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.

Sunday, June 5, 2016

Surgery, What Surgery?!

For those of you on Coleson's Facebook page, some of this will be repetitive, but I tend to be more detailed in my blogs than I am on FB.  For those not on FB, I apologize for the lack of updates.  I actually tried to post on Thursday but blame it on the lack of sleep, that I wasn't successful.

You would never know by Coleson's behavior that just 5 days ago he was in a very risky and lengthy surgery!  Aside from the stiff neck and the stiches (roughly 30) that resemble Frankenstein, he has not once complained of pain and has been running around playing since Thursday when he was released.  Yes, he was released on Thursday morning, a full 2 days earlier than expected much to his delight and amazement from the surgeon and his physical therapist.  I'll back up a few days for you all.

Surgery, Suboccipital craniectomy with C1 laminectomy and dural splitting (trying saying that 3 times fast!), went extremely well, just as it was supposed to.  Coleson was both scared and mad to awaken to all the IV lines in his hands/arms and feet and promptly starting requesting they be removed.  We had a bit of a scare on Tuesday night as he was striderish meaning his airway was swelling from being intubated.  They had to administer steroids to reduce the swelling.  By Friday morning he was breathing good but had a "silent seizure" where his heart rate dropped and he was unresponsive.  My heart rate did just the opposite as I pleaded with him to say something.  It lasted only a minute (but to me it seemed like forever) and came out of it.  They thought it was due to coming off the sedation meds and fortunately he did not have any more.  He drank a whole bottle of ensure for me and after a couple of hours of being stable, they started removing most the IVs and moved us to the recovery floor.  Oh the memories of being cooped up in these rooms for months during transplant.  Fortunately the Children's recovery wings are new (I'd say 5 years old) and they are very nice...for hospital rooms.  After being stable for a few hours on the recovery floor they removed the last IV, he still had his port accessed and a big bandage on his arm where his arterial line was.  He was fairly cranky until Peyton arrived to cheer him up with Ninja Turtle Playdough.  His whole demeanor changed as they played together.  About 6:00pm,  his physical therapist asked for us to try to get 30 minutes of unsupported sitting that night. So at 7:00, we asked if he wanted to sit in his special blue chair, which he loved to sit in when he was here for BMT.  He sat and played with us for about an hour and then he was feeling frisky and wanted to stand up/walk.  He needed to get weighed anyways so we walked him over to the scale.  He didn't stop there, we opened up his door and walked up and down the hallway.  This lasted for another hour for a total of 2 hrs of unsupported (neck) movement.  I was feeling confident that we may get released a day early at this rate.  He had only been on Tylenol for pain most of the day.

He was adamant he was not going to sleep in the hospital bed that night (it's too scary) and fell asleep on the couch (my bed) a little after 9:00.  After allowing what I hoped was enough time that I could move him without waking, I picked him up and laid him down on the bed...I didn't wait long enough!  He began to get upset and I laid with him for another hour about no more pokes.  The thing about sleeping at a hospital is they have to come at shift change and do vitals and then again at 4:00am. (A practice that is being challenged by the medical industry as being disruptive to the healing process and I hope gets changed in the future).  At this point any single type of status check was scary to him and he know if he was in that hospital bed, they would be in to touch him.  He stayed asleep until 3:00am when he woke and cried for me.  I promptly moved into bed with him again and had another 1 hr. talk about  how scary the hospital is and his "inside" owies and that he was done with the hurt part and he just had to get strong enough to go home.  I called the nurse to come do vitals early and give him his meds since he was awake and I could help him through it.  I had just gotten back to sleep it seemed when he woke for the morning at 6:00.  "Is it daytime?" he asked, he knew day time meant possibly going home, even though I knew we had at least 1 more day.   He was again pretty cranky, not wanting to do anything but go down the elevator... "go down 2 elevators mommy", he says, knowing that it takes 2 elevators to get to the car in the parking garage.  "No up elevators", he's too smart!  Daddy showed up at 8:30 and somehow convinced him to get out of bed and walk the hallways.  Within 30 minutes, the neurosurgeon saw him walking around and with a look of surprise asked if was ready to go home which Coleson promptly answered, "Yes!"  Paul said the physical therapist also did a double take when she saw him and was amazed he was up and walking.  It was Coleson's sheer determination and fear of the hospital.  He was not about to stay in that hospital any longer than necessary, and I don't blame him.  I too was exhausted from 3 nights of no sleep and anxiety and wanted to get home too.  Paul says it was all his and Coleson's plan as he knew it was Paul's night to sleep at the hospital.  At any rate, he was a free man and he returned to his normal happy self.  He even said to my friend Nicole who had stopped by to see us and helped us carry our things down to the car, "Thanks for riding down the elevator with us and thanks for carrying our bags".  Where did that come from?! 

Since returning home, he as been as joyful and funny as normal.  He has not slowed down at all and we spent all day exploring the train museum and science museum on Saturday.  It was rainy so a good museum day.  Today we went to Nicole's for lunch and friend time.  Then we stopped for "Izzy's Ice Cream" an awesome ice cream joint near our place which reminds of our good friend Issy from Phoenix.  Then to Choo Choo Bob's for some toy train play time.  Even after all that he was not ready to come home but after too full days, Paul and I were ready. 

We return to somewhat of a normal life again, we have all his usual appointments to contend with over the next several weeks but the only one that will require a "procedure" is the EKG.  I would ask them to skip it but with my own heart condition, I can't risk it.  Otherwise, they drew all the blood they required (which is like 13 vials) and I asked the spine surgeon to get the scans from Dr. Walker.  Us Hurler parents get to be pretty savvy at "combining" and "reusing" tests for his other specialists. 

We have a couple Hurler family friends arriving this week and will try to see them as well. I'll update again as we get through the upcoming appts. 

I can't thank everyone who supported us over the past 2 weeks.  It makes such a big difference, I can't even put it into words.  A simply Thanks doesn't seem enough but that is about all I can give as well as letting you into our personal world. 
Paul says' Chicks will dig this scar when he's older!  This chick hopes it disappears!