before.

Yes, we still have many hurdles but it is so much better approaching them in our home on our own schedule.

July 8th is our Independence Day!

Along with some celebratory pics, I've included a few overdue photos: A photo of Vic w/ B-day cake and one with Vic wearing Gary's latest invention (Kid Listening helmet) which includes Vic's new headphones for when he begins listening therapy in September. This last pic, showing Vic's rash was taken a few days prior to our admission. That rash was everywhere! And below, I've included a little video from earlier today.

Where we go from here......

Well, as many of you know we’ve had a horrible past few months especially the month of June. But, before I get into that I want to mention that we had a wonderful Memorial Day weekend with our dear friends; the Zettler-Bailey’s. And, since I’ve not been so good about keeping up with photos I am including various pictures of our trip to their cabin in Mazama, WA. Not only was the drive up through the mountains beautiful, the weather was perfect. We had fun playing in the woods, building fires, taking walks, checking out the real Western town of Winthrop, saw (the end of) a rodeo and Gary even had fun building stuff with Eric. Bernie, our dog, LOVED the great outdoors and since that trip has come into his own; not following me everywhere!

Also, since I last wrote, I attended a benefit for Seattle Children’s PlayGarden where I met a host of wonderful people and had discussions about the Swing Campaign. In fact, on June 1st (Vic’s Birthday) we were featured in our local kid paper (Seattle’s Child Magazine). Since that article the Parks Department is working in conjunction with the PlayGarden to install 30 new adapted swings throughout Seattle Parks. Unfortunately, Vic and I weren’t able to attend the press conference on June 18th but we are so happy to be a small part of this effort.

Also, in June, not only did Victor turn 3 but he graduated from Boyer Children’s Clinic. Following my battle with the Seattle Public Schools to allow Vic to remain at Boyer through June, Vic was actually not able to attend Boyer because he became so sick and wound up in the hospital. During our stay, both Vic’s teacher and speech therapist came for a visit and gave Vic a wonderful new book and a cool duck puppet, that makes Vic laugh. We are really looking forward to returning home and visiting Boyer for one last time before he heads off to his new school in September.

Not only did Vic miss out on saying goodbye to all of his friends at Boyer but he also missed out on his evaluation for the horse riding therapy at Little Bit. It was our hope that he would start hippotherapy, this week. Instead, we’ll focus the rest of the summer on getting Vic healthy again by returning to his in-home therapies and enjoying the outdoors. The plan is to get Vic on those horses around the same time he begins attending his new school in the fall. And, while we weren’t able to head to New Jersey this summer, to visit family/friends we sure hope to reschedule while the weather is still good. In the meantime, we have a few fun trips planned for August where we’ll stay with friends near Gig Harbor and stay at a dog-friendly cabin in Long Beach for the International Kite Festival. We sure are looking forward to good times and leaving this current experience way behind us!

For those who aren’t up to date with Victor’s hospital stay, please see the post: June-July Hospital News. Email updates are listed in order of events as they occurred.

Thank you all, again, for your support. It is never easy staying in the hospital and we know it isn’t easy not knowing what you can offer, especially from a distance. Your positive thoughts and prayers are all that we ask for and all that we need.

And for anyone who wants to offer physical labor, I’m attaching a few sneak peek photos of our 4-year basement project that still awaits us. The entire basement has been primed and part of the flooring will be going in this Thursday. We still have plenty to do before we can use our new media/office/therapy space. If you feel the need to paint, we’ll take you up on it! Let us know if you’re interested in painting or providing any other handy service and when. It was our original goal to have this space ready for action by the summer.

THANK YOU!

June-July Hospital News

Victor was admitted on June 10th for one night. We went home the next evening only to return again on June 19th. We are hoping to go home for good, on Tuesday, July 8th. Below are email updates from this nightmarish event!


6/13/08
I know many of you don't know this but Vic has been struggling with keeping food in his stomach since mid-May. We had been treating things as if he caught a cold or something, as he also showed a runny nose & sneezing. On June 1st, Vic suddenly projectile vomited and hasn't been able to have ANYTHING in his stomach since. We've been feeding him solely by using the J portion of his G-J tube, which means he's taking only minimal food /water into his intestines (thank goodness for that damn tube, as he would have been hospitalized much sooner).

During our struggles and various doctor appts, this past Monday he developed an odd rash all over his body with puffy hands/feet. Tues after seeing the doctor again and having no answers I took him to the ER. Apparently, his protein levels have been quite low; leading to the puffiness. He's vomited so much that his protein became extremely low.

We were admitted to the hospital Tues night and had a series of major tests/X-rays, where it was confirmed that Vic's stomach and intestines are not blocked and are functioning properly. He's never showed a fever. With the lack of sleep and no answers we opted for discharge and returned home Wed night (everyone slept). There is no explanation for the rash. He's been sleeping well but waking up retching. He continues to laugh and has actually been lifting his head more than typical.


Now, I'm about to take him in for a scheduled procedure that will happen at 1:45p today. He will be sedated. They will look at the inside of his stomach and do a biopsy to see if there is infection or whatever else could be the cause of this weirdness. I suspect we won't return home until later tonight.

Please keep Victor in your thoughts today.

Thank you so very much!

Laura

6-15-08
Thank you everyone for your kind words and for keeping Victor in your thoughts and Prayers. I wish I had some wonderful news to share with everyone but frankly, not much have changed.

Victor's procedure on Friday went well. They looked at the inside of his stomach, which showed everything to be normal. They also took a biopsy of his stomach but we won't know results for a week or so. The only thing we've uncovered is that a stool sample revealed some sort of bacterial virus in his intestines. We're treating it with an antibiotic. In most kids they would have had a fever and diarrhea; Vic's had neither.

The rash has gotten worse; it's all over his body and reaching across his forehead. They think it could be related to a high level in one of his seizure meds but it seems odd, as he's been on this med for over a year and never once had a rash (not even a bad diaper rash as an infant). In this case we've decreased this particular medication to see if the rash is related. Time will tell (hopefully very soon). I wonder if his med level spiked along with this funky bacterial thing...the doc hasn't dismissed my theory.

Vic continues to wretch through the day. This is the most disturbing, as there is not much else we can do. We've been told to monitor him this weekend to see if the bactrim (antibiotic) is helping to clear his infection. So far, no change. The next step looks likely to change his current feeding tube to one that fits him more properly.

That's all I've got for now. We're on pins and needles, hoping to get some answers.

Thank you again for your continued thoughts, prayers and kind supportive words!

-Laura, Gary & Victor


6-21-08
I'll make this brief...

Things have not been going well with Vic and while we were treating him with an antibiotic to help alleviate his ghost symptoms of a bacterial virus, it turns out that the medication the hospital dispensed has sugar in it; meaning, Vic could have gone out of ketosis and things could have been much more dangerous (he is not allowed sugars/carbs because of his diet). The thing is, we brought Vic to the hospital for other reasons and found this out later.

Vic's seizures started getting worse as of Wednesday night and we had to use his emergency med 2x within 24 hours (we hadn't used that med in about a year). We stopped the rash-related seizure medication-cold turkey as of Monday. His puffiness has gotten worse and his rash has persisted. Our gut told us that something wasn't right, so Gary took Vic for blood tests on Tues; we didn't get results until late Thurs morning. When I heard the results (his protein level dropped again and his beta level severely dropped; related to his level of ketosis), I knew we had to take Vic to the hospital.

I've got no other news than that. We will most likely be in the hospital over the weekend. Just prior to my leaving Gary and Vic last night, we learned that Vic's sugar level elevated from around 50 to 99!

Thanks again for your supportive words and prayers. Please keep 'em coming!

-Laura

6-21-08
As predicted we're still inpatient and will be here at least through Monday. Here's my best take on what was explained to me earlier today:

Last Friday's biopsy showed some sort of infection (I forget the name) in his gut. While he still has something else called, Aeromonas they aren' sure which came first but they have both been effecting each other and have certainly been a cause for the inability to store protein properly. All of this can be cause for the rash which could be a result from the puffiness; a result from the inability to process protein well.

The good news is that we are treating it with a non-sugar/carb antibiotic. We are working to figure things out with his diet to include the vitamins that have been eaten up by this virus but probably won't change anything until they can reach a dietitian on Monday. The other good news is that earlier, Vic woke up with a smile and made some happy sounds while also opening up his puffy little hands. He continues to come in and out of sleep but we're feeling better that we're getting some (not all) answers. We have no idea what the cause of this was and probably won't find that out.

While we've become somewhat germ-phobic because of Vic's low threshold, we ask that you take this experience as a reminder for persistent hand washing. Wash your hands and make sure your kids are washing theirs; when entering yours and anyone else's home, before eating, and certainly after using the bathroom. You just never know......

I'm hoping my next update will be of us returning home!

Thanks again for your thoughts & prayers.
-Laura


6-24-08
Although Vic's MRI was a breeze yesterday, considering that he didn't require much anesthesia and he woke up earlier than he has in the past; we're still here. In fact, after the doctor rounds this morning I'm under the impression that we could be here all week!

Here's the quick skinny:

• We know he's fighting two intestinal viruses and we're treating them with an antibiotic.
• The main focus is getting him better nutrition: for some reason, he's not been processing his protein well, which is the result of him having edema (puffy) and a horrible rash (which is slowly healing).
• He's also not processing his fat properly and we need to make a switch with his oils (this is actually pretty minor and pretty simple). Basically, we have to work with the dieticians to get him on-track
• We don't have results yet from the MRI

He'll be under observation to see if the edema and rash dissipate and his energy returns, then we can think about returning home!

I've attached a photo from the article that is in the recent Seattle 's Child Magazine. I can't wait to get him swinging again!

Thank you All,
-Laura, Gary & Victor

Ps. In case you're wondering how we're managing this ordeal: Gary and I switch off each night staying w/ Victor or returning home to deal with house stuff. Since we have Internet access in Vic's room, we're attempting to get work done when we can. And, Bernie-dog is enjoying taking commands from his new friend, Conor Esler or spending time with the Zettler/Bailey clan when they're back in town. Yes, we're very tired!!


6-25-08
Hi Family,
Gary somehow managed to go to the office this morning and I sit here on this gorgeous sunny day, next to Vic. Thankfully, our room has a decent view and we've been visited by a small neon green hummingbird from time to time.

I've attached a photo of Vic with his new Duck puppet (sent to him from his speech therapist), which quacks to the tunes of Old McDonald, London Bridges and Freire Jacques (sp?). He loves it!!

Anyway, I just found out that his MRI results showed no change from his last MRI (over a year ago). We've changed his nutrition and he seems to be on the mend. Vic's doing much better today. He opens/closes his eyes periodically and he's more verbal showing interest in his newest toy. His rash is so much better than when I left last night. The other thing is that Vic's not had one seizure since we were admitted last Thursday night (if we make it past 16 days w/o seizures, it would be his record since we started the vigibitrin when he was 6 months old). He's also not reacted to sounds as he did prior to this mess. Who knows...we're hoping that since we stopped the Lamictal, that he's somehow normalized to sounds. It'd be real nice if he normalized to not having seizures anymore for the rest of his life, too! Is that asking too much?

Anyway, that's all for today.

Love Always,
Laura, Gary & Victor


6-29-08
I'm making this real brief:

• We are still in the hospital and have no idea when we'll go home.
• Vic is still not processing his protein, as he should. He's still a bit puffy but his rash is almost all gone.
• We saw no seizures for about 7 days.
• Unfortunately, now we aren't sure if a type that's he's had in the past have returned. It is hard to tell as these (complex partials) can be mistaken for just odd neurological movements. In fact, what we're seeing is similar to what we saw a year ago when we had our last overnight study and they told us that he wasn't having these seizures--very frustrating! We don't want to medicate if we don't need to and are also considering coming lower on his strict diet, but this would be a long, long taper!
• We may stay inpatient a bit longer to see if we can be scheduled for an overnight video EEG; to determine if we truly are seeing seizure activity.

If something changes, I'll let you know. Otherwise, know that we are still here waiting it out. Certainly, when we are discharged I will send an update.

-Laura

Ps. Vic is not able to begin the horse riding therapy until September and we've canceled our plan to head East Coast until he is stable.

Jun 29, 2008
I forgot to mention that when we stopped (cold turkey) Vic on one of his meds, his crazy sound sensitivity has stopped too! He no longer reacts to sounds like he did, where even if he heard a sneeze or the sound of a pen click, he'd cry and have a seizure. It also seems clear that his big seizures (petite mal) were an outcome of that particular seizure med (lamictal); we've not seen them for over a week!

We sure are reveling in making sounds without worry (but I'm not tossing the ear muffs yet)!

-Laura

7-2-08
It is hard to believe that it is July 2nd and tomorrow marks 2 full weeks of our hellish admission. Vic is doing so much better (see photo from earlier today) and I actually thought we'd be going home today. Silly me! I nearly cried when I asked the question this morning of when we can get out of this joint? Reply: at best a few days from now. We have no idea what the plan is for discharge and I've been waiting to ask some serious questions about what the hold up is. It's now 5p, I'm still waiting (arrgh)

Here's the good news: Due to a last minute cancellation, we did a video EEG overnight on Monday. Please sit down, if you are not and take a deep breath.....
The results showed that of the 10 events we marked as seizure and had been treating with medication--were NOT seizure. Apparently, he just makes some odd movements due to his undiagnosed neurological disorder. In fact, Vic had 1 seizure that we didn't mark because it was when he was asleep and it lasted for 10seconds. This is freaky, to me, but I'm so glad that the doc's weren't too alarmed by it.

Let me repeat myself: Vic had ONE seizure! Holy shit! Of the two weeks we've been here he may have had less than 3 seizures this whole time! Guess, we won't be giving him those meds anymore.

Now, not only is Vic NOT having the seizures he was having, he's not as sound sensitive as he had been---major lifestyle change for us....you have no idea! Reason to celebrate? YES!!!!
When?----I hope tomorrow but the 4th with fireworks would be just as appropriate!

Did I mention that I turn the ripe OLD age of 39 tomorrow?
Birthday, smirthday? Oh well, I suppose if Vic's birthday was not so great that mine shouldn't be either. Very disappointing!

Hoping we can flee, very, very soon or I may skeedattle (for anyone who read the "Glass Castle", you should be chuckling)

-Laura

7-4-08
Yes, it is the 4th of July; a day of Independence and we are not free. In fact, we continue to be cooped up for several more days, planning to break outta here sometime early Tuesday.

While Vic is doing so much better, his albumin (indicator of how he's processing protein) is still not where it should be. However, the good news is that it jumped from 1.9 to 2.3. A normal range is 3-5. We want to see his albumin reach a normal range and then take him 1/2 way down from his IV. So the plan is:

• Saturday, take him down on his IV by 50%
• Sunday, take him off of IV 100%
• Monday, see how he's doing without IV and determine if his body can process protein by itself w/o IV help.
• Tuesday, run as fast as we can out of here, never to return for an overnight stay!

Also, I need to clarify a few things:
Yes, we are happy to hear about Vic's major decrease in seizures but we are also a bit hesitant. Some things have been explained to me a bit more, since my last update:

While the EEG didn't show what we marked as seizure, to be seizure, they still do appear as seizure but perhaps not all of them. Some seizures can be deep brain and not as easy to detect; we don't know if this is the case w/ what we saw. No doctor can 100% guarantee they aren't seizure. The ball is in our court as to whether we treat them as seizure or not.

I still hate all meds but we've decided to treat him with an extremely low dose of something that is not sedating; as the others we used, were. The thought is that if this really small dose settles him down he may in fact, not have anymore seizures. So, we're taking our chances.

The good news still, is that he is not having the horrific seizures we brought him here for and he is looking real good! I'm attaching some new photos from the other day (very silly).

Thanks for the kind words and birthday wishes. As my dear friend, Devora said, turning 40 will be that much easier!

Happy 4th!
-Laura