Tuesday, January 31, 2012

Watching him smile.

Today, while the girls were both at school, Wyatt and I had a quiet day playing and talking. We talked about how he's feeling, what's uncomfortable and what's feeling better. He was sitting in his wheelchair for a bit this afternoon playing a Disney Cars game on the Wii, an activity that he used to love prior to September/October, and today asked to play again for the first time. We've seemed to have gained a degree of pain control since this last stay in the hospital, his pain rating as low as a 6 out of 10 at times. I'm not certain what has attributed to this change, but think it's most likely coming from the increased dosage and frequency of the Methadone, a drug that we know works best for him, along with the comfort that the supra pubic catheter gives him. His Dilaudid PCA dosing has now returned to the settings prior to surgery. I do realize most wouldn't celebrate a pain level such as this, but for us and "our normal," it's an exciting step. We've not seen a "6" since October and we've not seen lower than a 10 (out of 10) for quite some time. It's progress...wonderful, great and very much needed! A break from the intensity of his pain has brought healing, motivation and, in a sense, freedom.

Wyatt and I talked of aspirations recently, what he would like to do again. He misses walking the most, understandably. The ability to move his body from point A to B without the power of his wheelchair, something that many of us take for granted. And something that he has no desire or enough energy to even think about when his body is hurting badly.

Today he allowed me to help sit him on the edge of his hospital bed, his legs dangling over the side and me supporting his body, as we've done many times before. Using all his might just to hold his head upright as much as he can. He then put his feet on the ground, something that hasn't happened recently. After giving him a little encouragement, I stood in front of him, holding his body up in somewhat of a standing position. He smiled a smile that lit up his face with great pride.

He's been tolerating time off the bipap machine the last few days, using 3-4 liters of O2 via nasal cannula for up to a total of 2-3 hours a day. It exhausts him, his heart rate rising with the increased work and stress put on his body to take breaths on it's own, but he can do it for a short while again. It's so nice to see that beautiful face wearing only a cannula for a little each day!

But above all else, what little pain control we've found has brought back my boys smile. I love watching him smile!
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Thursday, January 26, 2012

Blasting right out of there.

First- we arrived home late last evening, infused all his needed meds and settled in. Today has been a day of re-adjusting to our daily routines and catching the Hospice team up with changes.

But next let me tell you about yesterday- Wyatt experienced a very special moment that he was able to share with many of our friends at the hospital. The hospital is currently under construction as they build, essentially, a new hospital onto the existing building. It's a very large project that will take years to complete.

We've watched the construction crews move into place since August, each time that we took up temporary residency on 3F.

As we spent September and October in room 5 we watched as the leaves on the trees just outside our large window changed colors when the weather began shifting seasons. One early morning, as I sat looking out the window, the tree tops next to us began to shake. Quickly the trees were swiftly cut and moved from our view in a matter of seconds. The rest of that chilly fall day we watched as each tree and bush in the area was placed in a pile and put through a big machine, making saw dust out of what once were large, strong trees. Wyatt was much too sick to open his eyes, let alone watch the progression of events. But I'm sure he would have been entertained.

It's been bitterly sweet watching the area change each time we return.

During the first days of this hospital stay we were told that the construction was slowed due to bedrock and the need to blast through it. And later was informed that Wyatt was being offered the opportunity to assist the construction crews, hard hat and all.

We transferred our boy to his wheelchair for the first time since surgery, our nurse making sure he had all his scheduled medicine infused and/or infusing so not to interrupt the excitement with beeping IV pumps, the respiratory therapist standing watch close by. We then made our way to a specific room that was set up for the occasion. The window free of any mini blinds, offering a clear view of the construction site.

After meeting the construction Manager, Frank, and talking with several crew members via two-way radios, we learned what they were doing and needing help with.

Wyatt, placing his new hard hat upon his head, gladly took on the task. After the crew prepared the field, our sweet boy pushed the handle down, blasting the ground with 85 lbs. of dynamite. We all watched as the ground jumped and a smile grew across Wyatt's face, hearing the loud explosion.

A little boy's dream come true!

He gave his new friend, Frank, two thumbs up. And later told us "that was extremely awesome."

The crew went above and beyond, engaging Wyatt in conversation, moving the big machinery and performing fun tricks for us all to see. It was incredibly thoughtful and sweet, making this memorable moment so very special.

Thank you to all.

He's enjoyed telling everyone about the days events and wearing his hard hat. It's not every day that a boy gets to blow things up, while in the hospital none the less!
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Wednesday, January 25, 2012

Going home.

Ah, leaving the hospital and going home. A happy time filled with a flurry of activity and coordination among many. There is a lot that goes into getting this boy of mine back to his home.

It made me smile when the resident, naive to the complexities of Wyatt, talked of possibly discharging him at the end of the day after they make sure he's doing "ok." Oh, how it would be nice if we were only waiting on their piece of paper saying we were now free to go. There once was a time...

I then informed him that we need an entire day, sometimes 2, to alert hospice and the infusion companies, fax orders for all his infusions, supplies and new equipment, time to wait for the infusions to be made, TPN (IV nutrition) delivered here to the hospital, the rest of the infusions/supplies to our home and coordinating with hospice to meet a nurse at our home at the same time we arrive to (re)hook him up to his PCA pump that continuously infuses vital pain meds into him. This takes time and organization. So, this morning all the people involved in getting us home will be doing what I just mentioned and then some.

We're preparing to go home again.

After getting answers to a few concerns during rounds and further questioning them about this rare bug that he possibly has growing in his line, infectious disease agreed with allowing us to go home and wait out the cultures there. It's a slow growing bug and if it's going to appear it'll take some time. Our boy is as stable as he's ever going to be and we can "wait" just as well from the comforts of our own home.

Yesterday we were able to pull a significant amount of fluid out of his body with lasix, which was encouraging. He still has a huge amount left in that little body of his (10+ pounds of fluid), but it's a start!
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Tuesday, January 24, 2012

An update.

Where to begin..? Lets start with the surgery, Wyatt's new supra pubic cath is draining well. He's dealing with pain left over from the procedure, but also his "boy parts" are swollen and causing a large amount of discomfort. This morning the swelling looks to have decreased since last night. But he's been awake since 4am this morning crying and complaining of an increase of pain in/around his penis, unable to sleep because of it. He finally just fell back to sleep. We had a decent weekend, but yesterday was a struggle and the night didn't bring good sleep. According to the urologist, he's also developed yeast in and around that area which we're now treating topically. (We've already been treating for its large presence throughout his intestinal tract.)

Infectious Disease is sorting out what bugs have been growing in his line, as well. His first cultures were positive with what we thought was only one bacteria. But as time went by more bacteria began to grow on the set of fungal cultures that was left. The first and possibly second was sensitive and treated with the antibiotics that he was already on, the third is still in the process of being speciated. It's supposedly a slow growing acid fast bacteria. They're working on getting an identification before deciding how to move forward. But the most recent bacterial cultures have been negative, which slows down the urgency a little. Yesterday they drew specific cultures for this category of bacteria and now we wait to see what/if something begins to grow.

Saturday evening he spiked a fever, but slowly it began to drop. Since then his temperatures have been hovering above his norm, but not reaching "fever" range. Could be his autonomic system feeling overwhelmed with the stressors on his body or something more significant. We've seen it happen both ways before. His weight is also up another full Kg in less than a week, signaling that he's retaining even more fluid.

Clearly, we have a few open ended issues that need to be tied up yet. He's been keeping everyone busy with trying to put all the pieces in order. Hopefully today will bring us one step closer, we're missing the girls and our home!

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Saturday, January 21, 2012

Post Surgery update.

The procedure itself went as well as expected. There was miscommunication surrounding the staff, which added a layer of stress that we didn't particularly need, but we're now just happy it's over with and moving on to recovery.

The surgeon wasn't able to place the new catheter as high on Wyatt's belly as he had hoped due to swelling/edema throughout his abdomen, but this placement should be just as efficient and is draining well. As Wy was waking from surgery we were way behind with pain control. He was beyond his point of no return, which required the anesthesiologist to give him additional propofol to put him back to sleep until we could catch up with more appropriate amounts of narcotics. Since then he's been having a fair amount of pain, but the increases of Dilaudid seem effective. They adjusted his PCA button to have a lockout of 5 minutes instead of his typical 10 and in addition to his continuous/demand rates through the pain pump, he's also able to receive a large bolus dose every 2 hours as needed. We had recently adjusted his scheduled Methadone to every 4hrs instead of 6, as well. He had an initial after surgery surprise of two foley catheters, one in his penis and the new suprapubic catheter in his belly. (We were under the impression he wouldn't have the catheter "below".) But the urologist was just in to change the dressing and removed the foley cath from his penis, which was a great relief to the boy who was highly annoyed that he woke up with two catheters!

This morning he's been doing well, the new catheter is draining like it should, moving causes him pain, but the medications seem to be keeping things more tolerable. We're still waiting to see the rest of his doctors later today, but so far, so good. Keeping our fingers crossed and prayers said that this trend continues!

There are so many to thank for extending your love and keeping our boy in your thoughts and prayers. Thank you!  
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Friday, January 20, 2012

Today's Agenda.

The boy's name is on the OR schedule for this morning to have the suprapubic catheter placed. I've heard three different times from different people, but we figure it will be some time between 9-11am. Wyatt's very scared. He's been awake all morning and has been having nightmares through the night. He has great anxiety over procedures and the surgical area of the hospital. If you would, please keep him in your prayers this morning. I hope to update more later.
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Wednesday, January 18, 2012

A change of plans.

As of yesterday Wyatt was put on the OR schedule for 11am today and everyone was preparing for their roles. By evening surgery had been postponed. Wyatt's now growing bacteria in his urine which brought the surgical plans to a halt. He's been put on an additional antibiotic and we're waiting for this new bug to take a hike. Hopefully he'll be put back on the schedule for Friday.

Yesterday afternoon/evening we also began to notice he was developing a reaction to an antibiotic thats treating the line infection, Vancomycin. He's had this drug many times before, but apparently yesterday his body seemed to decide that it had enough with behaving. It's an easy fix by pre-treating with an infusion of benadryl prior to every dose and extending the length of time that the med is given. Just another hiccup in the day.

He had a fitful night of sleep, waking with pain and or nightmares. His blood pressure was swinging low for a bit, as well. For today, I believe all thats in the process is an EKG and the usual routine.
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Tuesday, January 17, 2012

Just waiting.

This morning seems to be moving quickly, yet not much has happened (not a bad thing, just a quiet morning). Wyatt is still sleeping, the doctors rounded and the nurse has been popping in and out as needed. The plan for today is to keep doing what we're doing. The antibiotics appear to be doing their job and this infection hasn't made Wyatt sick sick, thankfully. It appears we caught it early before giving it the chance to settle in. From what I see, he's as stable as he gets at this point in time. Which is a good thing! (Good as in he's not sick sick...not that this is as stable as he gets.)

The plan is to get Wy on the surgery schedule tomorrow (or at least sometime this week) to have a suprapubic catheter placed. Instead of moving forward with the procedure that we originally were planning for in August/September and was put on hold a couple times since. The urologist who would be doing the surgery doesn't feel comfortable doing the Mitrofanoff procedure anymore, given Wyatt's health and the complexities within it. But he did completely understand the concerning aspects of Wyatt's pain and agreed that we needed to provide "comfort". The suprapubic cath is a much shorter procedure and has the potential to improve his quality of life, exactly what we're looking for.

But for today we're just hanging out, waiting for negative cultures.
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Monday, January 16, 2012

7 Weeks.

7 weeks- the amount of time Wyatt was home without needing to be admitted to the hospital. Longer than most of us thought it would be, truthfully! He was admitted via the emergency department yesterday, due to a line infection. Overall he's doing about the same as he had been. Thursday was encouraging as he had a good day, pain was more tolerable. But was followed with days of increased pain and a full, more distended belly. We drew cultures 10 days ago that grew positive from one lumen of his central line, but within 4 days. We weren't certain it wasn't a contaminate and waited for the specifics/sensitivities of what it was and then redrew cultures on Friday morning. This time it grew within that crucial 48hr time frame and from both lumens. And we were summoned into the hospital to start antibiotics.

If there was a time this would be "good" one, at the least. The balloon to Wy's foley catheter popped Friday evening. We were able to tape a straight cath in place and were going to wait until Monday (today) to harass the doctors for a plan of action. Wyatt is not easy to get a catheter in to and the urologists have proven the only ones successful to get a foley into him. It's certainly not comfortable for him and the last time he needed a foley we decided he'd need sedated for any following placements. So, it makes planning a bit more involved. There has been a few cathing options floating around recently (I'll explain when I know more) and we're hoping we can get this piece taken care of while we wait for the antibiotics to do their magic.

And as far as the on going battle with pain, we hope to see an improvement with treatment of this infection and possibly a measure of comfort with the urological plan thats floating around. We'll see...
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Tuesday, January 10, 2012

New wheels and the Muppets.

I often want to type out blog posts of events, pictures or silly things that I know others would enjoy with us, but recently those posts quickly get thrown aside as something else happens that takes priority or throws us for a loop. "The plans" seem to be changing every day anymore. But tonight I want to quickly share before getting side tracked with some new (or different) issue that needs my attention.

We picked Wyatt's new wheelchair up last week. We're all adjusting to the new controls and Wy has been enjoying the adjustability that gives him a better degree of comfort. Though, while taking these pictures he was hurting a lot, which explains the distressed looks he was giving.

It took a little brainstorming to figure out how exactly we were going to sling all of his equipment on the back of this new chair. It doesn't have the same designed handle bar set up as our last, which took a little adjusting to. But after a few hooks were added and straps lengthened to varying heights we got it all to delicately fit. I've been readjusting the set up each day and finding new ways to place this or that. With time I have no doubt that we'll figure out where everything works best.

We added a bit of flame detail to the arm rests and have plans for a few more fun touches (that don't involve flames). So far, we all give the new wheels two thumbs up.

With the new wheelchair, we recently took a family day to see a movie that our crew has been waiting to see. Thanks to a local movie theater (and a thoughtful friend) we had the entire movie theater to ourselves.

Wyatt struggles some with crowds of people and the loud volume of a movie theater. The staff was accommodating and very sweet as they turned down the volume, making sure our boy was comfortable. And we enjoyed our private viewing of The Muppets.

But that wasn't all, delivered to our home the day before our private viewing was the large display that was located in the theater advertising the movie. The manager thought Wyatt might enjoy it and he was correct. It needed a little modifying to fit into the house, but once cut down it found a nice little home along the wall next to Wyatt's bed (for now). 

The movie was great and we all enjoyed the special time. We can't stop singing since...

Mahna Mahna
Do doo be-do-do
Mahna Mahna
Do do-do do
Mahna Mahna
Do doo be-do-do be-do-do be-do-do be-do-do-doodle do do do-doo do!

And now I'll begin to brace myself for what may come tomorrow. Good night, friends!

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Sunday, January 8, 2012

Never Lose Hope.

This week has been full of emotion for me, not much unlike other weeks recently, I guess. But this week seemed a little more poignant. Since my last actual update on Wyatt we've had positive improvements, concerning sights and areas that continue to leave us feeling weary.

Positive improvements- we started Omegaven December 23rd. Since that day Wyatt's billirubin levels have dropped a great deal. The whites of his eyes have lightened up, his skin no longer yellow or green. There is no denying he looks so different than he did just a couple weeks ago. A good...no, make that a great change!

Concerning sights- his distending belly has been getting fuller and larger recently. We're unsure the reason behind the expanding belly, but it certainly looks uncomfortable. I did make the much needed shopping trip for all new clothing to accommodate the change. If nothing else, the boy now has new clothes to wear.

The part that leaves me feeling weary- pain control. Need I say more? This part is difficult. Where is it coming from, why is it there, what can we do to make it stop...if nothing, then what can we do to make it better? This week left me feeling as though one of my worst fears that I've always had for my son could very well be unraveling right before our eyes. We have nothing to take away his pain. At times it feels untouchable. There may be nothing worse than holding your child as they cry for hours feeling pain and knowing there is nothing you can do to help them. We've tried every option in the book to help ease his pain over the years. Hugging and comforting, warm and cold packs, massive amounts of distraction, massage, special oils and lotions, stretching, being stern and/or frank with him, ignoring his complaints, capturing his pain on video to show doctors exactly what he's doing and hoping they see something that we're missing, entering every combination of words that I can think of into google - hoping it may lead us to a new suggestion, talking with other parents, praying and when all else fails crying with him because that's all that's left. Recently, the narcotics that work the best cause more, or worse problems. Or are not even available in this country. The one thing we have always strived to do was find something, someone to help us help him with the pain. I've always felt while it may not be possible to stop what's happening to his body, the result, pain, we can do something about. It really hurts coming to the realization there truly may be nothing effective we can do.

So, while the end of this first week of 2012 left me feeling broken and my tears plenty. The words "Never Lose Hope" kept popping into my mind, much like a whisper in my ear.
Never Lose Hope. Powerful words they are. 
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