Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, May 24, 2016

It's What's on the Inside that Counts!

I was hoping to start this entry with news of a successful surgery today but as one Hurler mother recently said, we need to be prepared to expect the unexpected.  I thought I had accounted for the unexpected by reserving a house for the summer but nothing prepared me for the events over the last 24 hrs. 

We had a relatively uneventful first couple days getting settled here in our temporary home.  Our place is nestled in a very nice neighborhood with a park 3 blocks away.  Our landlord is very accommodating and has a girl close in age to Peyton who only lives 1 block away.  Dairy Queen and a very nice local grocery store are within 3 blocks, the river across the street.  The weekend weather was gorgeous and without the distractions of every day life, we actually were able to relax on Sunday. 

The knots in my stomach didn't start to occur until we were on our way to the pre-op apt on Monday.  Coleson did well during the Child Life discussions and started out being a big boy for the x-rays but after 3 of them started to melt down and I had to help him through the other 4 or 5.  Our consult with Dr. Walker went really well and I was actually feeling very confident about the surgery.  The last item of the day was to get labwork.  We started off in the lab, which we found out could not do lab draws from his port.  We have not tried an non-sedated blood draw since he was first diagnosed and didn't even want to try.  So we went back up to the Dr.s office for a nurse to do the draw.  After about 15 minutes and several  pokes and prods, they were unable to get a blood return from the port.  There must either be clotted blood around it or a collapsed vein, regardless it needs to be replaced.  Next they brought in a PICU nurse to try an entry into a hand or foot.  By this time, Coleson had already had enough and even with 4 us holding him down, the nurse could not get a needle in a vein in either hand.  So they called in "Dee Dee" who for sure would be able to do it.  So again with the attempts but now on his feet.  Again we all had hands and legs secured and he was lying in my lap with me shielding his chest holding his head and he still wiggled and whaled rendering any attempt useless.  For a 4 year old with Hurler's he has superman strength!  We had to get the blood draw so they could get the right kind of blood (with the proper antibodies) prepared for today's surgery.  So Plan D was to use nitrous.  After 3 hrs and with the help of nitrous they finally got enough blood.  It was a horrible experience and not the way I wanted to start this surgical procedure. 

Today actually started off better, except for the complete lack of sleep for me, Coleson didn't mind the 5am wake up call and immediate bath with the special soap (which we also had to do last night as well).  He didn't start to get nervous until we were in the parking garage and refused to get out of the car.  However, once we got into the waiting room and play area, he was OK.  He was even OK up to the point that they masked him for his MRI.  Prior to the MRI, Dr. Walker said based on the X-rays that he consulted with a neurologist and they thought his neck was strong enough to perform the surgery as intended, with the femurs being done while he was facing down on his belly and then the hips with him lying on his back.  Last night we had talked about doing the entire procedure on his back, though a little more complicated for the surgeon, less risk for the patient.  This I felt was actually good news and was looking forward to getting this behind us.

We didn't receive the bad news until Dr. Walker came out after the MRI to give us an update.  I knew something was wrong when he wanted to talk to us privately.  He reassured us immediately that Coleson was OK but that the MRI revealed a cyst at the base of his brain on his spine.  This cyst was putting pressure on the spine and it would not be safe to perform the surgery.  The cyst, though currently was presenting no signs it was there externally, would need to be taken care of before it started to effect his balance and cognitive ability.  The next hour was overwhelming and all I wanted to do was to hold Coleson again but they wanted to perform more MRIs to ensure there were no other cysts.  Fortunately there was no more.  But now we are facing another surgery, plus we need to get the port replaced and who knows what will come of the leg/hip surgery. 

On the outside you would never know that Coleson even needed any surgery.  He climbs like a champ and even started doing flips in the pool.  He is super smart (ask him anything about the planets) and his communication is even maturing.  His latest IEP was good in every area.  But on the inside, you never know what exists and with a Hurler kid, it could be just about anything.  It's a total body condition and each kid presents differently.  So, another challenge for us and for him.

Two of my closest friends sent me this same message (separately coincidentally), "You never know how strong you are until being strong is the only choice you have."   I have never had a choice to be strong, it started when I was 4 and lost my mom.  I feel like life has challenged me in so many ways  it is the only choice I have and I will continue to be.  I've said this before but it remains true, I can only be this strong with the love and support of friends and family and yet again, you all pulled through for me today.  Our appt. with the neurosurgeon is tomorrow (today by the time you read this) and I'll hopefully have a better idea of what our new plans will be. 

Continue the prayers and wishes and this truly is hard on Coleson who knows enough to be scared but not enough to believe everything will be OK.  I really am concerned for his mental well being along with of course his physical well being.  I'll update as soon as we know more.