Moving Forward

I wish I would have written this post sooner, but time got away from me.

It has been over 2 months since McCoy had his removal surgery, but hardly a day goes by that Dallas and I don't think about the blessing it is to be done with our removal journey.

On July 5th, after Dallas got home from work, we celebrated the end of McCoy having his expanders, by saying goodbye to his "bubbles" in a fun way:

Enjoying his new toy "bubbles" in his mini pool, since he's saying goodbye to the ones on his back ;)

Then we bathed him one last time, and oddly enough, felt kind of sad knowing that tomorrow his expanders would be gone.  They had become a part of him, in a way that's difficult to describe, and it felt like we were about to say goodbye to a piece of him that had become special to us.

Dallas gave McCoy a blessing, and then we put him to bed. After he was asleep, I gathered the last few things to add to our hospital bags, and then Dallas and I prayed together that the next day all would go well, and that no matter the outcome - whether the entire nevus was able to be removed or not - we could feel peaceful and happy.  We recognized how blessed we'd been up to this point, and it felt good to finally realize that we could truly be happy no matter what happened.  As long as McCoy was safe and recovered healthily, we would be okay.

We woke the next morning and left for the Children's Medical City Hospital at 6am.  McCoy stayed awake for the whole drive, and loved watching all the lights in the dark morning light outside the car windows.  He stayed happy and content as we checked him in, weighed him, and changed him into his gown.  As we moved into the pre-op room, he began getting tired and fussy.  Luckily we had the ipad, and treated him to a musical show while we waited to meet with Dr. Burns.

Even though we've done this before, it does not get any easier sending your baby back to surgery!

Finally Dr. Burns arrived, and as we met with him Dallas and I both felt peaceful.  He didn't say whether he thought he had enough skin to be able to remove the whole nevus or not, but he said he'd do his best taking all factors into account.  He also said he wouldn't know what the incision/scar would look like until he actually got into surgery. He did however, mention that he was sure this wouldn't be our "last rodeo", as he called it.  He said that in a year he wouldn't be surprised if McCoy needed a scar revision surgery.  Compared to insertion and removal of expanders, that type of surgery would be a cinch, but he did say that we would probably want/need it in a year.  But we didn't focus on that or discuss it, he just mentioned it and we moved on from there.  After all the medical questions were answered, we handed McCoy to a nurse who carried him away to a room where they would mask him and sedate him, before IV'ing him.  When I first handed him to the nurse, he was fine.  But as the nurse started moving away from us, he began crying.  It was heart breaking.  However, the timing ended up being good for us - mom showed up at the hospital, and Dallas needed to head into work, so I joined my mom and we left to grab some breakfast to eat while we waited to receive a text from the OR nurses with updates regarding the surgery.

We had just barely ordered our food when I received a text saying the procedure was closing, and the surgeon would be out to meet with me soon. We were shocked! And scrambling around trying to get out of there quickly and back to the hospital.  When we were still 5 minutes from the hospital, Dr. Burns himself called me and said he was coming out to the waiting room to discuss with me how the surgery had gone.  I felt ridiculous and horrible that he would be waiting! The surgery had finished WAY faster than we had been told, and much faster even than the insertion surgery.  I couldn't get over my surprise.  All in all McCoy had only been back in the OR for less than 2 hours.  I rushed up to the waiting room, and immediately Dr. Burns said, "I was able to remove all of it, and it couldn't have gone better."  He explained that the scar looked kind of like the Hurley logo (a "u" with an upside down "u" underneath it).  He said McCoy would be in much more pain this time than he was last time (which worried me, as I had not expected that.  Most moms I'd connected with whose children had already undergone removal, said that removal was easier than insertion, so I was kind of planning on that).  He explained that McCoy had 2 drains, and they exited his body on each hip, so that he could sleep on his stomach or back comfortably.  He also said that he had a foam type of board on his back, with a dressing around his whole midsection to keep everything kind of held together.  Then he said we would meet in a week for him to check the healing of the incisions, and that if his drains were ready to be removed before that, we could come in and have the nurses do that beforehand.  He hugged me and said call if I needed anything at all.

I was so elated.  I could not believe that Burns was able to remove it all!!! It's like, deep down in my heart I knew all along we were going to receive that miracle, but still, in the moment you discover what huge blessing you've been given, it is so humbling and unbelievable.  I immediately called Dallas and told him the wonderful news.  Mom met up with me, and we waited shortly until we were able to go to the recovery room and see McCoy.

Holding him in my arms again felt so good.  He was so small and felt so different, but I was so happy knowing he would never have to go through such a major, painful surgery again.

McCoy struggled a lot in recovery.  The nurse there was wonderful, and very on the ball.  She gave him as much pain meds as she could, and kept alternating meds as needed, so that he could have as much in him as was allowed.  McCoy was moaning constantly and kept continuously crying from the pain.  We could not seem to get a handle on it.  The nurse explained to us that because the meds she had given were not enough to make him comfortable, if we wanted to get on top of the pain with stronger meds, we would need to be moved to the PICU (Pediatric Intensive Care Unit).  They wheeled McCoy up in his hospital bed.  When we got to our room, one nurse was giving us a difficult time about keeping McCoy in the bed he came on - they wanted to move him into the particular bed that was in the room already.  He was in so much pain, our recovery nurse that had escorted us was pushing to be able to keep McCoy where he was.  Thankfully, a head nurse came in and said he could stay put in the bed he came in.  I was so grateful.

All of Thursday was very difficult.  McCoy was moaning in pain for basically the entire day.  We kept trying medicine after medicine, hoping to get him comfortable.  Moving him in any way obviously caused him discomfort, but I tried to hold him and nurse him.  He didn't want anything to do with it.  (I thought being bit before had been painful...well picture a poor baby in pain, frustrated and tired of feeling so miserable, who clearly does not want to nurse, biting his mom.  Yeah.  Excrutiating).  But it didn't phase me, I felt so sad for how much pain he was in, he could do whatever he wanted and I would not mind.  I tried over and over patiently, but ultimately it wasn't until the next day that he really latched and ate much.  Even then the nursing was difficult and not the same as it normally was.  Anyway, so all day we kept trying different medicines, tried a million different concoctions, trying to get just the right "mix."  He was put on a continuous pain drip (which is so intense and has to be closely monitored, that it can only be administered on the PICU floor), which finally seemed to help.  On top of that, we kept giving him other pain meds, and of course his antibiotic.  The nurses said if any of us adults were given as much medicine as McCoy had been given, we'd be knocked out cold.

By the evening, McCoy was resting.  Mom and I took a break and went home for a shower while Dallas took over.  While we were gone, McCoy woke up!  He actually opened his eyes.  By this point, he was extremely swollen all over his body, so it was very difficult for him to open his lids and see anything.  But seeing his little peepers was the best feeling ever!  We quickly grabbed some books and Dallas read a story to him.

We ended up staying in the PICU the rest of Thursday and all of Friday as well.  We were discharged Saturday morning, after we were able to wean McCoy off of the drip in his IV.  We had switched him through the night over to medicines we could go home on, so by morning we were definitely looking forward to coming home.  We had some unpleasant experiences with nurses that added greatly to our stress and anxiety.  However, Dr. Burns' PA's were wonderful! So nice, very thorough, and extremely personable towards me, and McCoy's unique surgery/recovery.  We spent some time reading to McCoy and working on nursing again.  We also fed him some puree's to help with any potential nausea as a result of all the medicine in his system.

Sitting up and AWAKE! Hooray!

I learned how to empty his drains, we packed up, changed McCoy into his own clothes, and a nurse wheeled me (in a wheelchair) with McCoy in my arms, to our car.  This time going home felt one hundred percent different than the first time.  It was a light, happy, optimistic feeling.  I was so excited to get him home to his own familiar surroundings, and not be connected to all the annoying cords, or be bombarded by nurse faces popping in every second.  (In fact, when McCoy finally was coherent and awake, he would cry every time a nurse came in and got near him.  He definitely was not loving their presence anywhere close to him).  We buckled McCoy in his car seat (I originally was going to hold him for the drive home, but he didn't seem to mind, and the nurse who wheeled me down was not leaving until she saw him securely in, so we ended up just leaving him in it).

McCoy quickly got back to himself once we were home.  We were able to sleep him on his back, and he rested well.  Getting him to take his medicines was much easier this round!  I had the meds flavored, and I think that helped.  We usually timed it where he would be just waking up, and kind of out of it, and we'd slip the syringe into the back corner of his mouth before he really knew what it was, and he'd swallow it pleasantly (for the most part).

I prepared in advance with some things I hoped would help keep him entertained while limiting his movement.  I also didn't want him to get frustrated if we were always trying to hold him while he was recovering.  He really liked the swing:

Playing up to a breakfast-in-bed tray while sitting in his bumbo (never thought he'd fit in that seat again!)

We woke up one morning shortly after McCoy's surgery day to a surprise on our front lawn!  Members from our ward heart attacked us, and on each heart was a message from someone.  Many we didn't know, but some we did.  There were even messages or pictures from primary kids, wishing McCoy to get well soon, hoping he'd feel better quickly, prayers and well wishes, and so on.  It was one of the sweetest things that's ever been done for us.

Despite our best efforts, McCoy's back began splitting at the intersections where his incisions met.  Dr. Burns said he was 99% positive that would happen, it is basically unavoidable.  But I still feel good about the precautions we took, as it could've been worse had we not.  Here is what his back looked like around 1 week post-op.

To others, his scar may look not good.  But to Dallas and I, we know just how amazing it really does look.  After seeing countless other children with removal scars (from the Nevus Removal Group on FB) we have a better perspective on just how lucky (I should say blessed!) we are with McCoy's results!  We celebrated by having dinner and special drinks with Shayla and Swede in our home.  It was a lovely time!

McCoy's first outing post-op....I promise he was happier to be out and about then his cute little solemn face shows ;)

So now, we're back to "normal" life.  No more weekly fills, no more worries over expanders.  With a small rash being the only thing we have to keep our eye on, along with applying a scar recovery gel to his scar, we're able to do and focus on so many other things now it seems like.  The timing of everything turned out perfectly, and even though Mom could only be with us to help for a few days, McCoy bounced back so well that it was fine.  He handled the removal of his drains okay, and he's probably just thrilled to never have to go back to that office (at least not for a year...Dr. Burns wants to potentially do a scar revision surgery in a year...but we're not crossing that decision bridge for a while!).  Now that he doesn't have all that extra weight on his back, McCoy crawls and rolls around freely, and pulls to standing in a cinch.  I can tell he loves his new mobility.  With the surgery behind us, we focused on getting ready for McCoy's special first birthday, with all the family from both sides coming into to town.  What a special day it was!  Again, the timing could not have been better.

Back in one of my very first posts, I mentioned the story in the New Testament (John 9:2) regarding a blind man, and Christ's apostles questioning who sinned that the boy should be born blind.  Christ's response was, "Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."  Looking back over this almost 6 month journey (well, plus the time from his birth with all the worrying, the doctor visits, MRI's, researching, and so forth...making it nearly a year long process), Dallas and I can testify that the works of God were made manifest through McCoy!  Miracles are real, and glimpses of Heavenly Father's hands can be found in all the facets of our lives!... but maybe most particularly in the darkest hours are God's works most abundant.  He loves us so much, and He hears our every prayer, our every thought, and He understands our desires, even better sometimes than we do ourselves.  He gave us our miracle - and we will always be grateful for the way He enabled things to turn out.