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, September 20, 2017

When Your Body Needs More Food Than Your Mouth Can Give It


                When we went to the ENT last week to get Orson’s nasal polyps checked out the scale said he was under weight three pounds since our last hospital scale weigh in. From then on 20 percent of me was listening to the ENT talking about using a combination of meds in attempt to shrink the polyps and put off surgery for a while and the other 80 percent of me was going in to red alert panic mode at the weight loss. My sleep was minimal that night as I wondered what I could do more to help my buddy catch back up to where he was and move ahead. Sleep would not come, until finally the right idea rolled to the front of my brain. Stop fighting this g-tube. Stop pretending he only needs night feeds. Stop avoiding the reality of this situation.

                That night I made a solid decision to get Orson to do some g-tube calories every morning. It was going to be a big emotional daily morning battle. And believe me another daily morning medicine battle is the last thing we need around this house. We tried to do it when he first got his button in 2015 but he really hated watching us do it. He cringed to see that syringe being flushed into his stomach and it put him into hysterics every time. He was doing so well at his night time sleeping feeds that I decided I would stop trying to push the feeds during the day. But now that I see him dropping back down I just kept thinking that I HAD to make this happen. I repeatedly flashed back to that AWFUL HPV vaccine commercial that is on so much right now. You know the one with the little boy shown in a backwards timeline from cancer to before cancer ending with him saying, “you didn’t know about this vaccine right Mom? Did you? Did you.” Like ANY mother or father who could have prevented their kid from getting cancer wouldn’t have tried. What a horrible marketing campaign and scare tactic. Anyway I kept picturing Orson as a spindly teenager and then as a grown man asking me, “Mom why didn’t you try harder. I literally had a straw that led straight to my stomach. Didn’t you know that calories would help me get bigger? Did you Mom? Did you?”

                So the next morning I poured one half of a cup of half and half out and syringed it up. The biggest syringes we have are 60 cc syringes which is 2 ounces or ¼ of a cup. I laid those two syringes out in front of Orson as he was sitting for the 30th minute in front of the tiny little breakfast he had been struggling to eat (I think it was one boiled egg that day) and said, “Were doing this buddy. We have to. Your body needs more food that your mouth can give it.” The panic began. The hysterics commenced. The cries of “please stop Mom I’m going to barf, oh mom my stomach hurts” were heard. We got through about three ounces of half and half that morning. He stood up hunched over and moaning. He said how much it hurt and that he wouldn’t be able to play on the playground for morning recess.  

                I was so worried about him. I hated it. I hated to make him so upset before school. He forgot his backpack and eye glasses. It was a rough morning. I called the school nurse and told her what was going on and what I was going to start and asked her to please keep her eye on him when he came in to see her before lunch for enzymes.

                As the mornings went on of me trying to get Orson to let me use his button (g-tube) for a breakfast calorie boost the magical combination of Charles helping Orson instead of me happened one especially busy morning. That quickly evolved to Orson doing it himself. Today Orson syringed the full 8 ounces of Pediasure 1.5 cal per mL himself. This gave him 350 calories and 14 grams of protein. Potentially the most calorie rich breakfast he’s ever eaten in his life. I also had gotten those adorable 2 ounce probiotic shots at Costco for him and he sent one of those into his stomach too. Now here is a boy who a week before was in the depths of despair over 3 ounces of fluid being put through his button who now just sent a little under 12 (he did some miralax Gatorade too) ounces through all with his own two hands. He stood up and immediately started running around the house. I watched him run laps and be crazy on his playground at school before the bell rang. My heart was singing. It was another incredible miracle I was able to watch with my kids and their health challenges. The impossible again became possible and will soon slip into normal because of faith, effort, prayer, and the power of a loving Father in Heaven.
I tell you what marketing campaign I am a fan of, and its this
giraffe. Orson thinks he's hilarious.

Orson appreciated I showed him how much 8 ounces was
to him in a relatable way. He helps make cookies and this one cup measurer helped him see 8 ounces less
scary that 4 syringes.

4 syringes 2 ounces a piece may as well have been 5 gallons. It was very overwhelming for him to see it this way.

Here is my happy kids playing on the before school playground! Hooray for that big smile
and not a hunched over in pain 5 year old.
Posted by at
Labels:

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)