Saturday, March 24, 2012

Living in Limbo.

Just a few months ago we were preparing ourselves for our worst fear, saying goodbye to our son, while fighting with all we had to give him (and us) more time. Surprising us all, we've been given this precious gift of more of the best gifts I've ever received. Over the last few months, through trial and error we've found somewhat of a balance of narcotics, anti-epileptics, anti-psychotics and Omegaven, giving him as much comfort as we can as his body struggles to keep functioning.

His liver function improved with the use of the trial drug, Omegaven. His color returned to a normal pale shade, making him look much better. While his liver is still enlarged and effected, it's certainly functioning much better than it once was. His pain is at a much more tolerable level after many tweaks to his Methadone and Dilaudid dosing over the months. We've learned the doses required to give him relief are very big, but we're grateful that they're available. The supra-pubic catheter brought about an increased level of comfort and while it was another surgery, he recovered well. The catheter is doing what we were hoping for.

There has been several infections that needed attention the last few months that he fought through well. There have been new issues here and there, some explainable and others not as much. It's so hard to watch your child's body and mind change.

Since that time just months ago when we were talking of plans, fearing the worst, our life has been altered in many ways. We now essentially have a small ICU in our home and that travels with him when we leave the house. My version of him doing "good" is so warped. And every once in awhile there's a conversation with a friend that becomes a reality check, clearly depicting just how far out of the norm we're living. Not that I didn't already realize, but leaving me wishing for the days to be easier, mostly for Wy.

This week was long. Wyatt wasn't sleeping and at times his brain was racing along on high speed, his anxiety was high and his moods were erratic. His body was desperately seeking rest, his pain increased, he just couldn't get comfortable in his own skin. By mid week, as we were riding out the manic episode I was hitting my own limit. Thankfully, by Thursday early morning he began sleeping more comfortably and we began to see more of "our boy" return.

Each day I wake, wondering what today will bring. He can be unpredictable, this boy, and we've learned to be ready for anything. To revel in the good times, soaking it all up when his mind and body are both present and in sync. And we've learned when to act quickly, be proactive and when to just watch and wait during concerning moments.

While unpredictable in how he feels, in some ways our days are now a more scheduled routine. During the week the girls go off to school, Bryan to work and Wy and I begin our day. His med schedule alone keeps me busy, let alone the rest of his care, time to play and our revolving door of professionals.

Yet, there is that feeling in our lives, as if we're living in a state of limbo. Lacking a sense of stability or certainty...occasionally "boring" would be nice! But, with my now warped sense, I see limbo as good. I'll take limbo any day, as that means we've been blessed with more time. So, that's where you'll find us for now, we're living in limbo.

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Friday, March 16, 2012

Welcome, Spring!

Over here in our little area of the country spring has come. The weather is changing, flowers have started to emerge and the spring breeze has filled our souls.

The changing weather has spurred my thought process a bit lately. Wyatt's a rambunctious 9 year old boy inside his little mind. Cognitively he's like any other boy, though his body doesn't work as such. His decline since last fall has been significant and has taken a lot of adjusting for us all. Our home is not designed for easy wheelchair use and we've had to adapt as we go. In the past, Wyatt would ambulate through the house and used his wheelchair for longer distances the majority of the time. Now that Wyatt's non-ambulatory and reliant on the wheelchair completely, we've been learning what works (or doesn't).

Playing in our backyard has always been something that our family enjoyed. Often times I would be planting flowers or some other busy task, while the kids were swinging on the swing set, playing with balls, bouncing in the bounce house or thinking up a new game from the depths of their imagination. But recently I've been thinking about spring, summer, fall and how playing outside will be different now. I've been racking my brain trying to come up with ways to adapt our yard, thinking of things that Wy would enjoy, while feeling included.

Last week I found a great idea for an outdoor chalkboard on the web. The instructions didn't sound too complicated and we already had the 6ft fence. So, I talked it out with our friends and by the time Bryan arrived home from work the project was in motion. It's perfect and bound to keep them happily busy. It's the first of a few outside projects that we're planning.

While the guys painted the new large chalkboards yesterday, Wy turned up the speed on his wheelchair and we let the boy go for it. He zipped, turned and maneuvered his speedy little device all around our yard, his body wildly bouncing every which direction while squealing and laughing. You couldn't help but laugh and smile with him.

We then watched as he helped Maggie pull Jilly and friend in a wagon, following behind the little red wagon in his chair, pushing gently with his foot. Priceless.

I sit here now looking at these pictures, thinking of the last several months. Just a few months ago we never thought we'd see this child laugh, squeal in delight and play as he did yesterday. The chances were very slim and the outlook was bleak. But somehow he did it again...his strength and the fight within him is something great! This boy played outside again. Yes, it was different than years past, but the joy (the smile!) was still there.

This life is an amazing thing.

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Tuesday, March 13, 2012

Busy day ahead.

It's so special to watch each of the girls walk over to Wyatt's hospital bed along the wall in our living room, lean over the rail, their arms in a hugging form, barely touching him so not to wake him up, they say "Goodbye. I love you. I'll see you when I get home." This happens each and every time they leave the house without him. This morning as they left for school was no different. We arrived home last evening once again, with another hospital stay officially behind us. A quick one (relatively speaking), lasting only 5 days.

Wy came home with three additional medications to be infused multiple times a day and a med schedule that needs sorted out desperately. We should be seeing our infusion nurse at some point today to draw labs, as his clotting times (PT and INR, specifically) were prolonged more yesterday than they were when he was first admitted, with no sign as to why. Which was a bit concerning. They loaded him up with big doses of vitamin K before we left, hoping that may bring them closer to normal. The hospice nurse will be visiting this morning to catch up on the changes that took place. And I have bags and boxes of medical supplies needing to be put away, among the typical household "chores" that are waiting for my time and attention. It looks to be a busy day, at home.

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Sunday, March 11, 2012

SuperWyatt Sunday

Things have been moving right along here in our little area of the children's hospital. Wyatt's blood cultures are now negative and he's been fever free. He's doing well and kicking the bugs out of his system.

He was bleeding from a few areas initially and it was found that his clotting times were prolonged (again), but after several days of extra doses of Vitamin K/Potassium we're heading in the right direction. He has routinely received extra vitamin K in his TPN for quite awhile, as this is an ongoing problem for him. He's had a couple nose bleeds today, but now very minor compared to what they could be.

We've been working toward figuring out what's causing the color changes that we've been seeing recently too. We would like it to happen while we're here for Dr. R to see for himself. Today he did get purple/dusky grey in areas, but didn't see the more pronounced colors that we've seen at home (I do have's better than nothing.)

The boy was busier today with an EKG, ABG (arterial blood gas) and chest xrays, in addition to his normal care and med schedule. He received a dose of lasix just a bit ago and is certainly dumping some fluid that his body has been holding on to. Per the resident, a repeat chest xray may be done in the morning to see if lasix helped to lessen what was seen on today's film.

While we've been here Wyatt has enjoyed showing his friends the strength that he's regained recently, bearing weight on his legs and taking steps not once, but twice today. He also painted another ceiling tile this afternoon, this time a self portrait in his true super hero form, SuperWyatt. He's been sleeping for large portions of the last several days, but today was awake, happy and sweet. He's currently fighting sleep, but will soon have no choice but to give in. Those droopy eye lids of our super hero are quite telling.
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Friday, March 9, 2012

Here we go again.

We arrived to the ED late yesterday afternoon, after Wyatt's heart rate and temperature continued to climb throughout the day, a fever eventually reaching 102.8. I consulted with Dr. R and he gave us an hour to get his fever to drop below 101 before giving in to fate. We're no strangers to the routine and packed our bags ahead of time. His temperature dropped while in the emergency department and I was hoping that we could possibly wait out the blood cultures from our home. Nope, we got up to a room come evening.

He was started on antifungal and antibiotic coverage directly and had an xray of his distended belly. He has no new symptoms alerting us to a viral cause. They detected gram negative rods in his urine quickly, which we expected. They were present last week, as well. We now wait for the blood cultures to grow (or not grow). The night was pretty uneventful aside from a bleeding nose come 3am. His temp rose slightly again come midnight but I believe has dropped a bit since then.

We'll be seeing the docs this morning and formulating a plan for today.

Update: We've been told as of 2am his blood cultures are positive. We haven't gotten specifics about what was found yet.
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Wednesday, March 7, 2012

A series of changes.

We're currently in the process of having shift nursing set up for in our home. Up until this point we've carried out all of Wyatt's care at home by ourselves and we've strived to "make it work," as I often say. And it has worked for us and our family's lifestyle. But I do agree with the many others that have brought up the point, there could be a time and place that a helpful nurse would compliment our routine, as well. So, the process is started. And I've found myself stressed! I can be a little particular with how things are done, I suppose. And trusting my child's medical care with someone other than Bryan or myself can be difficult. We met with our first potential nurse yesterday afternoon and I don't see a working relationship happening between us...not a good match.

I know some look at us as if we're crazy to not have nursing with the amount of care that Wyatt's requiring...I get that. Some days as I'm infusing meds continuously and juggling each level of his care, I think we must be too! But we've adapted and settled into a routine. We may still be crazy, but it works for us most days.

I'm not sure why I get such mixed feelings about nursing. I adore our infusion and hospice nurses, and the nurses that often take care of Wyatt while in the hospital. I'm trying to be a little more open to the idea and hope that eventually it'll all work out and we'll welcome a trustworthy, confident (in the care being given) nurse into our weekly routines.

Wyatt's been hanging out in his special tomato chair and swinging in the swing these days. He really enjoys the freedom of movement the swing offers him. He and I have been working toward him sitting in different positions (with a little less support) and even trying to stand more often. I can see he's becoming stronger in areas and more confident as he feels the change too. It's exciting to see him regaining some of his strength! But he also appears to be working toward mastering the art of color changing at this point. His respiratory system seems to be finding it difficult to keep up with an increased demand. He relies on the bipap support, including a set rate of 25 breaths per minute, with an additional 3 liters of oxygen all hours of the day. And yet at times his body is craving more in one way or another. We've been told he's at the maximum pressure settings for a bipap, so right now we're unsure what else we can do for him. What I am sure of, we all greatly miss seeing his face that's hidden behind the bulky masks. Not to mention the indents and markings from the pressure of his masks that are embedded into his skin.

This weekend we removed his mask for a minute as we transferred him from his wheelchair to his bed, Jilly exclaimed, shocked "I didn't even recognize Wyatt!! He looks like another boy!" It's true, his appearance has greatly changed since he's become very sick. Add that to very rarely seeing him without a bipap mask and I'm sure he does look like a whole different child to the girls.

The picture on the left was snapped during a quick switch from his bipap to a nasal cannula on the day our RV arrived for his Make a Wish trip, during the last week of October. The picture on the right was taken just last week following a good face wash/tooth brushing and before I put his bi-pap mask back on. I knew his looks changed but didn't realize to what degree until I put pictures side by side.

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