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, February 24, 2019

A Cf Is Not Forever Christmas Story In February


In our designated corner of the procedure room, masked and ready to cheer for the PICC'ed

I was surprised that Maelee ended up in the hospital this past December. I can never guess right when it comes down to it if she needs IV antibiotics or not. The previous year, December of 2017 we had Orson’s surgery and the timing of it had him and us as a fully functioning Christmas machine down and out until literally Christmas Eve, so I thought for sure (not that this makes any rational sense) it was looking like we wouldn’t have any issues for Christmas 2018. But I was wrong. Fortunately even in my October minds blissful ignorance of December’s hospital stay Heavenly Father knew I would need to prepare early. It was brought to my mind, “get ready now for Christmas,” all the way back in October. My mom happened to come over on the day after I had bought the Christmas presents (on a smoking hot sale of course) and she helped me wrap them. She kept saying, “whoa Kamarah I am so proud of you for being ready for Christmas this early.” It was not my idea though I was just listening to the whispers of my Father who loves me and who knew I would not have the chance to procrastinate for December of 2018.

With this being her second hospital stay for the year it felt to her like she was just there. They keep putting her in the same approximate floor and room area and it’s a repetitious routine of being trapped and waiting and waiting and waiting until we are allowed to go and finish at home. It was difficult for her to miss all of the school and friend Christmas activities. She felt left out of things and lonely. But she also had some very supportive friends, school, and church teachers who came and did everything they could to help her feel remembered and included.

As I watch her mind and body take these steps up in an unceasing uphill battle with the repercussions of her disease I’m continuously amazed by her strength. Although she has no option of going through the challenges of her body she does have the choice on how to face them. Which attitude pants is she going to put on? Well bless her heart when it comes right down to the tension filled hospital decisions and then even more emotionally filled long stretched out days and nights of her hospital stay she chooses to put on some really beautiful attitude pants. My favorite for instance of this particular December 2018 hospital stay was her courage with her PICC placement. November of 2016 she got her first PICC and it was placed under anesthesia. Then July of 2018 they gave her a dose of Versed to get her through placing it in a procedure room and not put her under. Finally the big drum roll of December of 2018 she was able to muster up the courage (and this is them threading a line from her arm to her heart while she is awake and alert) to get her line placed with no Versed at all. She was of a fully sound mind and body for this PICC placement which just to me shows her absolute fight and courage for success. I continue to be so proud of her.

It was rough to have her be trapped and struggling in the hospital during the busy and exciting Christmas season and then came the familiar strain of helping the home kids feel happy and well in tandem with the hospital kid feeling happy and well. But again we continue to be blessed with family angels and friend angels who help us get through it all.

When she was able to go home to finish her IV antibiotics I was feeling pretty sorry for myself. I was upset that I wasn’t able to get out Christmas cards as early as I wanted and frustrated I wasn’t able to do the seasonal making and baking that I usually did. I was focused a great deal on things that didn’t matter most. It seemed important to me though and I was sad. Then I got a text from an unknown number in my phone. Someone was asking me how Maelee was.

I was grateful for the kindness of the check-in and didn’t want to be rude so I gave them an answer then asked how my mysterious texting friend’s family was as well, figuring this would clue me in on who they were without me being a jerk and not knowing who the number was. The answer took my breath away as I realized who had taken then time out of their day to text me.

It was a beloved friend and example in my life who I usually talk with face to face or through Facebook messenger. This friend has a tremendous load to carry in her life and does it with such grace, confidence, acceptance of God’s will, and kindness and concern for others that I couldn’t believe that with what all she does everyday for her family that she would take the time to check on me and Maelee. It was a very powerful moment for me of feeing the love of God in my life during the Christmas season. I also quickly added this sweet friend to the contact list in my phone and expressed my gratitude for the love she allowed me to feel on that December evening. What a tremendous lifting hope it is to be surrounded by people trying so hard to follow the example of Jesus Christ.

That is the end of my Christmas story in February. It was a rough month and different than the other two CF exacerbation stays she’s had. This time she sounded really terrible and everyone told her that constantly. It was like taking a beating mentally considering the work shed been doing for her lungs already. It seemed so insulting and defeating to hear that they weren’t reacting positively to her work and effort. The bronch shows her lungs were/potentially still are recovering from having very thick (cheese curd consistency) mucus plugs throughout the bronchable areas. Maelee will have her second sinus procedure (procedure, surgery, whatever you want to call it but her ENT will be scraping all of the compacted bacterial tar out of her) in March to hopefully alleviate the constant head pain, nausea, ear aches, and overall head throbbing she deals with always. The current idea is that the bacteria that is continuing to give her lungs such a work out is also in her sinuses and they in turn are re-infecting each other. She continues to work hard and we continue to encourage her to work hard to stay on top of her treatments. Beautiful discoveries are happening in both her life and ours as parents  as we work through the regular and universal growing PAINS of life and the strange world of CF mixed in.  

Days are easy in the hospital, nights feel sad and
all emotions are coming out.

Mornings in the hospital are wiped of the negative
night emotions because your just so happy the night is over.

Getting to take a walk out of the room after 72 hours inside is
really very exciting.

Maelee's dear friend and child life specialist who is allowed to
be by her during PICC placement. She is an angel on earth. 

The procedure room and Maelee being filled with courage
getting her PICC like a champion of life.



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