Tuesday, January 29, 2008

Day 11 - A long day

Picture warning for this post - pictures of Jack's healing ear below...

Well, Jack has been doing just great. We had a little concern this weekend as there was some additional oozing from the cup area. It is very hard to tell if this is from the drops or from something wrong. So, I called Dr. Roberson's office and talked to the on-call Dr. on Sunday. He was very re-assuring and felt there was nothing wrong. Regarding the drops, he said, "The more the merrier." I felt better having called, even though I always feel bad calling the on-call Dr. after-hours. I may try a needle-less syringe.

Jack has been watching a lot of movies, which, up until lately he was completely disinterested in. I wonder if he can hear them better? Anyway, he is very interested in these Thomas movies and so has been playing with his train set also. I will post a video clip here:

My mom has been sending little packages for Jaden and Jack, which has been very exciting! Here are the kids with a sticker book and a very NOISY microphone that Jack loves (gee thanks, mom).

Today, we went to Palo Alto for a follow up with Dr. Colen and Dr. Roberson. I was thinking on the way there how traumatic our first trip was (over a year ago!). Jack was just hysterical most of the way and I think he ate a pound of animal crackers en-route. I had a kid CD blaring the whole way as it was the only thing that somewhat consoled him. I was so glad to get out of that car! Today, Jack very quietly watched the movie, Cars while I sat in on some conference calls for work. What a difference...

So, when we got there, Bruna ushered us right back and when she asked Jack how he was, he kind of sheepishly patted his head and said somberly, "I got a hat..." It was pretty funny. I had been telling him we had to change his bandages today. Bruna was great and took Jack to get a basket full of toys that he could pick one from at the end of the appointment. She sat on the floor with him and really made him feel better.

Dr. Colen cut off the netting, which made Jack very upset. I don't think anything was painful, I just think it was memories from last week. I forgot to bring some mineral oil to use in removing the adhesive strip from the cup, so after a few tries, we just left it on. We decided I would just rig it up to get home and then work it out later. Dr. Colen removed the outer-most sponge. She explained that Jack still has a lot of packing still in the ear canal, so he probably hears better (which I can tell), but will probably hear even better when all that is out. I put a new cup over the old adhesive and Bruna and I put the netting back over his head and cut out the hole for his face. He just hates that whole process, but once it is in place, he is all fine.

The ear is still pretty swollen, but here it is with the sponge still in place:

I expect I will see that look again when Jack is, say, 14???)

Here is the back of the ear:

Here is the ear with the sponge out. The canal looks very large, but it will shrink over time.

Both Dr.'s felt that Jack's ear looks great and that the canal is healing nicely. I was a little worried that the back of the ear was sort of bruised-looking, but Dr. Roberson thinks it is no problem. I did notice one stitch that was missed last week and Dr. Roberson said let's just wait to pull that out until next week. Jack had sort of had enough. Dr. Roberson wants to see Jack next week, saying that he would like to see him a little more often than normal as this is new. So, I will make another appointment for next week.

When Jack and I got home, I laid him down and drenched the adhesive strip in mineral oil. Jack was not happy. I rubbed it for a while and then pulled it off. Horrible. When I put the cup back on, I made sure there was no adhesive in his hair this time. That should make things a little better.

He took a 2 hour nap after all that and is my happy boy again tonight.

More soon...

Friday, January 25, 2008

Day 7 - the cup moved...

Today, Jack had the pleasure of staying home with Dad. I went to the office. Somehow, during Jack's nap, it seems that the cup protecting his ear came loose from the adhesive strips and was misaligned a bit. It didn't look like it would make it through a night of flip-flopping Jack-style, so I called Dr. Reinisch. I always feel bad calling a Dr. - especially on a Friday night. He was really awesome and said not to worry about calling at all - to please call if I am worried about anything. So, we agreed that we would try to replace the cup. Dr. Reinisch reminded me that it took three of us to get it all back on last time. Chris and I decided to try with just us and see if we could do it. If not, we would call a friend. Dr. Reinisch felt we might have to replace the entire stocking as they tend to get very stretched out when you remove them. We decided to see if we could just pull it up above his eyebrows and not take it completely off. Before we started, we offered a sucker in return for good behavior. We pulled the stocking up to his eyebrows and laid him down. Jack laid very still. He cried a bit - I think just because he was scared it would hurt. Dr. Reinisch just uses the adhesive strips on the bottom half of the cup so that it doesn't have any adhesive on the hair. As a result, the cup came off fairly easily. We took some pictures, but they are a little blurry, so I am not going to post them. His ear is very swollen, but still looks pretty good. We applied the new cup and pulled the stocking back down. It looks to be fine - not too stretched out. I have also cut a little hole in the stocking one side around his temple for the BAHA. This allows his BAHA to connect with his head so he can wear it a little to the side. It was leaving a big red mark in the front and was bothering him. We have been putting drops in Jack's ear to keep the sponge moist. This is a bit of a challenge as we have to poke the drop bottle through the hole in the cup. Since I can't really see where the drops are going very well, I just squeeze several in there in various directions and hope that some of it is hitting the sponge. So, while we had all the gear off, I put some drops on the sponge for sure.

So, here is a picture of him after all that. He is just a pretty happy boy!

Wednesday, January 23, 2008

Day 5 - First post op appointment

Picture warning for this post - they might be tough for some to look at...
Today was a very long day for Jack and I...

Last night, Jaden was very ill and up off and on. Jack was tossing and turning, so little sleep was had. Chris' mom got the older kids off to school. Jaden was deemed too sick to go back to school so she spent the day with Grandma and they dropped us off at the airport for our 12:15pm flight.

Before we left for the airport, I took these pics of Jack.

The drains go away today - yeah! For people who may have to deal with these drains, here is my tip. Jack kept getting the tubes caught on things and the older kids thought they were a bit unpleasant to look at. So, we started putting a shirt or vest over the top. We pin them to the undershirt and then put the top shirt over. They seem to just stay in one place and didn't bother Jack near as much. We did the same thing at bedtime. One pair of zip-up footie pj's with a button up top over the drains.

As Jack and I manuevered through the airport, we garnered a lot of attention. Jack is so happy and normal behaving, yet he looks like he just got a lobotomy with all that head gear. People just stare and stare. It was a little unnerving.

We got to Burbank with little hassle, rented our car and ventured out into the rain. I only got a little lost and Chris guided me back on track by cell phone. I get so twisted around down there! I am taking a compass next time. Back where I grew up - the mountains are always on the same side - namely, the WEST. Those hills just screw me up! Anyway, Jack was a trooper and we got to the office by about 3pm. Our appointment was at 4:45pm but they took us back right away to help us make our flight back.

Dr. Reinisch, Dr. Lewin and the nurse all helped. I held Jack in my lap and they began working. I have to say it was just awful to have to hold him. He just screamed his little heart out. They removed the stocking, the gauze pads, the cup over his ear and the other stitches. He was completely screaming. One place on his skin graft was bleeding pretty good, but most of it was just oozey. The last and by far worst part was the removal of the drains. I have never heard Jack cry like that before. I was relieved when they were done. I gave Jack a pile of jelly beans and they gave him stickers. I'm not sure that made it worth it, but he sure perked up.

Both Dr.s said his ear looks really great. Dr. Lewin took some pictures - see below. We agreed for them to shave his entire head - this is not necessarily the standard practice - but we thought it would be better than a somewhat odd mohawk. There is a sponge in his new ear canal - it will be removed by Dr. Roberson in Palo Alto. Jack is still pretty upset in these pics, but we think the ear is looking pretty good.

Jack really came around pretty quickly and Dr. Lewin took this picture of him before we left the office...

So, the plan is to see Dr. Roberson on Tuesday of next week. We will remove the dressing again then. In the meantime, we will be putting drops in Jack's ear through the holes in the cup. After the visit with Dr. Roberson, we will put the cup back on. We will change it one more time the following Sunday. Each time, we will take pictures to send to Dr. Reinisch. We may put the cup on one more time after that, depending on how Jack is doing with it all. He really doesn't pull at it much at all. The only concern is really when he is sleeping. He rolls all over the place while he is sleeping. We are expecting the ear to swell some now as the blue silicone that was protecting it is now off. So, the next time we see the ear, it will probably be pretty puffy.

All for now!

Tuesday, January 22, 2008

Check up tomorrow

Today, I called Dr. Reinisch's office and set up post op appointment for tomorrow. Jack and I will fly to Burbank tomorrow and see Dr. Reinisch and then fly back. Chris was able to use his frequent flyer tickets on Southwest, but we only had two tickets, so it will just be Jack and I. Dr. Roberson was very comfortable with us flying - that was our main concern. Chris was asking how I would be able to carry everything - kid, car seat, stroller, backpack... I said that I will have the magic of a very cute, charming little boy with a huge head bandage - people will help me, right? I will let you know tomorrow!

Jack's swollen eye is back to normal and the puffiness is gone from his face. He is getting a little bit too used to all the attention and pampering. I expect that we will be facing a detox period when he is healed up...

More soon.

Monday, January 21, 2008

Day 3 - update and surgery pix

I will issue a picture warning at the beginning of posts for those who may have a queasy tummy. I think these are not too bad, but this is the first picture warning...

Jack continues to improve. He had no fever today. He is doing this very cute slow-motion jog when I tell him to quit running. The drains have quit collecting fluid and before he went to bed his swollen eye was nearly back to normal.

For those who are reading this blog, you are in for a special treat! A STOCK TIP! Buy into Kimberly-Clark now! The Herne family is using record numbers of Kleenex tissues as the cold has migrated to another family member. Jaden is now running a fever and blowing her nose right with me. So, by the time it makes it through the whole family, Kimberly-Clark stock should have gone up. Now it is also time to pray that Jack doesn't get it - at least not soon. Whole lotta hand washin' goin' on here...

This evening, Dr, Roberson, via Sheri Byrne sent me the pictures taken during surgery. So, below I am posting Dr. Roberson's photos with the first glimpse of Jack's ear. We think it looks really good!

Sunday, January 20, 2008

Day 2 - Jack is Back

Yes, Jack is back. That is the good news and the bad news! I need a bull horn with a recording of "SLOW DOWN! NO RUNNING!" Sheesh! I am also wondering if the anesthesiologist turned him into a 12 year old - this morning when I was hollering, "No running," he hollered back, "I KNOW, I KNOW!" as he slowed to a jog...

So, let me re-wind a little. The first night in the hotel, Jack slept pretty good. He was restless off and on, and running a little bit of a fever. Of course, I didn't bring a thermometer... He does not like the Tylenol with codeine *yucko* but will take it when bribed with 5 jelly beans for successful consumption. I didn't bring a thermometer, but I did bring the bribes! He seemed to feel better after taking that. I don't know if someone made a mistake, but when we filled the prescription for that stuff, we were given a PINT of it! Holy cow, we will save that for all future surgeries for everyone in the family and will still have some left over. Anyway, the back of his head seems to also be quite sore. The Tylenol helped with that.

When he got up *at 5 am* we watched some movies and he walked around a bit. He was a bit perplexed with all his new head gear and the drains took some getting used to. He kept telling me he wanted it off. He was generally sluggish, but ate some applesauce and easy mac for breakfast (his pick) and seemed to be feeling okay. Here is a picture from the morning after surgery...

We showered and packed up and headed back to Sacramento at about 10. I am grateful that Chris' mom stayed with us, I don't know how I would have done all that by myself. Jack slept most of the way home. He was glad to be home and was eagerly inspected by the siblings with everyone relieved that he is okay. Here he is eating dinner.

In the evening, Jack was running a fever again (about 101F), so we traded jelly beans for Tylenol/codeine again. I took cold medicine and we went to bed about 8pm. Jack and Chris have traded spots until we know Jack will sleep through the night without trouble. He often wakes up and starts pulling on everything. He is relatively easily settled, but was up last night from about 2-4am with a low grade fever. I gave him some regular Tylenol about 3 and that seemed to help.

So, this morning, our little Jack is back. He is happy and bouncy and talking up a storm. He does look like he was in a boxing match now (see picture). We were warned about this and know it is normal. It doesn't seem to bother him, except that he keeps trying to rub his eye to get it to open a little more. Since he was feeling good, we all went to church this morning and he did great. The drains have little bulbs to collect the fluids and they are kind of disturbing to Carter, so I put a short sleeve shirt on Jack and put the drains outside of that and then put a sweater on top of that. This seems to work well as they don't get caught on things as much and Jack doesn't mess with them. I will be glad when they come out.

Here he is today with his boxing look...

So far, no fever today, so I am relieved. If he had a fever again, I was probably going to call the Dr.

More soon.

Friday, January 18, 2008

Day of Surgery

What a long, exhausting day...

Here we are shortly before 6am arriving at the Waverly Surgery Center in Palo Alto. Jack was very tired, but miraculously, he never asked for anything to eat or drink. Since he wasn't allowed to have anything, we were grateful for that. Our little Jolly Green Giant not asking for something to eat? What was up with that???? Maybe an answer to a prayer...

Shortly after the paperwork was complete, Dr. Roberson, Dr. Reinisch, Dr. Lewin, Dr. Colen, and the anestesiologist came out to talk to us. Dr. Roberson explained that he felt the hearing outcome potential was a little greater with the right ear, so they would prefer to start with that one first. We discussed the procedure and timing. They made us feel very comfortable with their plan for the surgery and said they thought it would take about 7-8 hours. We then discussed the post op care and agreed to the post op appointment schedule.

Dr. Reinisch planned to start and do the endoscopic harvest of the membrane and the skin graft from the scalp. This will leave Jack with no skin graft site on his leg, tummy or arm, which is great. We understand that this is often the worst part for healing and pain and is much better from the scalp. Jack will only have one incision over the top of the ear - no scar on the scalp. Then, Dr. Roberson will come in and do the ear canal. Last, Dr. Reinisch will come back in and complete the Medpor procedure.

We then went back to the pre op room. A nurse took Jack's stats, gave Jack and his stuffed Rhino an arm/leg band, marked the right ear "yes" and gave Jack some "happy juice." Boy was this a humorous sight! Jack was a drunken three year old for the next several minutes. Maybe a peek at his 21st birthday? He is a very funny drunk.... He was really loving his sparkly stickers. They kept getting stuck to things and he lost track of them and was leaning all over woozy-like trying to find them. For a little humor, I have uploaded a little clip of drunken Jack. Just don't call social services on us - we swear this was surgery related. I was tempted to swipe some happy juice for myself though, seeing how great Jack was feeling!

Next, the anetesiologist came in, reassured us again and then wheeled our drunken Jack off at about 8am. It was a tough moment.

About 9:15am, we were told that the surgery had started. The Let Them Hear Foundation staff kept us busy chatting and brought us all kinds of puzzle books, water, gum and such. We talked for hours and are sooooo grateful for their generous gift of their time. They also bought us lunch :-) and we enjoyed the distraction. (Special note for the people who visited and waitied with us - you are all amazing - THANK YOU!!!!!) We were given a few more updates that things were going well when the skin graft harvest was complete and also when the ear canal was done. Jack was very stable throughout the procedure and Dr. Roberson was pleased with the middle ear space, the middle ear bones and how the ear canal turned out. He feels that Jack will likely have good hearing in that ear.

Chris went to Long's drugs and filled the prescription for the antibiotics and the Tylenol with codeine so we wouldn't have to fill it later (a tip from another blog - thanks).

I think it was about 6pm when the doctors all came out with smiles on their faces. Everything went really well and they were all thrilled with the outcome. They showed us pictures of Jack's ear from after the surgery, before all the bandages were put on and it really looks fantastic! Dr. Roberson was going to try to e-mail it to me, so I will try to post it soon. This was nice because it will be a while before we get to see it.

So, Jack was then taken into recovery. The doctors all came by again and gave us some last instrcutions. Jack was very drowsy and just waking up. He was a little irritated at the IV that was on his left hand and kept pulling at it. I finally figured out why he was so mad - he wanted to suck his thumb! So, he finally ate some applesauce and drank some water and they took out his IV. He was very pleased and immediately was sucking his thumb. His voice is a bit horse from the breathing tube and he is not happy that his BAHA doesn't fit where it is supposed to go, but I think he will get used to it. When we were able to see that Jack was doing well, Chris took off to head back home as his mom is here now to stay with Jack and I.

So, here are some pics of Jack in back at the hotel. He fell asleep at about 8pm and is cozy in bed for now.

Thank you to everyone who prayed for Jack and our family over the past days and weeks. The Lord looked after our little Jack and your combined strength was definitely with us today...

I am going to head to bed now. It has been a very long day and I can confirm that I have collected myself a pretty good cold. I am hoping I don't give it to Jack...

Thursday, January 17, 2008

Day before surgery

This afternoon we had our pre-op appointment with CEI. Unfortunately, Dr. Roberson and Dr. Colon were called into an emergency surgery at Stanford. A bit stressful for us, but the staff did a great job of answering our questions in the absence of the surgeons. There was some minor confusion about which ear would be operated on tomorrow. I think we have settled on the right ear. We will confirm in the morning when we meet with the surgeons.

We are waiting tonight to hear from the anethesiologist. He is supposed to call tonight to just check in with us and see if we have any questions.

We called Darby, Carter and Jaden and it appears that Grandma Herne hasn't given up and driven back to Wyoming - whew! Sounds like the kids got to go out to dinner and that seemed to be a hit.

So, in the morning, we have to be at the surgery center at 6:00am. We have never been there before, so we are leaving our hotel at 5:30am. Jack doesn't get to eat or drink anything after midnight tonight, so he should be all kinds of cheery. We are feeling better after our appointment today. They gave us all kinds of ways to get in touch with people if we have any questions or concerns and a few people from the Let Them Hear Foundation (http://www.letthemhear.org/) will be coming by to stay with us while we go crazy waiting. The Let Them Hear Foundation Insurance Advocacy Program helped us get our insurance to pay for Jack's BAHA (hearing aid) - they are really great people and I was so touched when they called today to say that they will be coming by to support us.

The surgery is expected to last about 7 hours. That will be one long wait...

Here are some before pics of Jack's ears and Jack playing in our hotel room.

Any and all prayers are welcome - tomorrow will be a long day for us all.

Monday, January 14, 2008

Long overdue update...

Okay, I know it has been a long time since my last update. Things have been very busy in our house. Four kids definitely keeps us hopping. That's my excuse and I'm sticking to it!

So, for Jack, he has just come so far... I just had to attach this video clip of him singing, "Jingle Bells." He and Jaden are sitting amongst the Christmas mess doing a puzzle and in his joy he started belting out his power-version of "Jingle Bells." It is really hard for me to believe this brave little boy, just a year earlier, had not heard clearly - much less heard English!

We were blessed this past year with some amazing speech and language therapists who came to our house and Jack's pre-school weekly. They worked with us and with him and we will be forever grateful for their impact on all of our lives. I dedicate the "Jingle Bells" to them!

Upon turning 3, Jack moved on to a new speech pre-school. This pre-school is the only one of its kind in the school district and, amazingly, is only about a mile from our home! Jack has made even more progress since attending this class 3 times a week for two hours in the morning. He then rides the school bus, like a BIG MAN ON CAMPUS, to his Montessori school. Here are a few pics of him with his GINORMOUS backpack and getting off the school bus. He is just beyond proud of himself!

So, we are now moving on to a new chapter this week. Jack is having surgery on Friday. We have carefully weighed our options for Jack and his hearing is our highest priority. When Jack was just a little boy that lived in China in a picture in a file, it was easy to research his condition and say we could just have surgery and help him. Now, he is our son. He has taught us so much about bravery, love and joy. He has given much more than he has taken and the decision to have him undergo surgery weighs heavily on us. It can possibly provide him with nearly normal hearing and an amazing looking ear that will help him to have good self esteem as he matures. We hope and pray for a successful surgery!

We are also embarking on some new territory. The two surgeons that we have been consulting are widely known for their incredible work.

Dr. Roberson at the California Ear Institute in Palo Alto performs canalplasty. Jack's cochleas are believed to be functioning normally, but he has no ear canal. Dr. Roberson can make an ear canal and ear drum for him. In Jack's case, he has a good chance of having near normal hearing.

Dr. Reinisch is a plastic surgeon in Los Angeles. He is known for his work with the Medpor procedure. Using a polyethylene implant for ear framework, he will construct an outer ear for Jack.

These two surgeons will be performing these procedures in one surgery for the first time on Friday. Dr. Reinisch will be coming to Palo Alto to operate with Dr. Roberson for Jack. This will reduce our surgeries by one at least. Hopefully, if things go as planned, we can do the other ear the same way, possibly turning 5 surgeries into 3. We are grateful for these surgeons taking the time to help us in this way, and hope that it can help many other people with microtia and atresia follow the same path.

I will be posting more over the next few weeks to keep people updated with Jack's progress.

Please keep us in your thoughts and prayers!