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.

Sunday, May 14, 2017

The Hell Raiser and the Butt Kisser A Memoir of a Medical Mother




The IV team had unknowingly IV'ed and taped his thumb sucking hand.

We were enraged and helpless caught up in the moments after the surgery of a g-tube placement of our son. What we were told by the surgeon in regards to when he could eat after the surgery (even popsicles or drinking ice water) had not been what she had then relayed to the nurses taking care of our son post op.


See don't I look like a nice sweet butt kissing
mother? But don't forget I have a pair of hell
raising pants and I'm not afraid to put them on.
He became desperate for something to drink. He was hungry and already sore and hurting from his new “site.” He was already experiencing so much trauma with the tubes, beeping machines, an IV in the hand he sucked his thumb with so it was all boarded up and taped to the nines. We just wanted to provide the relief that we could but we were trapped in uncharted post op instructions. The fact that the surgeon had told us one thing and then either that thing was a lie, or she had just neglected to relay the message was infuriating. We begged every nurse and doctor that came into the room to ask the surgeon, double check, please we know what she told us! But to no avail. Everyone was too afraid to bother the high and mighty surgeon for such a question. They each assured us that he wasn’t dehydrated because he was hooked to an IV. This gave little relief to his dry mouth, cracked lips, and cravings that come with not eating or drinking for 30 hours. All we could do was cry with him and not eat ourselves as the tiny little boy wrapped up in tubes and hospital blankets begged to eat and we had to say no. Until nurse H came on shift.
The whole family after the surgery (baby Ruby in my stomach
yet to be born and hiding behind her older sister in this picture).

Nurse H came in bright and early the next morning and we immediately informed her of our sons plight. She immediately informed us “don’t worry I’m the kind of nurse who isn’t afraid to ask questions, I get myself into trouble quite a bit for this very thing.” She tracked down the surgeon called her, paged her, finally getting a response. Yes of course he can eat, I told you he could last night at 8, the surgeon said.

To quote Mrs. White from Clue, “flames, flames on the side of my face.” The anger! The infuriating nonsense that had happened should never had happened. My son hurting already from his new stomach hole and crying himself to sleep from hunger and thirst pains on top of it should never had happened, there was no reason for it besides a negligent surgeon who had created such a fear inducing reputation for herself to stop nurses from asking follow up questions.

Then. Then was the moment that I knew I would need to be a bit of a hell raiser like my favorite Nurse H to prevent this sort of bologna from happening to my kids again. Side note this happened at a different hospital than the one we currently attend and we will as long as we can prevent it, never go back to the other one again.

The spell that was on me of being afraid to question charts and follow protocol was broken. I would no longer bend to the will of the chart. I would get my son a cup of ice water and soup and bread dang it! Get out of my way I’m going to the cafeteria, my son is hungry and I’m feeding him. I’m not waiting for room service. Watch out. Clear the elevator you’re not going to want to ride with the crazy mumbling mother, it will be uncomfortable.  

On the other hand I continue to try with all of my heart to be as grateful and kind to the medical staff that work with my children in the hospital. Or in other words I try my darndest to be a talented butt kisser. I think it is BEYOND important to start out doing everything I can as civilly and kind as possible with extra sugar, thank you, and a cherry on top for all your efforts sir and mam’ that work with my kids and their CF, but please don’t mess around we take their comfort and care very seriously.
I'll tell you what I'm a natural rule follower. Being obedient is OK with me, but situations like this and other enlightening experiences along our medical road have helped me to see that its important to be a butt kisser that raises a little hell when the occasion calls for it.

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