I have this hope
As an anchor for my soul
Through every storm
I will hold to You.
Anchor – Hillsong
I started writing this post back in August, a week after David’s first surgery, but wasn’t able to complete it. Words seem to escape me. There was too just too much to process.
So here I am, and two months have gone by. David has completed his first AND second procedure. (To recap – David has a condition called “arteriovenous malformation”, or AVM, for short. ) Forgive me for the length of this post, I am trying to keep it as brief as possible, and I’ll still be honest, my brain is still mush from it all.
Both mornings were hard. The first morning we left by 545 to arrive for our 845 procedure. The second time around, we left at 4am, for a 745 procedure. Needless to say, it’s exhausting for everyone.
I’ve mentioned before that Nemours has people who are called “Child Life Specialists.” I am so thankful for these Child Life Specialists…. Designated people who come in and talk to the kids and help ease the whole ordeal of having a surgery done. Let’s all be honest, surgeries are not fun. If you have ever had one, you know what I mean. But, my heart breaks for these kids that have to go through all of this. Conditions, far worse than David’s, or even just coming in for a fracture or broken bone. It’s still scary. I am so thankful our Child life specialist, Melody, was there BOTH times to help David out. She even let him play her iPad all the way back until he was put under. (Yes, on the operating table, playing the iPad, until he fell asleep.)
David picked Chris to go back with him, so he got all fancied up in his marshmellow suit, and stayed with David until he was asleep. With a few minutes to spare before the procedure started and they took David back, we took a moment to pray just the three of us over our little boy – knowing all would be well and God would be waiting for us in the Recovery room.
David underwent an angiogram and embolization for his first procedure. The first round of his procedure, lasted well over 8 hours, and let me tell you, those 8 hours were tiresome. I wasn’t nervous like you might expect. This procedure has been covered in so much prayer over and over again – I had no reason to worry, only reason to rest in God’s promises for David. I am grateful to have had such an amazing support system of our family and friends – and yes, even everyone on Facebook, constantly sending up prayers and checking in on David. We didn’t have anywhere to go, so we explored the hospital, which is pretty cool, for being a hospital. We were given a nifty pager that would send us texts on how everything was going, most of the time it would just read “David is doing well.” By the end of the night Chris + I were the only two people left on the second floor. It was dark, everyone had gone home and we were still waiting for our little boy to be done. It seemed like it was never going to end.
Dr. Johnson of Nemours in Orlando, first went in to see the “road map” of the AVM and how extensive it was. He checked up into the cranial region and I am so happy and thankful to say there was NOTHING found in that area. Praise God. However, Dr. Johnson and his team did find a second AVM, located under David’s chin. This AVM is still dormant, and has not developed yet. To be honest, it may never develop, however, it will be something we do plan to address before David hits puberty in a few years as his hormones will play a major factor in causing things to grow. Things went far better than we could have hoped. His ear was treated, and several additional veins were closed off using small surgical beads, and an aneurysm was clotted with surgical glue. Almost immediately, some of the red coloring in his ear started to subside.
Here is a front and side view of the AVM angiogram.
As you can see, it’s quite extensive. Those large black arteries you see are 3 or 4 times the size that they should be.
After it was over, we headed up to the P-ICU (pediatric ICU) to wait for David to wake up. I was not ready for what I was walking into. Out of everything, both times, seeing David laying in the hospital bed, with Iv’s in, an oxygen mask, etc – was the worst thing I could have witnessed. Mind you, the surgery is over. But still, it was impossibly hard to see him like that.
The above photo is green by the way, because the kids can change the colors of their rooms. So naturally, we picked green for David.
The next morning David woke up with a full appetite, ready to eat. So we ordered him waffles, bacon, cereal, fresh fruit, milk, and apple juice. He ate it all. ALL OF IT.
Dr. Johnson came in and gave him the all clear to go home – the worst part was getting his IV’s taken off. (Just the medical tape… and you know that hurts!)
His second procedure took place just a few days ago, and over all, was very similar to the first. This time, they worked more on the arterial side of things, rather than the veins. It was still lengthy in time, 4-5 hours, but seemed to fly by a lot faster. Throughout the day Chris + I would dose off here and there during our lunch, watching shows on the iPAD etc. – Hey, a 4 am wake up will do that to you.
Overall, David did great during the procedure – this time after coming off the anesthesia he was very sick and throwing up a lot. Eventually it did subside and he was able to keep food down, and of course he had a huge breakfast again.. with lots and lots of bacon. He will need at least 2 more procedures done after this. One more for the ear region; and then possibly one more in a few years for the AVM located under the chin.
But hey, here’s a look at his ear – if you had seen it before, you can see a drastic and HUGE change in the color, size and swelling. Praise God for that too!
Thank you again to everyone who has been calling, texting, visiting and praying for our little guy. He is hanging strong with all of this, and yes, he is getting tired of all these visits. I am praying that soon this will all be behind us. He has been so brave and tough through it all, and we are so thankful to have all of you for support as we go through this journey with David.