Wednesday, January 30, 2013

I believe He has a plan.

I would not consider myself an overly religious person. At this time we don't go to church every week, nor do we read from the bible on a regular basis. I can't recite scripture from memory or always remember the exact sequence of events that is told in the bible. But I do have a strong sense of faith. We believe in God and pray frequently. My children attend church, Sunday school and bible school. And at times we receive communion in our home, for the obvious reason that we can not always attend church on Sunday mornings.

I don't always understand what happens when it happens. But I'm not one to question "Why?" often. I trust in Him, a lot. I believe He has a plan. I don't always like the plan, but I'm not certain I always have to. I'm willing to follow, if He will lead.

Yesterday my heart felt shattered to a million pieces and so broken. Completely and utterly filled with grief. I cried a lot, sobbed. I cried for the boy Wyatt used to be. I miss him so much- his loud voice, his silly personality and his happy scream that I often reminded him to quiet when he was younger. I cried for all the pain that Wyatt has experienced each and every day. Pain that I can't even comprehend or imagine myself. I cried at the thought of my life without my son. A thought that is scary but I know is coming. I cried thinking of the relief I may feel when he does indeed go. Relief knowing his body will not be in pain anymore, the worry gone. I cried at the thought that my house will be a daily reminder of his life. I wish I could turn back time- to watch him run through the house as I remind him to slow down his feet and to use his inside voice. I cried as I looked around my home at the rooms filled with his equipment, his supplies. His pants laying across the back of a chair, his shoes sitting in the corner, his toys on a small bookshelf...so many pieces of him fill our home, our lives. I cried at the thought of my home being emptied of it all- transforming our entire home to a place we won't even know. Those thoughts, they break me. 

 I prayed, begged even, while I cried.

I questioned myself- if we should be doing things differently, if my son was suffering unnecessarily, if we were doing enough or too much.

Wyatt didn't wake at all during the day yesterday. Come 4pm I began to wonder if I'd ever see him happy again. He eventually did wake up shortly after 5pm. I cleaned him up, took off the bi-pap mask to replace it with the cannula at his request, brushed his teeth (much to his dismay) and put his glasses on...just as we do each time he wakes.

I have always followed Wyatt's lead and my instincts these last 10 years. I could never explain the feelings I have felt- I just know my son in a different way. And now, nearing the end of his life, is no different. I'm following Wyatt's lead. I can only hope that I will know when the time is right to make him completely comfortable and say our goodbyes. I questioned, cried and prayed about this yesterday.

Last night, though he was only awake for 3 hours, somehow he, or maybe He, knew just what I needed when I needed it. Wyatt smiled and enjoyed swinging wildly in the net swing as Jilly pushed and twisted the swing from behind. He didn't complain of much pain, like he has the past few weeks. He then asked to bounce on the inflatable horse that we had gotten the kids for Christmas. He bounced and balanced happily for 45 minutes before being ready to get back into bed.


After extended hugs, lots of kisses and multiple "I love you's" he fell quickly back to sleep. My heart feeling somewhat at peace again.


Today he was awakened by his dreams of heaven- something that often scares him. To hear the phrase- "Mommy, I think I'm dying." -from my son takes my breath away. Today he wasn't as scared when he woke from his dream. He seemed more concerned of how I would feel as he told me about it. In fact, he said he was dreaming of eating pizza.

I don't know what the future may hold or how long we will have with my little super hero- I believe that's up to Wyatt and God. But we do know the time is nearing. And I can only hope and pray that He will guide us all through this.
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Friday, January 25, 2013

Tough week.

Just a quick update- Neurologically things shifted again, Wyatt's body became floppy, his speech slurred and weak. He's sleeping a lot and at times unresponsive. Our boy is struggling. We lost the "old Wyatt" again, my sweet boy.

For that amazing week or two that he had returned last month- body, mind and spirit- I was so elated to hear his thoughts, his voice, watch his body move and see his spunk that we've been missing. To watch him fall so soon again has been difficult and confusing.

I'm happy (and thankful) we were able to experience that time with him, though. A reminder that he is still here, with us- even if it is questioned.
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Tuesday, January 22, 2013

Talks of Heaven.

We sat talking of Heaven yesterday afternoon, thinking aloud- do people wear colorful clothes in Heaven? Do you change your clothes in Heaven? Are there bathrooms in Heaven? Do you have to eat in Heaven, or just because you want to? Are there roller coasters and water slides in Heaven? Do people swim in Heaven? Does everyone know each other in Heaven? Are there houses in Heaven? Do you ever sleep in Heaven? Do you have an address in Heaven? How do people find each other in Heaven?

We talked of what we thought it may be like and the love that we may feel as we arrive. Wyatt would like to ride a roller coaster and a water slide in heaven. He thinks they must have bathrooms. And he looks forward to eating food. We wondered if Jesus would ride a roller coaster with him too. In the front seats, hands raised above their heads, smiles on their faces and sounds of happy coming from within. Do you think?
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Saturday, January 19, 2013

Thumbs down.

Wyatt is still a "thumbs down." Let me translate, in Wyatt's communication methods that means he's feeling cruddy and is sick. He's been sleeping a lot, still retching some and still struggling with pain. His Zofran dose has been increased and time between the doses has been shortened, which has helped calm the retching and nausea. We began treating with an antibiotic, Cefepime, at the end of last week to cover the large amount of gram negative bacteria growing in the urine culture. We also began a high dose anti-fungal this week to cover the yeast that had started a raging war within his body and grew in cultures as well. Wyatt and yeast do not have a good working relationship.

Early this week it was decided to increase his continuous Fentanyl dose, with the hope of helping him rest. He was so very tired but pain and the need to push his button for a demand dose was keeping him awake. We are suspecting his pain is related to both the bacterial and fungal infection, though not entirely sure. His complaints are mostly of severe belly pain, as well as his head. As we increased his Fentanyl dose again we discontinued his Clonidine, in an effort to keep his heart rate in a safer range. We felt a high blood pressure was likely safer than a heart rate of 30bpm or less. But even with that increase to the continuous pain medicine he was still using a huge amount of demand doses (button pushes.) Yesterday afternoon our hospice attending doctor called and it was decided to increase the demand dose by 50%. The amounts of Fentanyl he's using are unbelievable. He does feel some relief once he receives enough. Which is good and what we are striving for - it's just the amounts that he's needing are so large. When he is awake I'd describe him as the "old Wyatt" that would have an infection. As in, before the neuro- toxicity of the Dilaudid took over. That's encouraging and I'm holding onto that. But I'm concerned and feeling discouraged with the need to increase the Fentanyl further for multiple reasons.

Yesterday we tackled changing his supra pubic catheter in an effort to help get rid of any extra bacteria/fungus that may be hiding out. This is never an easy thing to do, but Wyatt-the-warrior rocked that catheter change, if I do say.

When I first began typing this morning he was awake and watching TV with the girls, laying side by side together in the bed that is sprawled across our living room. He's complained to me of pain and pushed his button, but he was awake and interacting with the girls. How he is able to wake with the amount of Fentanyl in his system is beyond my understanding (not that I'm complaining.) But we try to accept these unexplainable things. After all, there has been a lot that's been unexplainable within the last years.

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Sunday, January 13, 2013

I do it because I still can.

Often times in the past 10 years people have commented to us saying- "I don't know how you do it." Or asking "How do you do it?" And I never really know how to respond. The comment is often made in response to a certain aspect of our lives. Whether it's my memory of exact medicine doses, his recent lab values that I can recall off the top of my head, the way in which our home is set up or just knowing what he needs when he needs it.

This week I've heard the comment multiple times, from multiple sources. Every once in awhile, after hearing it from several people in a short period of time it makes me wonder exactly how we do "do it." One comment that struck me most recently was in response to sleeping on the couch (or the bed in which our couch pulls out into) for the last 16 months. I know it may be shocking to some. But it's true- Bryan and I haven't slept in our bed for well over a year now. As some may instantly assume, I will say it has nothing to do with our marriage or relationship. We sleep in our living room with our son. In many's eyes that would seem terribly inconvenient. But we sleep there, in the same room as him, because we still can.

Our daily routine revolves around a med schedule. Even through the night- we set alarms to wake up every couple hours to continue infusing medicine through his central line because we still can.

Most nights Wyatt is sleeping next to me. He's scared to sleep alone. It's not the kind of scared that you would typically think of when it comes to a child...usual nightmares or monsters under the bed. No. Wyatt is scared of laying alone and dying while we sleep. He has told us this in the last year. And to be completely honest, that scares me too. So, I can't say I ever long for my bed or wish things differently. Our couch is just fine. I sleep on that lumpy pull out couch next to my son, often holding his hand, because I still can.

As I rattle off exact medicine doses to our hospice nurse as she visits, our conversation jumps to discussing his lab values of the week, specific types of bacteria, daily output, breath volumes and oxygen requirements. It is a little different than what most Mothers of a young boy do on a daily basis, but I feel if I don't know it, do it, live it- then who will? I take care of my son in this way because I still can.

We don't have nursing. Which is by our own choice. I think if we had nurses who were with us from very early on in this journey our life would be different. But trying to train a nurse in our situation now would not be easy to do and more stressful than would be helpful. I want to take care of my son. I want to soak it all in as I know one day soon I won't be able to do this. I do it all now because I still can.

So, if you are ever left wondering how we do what we do every day. I can tell you, I do it because I still can.
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Thursday, January 10, 2013

Sick kid.

Wyatt is sick. He's in pain, laying with his eyes closed and moaning for the last couple of days. He wants to sleep, but has only been sleeping in short intervals before he's awake and uncomfortable again. Cognitively he's still clear, a little loopy, but aware none the less. He's been retching and vomiting bile, which he hasn't done in a long time. We've ramped up his Valium doses, adjusted his Zofran doses and he's been chewing through a lot of Fentanyl with his button (demand doses). For perspective, he was using 2 - 4 demand doses a day and he's now using 17+ demand doses in a day. That's a lot of Fentanyl, along with a significant increase to his fluid intake. So far the urine analysis has shown he's growing a large amount of yeast and bacteria in his bladder. The cultures are still pending. Though, we suspect that's not the only spot the bacteria is hiding by the way he's acting. As he began to feel poor the amount of time he's tolerated off the bipap has decreased again. He's acting febrile, but his body has not been able to mount a true fever in response to infection in quite some time. I wish he could/would, spiking a temp would make figuring out what to do a little easier on us.

At the moment he's sleeping. I've been able to slowly pull my hand from beneath his and slip off the bed from laying beside him, without waking him. That just may be my greatest achievement for today.
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Friday, January 4, 2013

Happy New Year.

2013- I'm not sure how I feel about starting the new year. Either way, it doesn't matter as it's already here and started whether I'm ready or not. So, I must embrace it. Happy New year!

As many of you following our journey know, 2012 was an incredibly tough year for our family. There was a lot of uncertainty and pure heartbreak as our medical team prepared us multiple times to say goodbye to our son. Many, many prayers were said through tears this last year. It's very likely that 2013 will be bringing similar situations and emotions for our family. But after looking back through my pictures from the year, I felt proud that we tried to live beyond the bleak outlooks that we were given. I hope we can always continue doing just that. I'm so thankful what was expected did not come. "Thankful" doesn't give justice to the emotion I feel, to be honest. It's much more than that, another level. I'm sure you can understand.

It's not often I'm able to write about good and I actually stahled in doing so, so not to jinx it. But it's time to share...we've witnessed what we consider big changes within the past couple of weeks. In fact the physical therapist who hasn't seen him since the beginning of December left our home this afternoon smiling in disbelief and commenting to me "You weren't kidding." Wyatt has been awake on average 5-10hrs a day, which has been so nice. He's breathing on his own. (Go ahead- read that last sentence again!) We've been able to take off the bipap for hours each day, he's been wearing the nasal cannula and using 3-4 liters of O2. His longest stretch to date using the O2 via cannula has been 6hrs, but the amount of time he tolerates varies from day to day. His tics and tremors have lessened in intensity, seizures calmed, speech is stronger, cognitively he's been clear. We've seen facial expressions, comments and reactions from him that we haven't seen in so long! He's happy. He's been playing with the ipad and video games on the playstation 3. Some of his muscles have relaxed and he has the ability to use his hands more and straighten his legs a bit straighter (more than the "frog" position). For some time there was a fear that Wyatt was experiencing neuro toxicity along with hyperalgesia related to the use of Dilaudid. It appears that was accurate in our boy's case. The change in him has been significant!

As I had mentioned previously, since coming home from the IPU Wyatt is using a Fentanyl PCA for pain control, with both continuous and demand doses. His doses are very high. They would certainly knock you or me out for a very, VERY long time. But the way in which his body metabolizes medicines due to his disease and the type of pain he experiences is very different from a typically working body. The bradycardia (low heart rate) was pretty extreme for a couple weeks and certainly kept us on edge. But after a little research of my own, along with trial and error, we were able to piece together a theory as to why. We believe the Fentanyl had lowered his heart rate some to begin with. And his Keppra and Lasix doses each seemed to drive his heart rate even lower. So, with the Fentanyl in combination with his Keppra and Lasix doses given so closely together (both 3 times a day) his heart rate was pushed to the severely low numbers we were seeing. We have had a chance to experiment with the Fentanyl dose since coming home (partly because of the severely low heart rates) and were able to decrease the continuous dose by 75mcg with only minor changes in his pain level. That's actually a big deal in the life of Wyatt. In the past we've not been successful in decreasing any dosages. He is feeling pain in various areas, but we know we'll never be able to safely control ALL of his pain. So, we must shoot for "good enough".... good enough to be awake. Good enough to interact. Good enough to be distracted and want to play. So, for now I believe we have achieved "good enough."

I'd love to stop my update there and let you revel in all the good. But in an effort to complete a more thorough update on our super hero, I must continue on. Nothing too severe (it's all relative), but enough to dampen my excitement slightly. This last weekend and through the new year celebrations we've been squeezing pus from our boy's infected toe. Warm soaks and gently manipulating the infected fluids from his toe has not been very fun for either of us. After numbing his toe, Dr. R was in all his glory picking and slicing at it yesterday afternoon. This boy's poor left foot has not had any luck recently- he first injured the foot by trying to bear weight on his legs last Wednesday. The x-ray did not signal a clear fracture, but did show how severely osteopenic he is. His muscles are very tight in his ankles and feet. And all the swelling only makes things tighter and harder to move. The edema, fluid retention, swelling, third spacing, whatever the term you want to use...it's an ongoing battle that we can't seem to get under control despite multiple doses of lasix per day.

I haven't talked much about Omegaven recently- we actually just passed our 1 year mark since starting the "fancy fish oil from Germany." You may remember, we started it just days before Christmas of 2011. We were drawing labs from his central line every day and driving them to the hospital for the first weeks, including first thing Christmas morning last year. Omegaven has done amazing things for Wyatt's liver function. When we began the treatment, all of his liver numbers were very high, including his billirubin. His liver was severely affected due to his Mitochondrial disease, the need for IV nutrition and medications he required. Trying Omegaven was our last option and we didn't have much hope that it would help his failing liver. But, surprising everyone, his billirubin began to lower after only days of infusing the lipid replacement. He had a great initial response. Though, recently we've had a small blip and have needed to adjust his Omegaven dose multiple times. Starting, stopping and restarting it due to his triglycerides being too high each week. We've now cut the dose in half three different times. When that didn't help to solve the problem we had to stop it altogether. We're currently on week 3 of not infusing Omegaven (or any lipids) at all. It's unclear why his body is responding in this way now, when it's accepted it well for nearly a year. As an FDA trial drug, there is not much literature to look back on to determine what may be causing this particular issue. And the reports that are there don't match up with what we're seeing with Wyatt. But we'll continue to experiment to find an amount his body will accept. It looks like we may need to infuse Omegaven for a week, then hold it for 4 weeks allowing his trigycerides to drop to a more acceptable range, begin to infuse for a week and repeat the cycle. We just need to find a new balance...his entire body is an extensive and delicate balancing act.

Next week we plan to investigate, via ultrasound, the pain that he's been feeling in his back, around the area of his kidneys.

Well, my friends, I must wrap this up. As I'm typing I'm being ambushed by a boy (and his Dad) sitting in the bed just across the room from me who is firing a koosh foam ball gun as quick as he can. Tonight we have "good enough," it's nothing short of a miracle.


{Thank you to all of you who have wrapped our family in thoughts, prayers and love throughout these last few years. Your support has lifted us through the darkest times and we have felt your love in many ways. We are truly appreciative and feel so blessed to have such a caring network of friends and loved ones. I do try to reply to as many emails and messages as I can, but I apologize if I haven't responded. Please know we do read each and every one. Thank you for being a part of our lives and of our journey.}
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