Friday, June 28, 2013

Just keep going.

Don't look back. Just keep going.

It's time to get back up, dust ourselves off and just keep going. These last few weeks have thrown me off the path. I think I got lost somewhere along the way for a little bit, feeling overwhelmed and weary with all that's been going on recently. But I've had enough of that! If Wyatt can keep going, so can I. And you too. (Yes, you!)

The king of sleep has been very, very sleepy today. Very! But as our friend lay beside him in bed, coloring his poster about Heaven with all the things to look forward to and Jilly at the end of the bed reading poems, we saw movement just outside the window. We carefully peeked out the blinds to see a small hummingbird fluttering about, feeding from Wyatt's hummingbird feeder that is suctioned onto the window pane. It's the first hummingbird we've seen there. We excitedly encouraged Wyatt to open his eyes, but his vision comes and goes these days and today is not strong. So, he didn't catch sight of him/her, but he gave a smile and was happy knowing it was there.

We all made it to the musical last evening. Wyatt "behaved" as much as possible and Maggie did great! I couldn't help but notice she did everything in her power to not look our direction and hold back an excited/nervous smile, even though we were seated in the first row and directly in front of her much of the time. :) But she had so much fun and wished theater camp would last all summer long. 


Thank you all for the prayers, love and support.
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Thursday, June 27, 2013

Thursday.

How is it only Thursday? The days are running together on me, but it feels as if it should certainly be at least Saturday by now.

I'm not sure what our boy is doing or not doing these days. We've been chasing bacteria, oxygen saturations and heart rates like no other. It's unclear which way Wyatt's going to turn...he's had times that he's made us nervous, to say the least. But he's also had times when things settle. He's seemingly teetering between here and there. One minute we're up, the next minute we're down and scrambling.

Maggie has been attending theater camp for the past two weeks and tonight is the musical. While she didn't get the exact part she was auditioning for, she does have a part. She's been working hard and has been having so much fun. She would really like us all to come this evening, Wyatt too, of course. Say a prayer that we can make it happen- oxygen and heart rates and all. It could be an adventure...
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Monday, June 24, 2013

Something to look forward to.

You wanna know how we cope with stress? Projects. Some small, some much bigger. Keeping busy- there is never a lack of things to do around here.

We found, especially within the last 2 years, Wyatt needs to have something to look forward to each day. We all do, but especially him. Whether it's a friend visiting, the girls coming home from school each afternoon, a new piece of furniture or rearranging "his" room (the living room), a day trip or a really BIG trip, a movie, a sip of a drink or a lick of a lollipop, a day with no one visiting after a busy week or Bryan coming home early from work.

Wyatt spends his days in our living room, his bedroom is our living space. He's taken over. A couple months ago we carried him and all his stuff up the stairs to his real bedroom to have a "sleepover" with the girls for a night. That was HARD and I'm certain Bryan didn't remember the steps being that long before! But Wyatt did enjoy spending time in his room again- he forgot all about the glowing stars on his walls and ceiling, the pictures on the walls, his pinewood derby trophies or the posters of get well wishes from his class mates. He loved it and it was really nice to see him in his own space again.

It's been tough to figure out how to give Wyatt a change of scenery this past year. But after cleaning out our two story shed several weeks ago, which is more like a small unfinished house, we had a thought as I helped him drive his wheelchair up the ramp and he sat inside, resting, while we organized. The more we talked the idea through, the more we talked ourselves into it. With a little drywall, flooring and a lot of clorox wipes the first level of our shed has the potential to be a good space. The electricity is already there, with windows that look out to our backyard or the large farm fields behind our property and two large double doors that open to allow him to interact with or watch the girls play in the yard...it may help in getting him out of the living room and house a bit more.

We're calling it his "superhero clubhouse"...fit for our own superhero of a boy.

We decided moving forward with this project quickly was a good idea given his decline. We rallied the troops- thankfully some of the grandparents are generously pitching in to help us. And the girls have been eager to help where they can too. Super Wy is looking forward to his clubhouse and has been asking if it's done...before they had even started. 

Something to look forward to...I sometimes think he lives for these things.

His birthday is coming up and is what initially spurred the thoughts of what we could do for him that he'd enjoy and benefit from. He finds it difficult to play with toys, he very rarely plays video games anymore and has a large collection of movies- which makes traditional birthday present ideas sparse. So, this project will be one b-i-g birthday present...because every boy deserves a clubhouse and every superhero needs a headquarters. Right? 


After the tough week he/we have had, the hammers were heard pounding in our backyard this weekend. Bryan and I are exhausted and feeling rather spent in every way. But Bryan has been outside working so hard to get this room done for Wyatt as soon as possible...he feels it's at least something he can do right now.

Where there's a will, there's a way. I hope.



Thank you for the continued thoughts, prayers and love that has been extended to our family. Wyatt had an ok night. His heart rates are low, but he's sleeping soundly. His o2 sats stayed in a more acceptable range last night, which allowed us all to breath easier for a bit. We met with the hospice attending on Friday and increased his Methadone to help with pain. We're doing what we can to support him and keep him comfortable.
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Sunday, June 23, 2013

Another day.

Well, Wyatt is still with us...Friday he stretched my worry to the limit as his heart rates were sitting l-o-w in the 30's. And last night he stretched us a bit further between the hours of 2:45 and 6am. His oxygen saturations continued to drop low and stay low (again), his heart rates were also dropping with the first round of desats. We maxed out the supplemental O2 again, ran a cocktail of nebulizer treatments, suctioned what we could, repositioned him, etc. After some intensive work he/we managed to bring them up just enough that I thought we could breath a small sigh of relief. So much for that silly thought of mine. The second round started soon after, but at that point he was fighting and trying to breath over his set breath rate. He just couldn't get enough oxygen to bring the numbers up. His O2 sats stayed at 79 and 80 for some time before climbing to 84 where it hung out for bit. Right now he's on 10L of supplemental oxygen, with the vent. His o2 sats are in a good place for the time being and his heart rate is steady. He's wake-able and responsive this morning, which is good.

I was relieved and happy to see the sun rising this morning- it's another day.
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Thursday, June 20, 2013

It's been one year.

This week marked one year since we were brought to a room where Wyatt's medical team waited for us, prepared to deliver the news that no parent ever wants to hear.

We've done all we can. I'm out of tricks. We can make him comfortable.

I remember clearly a lot of what was said. I sat, silent, wanting to just tell them to stop. I knew what they were going to say before I even stepped into the room. Bryan and I walked back into room 8, one of the patient rooms we were frequently given, and I looked at our friends who had been watching over Wyatt while we met with the doctors, and as I began to cry said "We're taking him home." 

We took our son home the next day, away from the hospital which we knew so well.

It's been one year...12 months...365 days...525,600 minutes...31,536,000 seconds.

Some of those seconds, minutes, days and months have been difficult, frightening and painful. But we've also been able to experience the opposite to those emotions too. I like to think of those times much more than the others. But sometimes it's hard to not recognize the tough times, especially right now. While he's greatly struggling at the moment and he's frightened me this week on multiple occasions, his strength and the fight within him is extraordinary. It's undeniable. Last year at this time I never expected to be typing a post such as this the following year. Yet here I am. There are few words that can convey my feelings about it.

It's been one year...12 months...365 days...525,600 minutes...31,536,000 seconds filled with a lot of love.

Anything is possible.


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Wednesday, June 19, 2013

Quick update.

We're still working on things to keep up with our boy. His respiratory needs have settled into a more predictable state...predictable enough we can keep his oxygen saturations in a more acceptable range, at least. We were able to wean him down to as low as 7L of supplemental O2 for periods of time, which gives us the ability to increase it again as he needs. As I'm typing, his temp has come down to 100.2.  For reference, normal for Wyatt is 96.2. Today he seems to be more uncomfortable and because of that he's using A LOT of Fentanyl, which has lowered his HR under 100bpm. We know from experience increasing the amount of Fentanyl in his system has that affect on his heart. The lowered temperature has probably helped in that regard too. The urine culture went to one hospital and the blood cultures went to another. But so far we know from the urine analysis he's showing multiple things in his urine, including yeast. I haven't heard the 24hr read on the blood cultures yet.

Thank you for the good thoughts, support and continued prayers. We're unsure how things will unfold from here. But I will update more soon.
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Tuesday, June 18, 2013

It's up to him.

Last night Wyatt began to struggle greatly to stabilize his respiratory status. We maxed out our supplemental oxygen capabilities of 10L (bled into his vent tubing), ran saline and albuterol nebs and suctioned him hoping to clear whatever junk we could, to what felt like no avail for a significant amount of time. The pulse oximeter continued to blare, alarming us to how low the oxygen saturation was within his blood. It was after a little while and a few more attempts of trying different things that the number began to creep back up to an acceptable range. At that moment, I decided above 85 was acceptable. Through the night his oxygen numbers began to stabilize, as his heart rate began to increase. By 5am his HR was over 150 beats per minute- that's over 100 beats more per minute than his heart typically beats. Wyatt doesn't mount a fever response to infection, so fever is rarely on my radar anymore these days. The working theory is that his body is so immune compromised/impaired that it's unable to react in an appropriate way to infection...like raising its temperature. Lo and behold, Wyatt currently has a significant fever. At the time it was 102-103 (temporal and axilary). Concerning and baffling, to say the least. Extra worrisome because he's had quite significant infections with no fever this last year, so I'm wondering what it took to make his body finally react in such a way. And he's still on antibiotics for the last infection in his central line. Which I realize doesn't mean much when dealing with such vast types of bacteria, but still.

After emailing the docs at 5am and then talking a plan out via phone- the cultures were ordered; Bryan drove the urine to the hospital; our infusion nurse is on his way to draw the blood cultures. While the infusion pharmacy is putting together the new antibiotics that will begin ASAP.

Right now he's wearing the nasal cannula and working hard to breath. But he asked to take off the bipap mask. He's keeping his numbers up for now. But this part is hard- I can see and hear him struggling to breath.

We will continue to treat, support and keep him comfortable to the best of our ability, but as I've been recently reminded, the rest is up to him. It's his call.

Thank you so much to those of you praying us through last night. Keep those good thoughts and prayers coming, please.
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Friday, June 14, 2013

Things that help.

In some of the pictures I've shared you may have taken notice that Wyatt is wearing headphones. I wanted to take a minute today to share a couple of favorite things that Wyatt really enjoys and that help...

Audible books! Wyatt doesn't have the energy to read books and now struggles to hold a book in the right position. But reading has always been a favorite activity for my kids. My Mother had been telling me to try Audible books with him for some time, but it wasn't until we found his favorite series, The Kingdom Keepers, was available that we decided to give it a try. He loves it! At the moment he's in such a state that he hasn't been up to listening to them. But he has really enjoyed these books. We downloaded the Audible books app onto our iPad and we can pull up any of the books in our audible "library" for him at any time. It's great!

The Relax Melodies Premium HD app has been a great tool to help ease Wyatt's anxiety related to falling asleep or calm him when he's feeling pain or is agitated. The music therapist led us to it and I have to say it is quite relaxing. There are so many combinations of different sounds and music that you can choose from, overlapping your favorites and adjusting the volume of each to create what you like the most. You can overlap as many sounds that you want to make your favorite combinations. Wyatt's go to mix is "winds" and "dreams". It's a good one! There are multiple versions of Relax Melodies apps available, but we like the premium HD one the best.

And if he's wearing his headphones but not listening to a book or his relaxing sounds he's often listening to music of some sort- his favorite right now is a collection that the music therapist recorded for him of her singing a few empowering songs, along with a few theme songs (The incredible hulk, Superman and Star Wars) and a catchy song that Miss Juliet and Wyatt created together about scary dreams and monsters that can't hurt him. 
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Friday, June 7, 2013

How is Wyatt?

How is Wyatt? - At the moment that could be the most complex question you could ask me. "I don't know" is a phrase that has been said a lot the last few weeks, by myself and the medical professionals. It's been mostly in regard to what direction to go, what to do for him next, what may or may not work. But I've also used that phrase to answer the question that many have been asking me, "How is Wyatt?" Some days I just don't know. I do realize it's not a good response, but there are days I struggle with the words to explain it further. But thank you for caring and checking in! I do apologize if you've received a vague response from me lately.

This week the music therapist commented she was working 'outside her box' on a project for Wy, which I pointed out was rather fitting to our style. We've never been an 'in the box' kinda family - nothing Wyatt does is ever close to being inside a "box"! How could you possibly contain all this super awesomeness inside a box...?! ;-)

So, how's he really doing...well, we're taking it one day at a time. It feels much like treading water some days, just trying to keep all our heads above the water. We have had a new plan or made changes to an existing plan every day this week. We increased his Methadone doses twice, as well as adjusted his Fentanyl two times since I've last updated. Knowing we're coming down to some of our last options for pain control is a daunting thought. We also added broad spectrum antibiotics this week because the blood cultures did grow something. The king of sleep is still very sleepy. He's been sleeping 22-24hrs a day these days. But since making the most recent changes to his pain medicine he seems more comfortable. And during the brief moments we see him awake I've even seen a smile here and there.

I'm feeling more hopeful this week. Possibly it is a hope fueled by my lingering doubt. But it's hope, none the less. Anything is possible.


And today is the last day of the school year for these two girlies! They were happy as they boarded the school bus this morning. In her excitement for summer break, Jilly said she can't wait to be able to "sleep in" tomorrow morning. Maggie then pointed out it was Saturday and she would have been able to sleep in anyway. My guess is she'll be wide awake by 7am...



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Saturday, June 1, 2013

Certainly uncertain.

Today is the first day this week that hospice is not visiting our home. No offense to our nurses or the team, but I have been looking forward to a day that we don't have medical visitors.

The night after I posted about our boy writing his own story and the uncertainty that lies directly ahead of us, he was sleeping in the recliner, snuggled in amongst 3 heavy blankets and a few stuffed friends that bring him comfort. Oh, and the purple (his favorite color) Mickey night light that he holds when it's dark. He softly called out "Moooommmyyyy." He is weak, so his voice is quiet right now. I walked over to the recliner and stood at the foot rest that was protruding into the room, while asking if he was ok. I could tell he was concentrating. He stretched his plump, swollen little toes out as far as they would go to barely touch my leg and said "Tag. You're it." I smiled, laughing a little and said "You did not just tag me. Did you?!" A very small mischievous smirk grew on his face as he whispered "Yep."

Take that, Mito! ;-)

His oxygen saturation's have been fluctuating at times, dropping low but then bouncing back up to 95 or above. He is requiring 5 liters of oxygen right now- that's with the bipap/vent. But you may have noticed in some of the most recent pics he has been wearing the nasal cannula too. Over a week ago, in what we believe was a hallucination, he had ripped off his mask. He claimed it was "hurting" him and refused to put it back on. This is very unusual for Wyatt and something he's never done in all the years he's been using non-invasive ventilation. He knows he needs that respiratory support, so I'm not sure what he thought was happening. But I was able to convince him to at least wear the cannula after I had calmed him down. Since then he's asked for the cannula more often. We go with what he wants in this regard- if he wants the cannula he can have it. And we try our best to support him by adjusting the oxygen as he needs it, knowing it may come to a point that his O2 saturations are sitting in the 80's and I must pretend it doesn't bother me too much. But if he asks for the bi-pap he can have that too.

His heart rates have been doing much of the same patterns as his oxygen, dropping low to then racing much higher. No rhyme or reason.

His pain- where do I even begin? Adding Methadone in addition to the huge amounts of Fentanyl that he requires is concerning. Worrisome. A little scary, even. But we have no choice as the disease progresses his pain increases. And not treating the pain is not an option (to us). He is still feeling a lot of pain. But I think we've seen very slight improvement since starting the Methadone. He has begun to talk a little. And I can tell, even if his eyes aren't open, that he's listening a little more to what's going on around him. With his eyes closed, he will sometimes respond when we talk to him or ask him questions. When the pain is so bad it really zaps all of his energy too. He withdraws as he's unable to tolerate any outside stimulation. He is sleeping a lot. He will wake for maybe an accumulative 1-3hrs a day. We will get 2 minutes here and maybe 4 or 5 minutes there. Most of the time he wakes to complain of pain and asks me to push his button so he will receive a demand dose of Fentanyl or to give him something else. He tends to wake more easily toward late afternoon and evening hours these days. We can get 20-30minutes while we're changing clothes, doing a dressing change or some other type of care that we must disturb him for.

The infection that started this all looks to be responding to the antibiotics. We did send off new blood cultures yesterday morning. But the UA (urine analysis) looks better. He physically is not better, though. As the nurse opened one of the organized med drawers yesterday, she looked down at all the rows and compartments containing glass vials of IV medicines and said "oh my word, it looks like a pharmacy, doesn't it?" Indeed, it does.

He's been asking for hugs or for us to just sit and hold his hand. He's been confused as to what season it is currently- he has woke up asking "What season is it?" I'm not sure why he's thinking of the seasons, but I've reminded him a few times now and added that summer break is coming up. I can't tell if he seems excited or not that next week is the last week of the school year and the girls will be home all day after that...I think a few weeks ago he was giving them a thumbs down just to pick on them and hear them scoff. (But I can assure you the girls are looking forward to school ending!)


Thank you for all the encouraging and uplifting words, thoughts and your prayers. They are certainly a part of what keeps us all going.
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