Wednesday, May 28, 2008

Surgery 2 - Day 18 - dressing change

Jack's sock has been getting loose and Dr. Reinisch had recommended that we change the cup today or tomorrow, so we did this tonight.

This is getting SO much easier. I am better at it and Jack is more patient. So, I removed the cup and dressings.

Here is his ear before I cleaned it:

There is a small sore spot on his skin graft site. I put some bacitricin on it. I cleaned his ear with Q-tips and peroxide and got a lot of crusty stuff off. There is some tan colored skin that is peeling off and the skin underneath looks really good. The dark spot below his ear canal looks like if I peeled the crust off that it would bleed. So, that was left in place and the whole ear was covered in bacitricin ointment.

I replaced the cup with the cutout at the top and put the sock back on. Seemed like I did all that in no time flat!

The left ear has pulled in quite a bit, but overall, it is looking good.

Here are some pictures:

Oh, and lastly, we had some canine adventures this weekend too. Moxie, who has been systematically chewing up everything in sight, stepped on something and cut the pad on her paw on Sunday. Of course, on Monday morning, it would still bleed profusely if not bandaged, so she had to go to the vet hospital for surgery to stitch it up. Of course, this happens on a holiday, which was not cheap! And this is our SPCA rescue dog! The only bright spot in all of this is that I might go get a year's supply of those plastic collars. They are very effective in preventing her from chewing on her paw, but they also prevent chewing on everything else! Why didn't I think of that SOONER!!!!

Her she is in all her misery.

Sunday, May 25, 2008

Breakfast attire

This morning, Jaden and Jack came outside while I was doing some yardwork. They watched me while they sat and at some breakfast. When Jack first came out in his footie pajamas, I told him that he couldn't come out without shoes on. Here was his solution...

Yesterday, he was very happy listening to music on some headphones. I am sure it will be fun to do this again when his other ear is healed.

Friday, May 23, 2008

Surgery 2, Day 12 - the second time is easier

Today, we went to Palo Alto for a follow up appointment with Dr. Colen. Dr. Roberson was available by phone from another office if necessary, but he was not called.

At our follow up with Dr. Reinisch last week, he put some more blue silicone on and put a little hole in it for us to put drops through. This worked pretty well. Today, we removed the sock and cup and Dr. Colen removed the blue silicone. All this went pretty well. Definitely easier than the last time. The hardest part for Jack was the adhesive on the cup. Part of what is making it easier is ensuring that the sticky part of the tape is not in his hair when we put it on. Dr. Colen cleaned Jack's ear a bit and then we replaced the cup and sock. We decided to not remove the yellow gauze there in the office and agreed that I would do it tonight at home. We plan to go back in a few weeks to have all the packing removed from the ear canal. I sent Dr. Reinisch the pictures tonight and we will see what he has to say.

The only thing of concern for me was that there seems to be a dark spot on the skin graft. Dr. Colen said that this can happen sometimes and that the skin will likely slough off the top and the membrane below provides good blood flow for the skin to regenerate. Here are some pictures of his ear, you can see the spot below the canal and above the earlobe. The sponge and packing are still in his canal.

I think the ears are very even from the front, which is amazing.

When we got home, I took the sock back off and we removed the yellow gauze. I am glad we got it off now as it was much easier than the last time. We soaked the gauze with water by putting a wet washcloth on his head. Then, I pulled in the direction the hair was growing and it peeled off pretty easily. Here is a picture of the top of his head after the gauze was off and then Jack helping by holding the cup...

We have modified the cup to try to be a little easier on the sore spot that the cup is making on his head again. We cut out a gap at the top of the cup - here is a picture:

We then put some gauze under the edges where the cup meets his head. This s
will relieve some of the pressure, hopefully. I will watch this pretty closely over the next few days. Then we put a new sock on and here is a half smile from my ornery boy...

I am relieved that we are about half way through this recovery period and dreading the remainder of it. Jack is just bored not being able to run around. Tonight we let him ride his trike around the back patio. This seems to be a good release without running! Hopefully we can do that some more this weekend. Sometimes he likes to play "crash" and that would bring it all to a halt.

All for now, more soon...

Wednesday, May 21, 2008

The naughty boy...

Jack has been a bit of a pill the last several days. His ornery factor is very high. He is picking on Jaden, pulling dogs tails, doesn't want to go to bed, and just is generally argumentative about nearly everything. I recall going through this the last time. Last time, we chalked it up to a possible sensory overload because of the new hearing. This time, I think he may just be trying to make me nuts. Or, maybe he is just a smart boy, getting away with everything he can while people are doting on him and feeling sorry for him?

Anyway, he can hear very well right now. I was in a room downstairs and he was coming down the stairs and was asking where I was. I said (loudly, but not yelling) that I was downstairs and to come on down. He hollered, "Okay, mommy, I'm coming!" I about fell off my chair. His speech is really pretty good right now and he is using more and more complicated sentences. A big difference since his surgery. I am assuming it is from his ear being cleaned out.

We have a post op appointment with Dr. Colen on Friday.

More soon.


Sunday, May 18, 2008

Day 6 - first post op for left ear

Warning - PICTURES posted below might be a little rough for some...

On Friday, Darby, Jack and I loaded up to drive to LA for Jack's first post op appointment with Dr. Reinisch since his surgery on Monday. Things have been much easier this week, mainly because we all know what to expect (including Jack). He had been talking about Dr. Reinisch taking off his hat in anticipation of this appointment. Chris, Carter and Jaden stayed behind for Jaden's preschool graduation. Here is a picture of the happy graduate:

We left Sacramento about 4pm and arrived in Santa Clarita at 9:30pm. Santa Clarita was a good stopping point that was less expensive than going all the way to Burbank or Beverly Hills. Only about a 30 minute drive for the morning. It was a pretty easy drive with little to no traffic. Darby was a most excellent co-pilot and I am glad she came with me. She brought the tunes and kept the movie reel going for Jack who was happy as a clam in the back. We also joked along the way about the various odd town names and signs. We both feel sorry for people who live in Pumpkin Center, CA. We also agreed that Angeles National Forest is missing one notable element - TREES. How does that happen? My only minor complaint is that we listened mostly to Miley Cirus in the front poorly dubbed over Thomas the Tank Engine playing in the back. That is enough noise to drive any sane person crackers in short order.

So, we sleep (or not) through one heck of a party in the room next door, got up and made our way to Dr. Renisch's office in the morning.

Dr. Reinisch was in the office by himself. He removed Jack's netting, the gauze, drains and the blue silicone covering his ear. Jack was not nearly as hysterical, but was certainly not pleased with the process. The removal of the drains was much better this time - I had heard they were doing it differently and it was certainly easier on Jack. I forgot my camera and Dr. Reinisch sent me these pictures:

You can see that his skin graft came from the top and front of his head. This has not bothered him much at all.

Though I was a little worried about the redness, Dr. Reinisch thinks the ear looks good. I am happy with the symmetry - Jack's ear lobes were not symmetrical before surgery and they are nearly level now. The ear will come in to his head quite a bit as it heals, just as the right ear did. He is not completely pleased with the right ear's projection and feels that maybe it came in too far. He expects to adjust the right ear a bit in the stage 2 surgery. He will try to improve the definition, reduce the scarring on the back, adjust his ear lobe and remove the little bit of hair. He will also remove the scar where the top of the cup rubbed on the right side. Dr. Reinisch says he will just cut it out and pull the skin together and it should be fine. We discussed the next surgery and Jack is scheduled for Dec 22, 2008 if he needs the middle ear bone work from Dr. Roberson as there are some other combined surgeries scheduled in Palo Alto that day. If the middle ear work is not necessary, Dr. Reinisch said he could schedule Jack's stage 2 as needed. So, we will wait to find out what his hearing is and go from there.

We replaced all the dressings and met a nice couple from Ireland. The little boy was three and Jack was pretty amazaed to see someone like him in the office.

We left at about 11am and drove around a bit before heading back to Sacramento. We arrived back home exhausted (okay, that was me - everyone else napped), but happy to be home.

Tuesday, May 13, 2008

Home again...

Jaden was glad to see Jack when we got home today and did a full inspection of both Jack and Rhino. She was pleased to see that Rhino was all patched up. She wanted to know how "they" did it and thought the little head bandage was a hoot. Then, a little lunch and a nap.

Jack has done pretty well today. We are going to have to watch Moxie as she nearly knocked Jack over a few times. He is still a bit wobbly, is coughing some and runs a low grade fever intermittently. This is about the same as last time. His energy is not quite back yet, but he is definitely hearing better after the ear cleaning yesterday.

A funny thing is that every time we lay him down to change his diaper, he complains about the pain in the back of his head. He had a skin graft on the back of his head the last time and it was painful for him. We only made him lay down maybe once and then we changed him standing up. This time, his grafts were taken from the top of his head. After he lays down, he realizes it doesn't hurt and then he always looks like he is amazed. I keep telling him that the sore spot is on the top of his head and he doesn't believe me until he is laying down and realizes that it is not painful. Powerful memory there...

Hopefully more sleep for all tonight.

Getting ready to go home

Jack was finally taken to the recovery room and we got to see him shortly after 6pm last night. He was a little frantic when we got in there because he was trying to find the tag on his blanket and his blanket was lying underneath him. He just has to hold that tag and suck his thumb and all is right in the world. So, once we got the blanket out, he cuddled up with me and dozed for a bit and came out of the anesthesia just fine. We had the anesthesiologist put Jack's IV in his right hand this time so he could suck his thumb and that made things much easier this time. I think maybe he dozed a bit more and was a little more groggy.

Jack in the recovery room:

We left the surgery center about 8. A very long day.

Dr. Renisch and Dr. Roberson and pleased with the outcome. They said the ears look symmetrical and that the canal placement is good. Dr. Reinisch worked on the back of Jack's right ear for a bit and that lengthened things a little. He said there were some glands that he drained that were creating some of the bumps. I have to say, the wait is just torture.

Jack back at the hotel watching TV:

I forgot to ask for their pictures, but when I get them, I will post them here:

Last night, we gave Jack some of the tylenol with coedine before bed and he woke with a start at 2:30am. He just sat straight up. He was shaking a little and a bit feverish, so we gave him another dose of the tylenol and he slept most of the rest of the night. He was up a bit off and on and I am very tired. I can tell sleeping on his right ear is not feeling right to him but I think he will get used to it.

We are staying at the Embassy Suites in Santa Clara and it has been very nice. If we come again, this will be our spot. It was not too far from the surgery center and Chris has frequent points that we are using to defray the cost. So, Chris and Jack went down to get breakfast while I got a little more sleep. We are now packing up and going to head home. More soon...

Monday, May 12, 2008

Surgery #2

Jack sleeping in our hotel room the night before surgery (last night on the left ear for a while...)

This morning was not as stressful as last time. Chris woke Jack up and changed him into his froggy jammies (not planned - he was supposed to sleep in those but had a major diaper blowout last night causing me to go on a jammie hunt at 8pm on a Sunday - thank you Sheri for guiding me to a Target). I told Jack that it was time to go to surgery and to get Rhino. Jack said, "Can I go with him?" Funny. As a matter of fact, yes, you can go with Rhino.

Jack at the surgery center in the morning:

We arrived around 6:20am and checked in. The nurses remember us from last time. Jack is more cooperative and things go smoothly. We have the same anethesiologist and we are very happy about that. He called last night and gave us instructions - remember no eating after midnight, no liquids after 5:30am and juice or water only at that point. He has such a great style and is very knowledgable and caring. We know Jack is in good hands. Jack drank his happy juice *yuck* and got... happy. Rhino got a leg band and is all prepped for surgery. Before we know it, they wheel him off.

We are waiting here by ourselves today and are doing Sudoku and crosswords to keep busy. I thought I would write a little update, in case people are checking today during the surgery. The nurse brought Rhino out and I stuffed him and stitched him back up. We really needed a fur graft, but I think I did okay until Moxie gets ahold of him again. Rhino also got a very cute ear bandage. I am sure Jack will find that amusing.

Things are more on schedule this time and Dr. Reinisch came out earlier to let us know that they had cleaned Jack's right ear out a little more under the scope. His ear drum looks really good from his surgery in January. Dr. Reinisch pulled back the left ear flap for Dr. Roberson to start the canal and then came out to give us an update. Dr. Reinisch figured that Dr. Roberson would be done by 11 or so.

About 11:15 (I think) Dr. Roberson and Dr. Colen came out and gave us an update. Overall, things went well. The facial nerve is doing well and he is pleased with the canal placement. Jack's middle ear bones were deformed though and they removed the malleus and incus bones. We knew that Jack's left ear was not a good as his right and that the middle ear space was smaller. Dr. Roberson will have to do a second surgery on that ear to put in prosthetic bones if Jack is unable to hear with just the stapes. Sometimes, the connection with the stapes is good enough to result in hearing improvement. If not, the second surgery gets an improved result about 80% of the time (in typical atresia repair - results for the combined surgery are not known). This is not great news that the bones were deformed, but we are still hopeful for good hearing in this ear. I have attached an ear diagram for those who want to understand this better:

Chris has gone to retrieve some lunch... More later...

Saturday, May 10, 2008

Getting ready for surgery #2

Well, we are getting ready for Jack's next surgery.

Friday, we went down to Palo Alto for Jack's preop appointment. We met with Bruna and Dr. Colen. Jack had his ear cleaned out and I think it has helped his hearing. He did really good with it - with a little bribery. Bruna was so great in talking to him and distracting him while he laid there - she is just great. We filled out all of the paperwork and got our prescription for Jack's antibiotics for after surgery.

Then I took Jack to buy a new hat. Last surgery was in January so we weren't outside much. This time will be different. So, I thought it might help for him to pick out his own hat. After a long search in Old Navy, we found the shark hat. Get ready to see a lot of this one, Jack LOVES it and mom is happy. Here he is playing in the dirt at Darby's track meet today.

Chris' mom will be here tomorrow to stay with the kids and we will head to Palo Alto. We have to be at the surgery center bright and early at 6:15am on Monday. We are excited and anxious all at once. It seems easier in some ways this time around, because we know a little more what to expect. In other ways, I dread the weeks to follow. Most of all, I dread finding ways to keep Jack from running around for the next 3-4 weeks. I have bought a new Thomas movie, some new Thomas books and take along size Thomas trains. I also got a a very soft pillow for Jack in the hopes that it will make it easier for him to sleep on his right ear. Since he came home with us, he has pretty much always slept on his left side. That will all end on Monday. I think he is getting used to his medpor ear on the right, but not quite enough to want to sleep on it. Hopefully, the pillow will help.

I have not blogged much about our new terror Moxie. She has steadily been munching her way through our house and yard. She is not trusted really anywhere. The kids are enjoying her, except when they have some precious belonging shredded while backs are turned. This recently happened to Jack's favorite stuffed animal, Rhino. Rhino went to Palo Alto with us last time, and he is making the trip again. Only this time, I have suggested to Jack that maybe the doctors can fix up Rhino and give him a little surgery while Jack gets his big ear. I plan to sew Rhino up while we are in the waiting room and we will see if they will bandage him all up after surgery. Jack seemed VERY excited about Rhino's surgery while he has not really been too excited about his own. I think this will help distract him a bit and we will be able to focus on Rhino getting patched up. Here is a picture of poor Rhino...

I will plan to blog regularly again over the next few weeks to keep everyone updated on Jack's progress.

Please keep him in your prayers!