two thumbs up

June 16, 2010

3:45 AM - my cell phone alarm went off for the first time.

3:50 AM - I groggily got up and jumped in the shower.

4:10 AM - I headed downstairs to gather everything, got Lucas's ear ready and went to wake him.

4:25 AM - I opened Lucas's door and he stood up and walked over to me... not what I was expecting!

4:35 AM - We were on the road and only 5 minutes late. Not bad for us.

5:55 AM - We arrived at the Children's Hospital of Philadelphia. It's unbelievable that one day it takes us 2.5 hours and the next day 1 hr and 20 minutes.

6:00 AM - We arrived at cardiac registration. We no longer go to the regular surgery registration because Lucas now needs cardiac anesthesia.

6:30 AM - They finally called us back. It was a little annoying to have to arrive by 6, but not do anything until 6:30. Our nurse's name was Lauren. We enjoyed chatting with her all day. Lucas was in really good spirits, and not afraid at all of his surroundings. He enjoyed watching Elmo on his personal tv.

6:45 AM - The IV team arrived to place an IV in Lucas's foot. During the last two surgeries, they put Lucas under before putting in his IV and I was VERY glad for that. I was not pleased with the reverse decision, and I made it clear to the nurse, especially considering what a hard stick he is. Luckily, they found his vein on the first shot and he only shed tears for a few minutes. I was hoping for none though.

7:05 AM - The nurse gave him "giggle juice" and he went to his happy place. He just chilled in his bed and watched Curious George.

7:15 AM - The orthopaedic surgeon came to chat with us and examine Lucas's newly triggering right thumb. Nate and I signed off for his right thumb to be fixed too. He signed Lucas's palms and away he went.

7:30 AM - They came for him and away he went. He didn't even notice that he was leaving us. I guess that was a good thing. We decided to send him away with his ear. We thought it was important that the doctors and nurses be able to talk to him. I was a little nervous, but they assured me they wouldn't lose it.

7:40 AM - Nate and I went to the cafeteria to get something to eat. We decided to just eat there. Breakfast was really good. They had made to order omelets and pancakes. I was thoroughly impressed.

8:05 AM - We headed back to the cardiac reception to wait for news. We thought we would hear by at least 9 AM.

8:50 AM - We spoke with the surgeon about the thumbs surgery. He reported that everything went well, but his left thumb might take some time to completely straighten out, as it has been bent for so long. He said that neither thumb will ever trigger again! Lucas was now having his heart echo done.

10:30 AM - They finally came to get us. The heart echo must have been really thorough!! I'm not complaining though. Lucas continued to sleep for another hour, although he kept wiping his face in his sleep. Very strange.

11:30 AM - Lucas woke up happily for about... 1 minute. Then, he was absolutely hysterical. He wanted his hand bandages OFF and nothing would calm him down. Nothing. He kept flailing his arms, so I held him, Nate held one arm and the nurse held the other arm. It was a long 15 minutes. We gave him some oxycodon and he finally took his sippy cup and calmed down. I've never seen him act like that before in my life. I think he was in a strange state with the anesthesia. I'll be happy if we never experience that again.

12:00 PM - We started getting ready to leave. Everything looked fine and Lucas had been drinking and keeping everything down. Now all he had to do was pee. No problem... or so we thought.

12:30 PM - Still no wet diaper.

1:00 PM - Still no wet diaper.

1:30 PM - Still no wet diaper.

2:00 PM - Still no wet diaper.

2:30 PM - Still no wet diaper. Lucas was very active this whole time too. He entertained the nurses all afternoon with his funny sayings and actions. Even though he was tired, he would not sit still for more than 20 seconds. At least he wasn't crawling out of his bed, but he did keep trying to stand up.

3:00 PM - Still no wet diaper, but Lucas wanted to be held by me. Lucas's bladder was visibly very full, and he was doubled over in pain. We debated whether we should catheterize him or not. Lucas still needed to pee on his own. But, since he was in so much pain, we decided we needed to help him. So, the nurses got all of their materials out, put on their gloves, I laid him down on the bed and.... we had a WET DIAPER. We were thrilled. So, we started the discharge process.

3:20 PM - We were just waiting for the nurse to bring us a dose of medicine for Lucas for the road, and Lucas kept asking for the wash basin. But, it was full of water, because we kept trying to put his feet in it to make him pee, so I couldn't give it to him. I guess he remembered what it was for though, because he proceeded to throw up everywhere. I'm telling you, he's one smart cookie.

3:30 PM - We left the cardiac floor and headed to the 1st floor to pick up his meds. Lucas enjoyed the atrium. It's really a beautiful hospital. I really got the feeling that "hope lives there", just like their motto says.

4:00 PM - We left the parking garage and headed to the Schuykill. Traffic was pretty bad, and what should have taken us 20 minutes took us an hour. Thank goodness Lucas was sleeping.

5:40 PM - The gas light went on. We had forgotten to fill up our gas tank after Tuesday's CHOP trip. Luckily, we were only 3 miles from the service station. We were seriously L.U.C.K.Y.

6:00 PM - We were almost to our exit on the turnpike, but we were engrossed in a story on NPR and we missed it. We're not talking like "oh just get off at the next road and turn around." We're talking "next stop: Harrisburg, PA." We had no choice. At least Lucas was still sleeping.

6:40 PM - We finally arrived at our humble abode. I went to sit down on the couch with Lucas and he immediately wiggled down and asked to watch "toys" (Toy Story). Then he requested to "build towers" (play with his legos and build towers).

9:00 PM - Lucas got a sponge bath, because there will no bath until his bandages come off in a week. I don't know what we're going to do!

9:15 PM - Lucas got one more dose of pain killers and went to sleep.

9:45 PM - I went to sleep. It was a loooooong day.

I didn't hear from him again until 8 AM, although we checked on him several times. Today he is back to his normal self AND he's leaving his bandages alone. He's doing so well that we haven't even given him Tylenol today. It's over. No more thumb surgery. Summer can begin. I give that two thumbs up!!! We are celebrating tomorrow with a trip to Dutch Wonderland. Hopefully he can keep his hands dry!

and the surgery saga continues...

Summer is finally here! But somehow it doesn't feel like it yet. My stress level usually dissipates on the last day of school, but it's still here. Why? I'll tell you.

Yesterday started the first day of my 3rd graduate course in 6 weeks. It's a really great course, and I'm learning a lot, but it's still a lot of work. When the course is over, summer really begins for me, because I don't have to think about school again until August. AMEN.

Lucas's thumbs surgery is finally going to happen tomorrow. That's not a typo, by the way. His trigger thumbS will now be fixed, we believe. Last week I noticed that his right thumb is now triggering. Go figure. We haven't seen the surgeon again, so he'll evaluate when he sees Lucas tomorrow, but he's likely to fix that one too. I guess it was a hidden blessing that surgery was cancelled twice already. We are hopefully avoiding another surgery.

Last week I got a call informing me that Lucas now needs cardiac anesthesia. I was pretty surprised and upset by this, because it's an indication that Lucas's heart condition has either worsened (and we weren't really informed of it) or his condition has been interpreted differently. The most recent cardiac letter (4.5.10) states that the reguritation (which causes the audible murmur) is probably closer to moderate than mild. I believe that's the reason for the change. Nonetheless, Lucas had to attend another pre-anesthesia appointment this morning to cover that. It was rather anti-climatic after traveling 2.5 hours to Philly during rush hour, but I got to drop off his referrals and make sure that everything is ready for tomorrow.

On the bright side, whereas the first time Lucas's surgery was cancelled he had a 12:30 PM arrival time, tomorrow we have a 6:00 AM arrival time. Yes, we have to leave our house by 4:30 AM (no fun!!!), but I don't have to deal with a hungry/thirsty toddler for 6 hours prior to surgery. Lucas's schedule shouldn't be thrown off much because of this surgery time either. I hope.

Tomorrow we're planning a three-fer: three procedures in one surgery. Left thumb, check! Right thumb, probably! And a heart echo while he's still under anesthesia. This way they can get a really good reading of his heart and we can have a baseline for the future.

Please pray for Lucas's safe and successful surgery tomorrow. It's going to be a long day...

not quite as expected...

Lucas woke up Tuesday morning with pink eye. Yes, my healthy boy, who has been illness-free since before Christmas, woke up the day before his long-scheduled thumb surgery with pink eye. Bringing bacteria & infection into the OR is not a great idea. Surgery was canceled, and the perfect timing that I had planned for was thrown away with it. Had it been a few days beforehand, we would have been good to go. What crappy luck. Can you tell I'm a little upset? Understatement. I don't know yet when surgery will be rescheduled. His surgeon only operates on Wednesday afternoons, and that's terribly inconvenient with a full-time work schedule. We might just wait until June now.

Yesterday we headed to CHOP for Lucas's 1-year post-CI evaluation. Yes, 15 months after activation. Why you might ask? Because we had to cancel because of snowmageddon, and this is the first we could reschedule. Thank goodness we didn't have to reschedule again because of pink eye (the pediatrician cleared us). Everything went well, and we even ran into Mikaela and her family! It was a little stressful, because Lucas had his own agenda all day, but he performed decently well for his speech eval, and we were able to get some booth test results. His audi changed his map a tad, and reported that electrodes 11 & 13 still need to stay deactivated, although no more need to be turned off (knock on wood). We head back in 3 months (right before we leave for LA) for an audio check.

On the bright side, during our doctor visit this week, we were able to get some tests/paperwork completed for our trip to JTC this summer! Lucas got his TB test, and I got copies of his immunization records. Now, Nate just has to get his TB test (because I already I have mine), and we'll be ready to spend July in sunny southern California. So excited! We're looking forward to meeting Nolan & family too, in addition to the program!!

We're enjoying the beautiful spring weather this Easter weekend. Monday we are headed back to CHOP for cardiology. This is our 9-month follow-up visit. We had to switch providers, because Penn State Hershey no longer accepts our public insurance. So, we are now going to see a cardiologist at CHOP. I've been wanting to migrate all of his specialists there anyway, so it kind of worked out. It will make future surgeries much easier for getting cardiac anesthesia clearance too, since for each of his surgeries so far, we had to get Hershey to fax his info to the surgeon, who then sent it to cardiac anesthesia for clearance. Now, they can just make a phone call. Luckily, we only have to go to the King of Prussia office, which is about 2/3 of the way to the main hospital. It cuts out an hour of round-trip travel time. Please pray for continued status quo with his heart condition. Maybe they won't want to see him back for a year!

So, although the week turned out to be not quite as expected, we're making the best of it! We look forward to spending time with family tomorrow! Happy Easter!

never a dull medical moment

baking with daddy

Compared to his first year of life, Lucas's second year of life has been a bit calmer on the medical front. He had no hospitalizations (in 2008 he had 3), and there were no new specialists to add to the list. Especially during the last 6 months, we have had very little to worry about in terms of Lucas's health (thank goodness). His cardiologist even increased the amount of time between visits. We've gotten through the entire fall season without any real illnesses (please knock on wood). It's been smooth sailing. Until now.

Last Saturday when Lucas woke up, he and I were sitting in the glider rocker and talking about the different parts of his body. When I prompted him to show me his thumbs, I noticed something a little funny. His left thumb is stuck in a bent position, and he can't straighten it. If you look carefully at the picture above, you can see the position. It's not forced; it's stuck in this double jointed position. Hmmmm.

I took him to the doctor on Monday and she's a bit baffled too. There's no known trauma. It just kind of happened. He had an x-ray done, and it came back fine. She made an initial diagnosis of trigger finger, otherwise known as pediatric trigger thumb. Needless to say, we're skipping the local specialist and heading right to CHOP to see an orthopedic surgeon on December 17. Based on the research I've done, I anticipate this ending in a surgical procedure. Please pray with us that it will not.

Never a dull medical moment. I never knew that such a phenomenon could occur with a finger. Oh the things I've learned since he was born... I should earn an honorary degree. HA!

the great imitator

So, it's been a while. And it's certainly not because I don't have things to post about. I also don't like the "I don't have any time" excuse, because I believe you make time for what you want to make time for. Nonetheless, work has been really stressful for me the past couple of weeks, and by the time I put Lucas to bed, tidy up a bit, check my email and do some grading or planning, I'm exhausted. I fell asleep on the couch Thursday night with my computer on my lap at 9:00. I'm also about 2 weeks behind on my blog reading, in case you're wondering where my comments are. I feel totally disconnected.

Lucas continues to increase his spoken vocabulary daily. I've pretty much stopped keeping track, because it's gotten to be too hard to do! I think he's at about 80 words. His speech therapist says she'd expect sentences pretty soon, because he has all the necessary parts down: nouns, verbs, polite words, greetings, pronouns, and directional words. I still marvel every day at his progress.

Last Wednesday, he had his 9-month post-activation mapping appointment and speech evaluation. His map was tweaked a little bit, and speech was not surprisingly really pleased with his progress! Nate and I left CHOP commenting about what a good day it was for a change. We don't go back until the beginning of January for his ANNUAL evaluation. Wow. It's almost been a year.

So, I decided that a funny Lucas video would do for today. Master Lucas has become the great imitator, especially of his daddy. It is now time for us to start to censor what we do and say around him. Enjoy the following video of Lucas imitating his daddy blowing his nose. I promise you, that's not exactly what it sounds like. Lucas thinks so though.

9 months from now...

And no, I'm not pregnant! But, today's cardiology appointment went so well that we don't have to return for another 9 months. Yay!

We start each appointment with a heart echo. The last 3 times, Lucas has laid there nicely, while the technician does an ultrasound of his heart. Not today. Thankfully, she was still able to get the readings that she needed, but he was not a happy boy. From another room, you might have thought she was cutting open his heart, but really, she was just rubbing ultrasound jelly on his chest. It's such a tough age, because he's old enough to have fear, but not old to understand what's going on, even with an explanation. Hopefully it will go better next time.

Anyway, his heart is really the same, which is great news. The size of the left ventricle has not increased anymore, and since Lucas has grown, the proportions are just barely above the normal range. The doctor didn't even bother to get out a new heart diagram and draw what Lucas's heart looks like compared to a normal heart, because it's the same as last time.

We were done in under an hour, which is record time. And we don't go back until April. Can't beat that.

6 months post activation evaluations

Today was a pretty easy day, thankfully, except for the crazy mother who threatened to punch her child in the face and throw her shoe at him, if he didn't behave while she was scheduling another appointment. Oh my!

Lucas tested well in the booth today, responding to speech at 20-25 dB. Our audiologist tweaked his program a little bit, but mostly left it as it is. Unfortunately, he had to turn off 2 of Lucas's 22 electrodes, because they were misfiring. I'm very disappointed to hear that. However, with them turned off, he can probably hear better now, than with the electrodes misfiring. Our audi didn't seem concerned, although I was. He said sometimes they come back, so we'll wait and see.

We are officially getting a hearing aid for Lucas's left ear. Because CHOP is not a durable medical goods provider, they can't order and process a hearing aid for him, so we will be doing that closer to home. We will probably go with Phonak's Naida, a very high powered digital hearing aid. Although it will not give Lucas access to spoken language, it may help him with localization, and loud sounds. Again, I would rather be getting him a 2nd implant, but since that's not an option right now, we're doing the next best thing.

Phew. Lucas did pretty well in speech. And she appreciated my list, so I'm glad I made it to bring along. He was a little antsy, and didn't sit the whole time for her, but I guess that happens sometimes. We got some new ideas from her, so that's good! Instead of asking Lucas to "knock, knock, knock" to open a box, she suggested we mix it up, and have him outline a circle with his finger as we say "open." She also suggested a book from Cochlear called Speech Sounds, for more ideas. I'm always looking for new ideas!

She agrees that Lucas is progressing well. She reiterated that he needs to understand spoken language before he produces it. And, he's making strides with that every day. By this time, they're looking for about 10 spoken words or approximations, and he has 11. So, she really wants and expects him to make more progress in the next 3-6 months. The pressure's on.

the week of appointments

Today was Lucas's 18 month well baby visit (at 19 months). Because of his CI surgery, his 12 months immunizations were pushed back a month, also pushing back his 18 month immunizations. So, it was a pretty easy appointment. For once, I didn't have a long list of questions for our pediatrician. It felt kind of nice. Lucas is in the 5% for height and weight, so he's a little guy! But, he continues to gain weight and grow, so we're not worried. And, I think Lucas is done with shots for a little while, woo hoo!

Tomorrow, we head to CHOP. Despite the long drive, it will be an easy day, with just audiology and a speech evaluation. It makes me think back to last year, and all of the days when we had 3, 4 and even 5 appointments in one day. Tomorrow will be nothing like that. I'm actually looking forward to seeing where Lucas tests in the booth. I know that he is hearing more than he tested last time.

But, I'm worried about speech. There, I said it. Lucas is doing wonderfully, but how will he really measure up? In terms of speech, he's doing very little. So, I guess we'll wait and see what she has to say.

But, I decided to make a list of what he IS doing to bring along and share, to especially emphasize his receptive spoken language, since that seems to be his strength right now. At 19 months of age, and 6.5 months post activation...

* Lucas responds to a variety of sounds, from birds chirping to airplanes flying overhead, to dogs barking from afar.

* Lucas makes a variety of sounds, although mostly the same ones he was making at 16 months: mama, dada, baba, nana.

* Lucas will blow kisses, if he is either asked to blow a kiss, or hears a kissing sound.

* Lucas will cover his eyes with his hands if you say “peek-a-boo.”

* Lucas will throw his arms up in the air if you ask him “How big is Lucas? So big!”

* Lucas will identify the following body parts on himself and on a book, and sometimes on other people: eyes, nose, belly button.

* Lucas will gesture along to “the wheels on the bus” with the horn and wipers.

* Lucas will tap the horn on his car when prompted by “beep, beep.”

* Lucas will clap when prompted by "yay!"

* Lucas’s expressive words or approximations: mama, ahhhh – airplane, dada, bye bye, bown – down, hi, muh muh – milk, buhbuh – bubbles, ba – ball, uh – up, ow - meow

* Lucas’s expressive signs: milk, eat, more, light, mommy, cat/kitty/meow, uh-oh, please, cheese, what, bye-bye, dog, all done, hi, down, book, bed, hat, bath, rain, daddy, brush teeth, fish, bird, airplane, hot, ball, monkey, mouse [He will do all of these signs with verbal cues only.]

* Lucas understands and responds to the following spoken words by a show of excitement, pointing, etc., in addition to all of the words that he knows signs for: cracker, water, up, upstairs, downstairs, outside, hungry, point to the…, diaper, animal sounds, car/ride, walk, Oma [This list is not comprehensive.]

Our week of appointments ends on Thursday with a visit to the cardiologist, for his 6 month follow-up visit. Hopefully he will remain on monitor only status, and we will return in another 6 months. Expect some updates.