There's something about a doctor's appointment that either allows a child to shine...or causes him to be the screaming, melting kid that causes others to gasp. We've been through many phases of this, sometimes even in the same appointment! Our previous cardiology appointment was an amazing example of the latter. Our four-year-old got his weight measured, stood proudly to measure his height, did not hestiate to have his arm "hugged" by the blood pressure cuff (although he hestiated to lay down to do so), but took convincing to have his pulse-ox measured. He eventually cooperated and received a book/cd "treasure" as a reward.
And then it happened. We walked into the examining room and wanted to take his shirt off, he screamed when I lifted it over his head. It wasn't a good sign of things to come. When she wheeled the EKG into the room he became an absolute madman. We stuck the stickers on each other, the technician and I. We demonstrated how the alligator clips clamp onto the tag on the sticker and would absolutely not attach to him directly. She even left and came back a couple of times. And even though he did NOT try to kick her and SPIT on her as he has done to others in the past in his rage, he was an absolute terror...or was he? Was he a terror or was he in terror? That's the thing to all this. As a parent who has been with him his entire life, we've been beside him through surgeries, recoveries, heart caths, a feeding tube, drainage tubes, PICC lines, countless IVs, external heart defibrillators and really awful shots. I couldn't tell if he was just throwing a fit or if he was traumatized by what was going on. It seems so silly that after everything he's gone through that STICKERS would put him over the edge. In all honesty though, the kid HATES bandaids. He will only have a bandaid on his body if he is bleeding quite a bit. He is a strong fighter, just like we always prayed for him to be. But, oh, how I wished he would cooperate. There were bribes, tears (his and almost mine), explanations...we'd prepared him ahead of time for this. He totally refused. We got close once and he screamed, tried to eat his shirt and hid behind me. What do you do at a time like that? I know what I wanted to do. I wanted to force him to have the EKG. My need to know, to absolutely be sure that things were going okay with his heart, overweighed my desire for him to not have the test. The technician and cardiologist made the call. He (again) did not have to have the EKG.
I was so disappointed and discouraged. I'll be the first to admit, I have some issues with doctors and cardiologists. I don't feel comfortable in not knowing how his heart is doing.
Here's what I saw, though. I saw a strong kid, one that was not weak or even had a hint of illness. I saw a child with pink cheeks from his battle, but pink all the same, which is something that wouldn't have happened in the past. I saw a kid who felt good enough to take on the adults around him, and in the end was persuasive enough to get his way. Doesn't sound like a heart baby. He's definitely come a long way, and I am so grateful!
Blaze is not scheduled to have another cardiology appoint with this cardiology unit until April, his last one was this past March. At that time they are hoping he will be mature enough to have an EKG & echo without sedation. I do realize that every cardiologist has their own style of handling things. I like this doctor, he's a good guy. I feel comfortable with him. Our cardiologist in Springfield always had Blaze do an EKG & echo every visit. I wasn't sure if that was because there was always another surgery coming up or since Blaze is done with his planned surgeries if they would be more lax with them. So I asked that cardiology office. If they were still working with us, Blaze would have both tests done every six or nine months.
So...we're seeking another opinion. There is a cardiologist from Cardinal Glennon hospital who comes to our area every month. We've left message with the scheduler and haven't heard back so far. This doctor, though, is one that a friend's child goes to and we feel comfortable with this decision. It's been hard, we've always dealt with Children's Hospital, and in the past year or so we've come to the conclusion that it's okay to switch to CG. There are so many emotions involved with this decision, we'll see what happens with it all. A lot is still in the air for us and for Mr. Blaze's care. We're continuing to trust God's plan for Blaze and believing He has the best in store.
Please continue to pray for us. We are so blessed to have you in our lives!
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