Wednesday, March 30, 2016

One Month Post-Op

Well, we've made it through nearly one whole month since surgery, to include 3 fills to this point.  It feels like it has been slow going to get where we are now, but we're thankful for all the progress McCoy has made.  We already have a lot of good skin as a result of the expansion, which helps get us through the difficult fills each week.

Once a week we head to Dr. Burns's office in downtown Dallas. So far, both Dallas and I have been at all the fills together, as well as Mom being there for the first one. The first fill, so far, was the best. I had a singing video playing children's music on youtube right before the nurses began expanding the first expander, and as they poked him he didn't even cry. By the second poke, he did cry out, but soon settled back then. Then it was kind of down hill from there. But it went quicker and better than we expected, and it made me feel more optimistic for his second fill. The first fill they were able to get 20 cc's in all 3 top expanders, and his 2 side expanders. The bottom they filled with 50 cc's. McCoy settled down right after it was all over, and Mom drove us home while I sang him to sleep in the car. McCoy was fully back to himself by the next morning. For his second fill, things didn't go as well. We arrived early to our appointment only to be kept waiting for 30 minutes. By then it was past McCoy's nap and he was tired and not in an ideal state for what was coming. We had a new nurse assisting Ly (Ly is McCoy's regular nurse who actually does the fills) and things just weren't going the way I'd hoped - McCoy wasn't distracted well and I felt sad as he screamed the entire time. One time they got the needle in one port only to have him lash out causing it to pull out, thus them having to re-stick him. It's difficult enough watching McCoy go through pain, but when it's pain that could've been avoided, it's even harder. But there's nothing that can be done about those mishaps, I suppose, and sometimes accidents just happen. Gratefully, Ly is wonderful and we've always felt comfortable with her, she does a good job and we feel she always tries her best.

Today was McCoy's third fill was better and worse in some ways. I was able to distract him with the children's singing video and he didn't notice the first poke. Dallas held him and stayed calm, which was wonderful. I continued trying to keep McCoy from noticing what was going on, but even as it looked as if he was interested in what I was doing to distract him, he continued crying relentlessly. Apparently the needles kept coming out as they were trying to fill different expanders, so they had to re-poke him several times. Today everything took much longer than the first 2 times. It was emotionally exhausting, but again, the minute it was over, McCoy calmed and snuggled into Dallas. As we drove home, he didn't cry as I sang to him, and even fell asleep. By the evening, we were able to enjoy going on a walk and blowing bubbles on the back porch.

So, to this point things are looking good in general. There is one small area of concern regarding 2 of his expanders - he has a rash (well, what looks like a rash) in small areas on 2 of his expanders, the bottom expander and side right one. At first we didn't think it was excema, but now we think it might be. We are moisturizing it with CeraVe, which should help, but we also bought hydrocortisone which we will test in a small area first, then use if needed. We definitely do not want anything occurring on his expanded skin, as any skin breakdown could be potentially devastating to the whole removal process. (Skin breakdown can cause infection of the expanded skin, or the tissue expander can begin to actually poke through the weak skin). Because of these 2 areas that are dry and red and bumpy, today they only put 35 cc's in the bottom expander, but still filled all other 5 with 20 cc's as they had in the past. The expanders now seem so big, it's crazy to think they will keep getting bigger than they already are.  Apparently, Dr. Burns will check in with us at a future appointment in about 4 more fills, at which time he'll measure the amount of new skin we have and he'll be able to give us a clearer idea of how much more skin we'll need, and how long it may take to get it.

Dallas and I are continuing to fast daily that we may receive the miracle we've desired from the very beginning - that this whole process can go as ideal as possible, quickly, and that we may be able to remove the entire nevus in one round. It's worth asking for, even if Heavenly Father's will may be different. We can continue to hope. Obviously, there are many lessons we can and are learning from all of this, and we'll just wait and see how this all turns out.  (I could mention an amazing message that applies here and has helped, from the August 2015 Ensign called, "Patience: More Than Waiting." Look it up if you're in the mood for a good read :)).

Below are some progression pictures of McCoy's expanders. Some of you have mentioned it looks painful and sad, so don't scroll down and look if you don't want to. I'm putting them here for our own record more than to show it to you.  It feels uplifting in a way to see the progress we've made.

Weighing in pre-surgery

Checking in for surgery, March 2, 2016

Getting ready to "gown-up"



The lights above McCoy's bed were his favorite

Moments before they took him back to the operating room

We found a place to spread out while anxiously waiting during the surgery
2 hours post-op (still not awake from anesthesia)
First moment back in my arms after surgery
This is how he slept for days after surgery - on someone's stomach/chest
Finally home and recovering

Snuggs seemed to sense McCoy would like having her near
Outside for the first time in days, and loving it, of course

After struggling to get medicine down him, we rewarded him with breastmilk from his favorite cup

Auntie Briana came and helped take such good care of McCoy - wheeling him around the house in this chair
One of his first smiles!



Lots of sleeping in the rocking chair

Out for a walk for the first time
Getting back to himself
The best gift ever after difficult days
First bath post-op, and loving it! (in the kitchen sink)


Grammy came back for McCoy's first fill


After his 2nd fill (which I had to prep him for all alone) I spoiled him with his favorite song video - he deserved it!
After his 3rd fill, McCoy enjoyed playing with a new toy. Anything for this tough lil love!

~ Expander Progression Pictures ~










Wednesday, March 23, 2016

Surgery and Recovery

Early Wednesday morning, before McCoy had woken at his usual time, I went into his nursery and gently picked him up, snuggling him as I carried him to the car. Dallas had everything loaded and the car running and warmed up.  I jumped in the front seat with McCoy in my arms, and cradled him on the drive to the hospital (don't report me!).  He was wide awake and enjoyed watching the lights pass by from cars or street lamps.  It was an emotional drive, and one that ended all too quickly.

We arrived at the Children's Medical Hospital in downtown Dallas at 6am.  Check-in was pretty quick - they weighed him, measured him, and asked lots of medical questions.  Dallas and I both would randomly burst out in tears, and holding the emotions at bay was difficult as we gowned McCoy up and got ready to say goodbye.  The nurses were all very kind, and we felt peaceful, despite the anxiousness looming all around of what was coming next.

We were taken down to a pre-op room, which was basically a big room filled with a bunch of curtains dividing us from other patients waiting to have their own surgery.  Here we met our anesthesiologist and also talked with Dr. Burns (our plastic surgeon).  Luckily up to this point, McCoy was very comfortable and hadn't had to be IV'd - apparently they would do that after he was in the operating room and put to sleep with a gas mask.  A tender mercy that he wouldn't have to feel any pain.

Finally, a nurse came to get McCoy.  Transferring him from my arms to hers was the hardest thing up to this point.  He seemed a little leery, but thankfully did not cry.  We watched him be carried away and didn't leave until he had rounded the corner and was out of our sight.  Now, the waiting began.

It felt like FOREVER.  We kept watching the monitor where McCoy's name was listed with regular updates on his status.  To kill some time, and because many other moms who've gone through this gave me the advice to eat and stay hydrated, we went and got some breakfast.  Afterwards we came back and tried to lay down and rest while we waited, but obviously could not get to sleep.  Finally, on the monitor it updated to say that McCoy's surgery was finishing up ("closing", as they called it), and that he'd be in recovery soon.  Then I received a test message from the nurse (who previously arranged to update me) saying he'd be in recovery within the next 30 minutes.  Well, 30 minutes came and went and we were so anxious to be with McCoy, but Dr. Burns still hadn't come to talk with us (which would occur before we could go to recovery to be with McCoy).  It was killing us! FINALLY, Dr. Burns came out and he told us how the surgery went.  He said McCoy did very well, didn't have any bad reactions, and lost an extremely small amount of blood - less than usual, which he said was excellent.  He encouraged us and even hugged me. We really are so lucky to have found him, and I told him how blessed we felt that he is our surgeon, and that he did such a wonderful job with McCoy.  Then, we waited some MORE (enough that I made Dallas go talk to someone to find out how much longer! which he didn't love of course haha), and eventually a nurse came and got us and escorted us to the recovery room.  When we walked up to McCoy laying face down on the bed, we both could not keep from crying, and a heaviness and weight settled upon us.  I can't even put into words how those next hours felt, but I'll never forget the feeling of wishing I could un-do everything that had just been done.  A mother (and father for that matter) should never have to see their child the way we saw McCoy then.

To skip all the sad details, McCoy struggled coming out of the anesthesia.  We learned later it may have been because he was given too much of a particular drug right before he was waking up from the IV anesthesia.  We'll never be certain.  But, thankfully we had two amazing recovery nurses that took excellent care of us.  We were moved up to his permanent recovery room, but once up there, after they tried transferring him to his new bed, his heart rate plummeted and his breathing was not within the numbers it should've been, so we were moved back down to post-op recovery until he became more stable.  I was grateful.  After the episode of him popping his head up, screaming out and proceeding to hold his breath until he literally turned purple (which was the worst thing I've ever seen and experienced, and literally almost scared me to death!), I was very glad to be surrounded by 2 nurses who wouldn't leave our sides until McCoy was stable again.  Eventually, he was doing better (after we picked him up and held him, which I was initially frightened to do), and we went back up to his recovery room.  Our nurse (who we discovered was LDS, imagine that!) was wonderful and took good care of McCoy and us.  We took turns holding McCoy, Dallas and I, until my mom arrived later that night.  Swede came over and administered a blessing with Dallas to McCoy.  Dallas said it was like the millionth blessing he'd given McCoy that day :)  We are so grateful for the power of the priesthood, and know that it, along with the many prayers on our behalf, are what got us through his surgery and recovery, especially that first 24-48 hours.  McCoy slept on Grammy's stomach while I tried to get some rest, and Dallas went home to get a good night's rest, as he had work the next day.  Halfway through the night I took McCoy and had him sleep on me.  Holding him and maneuvering him to eat, or change his diaper, was extremely difficult. He always screamed out in pain, but his voice did not sound like himself.  All the chords attached to him were very annoying.  He was also very swollen and did not look like himself, hardly at all.  But thankfully, he actually rested a lot better than I had anticipated, and I felt strength and prepared as we were discharged from the hospital the next morning.  Dallas came and got me (mom had gone home earlier that morning), and I once again held McCoy in my arms as we drove home.

Getting McCoy to take his medications (antibiotics for 5 days post-op, 3x a day, and pain meds every 4 hours), was a fiasco!  He got smarter and trickier and would hold the medicine in his mouth a moment after it was given, only to spit it all out seconds later.  He hardly got any medicine down him sometimes, but I'm sure Dallas and mom and I will always remember the jumping up and down, dance-on-our-head, do-whatever-it-bloody-takes moments to get him to swallow it! :)

Day by day, McCoy improved, and the first time he graced us with a smile was like a gift from heaven, seriously!  There were only tiny moments that first week that we were given such a breath of fresh air - most the time he was sad or tranquil and had to be held 24/7 - but those moments helped us make it through.  We all also had a lot of sleepless nights and days, having to rock McCoy or let him sleep on our stomachs.  But eventually, he became more and more himself, and it finally felt like the worst was behind us.

Through this all, I cannot deny the power of Heavenly Father's love that I felt envelop us, and the strength that He gave us to get through. All of you helped us in one way or another - whether it was holding McCoy, sending uplifting text messages, praying for us, thinking of us, coming over on Sunday and making a gourmet dinner and cleaning it up, rocking McCoy, loving him, sending words of encouragement, and so forth.  It all helped us more than we can even express, and we're so grateful to have such a wonderful family that buoyed us up and gathered around us in our time of need.  We love each of you, and are so grateful for the love you have for McCoy.

Tuesday, March 1, 2016

One more day

It's hard to believe McCoy's surgery is tomorrow.  These "last" moments before the surgery have been some of the best!  McCoy and I had fun-filled days - we read lots of books together, took several walks in the perfect weather, swung in McCoy's little-tike swing outside, rolled around on our new rug (yes, that's right, McCoy enjoys rolling from back to tummy now!), cooked in the kitchen together (okay, McCoy sat in his Bumbo on the kitchen island while I cooked right next to him :)), had a picnic in our backyard, had fun introducing McCoy to his first solid food (sweet potato), fell asleep together in bed, with Snuggs beside us, and of course snuggled lots!  I'm so grateful for all the fun and relaxing we did together, it seems like McCoy and I bonded in a new/deeper way these past several days.  I love him so much.

morning shenanigans with Snuggles