The good news is that Tommy quickly got off the pain meds, slept through the night from the very first evening and in general has done really well. The bad news is that we are on house arrest due to a massive case of the hives. After chit chattin' with Dr. Niparko for the most of the weekend, (and lots of email pix), it's been determined that he is experiencing an allergic reaction to the antibiotics. I was skeptical at first, but the worse it has gotten and the more widespread, the better I feel. In the beginning it was near his implanted ear, but now he's covered to his knees. He looks absolutely terrible, but isn't itchy - maybe a little bitchy, but not itchy. Thankfully, he's been oblivious to it for the most part. We've been ordered to stay out of the sun and heat...yeah. Just as the weather has gotten nice...no pool was bummer enough.
Fingers crossed that the hives get out of his system soon.
Monday, June 8, 2009
Thursday, June 4, 2009
Wearing a jock strap on your head is way cool
Here's a few pix of Tommy at home sorting through all his loot. We chose to take the pictures while he was comfortable - thanks to tyelonol with codeine.All in all, a very good day. The surgery was approximately 1 1/2 hours, Dr. Niparko and his team got "full insertion" of the implant, Tommy woke up really easily and we were home by noon. The surgery got moved up a few hours which really helped on all fronts. We were at Hopkins by 5:30 am and he enjoyed hanging in the pre-op room filled with toys. He was familiar with the scene from his ear tubes surgery. We were anticipating a huge fight with the big ol' bandage, but he's taking it completely in stride. Dr. Niparko told us to prepare for searing pain and that appears to have been right on. Thankfully, by 11:30 p.m. he was out for the night and has been codeine free since then. It goes without saying, but if you ever need surgery for anything, Hopkins truly is an amazing place. Everyone from the checkin staff, pharmacy, doctors and nurses couldn't have been nicer. The place runs like a finely tuned machine and you can actually feel that you're surrounded by the smartest group of docs around. Sometimes during all the office visits at the Caroline Street Outpatient Center it can feel a bit institutional, but the surgery center is incredibly warm and I swear there's a palpable energy in the pre-op room. Or, maybe I've watched too many episodes of Grey's - surgeons in pre-game excitement mode.
We're really grateful for all of our friends, family (especially Nana who's been here since Tuesday), and all the supportive messages from near and far.
Grazie
Monday, June 1, 2009
ISO Nerves Of Steel
I am perfectly willing to acknowledge my long list of shortcomings. Going through the candidacy process is bringing them front and center for all to see.
Yes, I'm the mom who gives the Principal-pull/lift by the elbow and run out of doctor's offices, (stores, Starbuck's, and restaurants for that matter) when the boys are spinning out of control. Quite literally spinning - as of late their game in public they like to play most often is Planets...as in spinning planets with colliding orbits. Elderly, store displays, or myself (the Sun) should take cover.
Yes, I'm the mom who loses hearing aids only to find them in the bottom of my not-so-tidy purse after calling Jennny and telling her they're "officially" lost. We've been playing this game since freshmen year in college when I'd lose my super fashionable gold hoops on a daily basis.
Yes, I'm the mom that makes lists on my blackberry of all the appointments, follow-ups, fax numbers, therapist info etc only to have my blackberry wash up on the beach in a pile of sand. Somehow, it managed to work - aka divine intervention.
Yes, I'm the mom who has to leave the playground/or go commando at Hopkins because her son has chosen to regress and needs a new set of underwear...See above for lift-by-the-elbow maneuver.
Yes, I'm the mom who screams at the top of her lungs trying to stop the Greco Roman style wrestling that goes on 24/7 to avoid "head trauma."
Yes, I'm the mom who argues with medical office staff who are clearly clueless. This only happens after my kill-them-with-kindess approach fails.
Yes, I'm the mom who occasionally faxes paperwork to the doctor's office on the blank side.
The list could go on and on. I'd like to think I'm also the mom who stops and repeats myself a million times a day so he can hear and understand his world. I'd also like to think I'm the mom who gives hugs, kisses and cuddles while reading endless piles of books. Finally, I'd like to think I'm his mom for a reason. I may be overwrought and impatient, but my internet OCD has uncovered both incredible friends and resources along the way.
The bottom line is that both of our boys require more patience than I was given, but I'm doing the best I can. My elevated blood pressure is a given, but try to cherish the moments in between the chaos.
As we pack for Hopkins, I am reminded that many families we see there have life threatening surgeries and limited outcomes ahead of them. We are so lucky and blessed to have our strong, willful, affectionate, pisser of a little man. We hope and pray that although the road ahead is predicted to be bumpy, Tommy's CI will be another blessing for our family.
It's apparent that my nerves are clearly frayed as we anxiously await surgery on Wednesday. Many unanswered questions remain and still another audiological test for tomorrow. By tomorrow evening as we settle into our hotel room in Baltimore I hope we'll be feeling a lot more reassured than today. As of this moment, we haven't officially picked out his manufacturer, colors for all his gear (which is more of a big deal than it sounds), don't know anything regarding post-op, let alone activation questions. Activation takes place on July 7th with many appointments after that.
We've been preparing Tommy with coloring books, his own koala bear with a cochlear implant and encouraged that he's so excited to "get a CI." The hard part is that we can't fully explain that he won't actually get the CI for an entire month. All he's going to know is that he's wearing a hellish bandage and can't go swimming for awhile. (still yet another question).
Hope to post some post surgery pix later in the week. If you're the praying kind- feel free to throw some Tommy's way.
Yes, I'm the mom who gives the Principal-pull/lift by the elbow and run out of doctor's offices, (stores, Starbuck's, and restaurants for that matter) when the boys are spinning out of control. Quite literally spinning - as of late their game in public they like to play most often is Planets...as in spinning planets with colliding orbits. Elderly, store displays, or myself (the Sun) should take cover.
Yes, I'm the mom who loses hearing aids only to find them in the bottom of my not-so-tidy purse after calling Jennny and telling her they're "officially" lost. We've been playing this game since freshmen year in college when I'd lose my super fashionable gold hoops on a daily basis.
Yes, I'm the mom that makes lists on my blackberry of all the appointments, follow-ups, fax numbers, therapist info etc only to have my blackberry wash up on the beach in a pile of sand. Somehow, it managed to work - aka divine intervention.
Yes, I'm the mom who has to leave the playground/or go commando at Hopkins because her son has chosen to regress and needs a new set of underwear...See above for lift-by-the-elbow maneuver.
Yes, I'm the mom who screams at the top of her lungs trying to stop the Greco Roman style wrestling that goes on 24/7 to avoid "head trauma."
Yes, I'm the mom who argues with medical office staff who are clearly clueless. This only happens after my kill-them-with-kindess approach fails.
Yes, I'm the mom who occasionally faxes paperwork to the doctor's office on the blank side.
The list could go on and on. I'd like to think I'm also the mom who stops and repeats myself a million times a day so he can hear and understand his world. I'd also like to think I'm the mom who gives hugs, kisses and cuddles while reading endless piles of books. Finally, I'd like to think I'm his mom for a reason. I may be overwrought and impatient, but my internet OCD has uncovered both incredible friends and resources along the way.
The bottom line is that both of our boys require more patience than I was given, but I'm doing the best I can. My elevated blood pressure is a given, but try to cherish the moments in between the chaos.
As we pack for Hopkins, I am reminded that many families we see there have life threatening surgeries and limited outcomes ahead of them. We are so lucky and blessed to have our strong, willful, affectionate, pisser of a little man. We hope and pray that although the road ahead is predicted to be bumpy, Tommy's CI will be another blessing for our family.
It's apparent that my nerves are clearly frayed as we anxiously await surgery on Wednesday. Many unanswered questions remain and still another audiological test for tomorrow. By tomorrow evening as we settle into our hotel room in Baltimore I hope we'll be feeling a lot more reassured than today. As of this moment, we haven't officially picked out his manufacturer, colors for all his gear (which is more of a big deal than it sounds), don't know anything regarding post-op, let alone activation questions. Activation takes place on July 7th with many appointments after that.
We've been preparing Tommy with coloring books, his own koala bear with a cochlear implant and encouraged that he's so excited to "get a CI." The hard part is that we can't fully explain that he won't actually get the CI for an entire month. All he's going to know is that he's wearing a hellish bandage and can't go swimming for awhile. (still yet another question).
Hope to post some post surgery pix later in the week. If you're the praying kind- feel free to throw some Tommy's way.
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