After four days in our local hospital my hopes of remaining close to home faded quickly. As I found myself face to face with two gentleman dressed head to toe in flight gear and standing in our hospital doorway, my mind began to replay the events of the day. I was desperately trying to remember how we came to be at this point.
First, let me say I have come to love our "small town" hospital and pediatrician's office, they've earned the right to be called our front line defense for Cohen. They know us and they know what to do when he is having a reaction. We have developed a relationship with these wonderful people and they are part of our "Team".
So for us to be able to stay close to home for this battle was a blessing for me to say the least. But with the passing of each day I was warned of the impending transfer to our "Big" hospital. After a few days I thought we had possibly dodged the proverbial bullet but then it happened...
Cohen wasn't getting better and one of our very trusted "team doctors" made the decision that it was time to get him to Cincinnati. I felt like someone had kicked me in the stomach... our other kids were here at home, Todd was here, friends and family that could help us.... they were all here. But everyone agreed that this was the best plan for Cohen.
As his doctor began to make the arrangements for the transfer he periodically come in to update me on what was happening. At one point I was told that they were trying to determine whether Cohen would be going by helicopter or plane. I was informed that if he went by helicopter I would not be allowed to fly with him.
The idea that I would be at best a 6 hour drive behind him was frightening for several reasons. Besides the obvious of having a sick child whisked away from you, there was much concern about Cohen's severe allergies. On several occasions at our "Big" hospital I intervened, preventing several mistakes that would have made him extremely ill. Who would advocate for him if he was flown there alone?
I did they only thing I knew to do... I got on my knees and began to pray... I asked my friends and family to pray... and I sent out a Facebook call to prayer. I was desperate and scared for my little guy.
I spent the passing time holding and comforting my sweet baby boy and praying.
The news finally came, they would take him by plane and I WOULD be able to go with him (Praise The Lord), however I would only be able to bring a very small bag with me.... seriously, I would go with only my toothbrush in my pocket if it meant being able to stay with him!!!
Now, in my doorway stood our transfer team who quickly introduced themselves and informed me; "That my child was now under the care of Cincinnati Children's Hospital and that they would do everything they could to keep him safe and comfortable during the transfer process." My head was still spinning from the events taking place and I could tell from the look in Cohen's little eyes he was feeling the same.
I placed him on their gurney (which must have cost more than most people's vehicles) where he was surrounded by computerized equipment and emergency gear. He looked so small lying there.
We began to make our way down the hall and I could hear the whispers of onlookers making their speculations as to what was happening to my little guy. His sweet nurse (now friend and "Team Member") came out to hug me and give me her love, leaving these people that I have come to trust so dearly was hard and added to the emotions building inside of me.
On the ride to the airport I sat quit and unable to speak (something very uncommon for me). I have watched movies where the scene shifts to slow motion and the events of the moment seem to drag on... and now I found myself living in one of those moments. Todd tried to arrange to meet us at the airport but we were already to far in our route for him to get there in time. I am certain that seeing him would have probably released all of the emotions I was so desperately trying to hold back.
It was pitch black when our ambulance pulled onto the runway where "our" plane was waiting for us. I had been here many times but I had never seen it look this desolate and lonely. I quickly became aware of the fact that the only people at this airport where here for the sole purpose of taking care of my son. I quickly dismissed the thought for fear of becoming overwhelmed with emotions.
Two pilots and another transfer member were standing by the nose of the plane waiting to introduce themselves to me. Their kind attempts at trying to make the mood a little lighter was lost on my foggy mind. I watched as this giant gurney was attached to a mechanical arm that lifted it and it's precious cargo onto the plane.
I was then ushered inside and given a seat close to Cohen's head where he could see me. My strong little boy had never uttered a peep this whole time and now searched my eyes for reassurance. I held his little hand as we began to taxi down the runway.
When we started to ascend Cohen suddenly began to scream and tears of pain rolled down his little cheeks. The flight nurse quickly came to his side and attended to him, I would learn later that the changing of altitude was creating even more pressure in his already gas filled belly. The nurse was able to vent his G-tube and reduce some of his discomfort. He finally settled and fell asleep.
I had never been on a plane this small. I am not a big fan of flying to begin with... and on this little gem I was able to look out of the cockpit window, a view that I was not entirely comfortable with apparently!
The trip took us about 45 minutes. During the flight I had a chance to finally catch my breath and attempt to take in everything that was happening. I kept looking at my sweet little guy thinking about all that he had been through. This isn't a situation that you every think you will be in with your children. And now here I was thousands of feet in the air with complete strangers that I was completely depending on and trusting with the life of my child.
I watched as we passed over hundreds and hundreds of lights, each representing people that were going about their daily lives. I tried to think about the everyday things that I would have been doing and certainly taking for granted if I were home. I wondered how many times people in similar situations had flown over my house and seen our "going about life light" glimmering below them. It was thought provoking enough for me to make a commitment to start praying for the planes and helicopters that pass over me each day.
When we finally arrived there was an ambulance and more transfer team members waiting to escort us to the hospital. This proved to be another long silent ride with me still to emotional to speak, for fear I would start crying and not be able to stop.
The night was long, Cohen's IV blew while we were in flight and a new one had to be placed. The hospital has a team that is designated to specifically put in IV's for kids's like Cohen (he has a lot of scar tissue from all of his IV's and is very hard to stick). Even with this special team he had to be stuck more than once to finally get his new IV started.
Todd and the girls arrived the next day... and my heart never felt so full!! I couldn't hug them enough. Cohen slept most days still, which allowed for me to spend some much needed time with the girls. My wonderful husband knew just how hard the events of the passing days had been on me and was trying to provide me with as much reprieve as possible.
I was doing well and had been holding it together and then it came time for Todd and the girls to go back home. Now, I am not a real big crier, I mean I do... just not very often or over little things.
And then it happened...
I was trying to check them out of the Ronald McDonald House when one of the SIX sweet ladies behind the counter said some very well intended words... "I hope you have a safe trip home." Now, up until this point I had not shed a single tear, maybe I was just to exhausted or perhaps I hadn't let myself fully take it all in, however for some reason this was the straw....
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These poor unsuspecting ladies were suddenly staring at a blubbering lady that was trying to get out the words, "I don't get to go with them." Between my uncontrollable sobs and feelings of humiliation (I hate crying in front of people much less strangers) I was a mess and I was trying to hide it from my girls. Fortunately, they were off getting a snack for the road and missed the whole scene.
These wonderful ladies did their best to comfort me and went out of their way to do all they could for us. I am so grateful for the kindness of the people that work at the RMH.
It has taken me awhile to be able to write about the events surrounding our flight. It was a difficult time for our family and it wasn't something I wanted to revisit in my mind. Now, that I am sitting here in the comfort of my home and have been able to keep our little superhero out of the hospital for awhile, I can fully appreciate the experience and what it has taught me.
For now I am taking each day one at a time, appreciating every opportunity to be together as a family. And reminding myself that; there is joy to be found in each day and although some days you may have to look a little harder than others.... never give up, it's there!
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Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?.JPG)
Imagine being two years old and attached to an IV pole for 21 hours a day! .JPG)
You can feel the excitement build and watch his little eyes light up when we say, .JPG)
Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him..JPG)
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