Tuesday, June 26, 2018

Staying Strong at Your Weakest

I would have to say this hospital stay, going on day 6, has been by far the hardest. Its been emotionally, physically exhausting. And when you don't think you have enough strength to keep going, you find just a little more and well, somehow keep going. You stay strong for your baby, who is fighting one of the biggest fights of all. You stay strong for your three year old, who when the tears don't go away, keeps giving you kisses to make you happy and feel better. You stay strong for your husband, who is just as weak as you are, but you put your arm around each other and help each other just stay afloat. And you stay strong for your family and friends so you can sit down and let them know whats going on, just trying to get through conversations when inside you are falling apart.

As mentioned in my last post we brought Brecken into the hospital Friday because of respiratory or breathing difficulty. And after much further testing and information we found a little bit more. Brecken has been very very sleepy. He slept for almost four days. Not medically induced but just by himself. We lost the smiles and the eye contact, we lost the interaction. We did our best to keep him comfortable, and kept him on bi pap,to add a little bit more pressure and help breathing. We have given him a few medications that hopefully might help in the short term. 

But what we have found out is that, unfortunately, his Alpers Syndrome is progressing. His liver is not able to function as it should and his brain is not functioning as it should. And there is nothing more medically that we can do. We as a family have had some really hard decisions and really hard discussions with his doctors and team about what we want for Brecken going forward. What is helping Brecken stay comfortable and pain free, and what is not. What is making Brecken happy, and what is making us happy for Brecken.

We wish he knew exactly how much more time we have with this sweet boy, but we don't. We wish we could give him medications or treatments to fix and make things better. Heck we just want a cure. But we don't. And its been in that moment these past few days, we feel helpless. I honestly did not think that I would ever see that sweet smile again. I felt feelings I didn't think I had. And its the worst thing in the world. Simply the worst. Nothing can make it better, no such thing as band-aids.

But then this morning at 7am, Brecken woke up crying. I took him and snuggled him, and he woke up. He opened his eyes and we talked. We counted to five, and I heard that sweet little laugh. I saw that sweet little smile. And I realized, not matter how much time we have left with him, he changed this world and he changed my life. He shows us the power of a smile. He shows us strength. He shows us that no matter the fight, no matter the journey, no matter what, we love and we smile. And I find peace in that. Brecken is doing above and beyond what he has been sent here to do, and he continues to amaze us each and every minute of each and every day.

Our number one goal at his time is...  HOME. We have a lot of loose ends to tie up and a few more decisions and things to consider, but Brecken is coming HOME with us. Just where he needs to be. The future for Brecken is very unknown, but Alpers is taking him away from us. We will do our best to keep him comfortable and happy. We will make sure we give extra snuggles, extra kisses, extra everything. We will take each and every single #BreckenSmile we can get. Come days, weeks, or months we will stay strong for Brecken.

And thank you. Thank you to every one of you for continuing on this journey of mine. This journey is not done, nor will it ever be. But it takes a village. And no matter the hardship, no matter the pain, no matter how strong you can be, I am not alone. I know I have you. And right now I need my village.


Saturday, June 23, 2018

Home is where you make it.

One of our main goals for Brecken is to be home. To be home with mommy and daddy and big brother Easton. We want him comfortable and happy. When something comes up we have a laundry list of phone numbers and contacts in which we can call to get advice from. Most often its something we can figure out on the phone. He also has about 3-4 nurses during the week to lay eyes on him and to help us better figure out treatment plans and keep Brecken safe and happy. But ultimately we all just want to be home with him.

For the last week Brecken has been having to work a little harder at breathing, mostly when awake and has been pretty comfortable at night. He has stridor which is caused most likely from his low muscle tone in his neck. But again this has been kinda normal for him. We have seen some retractions or muscle pulling in his abdomen and chest, and at times to a point you could use it for a bowl of cereal with milk. But not acting like he is in distress or showing a higher heart rate. As well as having a difficult time with coughing. But we have machines for that. He has been very sleepy as well as retaining some fluid especially in that sweet face of his. But his oxygen levels remained high. We were torn. And quite frankly a little perplexed.

On paper it seems obvious to just, "bring him in". But with a medically complicated child like Brecken the decision isn't always straight forward. And we have so many tools that we have been given to help us stay out of the hospital. We have been using his respiratory treatments, nebulizations, vest therapy, and countless hours to help him along. He was even taken care of by a few of his nurses that seemed as perplexed as we were. But yesterday we decided that it just wasn't enough. Brecken was just not Brecken anymore. He needed a little bit more help.

The decision to bring Brecken in gets harder and harder. Of course there is always the safety of my child in the foreground. He needs help, there is no question, bring him in. There is also the countless hours I think, what else can I do to keep him home. Because home is where I want this little boy to be. He doesn't belong in the hospital. And there is always the dilemma of what am I doing at home that they are going to do different in the hospital. What are they going to say when we show up for the 8th time in the last two months with this little boy in our arms.

But the mommy gut said take him in. It was yelling at me. So we did. And here we are. Back in the PICU at Children's. Brecken started having more of a difficult time and it was not getting better. He was admitted to the regular floor, until the pulmonologist saw him and he was very quickly brought down to the PICU for a little bit more closer observation. They have put him on BiPap, or a machine to help give him some pressure to help him be more comfortable breathing. (Its even a giraffe) It has helped for the moment, and he is resting comfortably. We hope this solves some of his difficulty and we will see in the coming days as he rests up a little more. 

We continue to thank each and every one of you as you keep praying, sending good vibes, love, support, hugs, food, cards, and donations. It helps these hospital stays a little bit more manageable. It helps with stressful busy days and long nights working with his team to help him feel better. It helps us try to normalize life with a busy and active three year old, who doesn't understand what is going on, and just wants to be with his mommy and daddy, but needs to stay with grams and pops.
And although hospitalization is inevitable at times, it allows us to enjoy our days at home more. As a family, together staying strong for Brecken. We hope that Brecken can heal quickly and we can get home fast! But for now, home is in the PICU.

#mommingstrong  #breckenstrong  #breckensmile  #weallstaystrongforbrecken  #wannagohome

Saturday, June 9, 2018

We Stay Strong for Brecken

Its crazy to think about how many emotions one can feel in a lifetime, let alone in the matter of minutes. But the emotions I feel stepping back into Room 7 in the PICU. Well it was overwhelming. I almost turned around and asked for a different room. 

Brecken was admitted to children's hospital for the second time in a month. He is having a lot of trouble managing his secretions as well as working a little harder at breathing. With the need for close observation and a little bit more supplemental oxygen, the team decided the PICU was the best place for him. 

I hate seeing my baby struggle. But holy crap this little boy is one hell of a fighter! As you watch him lay in bed taking short shallow breaths, sounding like he is drowning on thick nasty secretions, he is there smiling and laughing with the nurses. He is strong! 

As I type this, I sit in the same place they placed a breathing tube in my baby, the same place they told me that he had POLG, the same place in which I spent weeks and weeks at the bedside of my sweet Brecken, the same place where this all began December 28th. My stomach wont stop churning. It brings back the memories of things I don't want to remember. Things that will be part of our story for the rest of our lives. Things that suck. 

But this room also reminds me of strength. It reminds me of patience. It reminds me of the day I got to hold my baby for the first time in weeks. It reminds me to sit down, take a deep breath, pray. 

This room is exactly the place that we all need to be in right now. Its the place where the nurses and doctors are round the clock working on making Brecken feel better. They all know this boy. Not only because of his extended health history, but because of his smile. That smile that lights up a room. And today and tomorrow while he is here this room is going to be bright. 

Brecken is strong. But we all stay strong for Brecken.