behind us

Yes, it is over, and I hope that life gets back to normal relatively quickly.

Lucas is sleeping right now, without me by his side... so that is good! He even willingly went to bed. Here's how our day began...

I was up at 3:30 AM, after a whopping 4 hours of sleep. My mom arrived at 4 AM, after no hours of sleep. We were off to a great start. I woke Lucas up at 4:15, and *luckily* he peed on the potty for me before we left. He was in a good mood, and happily reported, "Mommy, I sleep through the night!" We were on the road by 4:20, and we arrived at CHOP at 5:40. You gotta love no traffic!!!

Surprisingly, when we reached surgery reception, there were already lots of people waiting. Lucas was called back at 6:07, and we hung out, meeting with about 10 different people, until 7:30 when they took him back to surgery.

Our nurse was really great, and she was with him both before and after surgery. He was a little skeptical of all of the prodding at times, but he was very cooperative. The *giggle* juice that they use to decrease anxiety started working just a few minutes before they took him back, but was quite effective. He didn't mind leaving us at all.

Oma and I checked in at surgery waiting, then headed to the cafeteria to grab some breakfast. We brought it back up to eat, just in case they came around with an update. By 9:00, I had already spoken with the surgeon, and they came to get us to see him. Surgery went well, and he believes that he removed enough tissue and cartilage that it won't return. Lucas slept for another 2 hours (thankfully they let him do so this time). It was perfect, because our nurse was just about to wake him up when he awoke on his own.

The only comments I got from him about the procedures of the day were, "Mommy, I don't want a shot," (wish granted), and "Mommy, this hurts," when she was removing all the tape from his IV area (the whole way up his forearm). He was happy to eat a popsicle, and then we left. On the way home, he vomited once (not surprisingly), but Oma was quick and caught it. He wasn't sick the rest of the day!

Lucas slept much of the way home, and we were home by 1 PM. Lucas was very insistent on eating and drinking, so I'm glad his stomach was able to handle it. I filled his pain medication prescription, but he would.not.take.it. I called the pharmacy for advice and they said they could add flavoring & decrease the bitterness, but he still.would.not.take.it. We some how forced it in him, but from now on, I'm just giving him Tylenol.

He napped again from 5:30-6:30, and I was afraid that he wouldn't go to sleep at a decent hour. But, at 7:30, he was ready for bed. He insisted on a bath, and I'm sure it made him feel better. I just wouldn't let him get his hair wet. We read some stories, and I think he was asleep by the time his head hit the pillow.

I hope he has a good night. I'm really hoping to send him to camp tomorrow. We'll see how he feels.

Thanks for all of your thoughts and prayers!

Let summer really begin!

preparations

Happy Father's Day!

Lucas is a very lucky boy to have such a great father. He often excitedly remarks that if he eats all of his supper, he will grow big and strong like his daddy! When daddy takes his socks off, so does Lucas. He wants to emulate his father, and I'm so glad that he does.

On to what's on my my mind... surgery. He will be having his recurring branchial cleft cyst on his right ear removed. We will leave home at 4:15 tomorrow morning, for a 6 AM arrival time. I can't complain, because this is the way we like to do it. We miss all the traffic on the Schuykill Expressway heading towards Philadelphia, and it's much easier to keep food and drink away from him when it's so early. We're also usually home at a decent hour.

This is surgery number 6 for our little Lucas. I have a lot of trouble with that number. I think that's more surgeries than Nate and I and our families have had combined, let alone for a three year old in a three year period. I'm thankful for great medical care and a happy little boy, but part of me is very sad for all that he has been through. I hope that this is the last surgery for a long, long time. But I said that last time, and the time before last. Maybe I should use reverse psychology and say that I'm looking forward to his next surgery soon.

Kidding.

I have a couple of stories to share about preparing Lucas for surgery. It started when I told Lucas about his friend Jack's recent surgery. He proceeded to tell me that he needed to go see Dr. K (his surgeon) to have his ear "booboo" fixed. I was so floored, because I hadn't mentioned it to him yet at all. But I went with it, and agreed, telling him that it would happen soon.

Then, tonight before bed, I picked out some books pertaining to the hospital. He sat down on his bed and says to me, "Why did you pick out a book about the hospital? Because we're going to the hospital tomorrow?"... and proceeds to giggle. LOVE, LOVE! So intuitive.

After reading books, I asked him what he wanted to bring along to the hospital. He said "doctor bear" and then "Elmo, like I did last time." Last time?!? Last time was his 2nd CI surgery, 7 months ago, before he turned 3. I was kind of hoping he had forgotten about that, but not my kid. He has the craziest memory, in my opinion.

So, I will update tomorrow night, hopefully. I think he will do just fine, as he at least seems to be looking forward to seeing Dr. K (who has performed 4 of his 6 surgeries, by the way). He is certainly very aware of his surroundings, is quite inquisitive, and doesn't miss a single beat. So, it will be interesting. He's a trooper though, that's for sure.

Thanks for keeping our little Lucas in your thoughts and prayers tomorrow!

it's baaaack...

I noticed it on Friday after school. It was red, puffy & warm. I didn't waste any time, deciding to call CHOP directly to speak with a nurse in ENT. She called me back later and prescribed yet another antibiotic. *cringe* It was nice just to describe the problem over the phone and have them know what I was talking about, skipping the middle man (the pediatrician). I guess it also happened once in March and once in February, so I knew what was coming. Today the skin over the scar was paper thin and almost see through. It looks like it has opened up in this picture, but it has not yet. That's how thin his skin is there.

Surgery is currently scheduled for June 20, to remove this mess again. Hopefully it won't erupt again in May and June. But we haven't been that lucky so far, three months in a row...

On a positive note, we have a potty-trained boy on our hands! He was finally ready, and it has not been a struggle this week! I'm just hoping that the antibiotics don't mess with his little system and make him regress to diapers. He won't eat yogurt for us, so we've been feeding him lots of frozen yogurt. He's not complaining!!

the dreaded "s" word

Surgery it is.

The surgeon confirmed that the cyst has returned, and that he needs to remove it again.

I will call and schedule the procedure tomorrow, hopefully in June when school is over.

Sigh. This makes surgery number six.

how cool is that?

I called CHOP first thing this morning, as promised. I spoke with a nurse and she said she would get a message to Dr. K, and either she or he would call me back. I was so happy to talk to Dr. K personally this evening, and the first thing he said to me was, "I'm looking at the picture of Lucas's ear on your blog post right now, and I can see that..."

How cool is that?

He was able to "diagnose" over the phone because of my blog post! He changed Lucas's antibiotic dosage slightly, and gave me some further instructions. He wants to see Lucas in 3 weeks, and then we'll decide what to do from there. He said that it's "very likely" that the cyst has returned, and it may need to be removed again. Ugh.

The site actually looks better than it did yesterday. The swelling has really decreased, and you can see a little hole now too.

If timing is right tomorrow, we may see Dr. K. Or maybe he'll just look at this image again. :)

weekend of ear woes...

Happy Spring!

It has been a weekend of unprecedented ear woes. We have generally had very good luck on the ear front, both bionic and biological. I guess aside from the need for cochlear implants, the CSF gushers, the branchial cleft cysts, and the tubes... okay, wait. I guess everything is relative. I just mean that Lucas does not have recurring ear infections, etc. and that we rarely lose or break any of his equipment.

Except this weekend.

Friday night for the first time, we spent time on a CI scavenger hunt. It was short lived, but it was really the first time that we've been worried about finding the elusive 2nd CI. It was in the living room the whole time, but Lucas insisted that he dropped it off the deck. Boy did I breathe a sigh of relief upon finding it.

Then on Saturday, just when I was thinking about blogging about how well Lucas has been doing with wearing both ears in the car, we arrived home from his doctor's appointment (more about that later), and he had taken the new one off and pulled it apart. When I put it back together, it would blink normally, but then when I put it on his head it was a solid orange. Not good. I asked Lucas where it had been, and he pointed to his nose. Lovely. We put it in the dry and store for a few hours during his nap, and that seemed to do the trick, but it was working sporadically again today. Great. We'll see how it acts this week. Good thing we're going to CHOP on Tuesday, because I can get their opinion about which part is damaged, if it's still giving us trouble.

Back to the doctor reference. Friday afternoon I noticed that his right ear was swollen, right on the same site as the branchial cleft cyst removal incision, just like last month. On Saturday morning, it was worse. Since I don't like to mess around with anything related to his ear, we went to see his pediatrician. The doctor agreed that there's some kind of infection in there, and prescribed him more antibiotics. I can't say that I'm a fan of antibiotics every few weeks, but my opinion has changed since having a child with significant medical concerns. There's no messing around. I'll be calling the ENT early tomorrow morning to beg request to be seen by someone while we're at the hospital on Tuesday.

I removed the ear hook from his right ear, and am solely relying on wig tape to keep the processor on his ear. It's working just fine. When I put Lucas to bed tonight, I noticed a pin size hole forming on the incision, so I put some antibiotic ointment on it. It's pretty tender, and he doesn't like me touching it. This has happened now twice in 2 months. Either the branchial cleft cyst is back, or something is wrong with the surgical site almost 5 months post-surgery. 

It certainly could be worse... we could have actually lost his CI, or it could be completely not working. We really have lucked out with our equipment so far. And Cochlear's customer service is really spectacular. I just had his coil and magnet replaced on his new ear this week, because the magnet got stuck somehow and I couldn't twist it anymore. It was replaced in 24 hours. 

I'm just hoping that whatever is going on with Lucas's ear doesn't result in another surgery. Pretty please?

recovering...

I was too tired to blog last night, so here's an update on Lucas's surgery. I'm happy to report that surgery went well and no tears were shed at the hospital. He's pretty well back to himself today. For the first time (unlike the previous 3 surgeries), Lucas was not the first surgery of the day. So, instead of arriving at 6 AM, we arrived at 8:15, so we hit traffic on the Schuykill. He was the second in line for surgery, so we had to wait until the first surgery was over. They didn't actually take him back to surgery until about 10:30. That was the longest part of the day - entertaining a busy toddler for 1 1/2 hours. Right before surgery he was pretty out of it, thanks to the giggle juice, so he didn't really mind when they came to take him back.

We said our good-byes, checked in at the waiting room, and headed to the cafeteria for some grub. When we got to the cafeteria at 10:40, it had just closed at 10:30 to prepare for lunch. So, we waited until 11:00, got something to eat and then headed back up to recovery waiting. We promptly got an update from a nurse who reported that Dr. K was done with the first ear, and was starting the second. A half an hour later, we got called back to recovery. Because of how he woke up during the last surgery, we let him sleep for 2 hours, hoping he would wake up more pleasant than hysterical. It worked. He was a tiny bit cranky while the nurse removed his IV, but as soon as he got his sippy cup, he was a happy boy. AND he didn't vomit at all either. It was a much better recovery.

So, we headed home shortly thereafter. He didn't have to pee to be discharged like he did in June. He did, however, pee plenty on the way home. We wondered why he was so fussy near the end of our trip home, and when we got home, we figured out it was because he was wet to his knees. Although he certainly has the language ability to tell me things like that, he just doesn't. He's a boy.

He had an uneventful evening at home, and went to bed pretty easily. However, a few minutes after I put him to bed, he was calling for me at the door. He had scratched off some of his dermabond. I think it was itchy for him. It wasn't bleeding, so we put a bandaid on it and he went back to bed and he didn't touch it anymore. He spent a quiet day at home today, recovering with daddy. He got to have a bath tonight too! We don't have to technically follow-up with the surgeon, because his CI surgery will be our follow-up!

Here are some pictures from our day:

playing doctor

stamped by the surgeon and ready to go

bossing around Elmo & doctor bear

getting cozy before surgery, thanks to giggle juice

sleeping off the anesthesia

doctor bear got a hospital bracelet too!

Now it's time to start worrying thinking about CI surgery. Somehow I can't believe that we're going to go through it all again. I know it will be worth it though. We have an activation date: December 9! His first activation was January 9, so that will help me remember. It will be 1 year 11 months to the day. Thanks everyone for your prayers and well wishes. It meant a lot!

before THAT surgery...

As excited as we are for Lucas to get a 2nd cochlear implant, we haven't begun to think about it much yet. Why? Because he has another surgery scheduled for this Monday. When we met with his CI surgeon about the 2nd implant, we also inquired about his "ear pits" that discharge and sometimes get infected. He decided he wants to remove them prior to CI surgery.

For surgical purposes, they are classifying these ear pits as branchial cleft cysts. I would love to take a picture of them, but they're almost too small to photograph. It looks mildly similar to this, although Lucas's placement is slightly lower and more to the left.

this is not Lucas's ear...

They're really quite unnoticeable. In fact, when we took Lucas to see the geneticist for testing, the doc missed them during his examination. I had to point them out to him as being "abnormal." The pits are a congenital birth defect, and were at first thought to be just divots. But, the holes are actually canals that lead to sacs, and they drain, and sometimes even get infected. The infection part is worrisome, as he needs no extra risk of infection in his head. That's why they're being removed.

Surgery is on Monday. I got our arrival time this afternoon... 8:15 AM. I am thankful for the early time. I'm actually pretty nervous about this surgery. After his last surgery in June, I have concerns about how he will react to the anesthesia again after surgery. As he ages and develops more language, he becomes more aware too. 4 months ago he didn't ask too many questions, but I don't know how he'll act this time. I've gotten out doctor bear and the doctor kit, and we're going to role play. That's the best I can do to prepare him.

Your prayers for an easy procedure and a quick recovery are appreciated. I'll blog about how it goes.