Saturday, July 22, 2017


Sitting here tonight in quiet hospital room. Well as quiet and an ICU can be anyway. I listen to the intermittent buzz of Cydney's leg compression pump inflating and deflating. The beeps of machines as her feed is complete, the meds have been administered, and Heart Rate and Blood pressures are measured are all sounds that have become familiar background noise over the last three weeks.

Sounds of nurses and doctors in the hall as they do rounds, waiting for our turn. Each morning and night we stand and listen to the team of doctors discuss Cydney's case. Her diagnosis, her stats and vitals for the last 12 hours and any plans they have for her that day or night. Thankfully the time spent on us has lessened quite a bit! A good thing because she is doing well and there are not many changes that are needing to be made with medication, or treatments. We have come a long way from the first day we sat through rounds. It was as if we were listening to a foreign language, brand new residents who got the deer in headlights look as the parents emerge from the room for rounds to hear the latest, hearing the new residents discuss a plan for a another patient that we knew did not fit Cydney's plan and having to politely correct them. We have built a nice rapport with the entire medical team here in the ICU and are able to joke with them and put in our opinion in regards to Cydney's care and have it received with an open mind.

A few days ago we brought up to the medical team the use of Zolpidem (ambien) as a possible treatment to help with the Posterior Fossa Syndrome. After reading several medical journal articles and case studies that have shown the drug to have a positive effect of other pediatric patients with this same condition we then brought it up to the doctors who after their own research agreed to give it a shot. If anything it would give her some good rest overnight, and rest is something she needs.

Sitting in quite gives you time to reflect. To think about all that has transpired over the last 23 days since admittance into the ICU.   From the moment I heard the words "Brain Tumor" I had to find my inner strength for Cydney. She needed me now more than ever and I needed to show her strength and courage. I had to give her the confidence that she will be ok and she will win this fight. Seeing her in the bed; unable to speak to me, reach out to me, or show me through anything other than tears or smiles how she is feeling; has pulled at my heart in ways words can't describe. All I can do for her now is to reassure her she is doing a great job fighting. She is fighting the hardest battle of anyone!

I haven't asked Why? Why does she have to do this, why did this happen to our family. Only asking How? How do we fight this and how do we support her through it all. I have poured over blogs and Facebook posts from parents who have been through this. It brings a sense of Hope to see pictures of their kids; now years past diagnosis and treatments, back in school full time and doing normal kid things. Knowing they still face some daily struggles and the constant stream of follow up and testing they endure give me a glimpse of how life may be for the foreseeable future. Cydney has a long road ahead and a big fight on her hands, and we will be by her side the whole way!

I am thankful for the symptoms she showed and for the persistence of the pediatrician to not overlook a "simple" neck pain. Even though symptoms worsened rather quickly and it became evident there was more to the pain than a stiff neck, from the beginning I never felt our doctor was not concerned with Cydney and there being an underlying issue.

I pray for her continued healing and recovery as she passes this hurdle and moves on to the next. I pray for the other kids in this unit; those who have only needed a few days stay and then are moved to another floor and those whose stay here was too short and they have passed on.

It is a quiet place up here, as families stick to their own. Caring for their child. You can see the stress on faces of parents whose kid is having a hard day, the relief of those who get the news that they can move to a different floor and one step closer to home. Families with the "orange band" on their arms. Giving them a polite smile or hello in the hall or elevator as we ride up together, hoping it shows a sense of understanding and compassion as we all know the fear and uncertainty we are facing.

Today Cydney's smiles to our silly jokes returned. Seeing funny videos of her siblings and funny things I find on the internet make her laugh. I could do that all day, search for things to make her laugh, because I love that sound! She is trying so hard to find a way to communicate with us. It is a work in progress and one we will work out in time, for now we do our best and use our parent instincts to determine het needs.

A friend shared a quote with me that resonates with me as we journey though this trial.

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