Monday, July 29, 2013

Drug shortages: enough is enough.

Yesterday as I stood in front of our med cabinet carefully pulling up an IV medicine into a large 60cc syringe, just as I do many times each day, it felt as if my heart stopped as I heard our hospice nurse speak those words, "drug shortage", once again. She was standing in our dining room talking on her phone to Wyatt's hospice attending about increasing his dose of Fentanyl again. Those words, "drug shortage", was enough to make me want to scream or cry...I couldn't decide, but the potential was there for both of those reactions from me. "Enough is enough", I thought.

The hospice nurse and physician were talking about a current Fentanyl shortage that she was just alerted to. We've been through multiple drug shortages the last few years, shortages of medications that our son desperately needs. It's scary, plain and simple.

Due to these shortages Wyatt's been going without vitamins and nutrients in his TPN (IV nutrition) off and on throughout the last couple years and I've been known to call around the area in search of pharmacies or hospitals that may have access to IV valium and pain medications when our pharmacies were struggling to obtain enough for him. No one should have to feel more pain, become more sick or even die because of a nation wide drug shortage in our country.

Something needs to change and fast!

In most cases, when a shortage arises we are unable to switch Wyatt to other similar medications due to allergies or the way in which his body reacts to the other available options. Unfortunately, it's not as easy as just stopping one medicine to start another. Sometimes, there is no other option to fall back on.

Our hospice nurse called the infusion pharmacy that supplies Wyatt's IV Fentanyl and talked with the pharmacist yesterday. He counted his stash and gave us the low down of how much we have left, he was hopeful that this could get us through until they receive another shipment. While that information gave us time to breath for a minute, I will be prepared to travel the world in search of IV Fentanyl if I should need to. I'm telling you, it's not the time to mess with this Mom and her son's end of life pain control. 

Then I hopped onto Facebook quickly this morning to see this article from the Washingtonian-
http://www.washingtonian.com/articles/people/hot-celebrity-trend-worsens-drug-shortages-that-threaten-babies/

It really irritated me. It's appalling and frightening that our priorities in this country are so far from where they should be. So many babies, children and adults in this country go without vital nutrients week after week, month after month and, in some cases, even a year or more because of drug shortages. These are individuals that have no other choice but to go without, as IV nutrition is their only option to live. Yet there are celebrities, athletes and business executives who are able to obtain these same nutrients to further enhance their beauty, to give themselves a brief energy boost and/or to ease a hangover from over indulging the night before.

It's true.

America, we need to wake up! You can see there is a problem here, right? Open your eyes, please! 

Hospitals, intensive care units, hospice companies, infusion pharmacies....they are all suffering from multiple drug shortages. Not just essential vitamins and minerals needed for nutrition, but also emergency medicines, antiseizure medicines, diuretics, antiemetics, antibiotics, chemotherapies, opioids...the list is long. Pharmacists across the country are rationing and must decide which patient is in greater need of these drugs. Their small supplies going to the sickest, while the others go without.

It's not right. Not in a country that is viewed as so abundantly rich. Something is very wrong when we have very wealthy celebrities obtaining vital nutrients to beautify themselves or recover from a night of irresponsible drinking, while thousands of individuals who rely on IV nutrition go without, to the point it could be potentially fatal.

For more reading on the topic, this is another article that was written by the Washingtonian in May-
http://www.washingtonian.com/articles/people/children-are-dying/index.php

There was a petition started and circulating on the internet gathering computerized signatures-
https://www.change.org/petitions/senator-tom-harkin-ia-and-representative-fred-upton-mi-compel-fda-to-end-iv-drug-shortages-now

Sign the petition for Wyatt and all the other babies, children and adults living without optimal nutrition, life saving and/or pain relieving medications.

To see the lists of current drug shortages in our country-
http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm
http://www.ashp.org/DrugShortages/Current/


I'm not sure how or when or if the drug shortages will ever cease.
But I do know, first hand, enough is enough.
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Saturday, July 27, 2013

This week.

Have you ever had that feeling that you're sinking? One thing after another almost pushing you further and further down. Sometimes, when it happens quickly, you don't have much time to think. You sink so quickly you hit the bottom swiftly and it hurts. It's shocking and can be very scary. But once you're at the bottom you at least find yourself on solid ground. Perhaps it's broken ground, there are large gaps and cracks. But you stopped moving, stopped sinking.

That's what the end of our week has felt like for me. We're sinking. One thing after another piled against us. Infections in his eyes, another UTI, a cracked central line, pain, breathing, coughing, choking, much talk of Heaven. I'm not sure what the bottom of this sink hole will be like for us. We're not quickly sinking, which I kinda feel is more like ripping off a bandaid. But we're experiencing a slow and overwhelming affect.

Does that make sense? 

Yesterday was too much. I couldn't put all the pieces together myself, which frustrated me and made me want to cry. I was exhausted from spending the entire night before in the ED, which left me worrying about saving his central line. I was mad at people that didn't deserve it. I was sad and a little scared. It was just a bad day all around.

We're still in the midst of making a lot of decisions that this part of life holds...will we do this? Will we not do that? We've made a lot of difficult end of life decisions already in the past couple years, but there are still so many questions to be answered and "I don't know" is my initial response to a lot of them. I haven't given up because Wyatt hasn't given up. He looks forward to Heaven these days and seems to have made peace with the fact that it will happen. But he's still breathing.

His body is not working even as well as it did a week ago. He's working hard to breath on his own. The amount of time he's used the vent this week can be counted on your fingers. It has not been much. I don't know what his CO2 is right now, which probably is for the best. He's determined and knows what he wants. Or doesn't want.

We're starting another antibiotic, Zosyn, today to combat the new infection residing in his bladder. I'm apprehensive about treating these gram negative bugs, knowing he has yeast living in his bladder too. Our boy is colonized with many different types of bacteria and yeast. My concern is once we treat this group of rogue bacteria, the yeast will again take over and we will be right back to where we started. We've been fighting this battle for months now, treating one group of bacteria or yeast to have another attack right away. All the antibiotics and/or antifungals coursing through his system cause their own discomfort, but we have decided that we do want to continue treating infections. An infection in Wyatt's body causes him increased pain, that's actually one way we can tell it's there. More pain is Wyatt's biggest fear of dying. So, treating infection to be certain that we're doing all we can to keep him comfortable makes sense.

We increased his Methadone and Fentanyl multiple times since I last gave you a more in depth update. And we again increased his Methadone yesterday. We've taken on a more aggressive approach to try to gain better control over his pain.

He's been bleeding more this week and his hemoglobin and platelets are sitting a little lower than usual. Which raised more questions of what we will and will not do...will we transfuse blood products? That's a tough one, but probably not. Will we stop his TPN? No. That is not something we will do at this time. Will we fully sedate him? Not unless it is to keep him comfortable. Will we go to the hospital? No, Wyatt has made it clear he does not want to be at the hospital. We will go to the hospital, as we did this week, to repair his central line or for something of that nature. But everything else we will do here, as we have for quite some time now.

One day at a time. It's the only way to move. Though, there are moments it's hard not to become overwhelmed by what lies ahead. And sometimes what lies ahead in that one day alone is too much to process, before ever looking to the next day or what follows.



We thank you for your support, thoughts and prayers.
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Wednesday, July 24, 2013

A movie, peeing in the parking lot and chuck-e-cheese; all in one day.

Today Wyatt lays sleeping, tucked into the pull out bed that is currently taking up nearly our entire living room. Jilly is sprawled across the bottom of the bed, laying on her belly with her chin propped up by her hands and intently watching a cartoon. Maggie is upstairs talking on the telephone with a friend...again. It feels much like a normal summer day in our house. The hospice nurse came this morning, she ordered antibiotic drops for Wyatt's infected eyes and we discussed a few key points.

If you read my post from yesterday, you know it was Wyatt's birthday. The day didn't start off too well. Wyatt was sleepy and really not feeling well. We were hoping we could do something fun, but he made it clear that he wanted to sleep.

We could have left him sleep all day. I think he probably would have. I thought hard about just giving in and letting him lay in his bed. 'He's had enough,' I thought. But then, during a brief moment that he was awake, I asked if there was somewhere he wanted to go. He opened his eyes just barely enough to look at me and said "somewhere fun." We talked of the movies, he's been pointing out the commercials advertising the movie Turbo. Then he suggested "chuck-e-cheese." Ohhhhhh, chuck-e-cheese...not my favorite place to go. But what's a Mom to do. 

I said, "You want to go to chuck-e-cheese?" and he responded, seemingly a little surprised that I even entertained the idea "Yeah."

So, we conjured up a plan, printed out chuck-e-cheese coupons, turned down the alarm volumes on his pulse-ox machine and packed up my boy who has been working extra hard at breathing on his own. His perfusion was awful, his color was less than stellar and his oxygen saturations have been better...but, live to the last breath, right?

Right.

Our first stop was the movie theater to see the 4:10pm showing of Turbo in 3D...because those glasses, even if his eyes are physically unable to see in 3D, make the movie sooooo much better. The price, not so much.


We had the entire theater to ourselves, which we decided was a birthday gift within itself. Jilly stood up and danced during the songs, I took a couple pictures, Wyatt reminded me to silence my phone because the movie screen said to and whispered a nearly inaudible whisper when trying to tell me something through the movie, even though I told him he could talk normally because there was no one else to disturb in the theater. At the end we decided Turbo and Wyatt have a lot in common...they never give up!


After drawing up a couple IV meds and starting to infuse them we drove to chuck-e-cheese, where Wyatt peed in the parking lot.

Yes. Yes, he did.

His foley bag was very full (Thank you, Lasix) and again, what's a Mom to do. We opened the valve on his foley bag and decided we weren't even going to track his output for the day. We're living on the edge. ;) He and Jilly found it funny, while Maggie stated it was "disturbing." Eh, I guess we could have found a bathroom, but we were running on borrowed time...in multiple ways. It was a time to make it work.


I then took a deep breath and we entered chuck-e-cheese. My biggest worry was that many of the games would not be wheelchair friendly and he'd be unable to play. It's a huge disappointment to him when he's limited by his need for the wheelchair. And it often casts a dark shadow over whatever fun we did have. To my surprise, most all of the games were very accessible. Most of their games are set low to allow small children access to the buttons or controls to play, which is what Wyatt needs while in his wheelchair too.


Chuck-e-cheese was a big hit. His favorite part? Riding the roller coaster simulation ride. We transferred him to the seat, buckled him up and let him ride as many times as he wanted. Maggie and Jilly had a great time with their little cup of coins to use as they wish, as well.

As we drove home I asked if they had fun. The girls each responded "Yeah!" and Wyatt began to cry and said "I had so much fun I'm crying!" They seemed to be happy tears he was crying. And he then added, in a somewhat grossed out way that only an 11 year old boy could perfect, "I can't believe I'm crying!"

It was a day to go for it and that's just what we did.

Thank you all for the birthday wishes, love, prayers and support. It's very thoughtful and means a lot to our family. I know there may be times you feel you don't know what to say- I don't either, sometimes. But it means a great deal to know you are there. The comments, emails, texts, Facebook messages and such all help to keep us going and lift our spirits. Thank you!
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Tuesday, July 23, 2013

It's his birthday today.

It's early. I can't sleep. That's not unusual these days. I wake up and can't get back to sleep. I woke this morning with a sick feeling in my stomach. But I'm not actually sick. You would think after all the times we've been prepared for moments like this, watching our son slowly fade, it would somehow make it easier to navigate, more understandable...something. It doesn't work that way in this situation, I guess. But it does make me smile knowing how many times we've been prepared for this and how many times we were all wrong. I love that. I'm not sure I ever had a "plan" for what would happen or how "this" would happen. But I didn't fully expect Wyatt to decide on his own that it was time. I laid next to him holding his hand in the early morning hours this morning, I can hear his oxygen whistling through the nasal cannula, and I just can't fathom not being able to reach out to hold his hand. I've never questioned God "why" in all his 11 years of life until right this minute.

"Why? Make me understand, please. There is a reason, right?"

I suspect Wyatt's CO2 levels are rising as he spends more time on the cannula. He's sleepy and floppy. Last night he did wake a bit. He asked for his bipap for a few hours because he was uncomfortable. He's been back on the cannula for hours now.

Today is his actual birthday. Eleven years ago I was also awake at this time, in the hospital and on very strict bedrest. A few hours from now I was allowed out of my bed to get a real shower for the first time in weeks. I was really looking forward to that shower. It's then, as I was out of my bed to get a shower, that the plans would quickly change for both Wyatt and I. Our lives, both of our lives, changed forever that day, eleven years ago.

This morning as he moaned I whispered happy birthday to my son, he opened his eyes and very slowly turned his head, his voice shaking and weak, he whispered with a hint of surprise in his voice "It's my birthday?"

"It sure is." I replied with a small, but broken smile. It's his birthday today.
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Monday, July 22, 2013

Super Wy turns 11.

Happy Birthday, Super Wy!

You did it, my awesome boy. Another year! We celebrated 11 unbelievably amazing years this weekend. 

The party was great and Wyatt was surrounded by a lot of people who love him very much. Just what he needed! But it was a weekend of mixed emotions for multiple reasons. Saturday night, after his party, Wyatt refused to wear his mask/vent. He talked of what a fun party he had, saying it was "incredible" and "gargantuan," but he hoped to go to sleep and wake up in heaven. He was sure of what he wanted and has only worn his bipap a few hours since Saturday. (He is wearing a nasal cannula that provides oxygen.) We're following his lead and trying our best to keep him comfortable in the process. But it hasn't been easy and has left us feeling conflicted and somewhat confused. I'll update more thoroughly soon. I just wanted to pop in to share pictures of the Birthday weekend.

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Saturday, July 13, 2013

Lots of thoughts.

I'm at a loss as to what to title this entry. There are a lot of thoughts swirling in my head at the moment. It's nothing new or that hasn't been there for the last few weeks, but they are more difficult to put into words these days.

We visited with Dr. R yesterday morning. In our talks of dying, Heaven and reassuring, Wyatt shared that he didn't feel scared of what would happen to him after he dies. But he was afraid of what dying would feel like. We suspected this is where his fear had been stemming from for some time. As his pain would increase his anxiety ran wild and we often struggled to keep both his mind and body at ease. Our conversations were difficult yesterday morning, but we all needed to hear it from him.


I love this boy more than I could ever express. But love alone can't fix him. It won't save him. My son's body is dying. I can just keep going and going and going and try not to focus on the fact. But it's still there. It's undeniable. I see it and can feel it. And my heart is changing. When we came home from the hospital last year I understood what the doctors were saying, but it was hard for me to believe. There was something that didn't quite fit or feel right to me. A year later, I'm now beginning to feel differently. It's difficult for me to say it, but I look forward to the day when Wyatt has no more pain and is free of this body that has robbed him of all the things he wanted to do. We have fought for as long as we could. I remember clearly holding my 2lb baby nearly 11 years ago and whispering to him- I will fight for you as long as you want to fight. I never expected what would lie ahead of us. Eleven years later, my son's fight is still there, but I can feel it changing too. The day he wakes up in heaven may or may not be today, tomorrow, next week, a month from now- we have no way of knowing. But he's showing us that it's coming. His body is growing weaker, his belly more distended and painful and his body is so, so swollen. I struggle to see the resemblance of my boy that was once so full of life.


 It may be hard to understand, but I miss my son terribly already.


Wyatt's apologetic these days, saying "sorry" for things he doesn't ever need to say sorry for. But he says "I can't help it. I just feel sorry." I too feel sorry. I'm so sorry I can't fix his body and make it better for him. We explained to him yesterday that this part is up to him. He has fought so hard for so long, it's ok if he doesn't want to fight any longer. And it's also ok if he does. But something that weighs heavily on my heart is the worry that he keeps fighting for me, for us.


He told me yesterday that he doesn't mind talking about "this stuff" and heaven. I was initially concerned that he would be more anxious, but he's not. He said he can't wait to run as fast as he can again. "And my legs won't hurt" he added. I assured him that he was right, his legs won't hurt.




The superhero clubhouse is coming along and we're preparing for a super party celebrating 11 amazing years. He's looking forward to the clubhouse. He hasn't been out to see it yet, but we have taken pictures to show him the progress.

Thank you for your continued prayers, love and support.
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Tuesday, July 2, 2013

Memories.

Making memories has always been important to us, but especially this last year. I've taken more pictures than you can imagine, not wanting to ever forget. I smile myself and get excited when Wyatt smiles and laughs- I don't ever want to lose that feeling. It sometimes takes a lot of effort, so when we see it it's something special.


I have received plenty of suggestions about caring for my son in different ways- do this, don't do that, why haven't you done this or you should have done that. I suppose it's natural to look from the outside of a situation and have your own opinions about how you would handle things like this. It's pretty easy to do, we've all done it at one time or another, I'm certain. But I can tell you, this part isn't covered in any parenting book, seminar or medical journal that I've ever seen. Maybe I should write a book...though, I question myself often if I'm doing anything right.


But making memories- it's the one thing that's been a staple in our last year. Something that we have all been doing with Wyatt in our own ways. We've been blessed with time and I hope I never overlook that fact.






We've been reading a stack of children's books that I had purchased in the past couple years about death, heaven, grief and such. But Wyatt and I's two favorites have been There's A Party in Heaven and The Invisible String. These books have been read over and over and over again. Two special books that we highly recommend. Wyatt's poster of Heaven that hangs next to his bed was inspired by There's A Party in Heaven...this book has given him hope of things to look forward to. Even down to enjoying the 'sweeter berries' and 'cheesier cheddar' in Heaven. And The Invisible String gives him the comfort of always having a connection to those he loves in a more understandable way. It delivers a poignant message that I believe every child could benefit from.




Tonight Wyatt lay tucked in his bed, his poster clipped to the window and his "invisible string" that was made visible hangs just beside him off the corner of his shelf, to pull as he wishes. The girls' strings each by their beds too. Colorful hand-printed canvases decorate the piano and wish carrying butterflies now hang from his IV pole. As my computer holds the pictures documenting memories.





*A sincere thank you extended to those who helped create these moments, keepsakes and tools to help our family.
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