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