I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Thursday, April 30, 2015

What the Bear Ate : The True Story of a Hungry Boy

Orson’s new “button” (gastrostomy tube) that would help him supplement his nutrition at night through a continuous 10 hour feed as he slept, was something we have talked about with out CF team and tried to avoid for 2 years. Finally as acceptance of its need came and we made preparations with medical professionals to get the surgery done we did what we could to be prepared.

Two big things that we were not prepared for though was, one – how difficult it would be to watch our three year old come out of anesthesia after surgery and the second was we did not realize how long he would not be able to eat by mouth after this procedure. We knew that he would need to fast from the night before the procedure until sometime after his surgery, we assumed directly after, which would be 2pm the next day. He ate dinner as normal Monday night and then woke up hungry for breakfast Tuesday, the day of the surgery. We made a big production about him “getting the day off from eating breakfast” – enough of a big deal that his brother was pretty jealous that he had to eat. But by 11am that morning Orson was feeling hungry and was going into pre-op and getting very worried about not be able to eat. We mistakenly assumed and told him that he would be able to eat, or at least have popsicles or something after his surgery was over. He accepted that and bravely went into surgery.

He woke up quicker than they let us back to see him after the surgery so we came around the corner to find him sobbing hysterically screaming “ouchy, ouchy, ouchy” and extremely distraught. I held him as comfortably as I could but his stomach has a new hole and a brand new piece of plastic sticking out of it so it was very tender and sore for him. The surgical team did not mean to, but had put his IV in on the hand that he sucks his thumb with so his natural mode of comfort was not easily available and also hurt. It took several doses of pain medicine and nausea meds to get him to calm down and stop dry heaving. He wanted me to sing to him, but I couldn’t finish most of the songs because I was crying too. So I just rubbed his back and cried with him until he fell asleep.

All the meds let him sleep for a couple of hours but his little scratchy voice would ask so sweetly if he could please have a drink or something to eat every so often. We were told 8pm Tuesday night was when he could started to eat again by the surgeon. What ended up being written down though on the orders, whether by miscommunication between the surgeon and with the doctor on call on the floor we were assigned, or whatever else may have happened was that he was not going to be able to eat until at least that next morning, Wednesday. It ended up being a 39 hour fast for him.

At about the 26 hour mark of his fast, on Tuesday night, he started to get really frustrated and anxious, but strangely accepting that he could not eat until breakfast. His little face was just expressions of exasperation, confusion, and sadness that he could not eat. He started repeating his order for breakfast over and over again, having Frank and I repeat it so we would not forget either (bologna sandwich, hot dog, strawberry donut, vanilla donut, and Gatorade).
Suddenly he said, “Mom, MOM, let me feed my bear!” I wasn’t sure what he meant but he directed me to the backpack he had packed for himself the day before with treasures in it and said I would find the bear’s food in there. I knew he had packed his bear but was totally confused about the bear food he was talking about. Sure enough, in his back pack was a tiny red tool box – his “treasure box” that used to be my Dad’s and my brother had given it to my kids a few years back to keep things in. Orson is the most recent kid to keep things in it. I opened the box to find lots of loose coins on the bottom and on top of them was a nice selection of the plastic toy kitchen food from the play kitchen in Orson’s bedroom, including a donut and a hot dog.

With joyful satisfaction he fed his bear the food he had brought for him. It really seemed to calm Orson down to do for his bear what no one would seem do for him. In a few hours his Dad was able to convince him to fall asleep, all of us praying that he would be able to sleep through his hunger. Orson woke up at sunrise. Every person that entered the room he would ask us, “Is that the doctor who says if I can eat breakfast or not?” Through several appreciated distractions and a very diligent and persistent nurse Orson made it to 9:30 that morning when finally the doctor that said he could eat breakfast visited our room and seemed surprised that he hadn’t eaten yet. He pleadingly asked her if he could eat breakfast and she said he could have whatever he wanted. Bitter side note, we did not think the shock in her voice that he hadn’t gotten to eat yet was funny.

We are so proud of him for making it through this 39 hours and are amazed at how he is handling his new button. He is undeniably being helped by his Father in Heaven who loves Orson very much. It is still very new and struggles with it will inevitably come, but all parts of the process of using the button, managing the pain that comes with recovery and getting used to this new part of his life will always be helped by a Heavenly Father who cares, who listens, who is there to help and send comfort. Our family is blessed by this sweet boy, his strength, and his unstoppable happiness.          


Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)