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, March 29, 2015

“Peace Be Still” When I Needed It : The Male Nurse

 
One of our family’s favorite hymns is “Master The Tempest is Raging.” I am not a singer AT ALL, but this one is just fun to sing. It takes you from the terror and misery of being in a storm in the middle of the ocean to the instant calm and sweet “peace be still,” that the Savior brings.
Singing this hymn is a beautiful way to remember the end result of a common pattern in life, at least my own life. An unexpected (or even anticipated) trial comes and I totally freak out, then hopefully (sooner than later) I can remember to ask the Savior and Father in Heaven for help and somehow I get the “peace be still” that I need to shoulder the trial until again I break, freak out again, and the cycle starts over.  
It is impossible to tell how Heavenly Father will provide our “peace be still,” but I have seen in my life that when I sincerely ask for help from Father in Heaven I will get it, somehow, and usually in a way I could never have guessed.
My 7 month old baby was in the hospital and I was 100% certain that it was my fault. For a week I had desperately tried to get him to eat but he wasn’t interested. I even stopped nursing and started pumping so that I could measure exactly how much he was eating but to no avail. It quickly snowballed and in the time of 16 hours we had seen our PCP, our CF team, triaged at the ER, and now were being wheeled into our own room of the PICU at 9pm.
Frank had gone home to take care of the other kids and the unintentional hurtful question had just been asked to me by the girl running the babies IV, “how could you let this happen,” and there I was there sitting in a little row boat alone in the middle of the ocean with the “tempest raging” around me of guilt and despair.
I sat there thinking about how I couldn’t get my baby to eat and look at what I did, ended him up in this hospital bed, away from his soft crib and family to get stuck with needles and pumped with medicine. Orson was being still and the IV was in so I just sat there with the things I had thrown together in the hour before we left for the ER and stared into space. I was hungry, I hadn’t eaten dinner, I was worried about the next time I was going to pump because I knew that the nurse would be coming in and out frequently - and for the first time in my stay in any hospital it was a male nurse - and I am admittedly a prude.
Soon the male nurse, whose name I really wish I could remember, came into the room. He attended to the machines and the baby then looked over at me. He asked if I had eaten anything then offered to get me a sack lunch from the cafeteria because it was closed and I wouldn’t be able to get anything myself. Then the next thing he did was notice that I had brought my pump. He said, “I see that you brought your pump. I will bring in plenty of sanitized bottles and some labels for you and I can get them put in the freezer for you anytime you say. I will keep the curtain closed to my nurse station and leave you guys alone for the evening as much as possible.”
I didn’t even say a word about being hungry and stressing out about when I could pump next, but that incredibly kind male nurse somehow knew what I needed and didn’t hesitate to provide what he could. For the moment while I ate my sack lunch (most appreciated sack lunch I have ever eaten) and before the guilt and blame storm cycle would start again he had been how I was given my “peace be still.” My Savior knew how I was feeling and Heavenly Father heard our family prayer before we left for the hospital, and the plea for help we asked of Him on behalf of everyone in the family. It was very clear to me that I was being watched over and walked through my personal little storm that night.  


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