Wednesday, August 28, 2013

The latest.

He's breathing on his own, without respiratory support. Not the vent and mask or the nasal cannula with large amounts of oxygen. Not because Wyatt's body is any better or because his lungs have miraculously began to work. But because he wants to. His face is free of it all.

As I've mentioned on several occasions within the last month, Wyatt looks forward to heaven. And we want that comfort and peace for him too. His body is very sick. Mitochondrial disease has taken so much from him, so much from his has taken nearly everything. He deserves so much more than this body will allow him. 
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Sunday, August 25, 2013

I don't really know what to say.

I sit here knowing I need to write an update. I owe you all an update. But I'm finding it difficult to put this week into words for you.

Wyatt is continuing to fight against his body. Or maybe it is with his body. Either way, our boy continues his fight because he doesn't know how to stop. He doesn't know how because that is all he knows. It is how he has learned to live and keep living. But still he is declining and his body can't keep up with the demand.

No matter how many times we have seen him in the midst of a crisis and/or declining it doesn't really get easier. This part is not any bit easier, it just becomes different.

You know, after dealing with all we have dealt with at home the last couple years, the instincts I have as Wyatt's mother to just pick him up and go to the hospital have not lessened. The instincts I have to help my child, to find him help, are still very much there. I still feel those instincts each time his body is in a crisis or he reaches a new level of decline. I get scared. I panic sometimes. I need reassurance that what I am doing is correct. While I would feel 10x more comfortable in the safety of our hospital's walls, Wyatt wouldn't. He's seen too much, felt too much, lived through too much to feel safe there. What brings me a sense of comfort terrifies him. Perhaps my love is stronger than my instinct. But it's not easy. Not at all. As much as I would like it to be true, I don't always have it all together nor am I as calm as I may seem on the outside sometimes.

Wyatt's oxygen saturations are dropping lower and more often. His heart rate has now come up from the 30's as his body struggles and fights to breathe. He is not able to speak much. He is wearing the nasal cannula and has declined using the vent when asked. He complains of pain intermittently if he is awake, but it's hard to tell how much pain he is feeling. He is coughing and grunting a lot when awake as it is so difficult for him to take in enough air to inflate his lungs. He is much more comfortable when sleeping at this point. We have doubled his valium dose in order to keep him calm. But he's not sedated...he does wake at times and we've been able to interact a small amount with him. Though, it's difficult for him to talk and breathe, so it is limited.

Thank you for being here, or there, traveling this rocky path with us. I would refer to it as a road, but i can't help but feel we are so far off any identifiable feels more like we're in the back woods chopping down trees and beating back branches as we make our own path. But we know we're not alone. In times of panic and fear your words and prayers have calmed my heart. To hear how Wyatt has impacted you or read your words of encouragement for him, for all of leaves me speechless much of the time. The words "Thank you" don't feel like enough. But they are all I have. So, I thank you. Thank you for checking on us, reaching out to us, showing your love, supporting us in prayer and thinking of our family. Thank you for repeatedly praying even when it's difficult to know what exactly to pray for. Thank you for the kind messages and just letting us know you are here. Thank you.
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Thursday, August 22, 2013

Super quick update.

Wyatt is struggling a lot this week. We've watched as his oxygen saturations have dropped and his heart reaching only 30 some beats per minute at times. He's very sleepy. He's very weak. Right now he is on 10L of oxygen. That's the highest amount that our high flow concentrator will put out. At his request, he is wearing the nasal cannula.

He could use some mighty super powered prayers of comfort and peace and whatever else you may want to throw in there. Thank you.

I will update more soon.
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Saturday, August 17, 2013

Running into another week.

That's it. I'm running away! To a small island, in the middle of nowhere, by myself. Where the sun is warm and the sand is soft. The air smells of the ocean. The waves come rushing onto the shore in a rhythmical fashion, creating sounds to calm the most frazzled of minds. Just me. By myself.

I could never....but it sounds sooooooo nice, doesn't it?

Right now the stresses of a week filled with a lot of unanswered questions is weighing heavily on our house. Most of the time I can deal. And this week, from the outside looking in, it probably seems like we've been doing just that. I've been trying to ignore all that was not going "right" this week. But eventually it gets to the point you just can't ignore it sometimes. The overwhelming feeling of feeling overwhelmed. That sums it up.

Those darn emotions.

Wyatt's body has been hit again by yeast. It was a week long process to get a plan ironed out of what we were going to do about it and put into place. You may remember I mentioned my concern a couple weeks ago when we started to treat the gram negative bacteria in his urine again. It was a valid concern. I could see evidence of the yeast before that round of Zosyn was even finished. It's what he does these fight back one or two or three bad bugs to give the others a free pass at multiplying and starting a big bad out of control bacterial party. We're unable to wipe out the large amounts of bacteria and fungus that are present within him. And if we did, we'd only have bigger and badder bugs ready to party with even more limited options to fight them off with. So, instead we need to try to control them. Unfortunately, the boy's body is a bacterial and fungal party house.

Right now I feel like we're chasing our tails. Constantly. And it is not as fun (or funny) as when the dog does it.

Wyatt's cough that comes from deep within his lungs has returned. We've been suctioning as he needs, but the "junk" comes from deeper than I can get to some of the time. His nose started bleeding Wednesday and doesn't look to have fully stopped yet. He has a small amount of scattered petechia across his face from the force of the cough. His G/J tube stoma is also oozing blood. Wyatt begins to bleed when he has an infection and his body just can't get it together enough to clot. It's one of his "signs" that we've learned often means we're walking a fine line. It stresses me out as I've seen this kid go quickly from small nose bleed to much more than just a small nose bleed. He's been sleeping a lot, but has been waking up for short moments here and there. There are a few other things he's been doing that I can't quite figure out. I'm not sure what to make of it yet and am trying to sort it out before questioning the doctor again. It's known that Wyatt has broken too many rules in those medical books for the doc to know what exactly is going on in this boy's body anymore. Most of the time it's a hypothetical answer or a best guess or a theory...which we've learned to accept.

Tomorrow starts another week. That's good because another day was just not going to cut it. We need an entirely new week!

Thank you so much for the continued thoughts, prayers, love and support! Please know we appreciate it so much and send much love in return.
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Monday, August 12, 2013

Whether it's 20 feet or 2,000 miles.

Yesterday afternoon, as we carried out the steps in preparing to take our family to the Drive in movie theater that evening, I thought it might be interesting to share a rough timeline of what it takes for us to leave the house with Wyatt. It's not always pretty! Though, some days we can make it happen pretty quickly if we need to. ("quickly" is a relative term, of course.) Other days it can take hours to accomplish. There are a lot of factors that can hasten or hinder the process.

And it is certainly a process.

Whether we're only moving 20 feet or going 2,000 miles its all got to happen. The following is sometimes interchangeable depending on the situation. If he's sleeping we will do everything we can to prepare before needing to disrupt the king of sleep. Though, if he is really deep asleep there are times he will sleep right through changing clothes and the transfer too. But in a general sense, this is the step by step process to get our boy on the move:

1) 8-10 hours before the time we are to leave (if it's not an emergency) we make sure his wheelchair, ventilator and suction machine batteries are all charged or plugged in to be charged. The pulse-ox stays plugged in when we are in the house, so the battery is always ready to go. And double check to make sure we have enough liquid oxygen and full E size o2 tanks.

2) Tell Wyatt that we have plans and where we are going. Note: the happy must be turned up real loud to combat the grumpy sounds that he may put out initially. :) This sounds so much easier than it really is some days. (We don't always tell him we're going away ahead of time, depending on what the outing is and how he's feeling. Sometimes he becomes anxious and will obsess about it. And sometimes we do it to avoid any disappointment if he's really looking forward to it and we can not go for some reason.)

3) Flush an ending infusion of medicine, pull up another med that he needs and begin infusing. There is always something to be flushed and started. 

4) Wash his face, suction if he needs it, talk about what he's going to wear (sometimes he cares). Maneuver his body to get him changed and dressed. Being sure to encourage him to help by pushing his arms or legs into his clothes, if he's up for it.

5) Carefully remove the multiple hanging IV bags and pumps from the IV pole and load them all into his backpack.
6) Continue trying to talk him into how much fun we're going to have or reassuring him it's going to be ok. This may be an ongoing task...
7) Untangle all the IV lines that we just twisted up into a big knot by loading them in the backpack. I can't handle when the IV lines get tangled!

8) Drain his foley bag of urine and chart the amount.

9) Warn Wyatt of the loud noise that he will hear and fill one liquid oxygen companion (companions are like "tanks" for liquid oxygen.)

10) Carry one, two or three, depending on where we are going, E size oxygen tanks up from the basement to put in the van. With the regulator and appropriate tubing.

11) Flush the ending med, pull up the next one that he needs and begin infusing.

12) Figure out what meds he will need for the amount of time we will be gone from the house. Pack his med bag with the vials of medicines, saline flushes, various sizes of needles and syringes that will be needed, alcohol wipes, batteries, saline bags, TPN and supplies if we will need to change it when we are out, along with other care supplies.

13) Put the suction machine in its travel bag to go to the van. While I'm at it, change the canister, tubing and such if needed. 

14) Remind Wyatt of all the times that he didn't want to go somewhere but he ended up having a lot of fun or that it turned out ok. (His memory is not good, so lots of reminders are helpful sometimes!)

15) Maneuver his wheelchair from the back of the house to the front. (This too can be a lot trickier than it sounds...some of you have seen us drive this thing in tight spaces!)

16) Flip the arm rest up on the side of his wheelchair...after I spend some time trying to figure out how to do it because I always forget which little lever I need to flip. 

17) Fill the second liquid oxygen companion. (You can't fill them both at the same time. No, not because I forget while running around trying not to forget anything. You really can't.)

18) Lower his bed the whole way down as close to the floor as possible, as well as the foot and head of the bed- making it flat.

19) Pull Wyatt up to a sitting position, sliding and gently pulling his legs over the side of the bed.

20) Recite the benefits of fresh air for a kid. ;) 

21) While steadying him in a sitting position, stare at the numerous IV lines extending from his double lumen central line, the foley and its bag, both G and J drain tubes and attached bags, pulse ox cord and his oxygen tubing while trying to make a plan to lift him without pulling anything out of his body or the pulse ox off his toe. (I confess, it happens more than I'd like to admit, that I pull the cannula out of his nose or pull his poor toe nearly off his foot as the pulse ox cord gets caught on something. But those two possibilities may be the safest of all the other things that could happen. So, I'd say we're doing good!) 

22) Put the foley bag's little hanger in the pocket of my jeans and attach his G and J tube drains to a belt loop in the same area. So, when I lift him they will be attached to me and won't fall. Throw the backpack containing all the IV pumps and bags over a shoulder or sit it somewhere close enough it won't pull as we transfer him. 

23) I can only lift him one way now due to his size, so I hug him around his chest, under his arms and lock my hands behind him as tightly as I can. Bryan is able to lift him in a cradle hold.

24) He tells me (or Bryan, depending on who is transferring him) I'm going to pull his catheter, IV lines and/or drain bags. 

25) I reassure him that I have all the bags and they won't pull.

26) He tells me that they are already pulling.
27) I tell him they aren't pulling because we haven't even moved yet and there is a lot of slack.

28) He says, "but I think they feel like they might be pulling."

29) I tell him ok, but I'll check everything when I get him into his chair.

It's as if we have a script.

30) If he's able to, I ask him to try to hold around my neck (he's unable to move his arms that much or hold on well, but he always tries his best!)

31) I begin to count: 1. 2. and 3. Lifting him as strongly as I can while turning and taking a few steps to plop him in his chair.

32) Placing him in his chair is not always perfect. So, we lift him again to get him in the right spot.

33) I point out to him that "We did it!",  thank him for helping me and we both sigh with a small amount of relief.

34) We readjust his shirt and pants, reattach the pulse ox and/or reposition the cannula...sometimes all of the above. 

35) Find the buckles and seat belt attached to his wheelchair. He sometimes will try buckling the seat belt while I attach the harness.

36) If he was grumbling about going somewhere, it's at about this point that he begins to look forward to what we're doing, if it's something he will enjoy. Sometimes we just have to get him up and out of his bed! If it's not a place that he will enjoy (like the hospital, shopping, etc.) then our little dance of complaints and convincing will continue for a bit. 

37) Once Wyatt is in place, it's time to load the chair with everything else. First the Trilogy and the IV backpack across the back, position the vent tubing and his mask on top and securing them, then the pulse-ox machine clipped on the side, the syringe pump clipped on its hanger, his foley and g/j drain bags positioned in their designated spots and the one o2 companion hanging on the other side. I carry his med bag and we must also carry the other o2 companion.

38) Give him a choice of hats to wear and place the one he picks on his head. Make sure he has his glasses on if he's awake.

39) Turn off the high flow oxygen concentrator, start the portable oxygen running and then marvel at how quiet the house is when the concentrator is turned off. It is really loud!

40) Maneuver his wheelchair out to the back of our house, through multiple doorways, out to the deck and down the ramp that extends along the side of our home. A bit of an obstacle course in itself.

41) We load him in the van, attach all the tie downs to his chair and buckle his seat belt. The girls get in their seats and buckle up behind him.

 42) It's likely we forgot the E tanks and the suction machine in the house. So, Bryan or I go back in to get them.

43) We hook up his oxygen tubing to an E tank for the drive. Saving the liquid o2 companions for when he's moving in his wheelchair. On the high liter flow that he needs the E tanks don't last...we'd need to pull a wagon full of tanks with him to go anywhere! But in the car they work and it saves the liquid o2 for when he's moving, which gives us more time out.

44) It's then that I will look around and realize that, in the rush of things, Maggie forgot to do her hair or Jilly's face is a mess or I didn't even get to look in the mirror before walking out of the house. So, I dig deep into my bag to retrieve the wipes or a comb or lip gloss, at the least, to get us all looking somewhat presentable.

45) Then I will notice the flashing red light on his IV pump. A med that had been infusing needs flushed and another med started. So, we either begin another infusion or if we're running way, way late we make the decision to wait until we get there if it's not too long of a drive.

46) Finally, we are able to pull away from the front of our house, asking each other one more time "Do we have everything?" I hate to even admit it, but after all that there have still been times that we circle the block to come back to our house to pick up something that we did indeed forget.

So, there you have it...that's almost everything that goes into getting all the DeStephanos out of the house for a short time. It may not be glamorous, but we do it. Somedays we're exhausted before we even start and it feels as if we have a mountain to climb before getting anywhere, but we can't let that stop us from living. It's all worth it. He's worth it! 
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Tuesday, August 6, 2013

This is not normal, people.

Weeks ago we prepared for the worst. Again. This is not normal, people. To prepare for your child to die over and over and over again.

Wyatt lays across the room from me now, sleeping in his bed. I've typed sentences similar to that so many times on this blog within the last couple years. At this very moment he is wearing his mask and assisted by the vent. His oxygen saturations have been pretty stable with and without the vent this last week. His heart rate not quite as calm and steady, but nothing we haven't seen before. We have not adjusted his oxygen at all. Any change has the potential to cause his body to rebel and I'd rather not disrupt what balance he has found, at the moment.

We're caught in a cycle these last weeks. Wyatt will request to wear the cannula and refuse the vent for 3 to 4 days, until his body tires enough that it becomes too hard to breath. At that time he's unable to settle or sleep comfortably because he's working so hard to continue breathing. His breaths become louder and he begins to breath faster. He becomes irritable, grouchy, unable to speak loud enough for us to hear and unable to articulate his words to be understandable. He will try to move about the bed in an effort to get comfortable to only be more uncomfortable. He then will finally ask for the vent...we put the mask on his face, turn the machine on and it instantly starts taking breaths for him. He will fall asleep comfortably within a few minutes of relying on the vent and sleep for several hours. When he wakes he will ask for the nasal cannula and that's where the cycle begins again.

As he breathes on his own with the nasal cannula his pain increases due to the extra demand placed on his body, weak muscles that are now working overtime and disrupting the balance of everything.

Our emotions are caught in this cycle too. While we have been a little surprised that things didn't happen yet like we thought they might...I guess I shouldn't really be. It is how we've been living, from one extreme to the other. I also won't say he's proving us wrong entirely, his body is not well and he's hanging on by threads.

But he's still hanging on by threads! 

He never ceases to amaze me...from the very moment I realized he was coming into this world. This has been our 11 years, my friends. One surprise, one hurdle, one hill, one mountain after another. And he conquers them each with a strength that surpasses our understanding. This kid rocks at life.

The uncertainty gets to me from time to time...there is no rule book or predictable way in which things will happen. I don't know what I want for him as my head and my heart are conflicted. I don't want him to suffer. And I'm afraid he is or will. I want him to know and decide when the time is right. In his almost 11 year old mind, after his birthday party, he fully expected to wear the cannula to sleep and wake up in heaven. It's what he wanted that evening. When we all have talked with him about dying phrases like "it's ok if you want to go," "it's ok to let go," or "it's ok if you want to stop fighting" are often used. He's heard these things a lot. After he woke up, still here, in our living room and still alive, he was confused. "How do I let go? How do I stop fighting?", he asked. I don't know the answer to those questions exactly. I assure him that God knows the plan and when just the right time will be. But until then we continue doing what we do. We can have fun, we can smile, we can laugh, we can be grumpy, we can cry if we need to. But He will let us know when it's the right time. Wyatt's plan, my plan and God's plan rarely seem to line up. Or so it feels.

Trusting like this is really hard.

As his central line burst and I talked out a plan to take him to the emergency department with Dr. R, Wyatt was upset that he had to go to the hospital. He prayed that God would take him to heaven right then, as we loaded him into his wheelchair, as we fastened his wheelchair in the van and as we drove to the hospital. I promised him we would not stay. I promised him that Dr. R would not let the other doctors keep him there. Or let them do anything to him that would hurt him. I promised him I would call Dr. R myself if we needed him to intervene. I made a lot of promises that night! But we had no other choice...we need IV access to give him the medicines to keep him comfortable. On our way to the hospital Wyatt repeatedly told me to call Dr. R. He was tired, confused, a little scared and angry. I was to tell the doctor that he trusts the most that he'd rather go to Heaven than go to the hospital. I did email him and told him what Wyatt wanted. But we also know that Wyatt's biggest fear is more pain and if we are to keep him most comfortable we need that central line to be fully functioning.

I'm not sure what the right thing to do is a lot of the time anymore. We continue to do our best to keep him comfortable and carry out his wants that he's able to verbalize to us. We're doing the best we can and that's all we can do. Maybe that's enough, but it doesn't always feel like it. We're caught in a cycle.

Make no mistake, I'm incredibly grateful that my son is still laying across the room from me sleeping, yet again. I thank God every day, every afternoon and every evening. It's like the bonus features of a movie- you thought the movie was over, but there was still something to see. And sometimes you get lucky and they add even more than one set. Kinda like that...maybe, but not really at all. :)

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Sunday, August 4, 2013

Maybe we start by sharing our experience.

Yesterday we made no plans and I didn't clean or catch up on all the things we typically do on the weekend, instead we just spent time together. We watched a little TV and Wyatt wanted to watch (or listen) as the rest of us played Mario Brothers on the Wii. He laughed when I would scream each time my character fell into a hole and lost a life (this game is stressful!). Or when Bryan would have his character pick up my character to carry it around the game as I would order him to put me down repeatedly. Or when Jilly just aimlessly floated around in a bubble because she didn't want her character to lose a life, and she would get upset when we popped her bubble by accident. It was nice to just act silly and play, but I really missed having an amped up boy playing with us. He used to love when we would all play this game together.

Medically, not a lot has changed since I updated. He's still breathing. He has surprised us in that regard, to be honest. It's his body, his terms! His body, though visibly tired from the increased work load that breathing on his own causes, has found some kind of balance for the moment. He may have a hard time speaking and his body moves as if it's underwater, but he's coherent. That's something else he likes to surprise people with. Just when you think everything has caught up to him he somehow will pull out a witty or surprising comment. Or begin playing a game of tag. Or we see him smile when he hears something funny on TV or in conversation. He's always listening. Super sonic hearing seems to be one of his powers. That, and super selective hearing. He's always thinking. Perhaps, when in doubt, SuperWy combats his frenemies with the 958th game of tag in a day. :) He's still in there.

We increased his Fentanyl and Methadone doses again this last week. The risk associated with increasing these meds leave us holding our breath a bit initially. I could feel myself hesitate a little when approving the changes these last few times. But even though it's hard for me, it's necessary to keep him as comfortable as we can. 

I did the math the other night and converted his Fentanyl doses (continuous infusion and button pushes) from milliliters (ml's) to micrograms (mcg's), adding up how many mcg's he receives per day. It was stunning. I should know better than to do these things to myself.

But, extreme doses or not, we will continue to keep moving forward, following his lead and, though it's not always easy, doing our best to keep him comfortable. 


Thank you, friends, for sharing my blog post about drug shortages. While it may not be in the same way as our family experiences, these shortages do have the potential to affect anyone anywhere in the country that receives or needs medical care...your own children, spouses, parents, siblings, families, friends or loved ones. 

I'm sure my little blog post will not change the world's view, or stop the hottest new trend in its tracks. But maybe it could reach someone to make them think twice, or even decide against, getting that IV cocktail for a quick energy boost, or to ever so slightly enhance their beauty for a photo shoot, or to ease a hangover the next morning. And in turn, possibly a patient in actual need of those nutrients will receive them a little sooner.  

In an ideal world that's how it would work, right? 

I may not happen just like that. But I would like to hope that most who use this trend for the purposes of energy, beauty and/or a cure for a night of partying aren't even aware of the shortages. Or that they could be using what little supply is available in the country when individuals that truly need it to nourish their bodies are going without. It's a hard truth. But one that needs to be faced. 

Something does need to change, and maybe it starts by sharing our experience. That's something we can do. Feel free to continue sharing our family's experience by linking to the blog post and spreading the word.
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