My Journey of Self-Love – Part 3
Days were full of visitors…..sometimes I was glad to see people….sometimes I just wanted to be alone. In the PICU you are never alone…and that is so important…with all the beeps, pings & alarms…you need answers, however after just a few days I practically had my nursing degree…as I picked up the lingo quickly. Let me tell you about a key factor about every single staff member of Akron Children’s
Whether it was a nurse, physical therapy, xray, respiratory therapy, the janitors, physicians….THEY ALL TALKED TO EMILY. They knew she couldn’t respond, she was in a coma for Pete’s sake…but every single medical person who came into her room talked to her and let her know what they were doing…”I’m going to take your temp Em” “Let’s do some leg stretches Emily” They treated her like a true person and talked to her from the moment they walked into the room and said “see you tomorrow” Do you know what a difference that makes? HUGE….and at 2 in the morning…Respiratory therapy would come in….tip-toeing not to wake me…whispering to her…”what up Em” Z would say…..I think I scared him most of the time, as I would answer……”What up Z?” hey…someone had to bring the laughter
Days went on and remember…I had this other kid
Nick went with my brother and the girls to a soccer tournament and Eric sent me this photo…one of my absolute favorites that he caught in the moment…the kids didn’t really talk about it…but they knew & they wanted Em back to. This was taken the morning the doctors were going to attempt to lower the pentarb and bring her out of the coma…I was about to get my girl back. No such luck…Em’s brain wasn’t ready, as they began to lower the dosage her brain began firing seizures again. We’d try again in about another 3 days.
Then there was Day 11 and the neurologist came in early…and for some reason…when I got news I was always alone…not sure why that happened. She sat down next to me & said, “honey, it’s not looking good, we can’t leave her like this forever” I had nothing to say…..she continue to look at me and said, “I just wanted you to know that” AND LEFT.
Em’s nurse that day, was nurse Eric……poor nurse Eric….I lost it…completely….I just looked at him…”what did that mean? Who says that and leaves? “ He was great wasn’t afraid of my tears or hysterics at all…..he told me some docs just don’t how to talk to people….that Em was doing just fine, and he has seen kids in comas for over a month…ignore what she said…and just be Em’s mom. For some reason….Em heard her too and didn’t like what she heard….because when they began to lower the pentabarb the next day..this happened……
Remember what it looked like when we arrived???
So it was time……it was time to slowly reduce the dosages and bring Em out of her coma. Now, remember what Dr. Forbes told me…..when she wakes up…we will most likely have a 2 year old and will be learning things all over again….fine whatever….she’s alive, we can do this….the process was slow waking her up and one night…Jack appeared from the Doggie Brigade…the drugs were still pretty heavy…..my Favorite nurse…sorry, not sorry….Danielle held Em’s eyes open..but the first thing Jack did when he got in Em’s room was lick her foot that was sticking out….her eyebrows shot up…she knew EXACTLY what was going on…they pulled a chair next to her bed and put Jack’s treat in her hand..he took them so gently and her eyebrows just kept going up and down……nothing like the love of a dog…we have a black lab at home….so this was all very familiar to Em.
Bringing her out of the coma was a slow process….I wanted to talk to her…more importantly…I wanted to hear HER voice. The morning came when they were explaining to her that they were going to remove her breathing tube…she understood, she nodded…all good…but I kept reminding myself, even a 2 year old understood basic commands. Out it came…they told her, her throat would be sore and it was ok…now, Em’s been asleep for 12 days…my mom’s heart wants her to tell me how much she misses me and loves me…but in reality, Em thinks she’s been asleep over night…we wait..we wait for words…any kind of words to give us a sign to what we will deal with next…..
And then it comes…clear as day…but in the softest whisper…….”I have to pee……..” giggles and tears filled her room…..she wasn’t happy…..not at all because she didn’t get it…..she had to pee and everyone found that funny. We weren’t laughing at her….we were rejoicing that it was EM…plain as day..it was my daughter as a 10 year old….she wanted to see the leads being removed from her head, so she watched….she was quick as a whip…..she ripped out her own feeding tube…it was driving her crazy…out she took it.
Now…I thought the coma was the hard part…at the time…it was…no one mentioned detoxing a 10 yearold….holy moly!!!!!! She went through all the phases….there were bugs crawling on her, to people under her bed……
Though she’s smiling in this picture, she is still loaded with all those drugs you can see it in her eyes. Em would cry ALL the time….my husband would walk in the room and she would start crying..”he asked her why are you crying……she told him, I’m just so glad you are here”
This event also brought out the best between brother & sister and though they may never admit…I have the proof
Em would tell Nick “I don’t know why I’m crying” Nick would bring her Kleenex and tell her…”it’s ok…just cry”…he would also take all the crazy stuffed animals she got and do shows along the privacy curtain to make her smile…yup…I have proof
It took about a week to detox….we never went to a step-down floor…..we were discharged right from the PICU. No speech therapy, no physical therapy, we were just going to continue to taper Ativan and she would be on Topamax for 6 months.
Not all stories from the PICU turn out like ours…..they don’t all have happy endings…..my family & friends will continue to give back to the PICU each year….we meet in the Fall and make blankets.
We go and visit…..because nobody goes back…who wants to go back….WE DO!!! These doctors & nurses became our family whether they liked it or not….
We have done two 5k races to benefit the PICU and next year there’s a rumor next year’s fundraiser will include a date night….with a wine-tasting and fancy clothes!!!!!!
So…what’s permanently wrong with Em…what are her long term issues??? You tell me….there she is…110% 12 year old….happy one minute…yelling at me the next…ready to be that crazy teenager…well..there is one little thing that you all can’t see….Em had a routine eye exam a little over a year ago and I’m in the waiting room…playing on my phone when the doc comes out and asks me if I would kindly come back into the room…he had a look of utter terror on his face. He explained that while examining Em’s eyes he found a scar…on her right retina…that she really didn’t need to be concerned about now…but what bothered him was the scar was from high doses of drug abuse…Em and I just looked at each other and laughed…she proceeded to say proudly…..”Oh…I was in a coma for 12 days..it’s no big deal!”
