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, January 29, 2017

A Friendly Face Can Change Everything!


The three surgical procedures (sinus clean out, adenoid removal, bronchoscopy) that Maelee had done this past week are not uncommon. But to her as a 9 year old girl it is this huge looming thing that we have been anticipating for two months since her first CF “clean out” hospital stay of her life in November. This surgery is an extension of that November hospital stay experience for her. She has heard us explain the reason for the surgery many times at this point, which is to bring up her lung function.

What I see her absorb from all of the talk and build up though is pressure. Pressure on her to get this done and get that test score up up up! Me remembering her extreme self disappointment in the hospital back in November when all her hard work just gave her a few tiny points in the lung function test and then back below where she was and not the huge jump we were all hoping for, wished I could protect her from the burden of pressure and the potential future disappointment (duh of course all parents want it to only be smiles and high fives) of this not being the fix or it taking longer than we guessed to increase.  

Finally though her 5:15 check-in morning arrived. We were blessed as the parents to both be able to be with her and each other on this day (thanks Mom! & thanks Frank’s work!). We walk into the hospital to get started and what do we see first thing? Behind the desk of the check in area on the screen saver wallpaper of the computers is none other than our very own Orson boy. The hospital had asked for the kids to do a media photo shoot early in 2016 (along with several other patients and their families) and some of the photos taken that day have indeed popped up in the hospitals advertising campaign throughout the year. As we moved through all the sections of the hospital on the way to surgery we saw that EVERY computer was set up to have Orson’s face on it (along with the inspiring hospital advertisement of course). We felt immediately at ease to have his sweet happy face staring at us wherever we went.

"HEY THAT'S MY SON"
Dozens of other sweet happy faces of patients could have been used on that screensaver, but we do not think it was a coincidence that it was Orson’s that day. It was a gift for us from Heavenly Father to lighten the mood and help us feel at ease. Maelee and I got a huge kick out of Frank telling hospital employees as he passed them and their computers, “hey that kid on your screen, THAT’S MY SON!” as many times as he could. It was special and it was definitely a gift.

Playing Phase 10 to pass the time.
Wonderful day to be on the 4th floor of the parking garage.
So after we waived goodbye to Maelee as she rolled away in the capable care of amazing Phoenix Children’s Hospital staff into surgery we knew we had three hours to spend waiting. We ate breakfast together. I beat Frank in the first 4 hands of Phase 10. Frank did a mini run on the 4th floor of the parking garage to keep his streak alive. I wrapped up in Maelee’s blanket and watched the construction machinery down below the 4th floor working on the fancy new ED of the hospital.  

Before we knew it we were at Maelee’s bedside watching her start to come out of her surgery nap. The nurse told us that she had swallowed a lot of blood during the surgery and right before we came in her recovery room she had just vomited blood. Whew I thought, I’m glad I wasn’t here for the vomiting of blood I don’t think I would have handled that well!

They got us to her room she would be staying the night in and low and behold it was the same floor she was on back in November. In fact every nurse she had (just three shifts this time) was a nurse she had back in November. She knew them all! Plus Maelee remembered all their names.

As Frank and Maelee both took a post surgery nap together (Maelee, now is at the point where she is being silly from the anesthesia) I stumbled upon something that stopped me in my tracks on my Facebook feed. My friend who has been staying with her son in the hospital since August of 2016 posted some thrilling positive news on her sons journey. I had to re-read it a couple of times because I was reading so fast from my excitement to get to the end I missed a few things. I considered this post worthy of waking Frank up for.It said,

No one sleeps well the night before surgery...
“First off I have to start this off by saying that God is good. He is there for us every step of our journey. He knows each one of us personally and will never leave us. It doesn't mean it's going to be easy….”

My friends post goes on to explain some literally miraculous news in her sons disease and her feelings as a mother and of her faith, it made my voice do the cry talk thing as I read it out loud to Frank. Maelee at that point came out of her daze and mumbled, “Oh Mom, don’t cry OK, don’t cry.”

A few minutes later and for the next 5 hours she vomited quite a bit. Blood the first four times and then the food she ate between vomits the last two times. But the tone had been set by my friends powerful testimony, God is good and He will never leave us.

Some examples for me that day of Heavenly Father never leaving us. He kept Maelee calm during all of her barfing. She would grab a hospital vomit bag, throw up blood, and then ask Frank and I to please help her rinse her mouth out and then announce “I feel so much better.” If I ever throw up blood I imagine it will send me into a fetal position panic and hysterical tears, but she was stone cold calm.

Another example of Heavenly Father never leaving us, Maelee had all her nurse friends from November happen to be on shift to help her again during her surgery. A gift. Maelee really loved that she knew them all already.

Another example of Heavenly Father never leaving us, Orson’s face smiling at every single person in the hospital during the time of Maelee’s surgery and short stay. I loved watching Frank be so proud to tell everyone it was his son and then Maelee jumping in that it was her brother.     

It is wonderful to have these procedures done with! We continue to work now and always on strong lungs. Trying for extra vest treatments, extra bike rides, and Maelee’s new favorite extra trampoline jumping. We test again in March to see if there is any jump back to Maelee’s personal lung function high. 

In the mean time, Maelee has noticeably matured emotionally through her health issues these past three months. She has made big improvements in my eyes to be the kind of friend she wants to have and has gained an increase in love and a decrease in judgment of others. It is a wonderful time of life to see our kids work through their challenges and be successful and try their best. I am so grateful that I know that my friend has it right. “God is good. He is there for us every step of our journey. He knows each one of us personally and will never leave us.”

Family selfie before surgery.

Orson smiling at everyone always.

Next day after surgery, almost going home.


One of Maelee's awesome nurses from November and January.

Lovely braids and cheerful ring on the dreaded IV hand.
Transporting Maelee to room with mask on and cool wash cloth for fever. Large stuffed dog from Grandma got to ride too.



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