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.

Wednesday, December 20, 2017

Horrific Invisible Rollercoaster





The thought that brought Orson the most trepidation going into his surgery last week was vomiting blood up after it was over like his sister told him she did after her surgery last year. Well it happened. More blood vomit. It’s absolutely expected after this sort of surgery but its nonetheless traumatic and scary for the puker and full of surprises for those taking care of the puker.


After his three hour fifteen minute procedure the ENT/surgeon came out to talk with us and said he was shocked at how many polyps Orson had. He said he had difficulty finding any passage at all and was shocked if Orson was breathing through his nose at all before this. But he assures us all the impacted (clear back to the back on both sides and up and down) sinus were cleaned out, along with tonsils and adenoids removed. Thanks Doc good work!


So then we go back to Orson who is balancing between sleep and awake in post op. He’d already thrown up blood the first time before we got to him and is looking miserable. When Orson pukes he thrashes violently around the general area he is in and yells. It’s like he is riding a terrible horrifying invisible rollercoaster and he can’t get off. But add to that roller coaster blood vomit. First thing the sweet post op nurse says to me is “careful mom he’s making real sudden movements.” She doesn’t know about his vomit coaster, but his Dad and I do. So next time he thrashed up out of the bed Frank Daddy grabbed his shoulders to hold him steady and I had the vomit bag (the nurses quickly upgraded him to a vomit bucket) to catch Orson’s worst fear in its expandable blue plastic sleeve, blood vomit.


The other sweet thin and petite post op nurse was like, “mom feel free to get right into the bed with your son its OK we will let you.” And I’m thinking “lady I’m 5 foot 10 and I’m all about that bass no treble so I don’t think crawling into the hospital bed with my son who’s attached to an IV and is vomiting blood is my best choice. I really really sincerely appreciate your idea but I’ll opt for leaning in and stroking his head as opposed to smashing him and getting blood vomit more directly on myself than I’ve already gotten.”
He would beg for water, drink a bit, then vomit blood. Common post op protocol. They gave him a bit of morphine which knocked him out well enough to take the edge off and get him upstairs to his overnight bed. Frank helped the nurse wheel his bed upstairs as opposed to waiting for transportation to come. Just as Frank left to go get Orson’s bag out of the car he blood vomited again only this time I was the only one there. So I’m attempting to hold him steady and also chase him with the vomit bucket. The results were not pretty. A kindly tech then changed the sheets with scary looking red bombs dropped in various places while I held Orson in my lap in a char. Then his nurse came in and asked, “so is this blood or vomit,” “both” I said as she changed the arm board and IV dressing that also was a victim of the vomit roller coaster.


Tonsils, adenoids, sinus surgery, and bronchoscopy’s done simultaneously are definitely in the more common procedures for kids/adults but it sure threw our little underweight CF boy’s body and mind for a loop. We’ve felt extremely grateful for his g-tube it has taken a tremendous amount of worry and stress out of taking care of him post op. We can do all meds through it. I even had a sweet friend back east make a video for me to show me how she administers enzymes through her daughters g-tube. While I didn’t master the task as well as her 5 years of experience has, I did manage to administer them as many times as it took for Orson to hate it and be motivated enough to start swallowing at least enzymes again. Five days later his ears are killing him, he’s got dark purple/red circles under his eyes, and most of his calories (like 95%) are administered through the g-tube because his pain is too bothersome to eat BUT he is already noticing his ability to breath clearer and we look forward to complete recovery when he can smell, breath, and hopefully have more desire to eat like the hungry hungry beast he needs to be.
Good job Frank Daddy for spending the night in the hospital and having your own solo blood vomit experiences throughout the night. Good job Orson for facing your fears and being a champion all star for all the crappy stuff you have to do. You remain to be The King of Brave. Good job my Mom (our Bebe Girl) for taking care of everything else so we could be at the hospital. You are one of our Angels. Good job amazing staff at the best hospital ever we appreciate all the kindness and care. We are one of those families that are too blessed to be stressed and its all because of our faith in a Heavenly Father who has a plan for each of us and helps us all along the way.

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