Before we left the hospital 4 years ago, I remember so clearly how Isabela’s cardiologist warned us to never let her cry hysterically for more than 5-10 minutes at a time. Sammy and I were a bit frazzled by it and wondered how we would manage that. We were already frazzled by the fact that we were going home with no nursing care, no monitors to detect vitals and then the whole feeding tube and physical therapy responsibilities. So, what came so naturally to me, was to make sure that Isabela first NEVER know of that restriction (otherwise everything would go downhill with manipulations and bribes) and to create a very structured environment in which this heart condition would be a natural way of life and not an excuse or handicap. So far, so good. She is just this incredible little girl who makes this whole chronic illness thing so easy to live with. She’s fast approaching 5 years old, and she has yet to deny, or complain about any medical restriction or yucky tasting medication. She just does it and can tell you why she has to do it. Many of the medical staff applaud us on how well Isabela is doing, but the truth is, for a very long time now, she has been so independently responsible about her therapies. Even if we wanted to forget for a second, she will tell you that her heart medication needs to be taken and probably re-filled soon.
Today, we went in for her a comprehensive work-up on her heart, minus blood work. She started her visit with a simple, cooperative ECHO (heart ultrasound), weight check, blood pressure, pulse OX (94%), x-ray and a good stethoscope check of her heart by her cardiologist. All was such a seamless process for Isabela, no expectations, no complaints, just a “What’s next Mami? Where are we going after we leave here?” She even slyly tucked in Heather’s stethoscope in my purse! Once Heather delivered all the wonderful notes on her heart, I told her “Isabela just made this whole Fontan Surgery so very easy.” Seriously. The extent of our injuries, so far, has been being under house arrest and making sure that she does not consume more than her daily allowance of liquids (1000 ml). And, oh, another painstaking issue, guarding against those potty accidents. With the diuretic on board, urine gets continuously flushed out for up to 6 hours. We really didn’t want her digressing from potty training by having her wear a diaper all day long, so we have been taking it in stride and literally flying to the bathroom at the slightest urge to have “to go”. BUT, happy to report that she’s off of the medication as of today! We hope we can manage her “dryness and hydration, in its fine balance. Lastly on that list of post-op issues, is her nightly nightmares. Isabela is suffering from horrid nightmares that cause her to wake up frequently, cry out for me and mostly, talks in her sleep as she physically rolls around bed, kicking both Sammy and me. But, in an effort to let Sammy get the most rest since he has to go in to work, I pull her next to me and cuddle with her (yeah, that's painful for me :-)). But, yes, my body is hurting every day. Sammy and I can't think of a better plan. My poor baby. But, again, no biggies for us this time around, this experience is NOTHING like it was 4 years ago. The biggest bonus, we now know that Isabela has a real fighting chance for a long, quality life. What else matters?
So, in short about today’s visit: She looks fabulous, her incision is healing beautifully (but still should continue to be careful on how we carry her), her lungs look so much better than when she left the hospital and her heart function is great, with very little leakage from valves. Plus, her heart size is pretty much like any normal heart! It’s amazing how reflective that data is with her physical disposition. Isabela has walked close to a mile lately at the park, whereas pre-surgery, it was at the very least, 4 yards! Amazing! I can’t wait to see what she does on the monkey bars. For months, she has battled with her failed attempts to swing from them and what comfort herself by reminding us that “after surgery, I will be stronger!” She’s right! However, although Heather thinks she is healing accordingly and physiologically is ready to join the rest of society, she has not quite given her “the pass” yet for physical challenges (no tricycle, no playground, no ball throwing/kicking, so swimming, no jumping). Additionally, because of a really bad flu virus (not Swine) and a GI virus being spread around currently, Isabela is not allowed to leave her controlled environment. Mainly, it’s a school-age child setting we have to avoid. We were planning to finally attend a special family reunion this coming Sunday, but Heather did not think it was in her best interest considering there would be many children. She suggested just a bit longer. As always I will support her advice, although, we admit that we are seeing cabin fever at its best around here …whew!
For now, we are at the drawing board, making plans, let’s see…Crystal comes back next week from college !!!!! We have lots of swimming planned and various fun local activities that she can finally be a part of! This is weird for us…there’s so much to catch up on, so much she was never really able to do alongside other kids her age. YAY!!!!
Lastly.....Happy 50th Aunt Pat and Uncle George! We were so looking forward to seeing you and everyone on Sunday....but soon, very soon!
Love, Brenda
1 comment:
What great news!
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