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 30, 2017

I've Got That Power

After 9 hrs. of surgery and only 3 nights recovering in the hospital we were able to bring Coleson home on Friday, a whole 4 days earlier than expected.  I am biased but my kid has super hero strength to recover from surgeries.

Monday evening's "talk" about the surgery was uneventful.  Peyton and I told him that his hips were not formed correctly and the Dr. needed to fix them and he would be in a wheelchair afterward.  Peyton had twisted her ankle on Monday and was hoping on one foot and she thought she needed x-rays and possibly a wheelchair as well so she explained that to him as well.  Tuesday's drive to the hospital reminiscent of last years drive, albeit a different route and this time all of us went.  The pre-op routine was very familiar, as we've experienced this at least 15 times before between surgeries, MRIs, ear tubes, etc.  This time though, they access his port and but the happy time cocktail in his port in a stealth like fashion which also had the benefit of having almost instant impact.  He immediately started to smile and act goofy but he didn't fall asleep so alas I had to "suit up" in the paper jumpsuit and mask and make the uncomfortable walk to the OR room.  The walk to an from where you try to fight back the flood of tears that are begging to flow out.  If you've never seen an OR room, it is what I can only describe as "eerie".  It feels like a cold garage, made sterile and filled full of medical gadgets, instruments and machines and of course the bright lights. 

It was a long 9 hrs. but the nurse called us every few to let us know everything was going OK and as more time past the better as that indicated to me that they were able to proceed with all of the surgeries.  There were actually 6 procedures, the cutting of the femurs and drilling the plates to secure the pieces together, shaving off part of the pelvic bone which would be used as the wedge that was needed for the hip socket and then the actual cut in the hip socket to make it more round by placing t previously cut hip bone into the now vacant space in the socket.    As Dr. Walker explained to us after the 9 hr. day, there were only 2 minor issues but otherwise the surgery went perfectly.  The first was that one of the electrodes that were placed into Coleson's skulp had inadvertently came loose and ended up poking the anesthesiologist which meant both Coleson and the anesthesiologist had to have their blood testes to see if Coleson had any viruses or otherwise communicable diseases. He also had to have 1 pint of blood but that is pretty typical.

Reminiscent of last year, Coleson again demonstrated his superhuman ability to rebound from surgery.  He was on quite a bit of pain medicine with a self controlling pump that would administer addition pain meds as he needed.  A 5 year old obviously cannot be responsible for administering his own pump so the nurse asked if I would like to do it or have the nurses.  After not sleeping for 2 nights already, I was in no shape to be making those types of decisions.  I could barely form intelligible sentences at that point.  So I signed off on having the nurses do it the first night.  Coleson was very anxious every time he woke up that night and I went from trying to sleep on the couch to the chair to eventually in his bed with him.  Fortunately we are both small enough to do that and the hospital allows that.  It's been really cold and rainy here in Minnesota since we have arrived and the hospital room was pretty cold so snuggling up to him kept me warm. 

Coleson wasn't very happy every time he woke due to the cast that ran from his thighs and covered his feet, the catheter and all the IVs in him.  He also doesn't like the EKG stickers nor the pulse ox that is stuck to his toe to measure oxygen levels.  As true Coleson fashion, he started lobbying to get things "out" and "off" every chance he could get.  He was able to get one of the IV lines out of him that was used to measure his blood pressure during surgery.  He had to wean off the pain pump and take meds orally to be able to get much of the rest off and out.  Well Coleson never needed more than 1 additional "pump" that first night and was comfortable with just the normal dosage of pain meds/relaxers every 4 hrs.  So by mid-day Wednesday we shut off the pump.  The Catheter could be removed 6 hrs. after this happened but I said we might as well wait til the morning since that would put us in the middle of the night. He had tried to pull on it several times and with his strength and will power I was afraid that if he found the opportunity, he would pull it right out.   He also started asking to go to the bathroom.  Another milestone a patient has to achieve before getting released.  He was pretty scared of the wheelchair like potty that he had to use since the casts prevented him from using a real potty.  However we were able to coax him into it which is a process when you have casts on both legs but to no avail.  I was hoping for a little more sleep that night but Coleson was determined to go to the bathroom and get the cath out.  He couldn't wait til morning so it seemed we tried every hour throughout the night.  Finally at 2:00am, we had achieved the necessary "wait" time after the pain pump was shut off and the removed the cath.  An hour later he finally was able to go to the bathroom.  Another milestone achieved.   

The next morning the Drs. came in and said they would be fitting him with his braces that day.  A day earlier than expected!  I started thinking that we could actually get out of here before spending the whole Memorial Day Weekend in the hospital. So we started the process of removing the casts and getting his new blue braces and his wheelchair was delivered so once we were done with that we were able to take him out and about.  He had also started taking his pain meds by mouth instead of IV so he was only getting the saline in his IV.  Another milestone achieved.  More lines came of him, he was mobile (wheelchair assisted) and now we were just waiting to be released.  I was able to sneak away on Thursday afternoon for a few hours to shower while Aggie, Paul and Peyton stayed with Coleson.  They took him outside and our friends Tasha and Braden along with Tasha's mom, Betty, came for a visit.  Braden is 12 and has Hurlers too.  We met them our first year here in 2013 during BMT.  He also was getting this same surgery.. .again.  Braden has been through variations of this surgery twice before and was back again this summer.  I can't imagine going through this again and hope that we do not have to.

The next morning we got the fabulous news that Coleson could go "home".  I put it in quotes as we are renting a place here so it really isn't our home but it is a "home" none the less and much better than being in the hospital.  The release process always takes a while but by noon we were heading out of the hospital just as Aggie arrived back in Michigan.  Paul had dropped her off at the airport on Friday morning after a quick visit with us. 

So we were able to enjoy Memorial Day weekend at home, learning how to take care of our boy who can't bend his legs.  He is not enjoying his wheelchair but we brought a big running stroller with us and his seems to like that better.  The weather still isn't cooperating much but we have had a few hours of sun so that we could take him outside and play for a while.  We have to do some Range of Motion exercises with him 4x a day so his legs don't get too stiff which he doesn't mind since we have to take the braces off.  He has weaned off all meds already.  I didn't think we were going to get released from the hospital until now and he is already off all his pain meds! 

So it is back to work and reality with some adjustments to our normal life and we anxiously await June 26th when we return to the Dr.s to remove the braces and start to learn how to walk again!  I think the song that Coleson likes to sing, "That Power"  (I've got that Power) sure applies in this case as Coleson certainly has some time of Power to endure surgeries and hospitals and Dr.s time and time again.