Thursday, November 10, 2016

Stuck In the Medical Clink, Only the Beggining They Say


It’s pouring rain and the time of day when everyone should have their headlights on but it isn’t all the way dark yet. As I turn onto the 202 to start the 23 mile drive to the hospital I think surely this rain is going to stop. But the whole way to the hospital its pouring rain, hard big drops too, very very uncommon for where we live.


My nine year old is in the back seat wound tighter than a spring awaiting her first admittance to the hospital that she can remember. She has had low lung function for the past few months and has sounded “coarse” and “wheezy” so the pulmonologist at our CF clinic has prescribed hospital IV’s and observation. I’m trying to stay calm but the rain and the freeway and car that I am not used to driving in combo with the fast approaching darkness has me noticeable tense. Maelee the nine year old suggests we say a prayer and I agree and that she should say it. We just said one with Dad and the boys and baby Ruby before we left but why not it can only help to say another. She finishes the prayer and is quiet for just a minute then she says, “Mom I think we will be doing a lot of praying these next few days.”


She’s right! A few hours earlier we had just got the cast for our one year old’s broken arm and literally while I was in the casting appointment the “beds” department of the hospital called to say that Maelee’s bed was ready. So we hurry and pack our bags and wait for Dad to come home to give her a Priesthood blessing with a friend and neighbors help and we fly off in the most gas friendly car we have to the hospital.


Everything is new to Maelee. The bed is super cool and moves. Her hospital room is big enough for two people therefore has two televisions and she is super pumped because she thinks she may be able to find a way to watch both of them at once.


Then the nurses come to take her to the “procedure room.” They have a separate room for the “procedures” so the kids have nothing bad happen in the rooms they are staying in. Maelee is incredibly worried for the IV placement. Desperately hoping to avoid 8 nurses laying on top of Maelee while she screams and thrashes I pull out all my Mom ideas. “Hey Maelee want to shop for ankle boots on my phone?” It works. She is so distracted shopping for the boots she has already asked to get for Christmas that the two nurses get the IV in and she’s ready to roll. They warn her though that in the morning the IV team will put a longer lasting IV in called a PICC line. They explain it to her as best they can, something about a long tube being inside of her arm that they put medicine in. Unbeknownst to myself and the nurses Maelee’s interpretation of getting a PICC line means they are going to have to slice open her arm to put the tube in.


After finally settling down after a ham and cheese lunchable and oreo and milk dinner from the vending machine since the cafeteria was closed she finally falls asleep 4 hours past her bedtime.


Maelee dreamt of another girl in a hospital bed beside her. The other girl raised up in her hospital bed to show that she had a giant hole in her stomach. Maelee looked around her room in the dream after seeing this shocking hole in the girl next to her and started getting attacked by doctors and nurses with needles.


Right about that time a PCT came in to poke Maelee’s finger for a blood sugar check. It was 2am. Maelee understandably lost it. I did what I could to help the nurses get the blood and eventually after lots of sadness Maelee was able to again fall asleep mumbling even as she was sleeping about ripping out her IV and going home between sobs about a PICC line. She still thinks her arm is getting sliced open the next day.


After a late in the afternoon PICC line placement (under full anesthesia due to the fight she gave the nurses the night before) things began to fall into line better. Then it just became a waiting and talking game. The mornings especially brought lots of talking to a pulmonologist, a team of 5 pediatricians, and right behind them a team of 5 residents, respiratory therapist, her CPT, her nurse several times, cleaning people, food deliveries. A typical grand central station with no privacy and with large amounts of interruption. Throughout her 6 night stay a sputum culture had been taken that first night and was busy growing in a lab deep in the depths of the hospital basement (we’ve heard its pretty spooky down there for reals). This culture and more testing, another lung function test, and finally a sinus and chest scan would determine if Maelee could go home to finish her IV treatment and for how long.


So she learned a ton about what it means to have CF and that she was been extremely blessed to not to have had to go in for something like this sooner. She goes from feeling super upbeat to feeling like she did something wrong and its her “fault” for being in the hospital. Frank and I and my Mom all worked together to take care of the kids at home and Maelee in the hospital. Someone always slept overnight with her and someone was always there with her during the day. The only breaks she had in one of us not being in there with her was some afternoons I or Frank would drive home to switch the car out for the other person since one of our cars gets considerably better gas mileage than the other. It was exhausting but not a scary trip (besides Maelee’s horrible dream that first night) to the hospital. It was refreshing to have a “big kid” in the hospital and not a little baby, just because it was easier to communicate and understand each other and to endure the experience as a nine year old versus a tiny baby you can’t bear to turn away from for a second.


She had a couple of mom friends bring their kids to come visit her. One night she had two girlfriends and one of their mom’s eat dinner with her. She LOVED that. Another night she had some girlfriends come and do crafts and play games with her. She even had her carpool friends come and before long they were all playing hide and seek. Its surprising how many places you can find to hide in a hospital room.


It was only six nights which is a very short CF hospital stay so she/we received lots of blessings on this visit. She came home with the PICC line and we will have several check ups and check ins as we navigate the next couple of weeks of four vests a day (2 hours a day) and extra meds and doing the IV’s at home in tandem with Orson’s g-tube feeds at night it may get a little hairy but the first night went well.


1:00am – Orson’s G-tube feed finishes and he gets unhooked and taken to the bathroom

4:00am – Maelee has another IV

6:30am – 1st vest and breathing treatments

12:00pm – IV and 2nd vest treatment

3:00pm – 3rd vest treatment and breathing treatments

7:00pm – 4th vest and Orson gest set up and hooked up for his g-tube feed

8:00pm to 9:30pm - Night IV



I had some misinformation in my head about IV’s and once that was cleared up we were taught from a very skilled home IV nurse on how to do them for Maelee and it’s manageable. Maelee will be missing school while she has the PICC and while she needs to be doing these extra vest treatments, to both protect the PICC from harm and from germs, and to provide ease of treatments.


The message of all the care providers across the board during this experience was, get used to this, its only the beginning. I feel less angry now when I hear that. I still want to tell everyone who says it, “maybe you don’t know us, but that isn’t something we are going to accept as normal.” I don’t tell them that but I think it and feel it. My heart still is shocked when my babies are in the medical clink.


What kills me though after leaving the hospital and having the separation of family that we had only a tiny taste of, is the other kids who didn’t get to leave and families who are still in a state of constant pulling as they manage the home front and the hospital front. I wish I could help them. I wish I could say, hey I’m not a nurse but I am a mom so let me sit with your baby for a few minutes while you go get some ice downstairs. Or walk with them down the halls during the many transports to the different places your kid needs wheeled to. Or give them a pep talk as they walk from the car into the hospital.

One friend we know personally has been at PCH for three months. Our 6 six night stay dealing with what we have been assured will become a multiple time a year event for us indefinitely, is nothing compared to sitting there with your nerves on complete edge and your heart shredded as you wait and watch your child receive and respond to medication and procedures for over 90 days. She has been there with her son who is fighting through Leukemia during the day and then her husband comes to be with him at night. I wish I knew exactly what she needed to help her feel a small bit or normalcy or comfort while she is in the hospital room with her son. One tiny idea that I got was that she would benefit greatly from her own laptop. Her husband uses their only laptop for work purposes so he needs to have it with him. If she had one to use while she was at the hospital with her son it would provide a greater source or freedom for her mentally to wade through her personal sea of worry and waiting. She could more easily journal, make photo books for her family and son to document this life journey they are on. So my new goal is to try to as quickly as possible find a way to get this friend a new laptop. I’m formulating a plan and unlike Mike Wasowski on Monsters Inc, I will not be “using mainly spoons” but plan on making some phone calls and doing some research to see if I can find a company or organization who can donate a laptop to this mother.
This is ham and cheese lunchable vending machine night, before the nightmare

Right before she went under for the PICC placement

The Wall of Love

First scan experience, I was told but never realized that this machine uses 100 times the amount of radiation as an x-ray machine so that is why Maelee won't be getting these done very often per our doc


1 comment:

  1. My nephew has CF. My heart goes out to CF families. You guys are tough warriors.

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