Monday, May 30, 2011

Seizures.

"Prior to leaving for Disney World it was set in to motion to start Wyatt on an additional IV seizure med. He's never been on the drug of choice, but it's been talked about in the past. Wyatt has had seizures since he was an infant. At first they were questionable and sporadic, but we eventually began treatment when he was a very young toddler. With time we've been able to better distinguish the types of seizures that he  experiences...tonic clonic, complex partial, myoclonic, tonic. Thankfully, when medicated he doesn't have seizures often. They breakthrough rather rarely (maybe once or twice a year) and an increase in his daily dose usually does the trick to keep them at bay. But we've noticed (and I believe I mentioned in previous posts) within the past weeks that his medications have not been absorbing through his GI tract and come flowing outward through his drainage tubes hours after being given. We can only do so much with trying to 'make' his gut work and watching his seizure medicine come trickling out of his system is greatly concerning. It was only a matter of time until the therapeutic level of anticonvulsant medicine circulating through his body started to decrease. About a month ago we began seeing the signs of seizures. Wyatt seizes most frequently in and around his sleep. There are times that he'll vocalize during an intense seizure that alerts us to what's happening...they're the sounds that make me leap from my bed during a deep sleep. However, there are also times that he's silent and I'm sure we miss seeing a few, but what's telling is the weakness that he experiences for days following an event. It's different than any weakness and fatigue that he typically shows. When talking with the new neurologist before our vacation we expressed what we were seeing and our thinking that it was time to step in and change the way in which his seizure medications were given, in an effort to regain control. At the time we were hoping by some stretch of reality that these meds would at least be started prior to our trip. Unfortunately, due to the infusion company and a bit of communication confusion it just wasn't possible. I was bummed and a bit concerned. And apparently rightfully so...as we were driving toward our destination our boy started to get drowsy and we watched our son's body seize. I hate what seizures do to this child's body. Wyatt sleeps for hours after a seizure, which is his body's way of recuperating. Though, even when he wakes he's still weak and lacks the strength that he had prior to the event, at times leaving him unable to move his own body. We've come accustomed to this, though it never gets easier. So, here we are at the beck and call of the seizures, but hopefully not for much longer. We've now started the wean on to the IV medicine. It's an extended ramp up period and will take several weeks until we are at his optimal daily dose, but I feel like we're at least doing something to help."

This small snippet was part of the post that I wrote last week and decided to ditch at the last minute. I thought I would use it now, as I begin to write about just how much I dislike seizures. I'll warn you, this could get lengthy! The disdain I feel for these events is rather great. Watching my son's body be overtaken by the electrical storm that begins raging inside his mind is crushing. The seizure itself fierce...muscles twitching and at times rigid to the point of moving his body in directions that appear harmful. I can't help but talk him through it, hoping he can hear my words and they offer some type of comfort while his body takes over. Afterward he cries and yells out, disoriented and confused.

Wyatt had an intense seizure this weekend which left me feeling incredibly helpless and filled my heart with anguish toward what he endures. He cried inconsolably afterward, making very little sense when trying to speak. As I look back on the day I knew something was just not 'right', but we have those types of days with no explanation often. It's days like those that I wonder if "today" will be the day that he spikes that temp that we'll need to rush off to the hospital for. So, I didn't think too much about it...just carried on with our day like we usually do with these 'off' days.

The seizure disorder is one of those diagnoses that's clearly important but hasn't been brought to the fore front of this boy's lengthy complex medical chart for some time now. It's been in good control and while a seizure may pop out of nowhere here and there throughout the years, it wasn't something that I viewed as a significant daily concern. We've been very, very fortunate in that regard and I certainly don't want to gloss over that fact! It's one of those issues that I hoped we could just keep in control and not have to experience more than every so often. And even then could be easily remedied with an increased dose. However, Wyatt's particular medication that has kept his seizures under control for years doesn't come in an IV form. Which means we had to change to a similar, but different anticonvulsant that's able to be given through his central line. Changing seizure meds can be risky. When the IV alternative was initially brought up to us as something to try we viewed the risk as losing the seizure control that we found with the current medication. However, now we were facing a losing battle with that control due to his failing GI tract, which left us with no choice but to start the additional drug. But it still brings about a bit of anxiety for me. Watching my son disoriented, weak and confused after a seizure is hard to witness. We can support his body with the respiratory machines, making sure that he is stable and recuperating from the event itself. But beyond that I find myself anxiously waiting (often times praying) that when his body is finished recovering he'll wake and I'll see that same smile and hear the giggle that melts my heart and makes me smile myself.

I'm praying for control and that this new medication that we're slowly weaning him onto will take affect. And if it's not too much to ask, that we can avoid the nasty side effects that can accompany said drug. Healing; what an amazing thing to hope and pray for too.

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Friday, May 27, 2011

This week.

So, I typed out a long post about this, that and the other, but I just don't like it. I believe I need to break out a list.

This week:

- The boy started on an additional IV seizure medication in hopes to regain control over the various seizure types that he experiences (tonic clonic, tonic, myoclonic, complex partial). Please pray that this new med works and he experiences none of the nasty side effects.

- Dr. R increased the dose of his pain medication due to an increase of pain. 

- We visited the surgeon for a follow-up...super easy visit.

- I flooded the basement with a large amount of water when I turned on the outside water hose in an effort to water the flowers.

- We fixed the computer after it decided to stop working temporarily. Truth be told, Bryan fixed the computer. I was just panicking at the thought of not having my computer.

- We finished up the Kindergarten registration process for Jilly with the final "screening", in which she shined.

- I calmed a sad little girl when she sobbed "I'm going to miss you when I'm at school." (referring to next fall when she starts Kindergarten.)

- We visited a research lab, met a new doctor and all three of the kids had buccal swabs to look at their Mitochondrial function.

- We had a visit with "Dot", the class pet. (and Mr. E, Wyatt's teacher)

- We visited Dr. R to check in. We acquired new scripts for the antibiotics that the boy routinely cycles through and he told us to keep doing what works in regards to the oxygen use.

- We all attended the hospitals support group for families dealing with chronic illness. The kids attended their own children's group with their favorite Child Life Specialist, Miss L, while Bryan and I socialized with the other parents.

- We started counting down the days until school is officially dismissed for the school year. We're all looking forward to summer break!

- I scheduled the final IEP meeting for this year to finalize next years transition to 3rd grade for the boy. Not much will change, though his peers and classroom will be in a different building. He'll still be home bound with visits when possible.

- I've had my fill of doctors, appointments, medical interventions and the emotions that accompany them. I'd like to just get back to "living life". I'm very happy it's Friday!

- Have a great weekend!
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Friday, May 20, 2011

Triggers.

Emotions are confusing and so hard to deal with sometimes. I don't know if I'd call myself an overly emotional person...yes and no. I'm not sure. I like to smile and laugh...and tend to choose that route when possible. If I don't laugh, I'll cry! I also analyze situations to understand them. I don't always outwardly show the hard, raw emotions that I'm feeling and think I'm pretty good at pushing them away from the surface when need be. I feel all the emotions, trust me. And certainly, there are the times that my limit has been met and the emotions start spilling over me...there is no stopping it sometimes. But I don't like the feeling of being vulnerable in that way. I'm sure many would tell me that it may not be the most "healthy" way of living to not express exactly what you're feeling when you're feeling it. Or maybe they would tell me I'm not alone and that's how a lot of people cope while dealing with the hard times in life. I'm not sure. Either way, it's me.

Often times in the whirlwind and habit that becomes daily life I become used to everything. It sounds a little silly and I think I've mentioned it before, I don't always realize how different our life is than those around us. I mean, I know it's different, but don't always feel it. That is until I look around and see the few stares and looks that others give in our direction. I can't say that it doesn't sometimes bother me. I suppose that I've just adapted and accepted...I don't just see the tubes, wheelchair and attachments. I see the young boy.

Throughout the years I've found that I've acquired triggers for those emotions that are just itching to surface. Eye-opening moments, even. Last night while watching a television show I could feel myself feeling the same as the actor that was playing the role of a character. I can't say it was the performers skilled ability to portray the emotions that got me, but the story that was similar to our own that touched me more. Which made me reflect on our path and how we got to where we are now.

A year ago we were just returning home from a near month long hospital stay with a new way of caring for our boy. We began adjusting to a "new normal". So much has happened in one year, so much has changed. We've experienced numerous "new normals" throughout Wyatt's 8 years, but not quite to the extent that we did this year alone. I'm scared. I find myself going to those thoughts that bring instant tears to my eyes and wondering about the future. I have hope and am trusting in my faith, but I'm sad that our son has endured so much and still concerned of whats to come. This boy of mine...he smiles, he laughs and he has a tolerance for pain and discomfort that is beyond reasonable. To think of the past 9 years, from the times that I was fighting to keep him safely inside my womb and to where we are now, it's nearly unbelievable. I've said it before, this child is something amazing...undeniably amazing. I can't imagine my life without him and am afraid that one day I'll have to. I'm so, so scared.


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Thursday, May 19, 2011

Our favorites.


There was so much that happened in the week that we were gone that I wish to tell you about. But I can't possibly go through each and every detail of the memorable times that we had. And while I have pictures of a lot of those moments, it's just not feasible to share them all. So, I picked out a lot of our favorite pictures and moments to share and then whittled it down to only a few.


I'm not sure that I have ever mentioned just how much our boy loves Disney World. Don't get me wrong, the girls enjoy it thoroughly too, but Wyatt has a bit (and that's putting it lightly) of an obsession with amusement parks, Disney World in particular. The characters, parades and atmosphere. He loves the thought of roller coasters and thrilling attractions that make people scream in terror and delight simultaneously. Watching and feeling as if he's experiencing the thrill himself through the free promotional vacation DVDs repeatedly, each and every year. Telling us all of each exciting feature of the numerous Disney parks, new and not-so-new. I don't believe there is a number large enough to recall just how many times I've heard about Disney World or watched the DVDs while snuggled up with my boy. And the small video snippets on the website, those are not to be forgotten! I'd be lying if I said there wasn't times that it didn't drive me crazy, and times that for the sake of my own sanity I must tell him "not now." I'm not sure where exactly the intense interest and fascination came from or the how and why, but I wonder if submerging himself in the world of Disney is a temporary transport away from the medically intense life that his small body requires. Whatever the reason may be, the look of excitement and awe that fills his face while just watching the DVDs is so pure. So, you can imagine what planning a trip to this place is like for us. It magnifies his interest by hundreds and he talks about the place non-stop....what he wants to see, what he wants to do, what he wants to ride and what he most certainly does not. He told many prior to our leaving that during this trip he was going to "face my fears" and ride a few of the "bigger" rides like: Splash Mountain, The Big Thunder Mountain Railroad roller coaster and Test Track. And he did, with the exception of The Big Thunder Mountain Railroad. I believe he got his fill of thrill with Splash Mountain and a double ride of Test track that there just wasn't enough "umph" left for the railroad coaster too. But he rode the others...screaming during and smiling when it was over. Each and every cherished interaction and/or treasured moment that we experienced was that much more special to him. He dreams of these things.


There is no denying, Cinderella's Castle at the Magic Kingdom is magical in and of itself. Its large majestic size and beautiful features as if it was plucked from the pages of the fairytale. Jilly was particularly amazed with the castle. A castle fit for a princess, I suppose. And a princess she is.


Monday afternoon there was extensive napping to be had in room 4295...boy, were these children worn out! Sleep they certainly did, but in great timing. 


After their restful naps we then were able to spend the entire evening at Magic Kingdom. Showing up just in time for the greatly anticipated Main Street Electrical Parade. After entering the park and walking through Main Street with multiple rows of people lined on both sides of the planned route, we were a little unsure that we'd be able to view the parade as we had hoped. Though, just minutes before the event began we were ushered into a perfectly roped off seating area marked "reserved." We sat on white benches next to Cinderella's castle enjoying the sights and sounds of the event. It was a perfect spot and we felt so grateful to be able to experience the parade in such a setting. Wyatt sat beside me in his wheelchair and Jilly on the ground next to him. The moment so sweet as I watch them both wave enthusiastically at each of the characters parading by us, yelling back and forth to each other making sure the other saw who was coming and sharing details that were seen. Pure excitement displayed in their smiles and complete innocence seen in their eyes. Maggie sat just slightly behind us with Bryan and enjoyed the parade just as much as the excitable younger duo, but in the "I'm the big kid" kind of way.


Following the parade was the fireworks showing. Could the night get any better, I wondered.


But it did. We stayed in the Magic Kingdom for the extra "Magic Hours" thats given only to those who stay in the Disney resorts. It was very hot while we were in the south and we tried to limit our daytime activities for everyones comfort, but mainly due to Wyatt's temperature instability. We planned things more in the evenings as the temperatures began cooling for the day. The extra Magic Hours that were offered were perfect for such a thing...not to mention the park was much less crowded in the late hours of evening (and wee hours of the morning). We were able to ride and/or see all the "must sees" on our lists and survived the extended fun in the park, leaving the Magic Kingdom with smiles on our faces and jammin' to "It's a small world after all..." in our heads.


Yes, we stayed in the park until roughly 2am. Certainly, we wouldn't have been able to accomplish this without the 4 hour nap that the kids took earlier in the evening! We were soaking it all in, so much so that this particular evening is one of the kids' favorites of our trip. It's not every day when you can revel in the Magic that is Disney until such early morning hours!


During the week we bumped into and/or found many characters. (Imagine that!) Each of the kids enjoyed meeting and 'collecting' the characters' autographs in their special books throughout our stay.




All of the characters spent a little extra time lavishing our trio in hugs and kisses, involving them in silly antics and giggling together. During one of the parades Wyatt was taken by the hand and included in the parade with a new found friend, Jessie. They walked together hand in hand, dancing and waving at the other park visitors. It became clear that Jessie now holds a special place in Wyatt's heart. That evening our sweet boy told me that there may be one person at Disney World that he might marry...


On this same day we had reservations for the Harmony Barber shop on Main Street. It's a small shop hidden in the corner giving haircuts and styles for all ages...making the day a little more to celebrate with newly cut brightly colored confetti covered locks.


On Thursday we spent the afternoon and evening hours at The Hollywood Studios. Wyatt had been looking forward to seeing the "Lights, Motor, Action" extreme stunt show. We were slightly rushed going into the stadium, but the show proved to be worth it, providing stunts that make one gasp. Toward the end of the show one of the employees approached the section of the stadium that we were seated in searching for "a Wyatt." Our Wyatt cautiously looked up at me and started to blush as he raised his hand and the cast member proceeded to approach us, presenting the boy with an honorary stunt driver certificate. He was loving it! After the show had concluded and we were allowing the large, pushy mob of a crowd to clear out of the stadium before leaving ourselves, we were instructed to rush around the stadium and come to the end of the stunt set, where the kids could meet one of the stunt car drivers. We all hurried ourselves around to meet a very nice man decked out in stunt man racing gear and armed with a smile. He signed the autograph books, posed for a picture and then asked if we would like to take a 'backstage' tour. Wyatt shook his head to say yes as a shy smile began to grow on his face. The "stunt man" proceeded to show us all the different vehicles, how they're made differently, the pyrotechnics, the set and all the tricks that make the show what it is.


Let me tell ya, this 8 year old boy was feeling as if he was on top of the World...he's awarded this moment one of his very favorites.


It doesn't appear that our children have a favorite Disney park, though they did leave with favorite memories. Memories that I hope will last a lifetime.


 ******

As I said, these are just a few of the very favorite moments of the trip...it was indeed a magical, memorable time. This week has been brutal returning to the daily schedules and routines, wether we were ready or not. And next week is now full of appointments, as well. We're baa-aack!


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Sunday, May 15, 2011

Smiles, laughter and forever memories.

We bid farewell to Disney World and arrived home late Saturday evening.


Goodbye! Adios! Ciao! Auf Wiedersehen!

Our week was filled with smiles, laughter and amazingly special opportunities for our family, which made the trip so much more. I'm excited to share!

Of course, the week wasn't all perfection and magic, as we still were dealing with slight obstacles and occasional road blocks relating to the boy's health. Oh, how I wish the magic of Disney could make it all disappear for him. The week and excitement of the trip took its toll, but we were quietly celebrating each day that we did not end up in the nearby children's hospital. A seizure on our way was not overly encouraging, as you can imagine, but we adapted rather quickly, realizing what and the amount of supports he would need to get through. However, as the week passed and came to the end, it was clear that it was indeed time to go. And begin to re cooperate from our magical vacation.

Tomorrow it's back to the real world and our vacation will have officially come to an end, though we now re-enter our daily lives filled with freshly made memories that will last forever

More to come...
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Friday, May 6, 2011

Tying up loose ends.


Wyatt had his double lumen Broviac placed yesterday. Overall, he did well with the procedure. He's understandably stiff and a bit sore. But he's happy it's in and his arm is now free from the PICC line and sticky dressing that has been tearing up his skin.


While he was in the operating room we took his wheelchair down to the seating clinic for a few modifications. He now has an oxygen holder on the side of his chair and once we got home we put his new hangers/footplates on, which allows him more growing room for those long legs.


Dr. R decided to make his own arrangements for the procedure (unlike Dr. M's plans) and allowed us to come home later in the afternoon. We took it upon ourselves to run for the door once he was stable, our training was complete and I signed those discharging papers.


Wyatt arrived home to his electrically controlled multi-positional hospital bed. He's very happy with it and gave it a good test last night. He says it's very comfortable and enjoys giving the girls "rides" on his new bed.


We're now trying to tie up all the loose medical ends and working on packing for our trip to Disney World. We could use a little Disney magic!
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Tuesday, May 3, 2011

Overwhelmed.

Overwhelmed is the theme for this week.

We've been slammed with back to back appointments, surgery, equipment deliveries in amongst the typical weekly and/or monthly deliveries of supplies, preparing for our trip to Disney and all the planning and organizing that entails, along with a change in medications and the daily schedule. Not to mention, I'm sick. Yep, it's true. There doesn't appear to be enough cough suppressing drugs on the market to contain the breath that randomly bursts out of my lungs. I don't have time for this!

My head spins just thinking of all that needs to be accomplished and stable before we're able to pile our 3 children and the traveling hospital that must accompany us into our accessible mini-van.

Oh. My. Gosh.

Yesterday we left first thing in the morning to make our way to meet the surgeon who will be skillfully performing a surgical procedure on our boy later this week. Wyatt has had a PICC line (Peripherally Inserted Central Catheter) since starting IV nutrition 7 months ago. It was discussed among the IV team and Dr. R several weeks ago that we must move on to a more central location at this point. And he'll be having a double lumen broviac catheter placed on Thursday. We talked about the timing of the surgery coupled with our impending vacation, but we're determined to make it work one way or the other. After all, 'making it work' is what we do. Wyatt is known to have complications with anesthesia and any stress a surgery places on his body. Like I've mentioned in the past...his body doesn't play by the rules. So, there is an understandable hesitation coming from the doctors about timing and how this could possibly play out. Originally it was discussed that we could have the surgery as an outpatient procedure and go home the same day, as long as he was stable. Now, it doesn't sound as if  that plan will be in effect.

After finishing our appointment with the surgeon we hurried ourselves to another appointment at a different location with a new-to-us neurologist. We initially met this doctor while inpatient during one of our several stays this past winter. He is new to the hospital, though not new to medicine. We've been told of his upcoming arrival and it's been mentioned that we should start seeing him. After our meeting in the hospital we decided it was appropriate to add him to Wyatt's medical team. He's very knowledgeable in the field of medicine that we need him to be and willing to jump in and guide the team in the area of his specialty. After our hour long appointment talking about our son's health, Dr. M had opinions and recommendations to add to his care. He would like to switch Wyatt's seizure medicine to an IV form. It's clear that Wyatt's body is not absorbing his medications appropriately as we see them drain from his J-tube hours after being given, when we must unclamp the J-tube for his comfort. His current anticonvulsant doesn't have an IV form, therefore we must switch to an alternative. In addition, he would like to include the IV form of carnitine to Wyatt's medication schedule, as well. Carnitine is often used as part of the "Mito cocktail." Wyatt was originally prescribed several of the "cocktail" components, though it was decided and recommended a few months after that we stop the prescribed supplements. It was clear he was not absorbing them through his finicky, failing gut. Not many of the choices for the cocktail are available in IV form like carnitine is. We also discussed anesthesia and surgery. Dr. M has specific recommendations following anesthesia and any surgical procedure that our boy will need, including this week's plans. The initial plan that he would prefer would be to carry out supportive measures which must be done in the PICU, though in that situation the surgeon and Wyatt's team would lose the ability to call the shots. But there is a "Plan B" that he's willing to try first and then transfer to the PICU if it doesn't work as we hope. He was emailing all of his recommendations to Dr. R, the leader of the pack, and is allowing him to take over the orders. So, I'm not sure we'll know the plan prior to arriving for surgery on Thursday. But we do know that Dr. M's plans involve staying rather than risking another crisis away from the hospital. We'll see if Dr. R is in agreement.

Today was slightly more low key than yesterday. Jilly had a speech evaluation first thing this morning and will receive speech services to help correct her articulation. She was excited that someone arrived at our home needing to work with her and not her brother. She sat on our wooden dining room chair, wiggly and antsy, answering each question with a smile. Wyatt happily played on the computer while Jilly took on the spotlight for the morning. Though, it wasn't long after that the nurse was knocking on our door, looking for the boy. Here to carry out the weekly assessment, blood work and dressing change.

Tomorrow we will visit the hospital, again, for a pre-op exam and discussion. I also hope to do a bit of shopping in preparation for our trip, as there will be no time left later in the week. Thursday we will be spending some portion of the day at the hospital (don't know surgery time yet). Meanwhile at home, Wyatt's electric hospital bed and new foot plates for his wheelchair (he grew) will be delivered to our home. Along with a home visit from our home health care company's respiratory therapist to check his respiratory equipment and deliver more oxygen tanks. I believe Nanny (my Mother) will be juggling the littlest of the bunch, the home visits and deliveries, as we navigate the hospital once again.

So much to do. And hoping my spontaneous swigs of cough medicine will start working as advertised.

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