As the year went on, Frankie slowly began to heal. But his journey was far from over. Necrotizing Fasciitis is much worse in a baby, toddler, or child than an adult, because kids that small are constantly growing, which means their wounds and scars stretch, and the grafts start breaking down. As a result, Frankie was taken back into surgery several more times in this last year to fix areas of breakdown. Even worse, as Frankie continues to grow, he will need to be re-grafted many more times. You all remember me telling you how bad the skin grafts are. It is the worst, most unimaginable pain you can think of. They remove layers of your skin from one area of your body and sew it onto another. Your skin is where all of your nerve endings are, and so it literally feels how it sounds. The most intense burning, throbbing, stinging sensation you could ever imagine. This poor child is gonna have to go through this again and again as he grows. How this amazing toddler dealt with this nightmare continues to baffle me. He had to wear a pressure suit practically 24 hours a day to hold pressure on the wounds and grafts, prevent infection, and promote healing. These pressure suits are in no way comfortable. Can you imagine being wrapped up like a tight mummy 22 hours a day? With constant pressure being put on enormous, painful wounds on your body?
Despite all that, she kept getting up. She put her effort into not only helping Frankie, but raising awareness of nec fasc so that others would be helped. She continued to count her blessings, not her hardships. She continued to walk WITH God and not AWAY from him. She started to think things were getting better.
Then everything changed.
About a month ago, Frankie developed redness on his back (where he had originally had nec fasc). He quickly developed a fever of over 104 and immediately, they took him into the hospital. The doctors did blood tests, and his CRP (protein in the body that indicates infection) was extremely high. Even worse, Strep A was present again. (The bacteria that causes nec fasc).
The doctors told Lucy and her husband that Frankie had necrotizing fasciitis AGAIN. A SECOND TIME. Most doctors will tell you that it's just as likely for you to develop nec fasc a second time as it is for any other person to develop it for the first time (roughly 1 in a million chance).
When I saw the message from Lucy that Frankie had developed nec fasc a second time and was being taken into emergency surgery to remove the skin graft on his back and debride the necrotized tissue, I literally broke down sobbing and then got sick. Everyone in our support group started praying furiously, and that's when I put up the Facebook message for everyone to pray for Frankie. Here's a picture of Frank the Tank right before surgery. Thumbs up. Brave little boy.
Frankie made it through the surgery, though not without a ton of pain. Lucy had to fight with the doctors to give him adequate pain medications, because he was screaming and they were only giving him Ibuprofin and tylenol. Can you freaking believe that?? I understand that toddlers can't get the amount of narcotics as an adult, but BABIES FEEL PAIN TOO. Just because they can't tell you in words where and how bad their pain is doesn't mean they don't feel it. (And before you ask, yes, babies and children can have morphine. There is dosing for even the tiniest of babies.)
What the heck kind of hospital would ever do that to a child, you ask? Well, sadly, in the UK where Frankie lives, healthcare is a mess. The hospitals are nowhere near the standards are here in the US.
The thing I'm about to tell you next proves my point.
After Frankie was opened back up, the surgeons couldn't find any necrotized (dead) tissue in his back. They removed some tissue anyways for testing. They figured they had just caught the infection before it started necrotizing or it was in a different area of his body.
In the meantime, Lucy started doing some research and found that Strep A also not only causes strep throat, but scarlett fever. All of a sudden, she put the pieces together in her head....fever, lethargy, redness and rash over parts of his body. OMG, she thought. It's NOT nec fasc. It's scarlett fever.
She immediately told the doctor of her concerns, and they looked in Frankie's throat. Sure enough, there was a good amount of suspect-looking mucus. They took a sample, and yep, it came back Strep A. SCARLETT FEVER.
Lucy and her husband were extremely upset. They're baby had just been put through another useless surgery, unnecessary pain, and would have to have ANOTHER skin graft. Most people would scream and be furious and hateful, and possibly get violent. I have to admit, if this happened to me or our future children, my husband would likely cause bodily injury to whoever was responsible. (kidding.....kind of.)
But as upset as they were, Lucy STILL THANKED GOD. Even in the worst of it, she praised Him. She thanked Him that it wasn't nec fasc and that he had survived. She thanked Him for giving her a son who is as strong and brave as Frankie is. She knew she couldn't let anger hold her down and take up her energy... Frankie needed her. And as hard as that sounds (and is), God is gonna bless her for that. When we trust Him in our trials, HE BLESSES THAT.
People have told me that they are surprised by my continued faith in God and willingness to praise Him, even though I've been through hell and it seems like one thing after another. Let me just tell you, it hasn't always been that easy. There have been times when I've just sobbed and asked God, "why me? I cannot handle one more thing." There have been times when I've been mad. REALLY mad.
And then, I realize that I'm still here. God blessed me in that He let me live. He let me keep my leg. Most people are killed by this disease and/or lose their arms, legs, and other organs. Yeah, I have a ton of scars and most of the muscle from my right leg and abdomen is gone, but I'm one of the blessed ones who survived it, against all odds, and got to walk again, and marry the love of my life. When I think about what it would have been like for Jon and my family to lose me, it quickly slaps me back into feeling blessed, and not resentful.
The Bible tells us to "Rejoice evermore. Pray without ceasing. In everything give thanks for this is the will of God in Christ Jesus." 1 Thessalonians 5:16-18
This doesn't necessarily mean that we are to thank God for horrible things and tragedies that come our way. It means that we are still find joy in our lives no matter what is happening because we have God and in Him we can overcome no matter what the Devil throws at us. God doesn't want us to thank Him for the bad things, because He didn't send them...Satan did. He isn't the author of evil. But if we become bitter and angry and that becomes the focus of our life, we aren't doing what we are supposed to be doing...which is loving each other and loving Jesus.
As far as Frankie goes, he too continues to be a chosen miracle of God. He survived ANOTHER surgery a few days ago to graft more skin onto the re-opened wound on his back. (a 10 inch by 7 inch wound, mind you.) He did amazingly well, and our prayers were answered. Not only did he live, but his pain has been managed relatively well since then. God can give way better pain medications than the pharmacy can. Somehow, Frankie has seemed to be almost free of pain since the skin graft. Here, take a look for yourself. Here he is playing in the hospital playroom, just a day or two after the surgery.
Even when he's tired, he's still strong enough and doing well enough to want to play.
Frankie is still in the hospital as I write this. They are treating his scarlett fever and managing his new wounds from the surgery. Please, continue to pray for this little guy. He needs us. Pray that he doesn't feel pain. Pray that he doesn't remember this someday. Pray for his parents, as they are stressed and tired, but still fighting every minute for their son.