Kate's Bone Graft, Part 3

Good, good news!  We visited Dr. N's office today, where he looked at her hip, looked in her mouth, and declared that she can eat and do whatever she likes. Yay!  So, all the way up the stairs to the parking lot I heard, "Can I eat tortilla chips?  Can I eat hibachi?  Can I eat gum?" And into the car, "Can I play on the playground at recess?  Can I go to gym?  Can I eat Halloween candy?  Can I eat the car?"

Um, no on the car, dear, but yes to the rest. Silly, silly girl.

And as we drive home, in the rain and high wind that caused tonight's Trick-or-Treating to be cancelled I hear, "Can I ride my bike when we get home?"

Kate's Bone Graft, Part 2

Warning: This information is largely for those who are looking for information on bone grafts in cleft kids, including myself since we will be doing this again in 4-5 years, but I won't remember any of this by then.  All of it will be way to boring for most of you.

 Pre-op

Kate went in for surgery early on October 3rd. Dr. N. had scheduled the bone graft to be done at a nearby hospital that we hadn't used before.  Check-in was smooth, although we had to repeat the same information to the nurses several times because they both seemed to keep losing the information they just collected.  The anesthesiologists were very nice, and one of them ended up holding Kate while she "went to sleep."

The surgery went very well, and Dr. N. was able to drill down into her right hip (iliac crest), remove some shavings, and then place them in her gumline to complete her upper jaw.  It is actually much more complicated than that, but that is as much of it as I understand, so that is all you will get from me on that topic, other than to say no donor, cadaver, or synthetic bone was used.  Dr. N. thought he would need to pull the left canine and molar (both baby teeth) so that he would have the space to repair the alveolar ridge, but thankfully he only had to pull the canine.  That left him with enough room to work. The hole was triangle-shaped, and it had actually be growing in the last year.  Before that it had shrunk it just a tiny hole.  

The recovery room was difficult, but only because it is yucky coming off the anesthesia.  That half-awake-where-am-I feeling isn't much fun.  And about two minutes after waking up she asked when she could watch Teen Beach Movie (ok, it was longer than that, but not much).

Once we got upstairs, we got settled in and popped in a movie, someone came around and asked if Kate had enjoyed her lunch.  I was confused by this question since Kate was on a clear liquid diet, having just had surgery on her mouth two hours before, but I said, "No."  The well-meaning tech then proceeded to ask Kate if she would like her to order some chicken nuggets for her for lunch.  Ummm, no.  Clear liquid diet.  She then apologized and had some broth sent up, which Kate did enjoy very much eat without complaining.

We spent the rest of the day in the bed watching as many Disney movies and TV shows that we could squeeze in.  She was not interested in sleep.  At all.  She did so well eating and going to the bathroom, that by 5pm, Dr. N. said that she could go home in the morning as soon as we were ready, and she could eat soft foods that didn't require front teeth (pudding, ice cream, mashed potatoes, etc).  Food services immediately brought her a sandwich.  The tech was in the room when that happened, so this time nice tech lady sent them back with instructions to bring her more broth and some ice cream.  I was just thankful I didn't have be rude again. I had already done enough of that, as you will see below. 

 Mmmm, ice cream and movies

There is no pediatric unit at this hospital, which means that some of the folks didn't know what to do with her.  We had a day nurse that did not understand pediatric pain management.  Usually, pediatric nurses come in and say, "We don't want her to be in any pain, so we will give the meds regularly until tomorrow morning, and then we will assess where we are and what she needs.  You just focus on getting liquids in her."  But this was not a pediatric nurse.  I had to call her every single time meds were needed, and when she brought them it took forever. She also expected my six-year old daughter to rate her pain on a scale of 1-10.  Puh-leaze.  Just the week before, Will had tried to explain this concept to her.  It wasn't going to happen.  She said 5 or 6 every single time, whether she was fine or in tears.  I asked why she couldn't just bring the meds on a schedule. The mean nurse said that Kate had to ask for them. As if a six-year old has the life experience to predict when her pain meds are going to wear off and when she might need more. 

When the night nurse showed up, I asked her right off the bat what our pain management plan was.  She said, "Well, the patient is supposed to ask for pain meds."  I glared.  She said, "Or I could go ahead and bring them in every four hours."  Yes, that seems like an excellent idea.  Why don't you do that?

And so the night went.  We didn't get much sleep, but her pain was well-managed.  Somewhere around 6am we all zonked out and were dead to the world until about 8:30.  And while we slept the day nurse came back.  I woke up to Kate beside me crying because she was more than an hour overdue for her dose.  I buzzed for the nurse.  No answer.  I stomped down the hall, but she was nowhere.  Finally the well-meaning tech comes in, takes one look at us, and offers to find another nurse to administer the medicine.  When our nurse finally came, I asked to be discharged immediately.  I knew I could do a better job administering meds at home than this lady could.

Overall our experience was fine, and there were even a couple of great folks we came across. (Kate even commented to me how the nice tech went above and beyond to make her comfortable.)  However, I was thrilled to get out of there and back home.

For the rest of Friday and Saturday, Kate was in a bit of pain, and I kept her on a regular schedule with her medicines.  She ate a lot of fried eggs and milk shakes, and she watched Teen Beach Movie.  A lot. (She stopped counting at eleven.)  Although she didn't have any swelling in her mouth on Thursday, there was considerable swelling on Friday and Saturday.  By Sunday morning it had disappeared. I woke up and heard her sweet voice singing and then asking for food.  I smiled, and she said, "I am feeling like myself again." YAY!

After that she continually got better.  We made her walk laps around the inside of the house every day, and over the course of about ten days she gradually went from bent over and hobbling to standing up straight and walking without a limp.  After a week, Dr. N. cleared her to eat soft meats cut up small, and anything she didn't have to tear at with her front teeth.  Crunchy, hard foods are still off limits.

As to the success of the surgery, everything looks great.  It is still too soon to tell if the bone is growing or if it has failed, but there no reason to think that there is a problem.  Hopefully, the worst is over, and it is all down hill from here.

Last, lots of people have asked me two specific questions:

1. Is this Kate's last surgery?  No, there will be at least one more to repair the hole in her right eardrum and to do a lip revision to address some of the muscle issues going on.  Hopefully it will help with her speech.  I can't say if there will be more in the future, since it will be up to her when she is older if she wants any more revisions done.  And of course, this is assuming no p-flaps, grafts, or anything else needed.

2.  Will Jack have this surgery done?  Yes.  Although his clefts in his alveolar ridge aren't visible without an x-ray, he does have bone missing on both sides of his upper jaw.  In 4-5 years we will do this all over again with him, although probably with a different team of doctors.  One of their doctors once said to me that you don't switch trains while they are in motion.  In other words, stick with one team until the palate repairs are done.  Because Kate's plastic surgeon had retired, we chose a different team for Jack.  That team actually has two oral surgeons we can choose from.  Now that Kate's palate repair is complete (fingers crossed), we will probably move her to that team as well, just to make our lives a little more simple.  Dr. L will do Kate's lip revision, and probably Jack's bone grafts too. 

Kate's Bone Graft, Part 1

Kate's bone graft really wasn't on our radar last year. It was something that the doctors said she would need when she was about eight, so although we knew it was out there in the future, we didn't spend too much time pondering it.  However, that changed when we saw Dr. N. at the Commission back in November. He wanted to go ahead and get X-rays of her mouth, so that he could track the growth of her mouth and determine when the surgery would be.  Dr. N. is an oral surgeon who has worked with Kate's (now retired) plastic surgeon for 30 years.  I asked him once what the likelihood of a bone graft failure was, and he told me that he had one fail once.  Once.  OK, you get the job. 

Kate is missing her left lateral incisor - aka, the tooth that doctors sometimes use to decide when to do this surgery. Because of this, there was a wider window of time to get it done.  Dr. N. said that either the summer of 2013 or 2014 would be fine, or even later if we needed to wait for whatever reason.  We went home that day thinking 2014 sounded fine with us. Or later.

Then in the spring a couple different things happened that caused us to start reconsidering.  First, the central incisor started coming in at a weird angle.  And when I say weird, I mean it was pointing straight out and the bottom edge was vertical and pressing on her lip.  Thankfully it has now started to rotate itself down into a better position, but it still has a way to go, and it irritates her upper lip.

Second, the other three lateral incisors started to erupt, meaning that her jaw was close to the right stage of growth for the bone graft to happen now.  This was surprising since Will still has one of his baby lateral incisors, and at the time this happened, he had two or three.

Third, one day at a visit to Jack's plastic surgeon, Dr. L. was making small talk with Kate and got this look on his face that meant he noticed something.  He asked her to start making faces (lip puckers, etc.), and according to him, all of Kate's upper lip muscles aren't properly connected.  That was news to us, since her (now retired) surgeon never mentioned it.  So I started making appointments and asking questions.  Within a very short amount of time we saw the other members of Kate's plastic surgery team (who thought there was no muscle issue but wanted to do some work to minimize the scar - I said no; they also said that they would work with either Dr. N for the bone graft, or their ENT for an ear drum repair, but not our ENT), an orthodontist (who said he would normally do a palate expansion on a child getting ready for a bone graft, but wasn't going to touch that front tooth with a ten foot pole because it could fall out if we start shifting things around), her ENT (yes, we can do her ear drum repair when we do a lip revision; no, we can't do an ear drum repair when we do a bone graft), and three different speech therapists (who all agreed with Dr. L., something was amiss with that front lip).

By this time it was May of 2013, and honestly it was too late for a summer 2013 bone graft, what with vacations and all (ours and Dr. N's).  Plus, was had to make decisions about which surgeries to do and which ones could/should be combined.  I consulted with Dr. L through all of this too, even though he has never seen Kate as a patient.  I decided to wait until summer 2014 so that she would have time to heal, and I would have time to mull over the choices.  There was no reason to rush.

As we considered, the decision was made to have Dr. N. do the bone graft, and then later, after she was healed we would have Dr. L do a major lip revision while Dr. M (ENT) do a ear drum repair at the same time.  Three birds with two stones.  

As summer rolled by, I became more and more thankful that I hadn't scheduled a bone graft.  Talk about busy!  We didn't slow down at all, and as per usual, we barely saw Tim except on vacation.  Also as the summer rolled by, I realized that there was no way I could schedule a bone graft for next summer either.  It wasn't going to be any better!  I knew he was suggesting summer because it is when lots of people's lives slow down, but let's face it, we aren't "lots of people."

I called Dr. N's surgical coordinator in August to discuss the possibility of doing it over fall break instead.  She suggested the Thursday before break, and then Kate would have eleven days to recover before school resumed.  Mimi could come up and care for the boys, then they could be farmed out when we got home from the hospital on Friday.

And that is what we did. 

(Stay tuned for Part 2.)

Jack and the Hearing Saga

When we first saw Jack's file over a year ago, it was noted that he had severe/moderate hearing loss.  At the time we had two thoughts concerning this.  First, it was probably conductive loss related to his cleft palate.  If so, a good set of tubes might go a long way in helping him hear. (As one of Kate's doctors told me once, it is hard to hear with tapioca pudding in your ears.)  Second, even if the loss is permanent we have lots of resources to help a child with partial hearing loss.

So, we started the process and honestly did not give a lot more thought to his hearing loss. It was one of those We Will Cross That Bridge When We Come To It kinds of things.

Fast forward to last April when we met him. We had some indication that there might be loss.  For example, he is really loud.  No really. He is loud. Also, (unlike Kate, who also had moderate hearing loss) he had no connection with his Chinese name, even when spoken by people at his orphanage.  Was it because he couldn't hear or was it that they just never called him by that name?

Within a few days though, we noticed he was easily turning his head towards all sorts of sounds, and he was responding to the name Jack. This confirmed - for us anyway - that his loss was moderate at worst, not severe.

Once home our regular audiologist (#1) confirmed this for us again through a series of tests.  However, everyone and their mama thought we still needed to get a sedated ABR hearing test to further nail down the type and severity of the loss.

Remember all of the rigamaroll I went through to get the ABR?  Blech.

So in August, after his tubes were placed but before Dr. L repaired his palate, an audiologist (#2) came in and performed an ABR.  I was so confident that his hearing would come back with minor or no loss that I didn't give it a lot of thought.

Except that isn't what the report said.  The audiologist (#2) (who I had never met before) told me that Jack had moderate/severe sensori-neural loss and that he needed hearing aids immediately.  That he wasn't hearing well enough that he would ever learn to speak without aids.  Honestly, it was a punch in the gut.  I cried for quite a while before I felt ready to go back into the waiting room.  In my head I knew that this was a possibility, and I thought I was prepared for it, but the reality was a lot more painful.

Tim and I together decided we weren't ready to share this news.  Keep in mind that we were still dealing with the fact that our 2 year old was in surgery.  And for my part, I knew that I needed to get to a point where I wouldn't cry every time it was mentioned.  The last thing Jack (or I) needed was pity.  We needed resources and strength.  Jack would need the confidence to know that hearing aids would not slow him down or stop him from anything he wanted to accomplish in life.  It had to be no big deal.  And honestly I wasn't there yet.

We went in to see our regular audiologist (#1) a couple of weeks later.  Immediately, she questioned these results.  She questioned the type and severity, maintaining that Jack's loss was conductive and minimal, and she tested him again.  Over the course of the next few months she repeated those tests more times than I could count.  I carried the results to pediatricians and ENTS, looking for answers to these conflicting reports.

In the meantime, Jack was starting to talk.  He said the word ball.  Daddy. Wah (water). And one night I was putting him to bed.  It was pitch black in the room, and we were whispering to each other. He would say, "Mama," and I would say, "Jack."  Back and forth we went. And then I said, "Time to sleep, Jack." And he rolled over and went to sleep.

I know some of you are marveling that he listened to me, but I was marveling that he heard me! I whispered!

I went in to see audiologist #1 and told her, and she cried. I love that woman.

Then last month Dr. T, the international adoption doc, suggested we see her friend who is an audiologist (#3).   I had been considering a third opinion from the place this woman works anyway, so I was game.  They got us right in, and audiologist #3 did a series of tests and then says, "Jack has normal or near-normal hearing.  He does not need aids." And I cried again. I asked, "How could this other, supposedly objective test have been so wrong?"  And she explained to me how the instruments can sometimes get covered in the blood and other fluids present in a surgical situation, thereby making them inaccurate.  It wasn't anyone's fault. It just happened.

And so here I am, considering all of this.  I am extremely grateful that his hearing is fine, not only because I am a normal parent who wants their child to have normal hearing (even though I was perfectly willing and able to parent a child with hearing loss), but also because now we only have to have hearing checks a couple times a year. Which is really great, considering my recent complaints about frequent doctor appointments.

But through this process I have also thought a lot about what it would mean to have a child with something the rest of the world considers a disability.  I have given a lot of thought to parents who want their child to not be seen as a deaf child, but a child who happens to be deaf.  Do you see the distinction?  They don't want the emphasis to be on the deafness, but rather on a child who has infinite possibilities for success in his life.

This is another post without a neat bow.  I am thankful for Jack's hearing. I have twice been given the gift of a child whose hearing loss was restored.  (And twice the gift of children who have no hearing loss but severe selective hearing loss, iykwim.) I guess what I am saying is that maybe when I hear a child has a diagnosis, I will think twice before saying, "I am sorry."  Not that there isn't a time and place for I am sorry.  There is.  I just know that it wasn't something I wanted to hear. I did not want anyone pitying my son, who is one of the smartest kids I have ever met. (He is starting to recognize letters.  He is 2 and has only heard the English language for the past 8 months, 4 of which his ears were full of tapioca pudding.)  He is going to do amazing things, and it has nothing to do with how well he hears.  Next time I will be more likely to look past whatever the child has, and see the child's potential.  That is what is best for the child.  And for his mom.

Jack: Two Weeks Post-Op

Thankfully Jack is on a solid diet now.  We are still keeping it fairly soft (no pretzels because Mama is mean like that), but he is mostly eating regular foods.  If he could talk, I am pretty sure he would say that he is never leaving the kitchen table ever again, thankyouverymuch.  He is that obsessed with food. He thinks about it all. the. time.

Also thankfully, his signing vocabulary has probably doubled since his surgery.  He was already signing more and milk, with an occasional - water, up, and down - thrown in there.  He now signs water all the time, and also signs: banana, food, shoes, socks, and please. We are very impressed.  And he is very impressed with himself.  There is something magical about that moment when a child realizes that he can communicate what he wants, and that mom and dad Understand! It is beautiful.

We are still watching one of those spots in his repaired palate to make sure it isn't a fistula, but no amount of watching will make it be or not be a fistula.  So I am trying my best to leave him alone and wait for the surgeon to look at it again in two weeks.

I have lost track of how many health care professionals my children have seen in the past month.  Seriously.  Dentists, surgeons, speech therapists.  I am not a soccer mom.  I am a waiting room mom.  Go team.

And now for some pictures.  I took these about a month ago, but forgot to post them.  I was probably in a waiting room when I should have been posting.

 

 

   

Jack: One Week Post-Op

Jack saw the plastic surgeon today for his one week post-op appointment.  Dr. L. said that it looked like it was healing well, and that if a fistula (hole) was going to form at this point, there isn't much we can do about it.  He said that chances are that there will be no fistula, but he pointed out a couple of locations where they could possibly develop.  And yes, Jack is still on liquids/baby food consistency until Tuesday.  Blah.

He hates hates hates his current diet.  I am not sure what he hates more - that he can't have normal food or that we don't let him have full control over the spoons and syringes we use to feed him.  For a kid with food control issues, this is a killer. His diet right now is mostly yogurt, baby food bananas, hummus, and Pediasure milkshakes. And he is eating less - he is kind of bored with it.  Who can blame him?  There are only so many times you can eat baby oatmeal without wanting to fling it at the wall.

And one thing I have learned: baby food is just as nasty now as it was ten years ago when I fed it to Ben.  Yay.

On the bright side, he isn't in any pain, we are finished with all medications, and he is back in his own bed (even if he still isn't sleeping through the night). He is also using a B sound now.  I just got serenaded with a beautiful song called "Ma-ma-ba-ma-ba-ba". It was awesome. We are praying that he won't develop any fistulas and that his healing will continue over the course of the next months and years. 

Jack's Surgery, Part 2

I apologize for not posting another update yesterday, but once your child comes out of surgery there are more important things than blogging. The repair went well, but it was more complicated than the doctor thought it was going to be.  The repaired cleft in his lip was unilateral, so the assumption was that the palate was too.  We were also hoping that since his gumline is mostly intact that he would not require a bone graft when he is 7 or 8.  We were wrong on both counts.  Apparently the palate was more of a bilateral cleft, which means there is a cleft on both sides of the mouth.  I knew it looked bilateral to me, but I had never had a doctor tell me it was, so I just assumed that my uneducated eye didn't know what it was looking at. 

Also, the clefts extend into the bone of the gum line.  So even though it looks like his gum line isn't affected much, he is missing bone on both sides and will need a bilateral graft later on.  This is disappointing news for Jack, but will be manageable, of course.  Bone grafts are just considered to be very painful surgeries - I know from experience with my leg that the bone doesn't really numb.  The skin and tissue around it might be numb, but when you mess with that bone it hurts like the devil.

Ear tube placement also went well, although we haven't actually talked to Dr. V.  She had another appointment to get to, but it apparently was a standard tube insertion.  His ears don't seem to be bothering him.

His mouth on the other hand, hurts a lot.  He spent most of yesterday curled up on top of me, either sleeping or moaning, or moaning in his sleep.  He didn't sleep very well, and any rest he did get was thanks to some good drugs.  Today he is feeling much better, but still  not himself.  There is still some drainage and it hurts for him to swallow.  We are having to force feed him liquids, pudding, and applesauce with a syringe so the doctor will let us go home. 

We did venture out of the room today.  We went and found the playroom, where we played trains for awhile.  He also spent most of the morning awake, playing trucks and reading.

The plan from here is to go home this afternoon/evening.  He will then be on a liquid/baby food diet for two weeks, so don't expect to see us much in any place where they might serve food. My boy loves to eat, so this will be hard for him.

Posts (so far) about Jack's cleft/developmental/IA issues:

• Let the Appointments Begin!
• Appointments, Part 2: Audiology
• Appointments, Part 3: Plastic Surgeons
• Appointments, Part 4: The Dentist  
• Appointments, Part 5: Early Intervention 
• Appointments, Part 6: Speech 
• Appoingments, Part 7: ENTs (and Plastic Surgery Revisited)
• Jack's Surgery (Part 1)

Jack's Surgery

Jack has gone into surgery. Tim and I are hanging, seriously considering breakfast and any other distraction that might come our way. They are going to place ear tubes, do a sedated ABR (hearing test), and then Dr. L will repair his palate. It will probably take around three hours, but each doctor will give updates as they finish their part.

I am a big bundle of nerves.  Trying to prepare my heart for the crying and clinging that will happen.  Praying that he is already asleep and that Dr. V already has those tubes in. Praying that when he wakes that they will get us back there super fast to comfort that sweet little man.  Praying that everything goes more smoothly and perfectly than any tube/palate job ever. 

Not impressed with the new jammies.

Much more impressed with the transportation.

Appointments, Part 7: ENTs (and Plastic Surgery Revisited)

I have had messages from several of you about what a bad, bad blogger I have been. During the summer Tim is gone a lot with the church youth, and I am doing the single parent thing.  Plus, the kids are home with me all day, which means by the time they drop into bed at night, I am to tired to process a coherent thought. I thought about writing this morning because I didn't have anything on my schedule.  But then I spent an hour scheduling doctor's appointments for five different people.  Good times.  

Anyway, on to the point of this post.  ENTs and plastic surgery.  Now you may be wondering why I am talking about plastic surgery again, when I just talked about plastic surgery two months ago.

Well, after Jack saw the Commission doctors, we saw the ENT that did Kate's first set of tubes, thinking that he would do Jack's too.  Sure enough, he was willing to work with Dr. Andy to do them at the same time as the palate repair, but he was unwilling to do the sedated ABR (hearing test) the same day.  He said he really preferred to do the the tubes and ABR first, and then let them do the palate repair later. 

I nicely told him that if he was unwilling that I would have to take Jack to the other major hospital in town (that Kate is now a patient of) and let them do it all over there.

Suddenly he was a willing participant.

Fine.  So I spent the next two weeks playing phone tag with the ENT's surgical coordinator and Dr. Andy's surgical coordinator, trying to get them to work together.  They finally called me back with a date in the middle of August.

Fine.  So then the next day I got a call from the Commission (remember how much I love them, she says sarcastically) telling me that Jack cannot get the sedated ABR done at this particular hospital because they (the Commission) don't have an audiologist contracted over there.  They wanted me to go ahead and have the tubes and palate done, and then have a non-sedated ABR done in their office at a later date.

Fine.  So I spent the next 24 hours mulling over all of this, and I realized that we were talking about something that was still more than two months away.  I then I realized that this was more than enough time to research other options.  Because at this point, I was fed up beyond belief at having to argue with the Commission, argue with a doctor, and play phone tag for weeks on end.

So, being me, I went into research mode again.  I go to the Rumor Queen boards.  I go to the Adopt Cleft Yahoo boards.  I call people I know locally.  And I learned I had a couple of really excellent options at that other hospital across town (where Kate sees her ENT).  So I made the call to the Commission to request an appointment with the physicians over there.  Of course, they wanted me to wait and go through clinic again.

In August or September.

No, we just went through clinic in May.  I am not waiting until August or September.  I want to go to their offices and see them there.  Now.

And so we spent last Wednesday at that other hospital seeing Dr. V, the ENT, and Dr. L, the plastic surgeon. 

Dr. V was very nice.  She took what little history we had and agreed that Jack probably needs tubes placed.  She explained that because it is such a minor procedure and the palate repair is a much more complicated surgery, that the palate repair would be scheduled first, and then whatever ENT in their practice was at the hospital that day would do the tubes.  Since we are already in there so often and I know how they work, I am comfortable with that. 

Then we went downstairs to see Dr. L.  Now, every time I asked for recommendations for Dr. L, people would say, "Oh, he is the fireball.  You will love him." And then they would go on to tell me how he pours himself into his patients, staying on top of the latest techniques, and is just eager to do his best every single day.

He did not disappoint.  We saw his student first (SOP at this teaching hospital), and then Dr. L came in without a white coat.  Ie, he didn't terrify Jack right off the bat. He takes a bit of history, looks at his palate, explains to me structurally why Jack's left ear is a little different from the right one, notices the stitch that has been in his lip since that repair in March 2011.  He tells me that he doesn't use no-nos on kids this old and that Jack doesn't have to be weaned from his soft-spout sippy.  He notices Kate, asks if he could look at her palate repair.  Kate says no, but I try to persuade her.  He stops me and says, "No, that's ok if she doesn't want to."  Ie, he cares about how patients feel, even when it isn't his patient.

Then he told me that his surgical coordinator was on vacation all week, but that he knew he had an opening on August 28 so if we could get it all coordinated that it would probably be that day.  I am sorry, but I have never known a surgeon to have a clue what their schedule looks like a month out with a coordinator telling them.  Wow.

Then he gave me his personal email address (in case I thought of any other questions) and his personal secretary's phone number (in case I couldn't get him via email).  Again, never had a surgeon do that before.

Oh, and we were in and out in just over 25 minutes (not counting new patient paperwork) and spent about 20 minutes of it with him.  Again, a record.  

So, all that long story, just to say that we now have a new plastic surgeon and a new ENT.  Still waiting on the final details, but it looks like they will do the repair, the tubes, and the ABR all at the same time, and Jack will spend the night at the hospital .  I am feeling good about the whole thing, whereas I had a bad feeling about everything over at the other place, what with the arguing and such.  Those other docs are good physicians/surgeons, I like the other hospital fine, but I think that this is a good place for Jack right now. 

Posts (so far) about Jack's cleft/developmental/IA issues:

• Let the Appointments Begin!
• Appointments, Part 2: Audiology
• Appointments, Part 3: Plastic Surgeons
• Appointments, Part 4: The Dentist  
• Appointments, Part 5: Early Intervention 
• Appointments, Part 6: Speech

Posts (yet to come) about Jack's cleft/developmental/IA issues:

• Surgery 
• ???

Ahhhhh, some good news.

Kate NaNa had her follow-up appointment at the ENT today. This was for the tubes (set #3) that were put in twelve days ago. I was a bit worried going in because yesterday she complained about one of her ears hurting. Not good. And today, she told me her throat hurt. Also not good. So let's just say I was less than optimistic.

Surprisingly, her tubes looked great. The doc uses cameras to look inside, so I get to see what he sees on the television (which is really way cool, btw). She was a tad waxy, but it wasn't touching the ear tubes, and there was no infection. Can you say Hallelujah? After driving a half an hour to his office every two weeks for the last three months, we are happy to take a little vacation. We don't have to go back for three more months. What will we do with ourselves? Oh yes, next month is the cleft clinic and audiologist, not to mention preschool, and...let's just suffice it to say that I am sure we will come up with something to fill our time.

In other news, I have several posts stewing in my head, but I don't have time to write them because I am in crunch time in this super-big project at church. In fact, I am so busy that I don't even have time to explain it to you. But know that I haven't died. I am just running on no sleep, and almost everything is getting pushed to the back burner. (I am hoping my dear husband will come home soon so he can fold laundry and make this house look like I do something other than lay on the couch all day.

Update on Kate

Pics from before surgery...

Just wanted to update really quick. Kate's surgery yesterday morning was fine. She woke up cranky and screaming, but once the meds wore off her mood improved considerably:) She got to spend the entire day on the couch enjoying a Phineas and Ferb marathon, and right now she is bouncing around and in a great mood. The only part she hates is the ear drops. Which she really hates.

Thanks for the prayers and phone calls. We don't see the doctor for two weeks, at which point we should find out if it all went as well as we think it did.

Ear Tubes, Part......4?

Yesterday, Tim took Kate to the ENT. I fully expected it to be a "Yes, there is still improvement. See you in four months," kind of appointment. But that was not the case.

Only two months after her last surgery, she has to have another set of tubes put it. Ironically, it wasn't even that right tube that has been clogged that finally convinced the doctor. Nope. The left tube? The one that has been fine all along? It fell out. Yipee.

At first I was really frustrated. Well, actually if I am being honest, I am still frustrated. But if you remember, I was praying for a clear direction from God on what we should do about that silly right tube. Well, the left one falling out is pretty clear. It wasn't my first choice, of course, but we don't have promises of "easy" now do we? We have promises that He will never leave us, and that if we ask him He will give us wisdom. And a whole bunch of other promises too, but those are the ones I am leaning on today:)

The surgery is scheduled for August 6th. On the bright side, at least we don't have to do ear drops for a couple weeks.

Ear tubes? No problem.

It's early, Mama. It's still dark.

And I'm really not sure I like this hat. Or the idea of going with these people.

Maybe Daddy and I could play a funny game while we wait.

Yep, that Daddy always cheers me up.

But when it's all over, I want Mama to hold me. And then I will just sleep all the way home.

Once I am home, I am sure I will feel much better. Maybe I will watch TV or play with my brothers.

Yep, it's gonna be fine. These ear tubes are a breeze. I feel better already!

I won!

I am soooo excited:) I keep saying that over and over again, but it's true.

I just won a giveaway that I didn't even know I had entered.



A few weeks ago, Tonggumomma posted this beautiful Chinese lullaby, which my kids and I completely love. {Thanks, TM!} Then she asked for other songs that reminded us of adoption. I posted this song (it's the first one that plays), which Will and I listened to a lot as we waited to bring home our third tomato. (As an aside, we don't have a clue who sings this or what the title is. If you know, please let me know.) As we would listen, we would have all these conversations about whether tomato #3 was a boy or girl, how old, which province, and all of that.

By the way, it's not that we were leaving Ben out of the conversation, he just didn't really like that song and was always frustrated that I didn't play Istanbul instead. And, lest you think I didn't talk about this stuff with Ben, know that anytime I was frustrated with waiting and ready to give up on adoption, I was reminded by Ben to pray for our tomato #3. Every. Single. Night. Seriously.

(Is that a convoluted intro or what?)

Anyway, apparently my comment was an entry to a CD giveaway, and I won! See? I'm so excited:) It's also apparent that I ramble when excited...


**On another note, Kate NaNa (aka, Tomato #3) will be having her ear tube surgery tomorrow morning at 7:30. Say a prayer, if you don't mind:)

Time for More Tubes

After multiple frustrations to get in to see Kate's new ENT, we finally saw him today. Of course, not before I had to discuss Kate's case with the Commission...again.

Me: Hi, I'm just calling to make sure you sent my daughter's paperwork to her new ENT. We see him today at 2:10.

Commission: Ummm, ma'am, you can't do this to me. You have to give me more than a few hours warning. The doctors get really mad when I don't send the files....

Me: (Interrupting) I understand you have to know ahead of time. That's why I asked you to send them a month ago. I am just calling to make sure you actually did it. This is a check on YOU.

Commission: Oh, yes, ma'am. I'll send them right away.

Me: Thank you. (Much growling and complaining to follow...)

Anyway, as I drove over there, I thought to myself, if she didn't actually send the files, then we can't actually see the doctor. If that happens, I swear we are just not meant to see this doctor. I will just take it as divine intervention. Perhaps we should choose Dr. P..... (More muttering and growling...)

Thankfully the file and pre-authorization had been sent, and the clinic staff was much nicer than any others I have dealt with at the university hospital/clinic. But of course there are pros and cons to the university clinic. For example, it's so old and beat up and ... gray that you feel like you are in a Soviet block country. It's also one of the least child-friendly places I have ever been. On the other hand, we saw three different doctors. Dr. S. is an assistant to the ENT we were there to see. She cleaned out all the wax out of Kate's ears. We had been trying to get doctors to do this for about a year now, but no one would do it until today. Everyone has been terrified of scaring poor Kate, but they couldn't see what in the world was in her ears for all the gunk. So we held her down while she cried, and Dr. S. got it all out. She also diagnosed Kate with retracted ear drums. This is a fancy was of saying her ear drum is bending in ways it should not be bending due to the pressure in her ears.

Then a second doctor came in. She was obviously there to learn. It is a teaching hospital after all, and anytime we are in that situation, doctors send their students in to learn about cleft issues first hand. As long as they don't perform any procedures, they can look all they want.

Then, finally, Dr. M. came in. He was very nice, looked in her ears, and then took quite a bit of time to explain what a retracted ear drum was. (I needed the extra help.) We discussed long-term possible prognosis and treatments until I felt really confident with the whole thing. I have always liked Kate's old ENT and his comfy, child-friendly office, but there have always been two things that drive me nuts. First, he would never fish that wax out. Second, he was always in a hurry, and I never felt like I understood why we were doing what we were doing. So, Dr. M. is OK in my book. And Kate should have her new tubes next week.

Pray for her. Pray for me. And pray for whatever clinic/hospital employee gets in my way in the next week. Mama Bear is looking to take care of her babies.

Frustration

***Warning: Long, venting post about insurance and doctors. Read at your own risk.***

Kate was supposed to have ear tubes put in next Monday. Supposed to. But we all know how that word works, right?

This past Monday, her doctor's office called to discuss fees, since we haven't met our insurance deductible yet. There were no surprises there, but the conversation reminded me that I needed to call the Commission to make sure that they were still not contracting with my doctor.

(For those of you who don't know what the Commission is, it is a program in our state that provides care for children with various medical needs. Kate is a patient of one of their cleft teams, and they have provided her with dentistry, audiology services, and plastic surgery services, including her palate repair, free of charge. The providers are wonderful. The red tape? Not so much.)

So, I call my coordinator at the Commission, and she informs that while my doctor is not contracted with them, there are other ENTs who are. WHAT? Before, I had been told that there weren't ENTs, and I had to find my own. Now, 18 months later, the story has changed, and we are faced with a decision. Continue on with our current ENT, or change providers for these ear tubes.

What to do? The doctors are less than a mile from each other, so the distance is negligible. I know nothing about the new doctor, but I honestly don't have strong feelings about Kate's current provider either. He has done a good job, but I get frustrated with him sometimes too. But I prefer him more than I prefer going to a new doctor.

To get the whole picture, here's little background on me for ya. I'm a researcher at heart. If I need to buy something new, I will read all about it, price check at least three different stores, and ponder the decision for a month before I purchase it. Not every time, but the bigger the purchase, the more the research. You also need to know that I used work for an optometrist, and one of my responsibilities was to contact insurance companies to find out patient benefits before the patient came in. Plus, I have had to fight with my insurance companies to provide coverage for me and my children on more than one occasion. I know the lingo. I ask a lot of questions. I threaten to report them to my state's department of insurance. I annoy the crap out of them.

So, I did not just say "whatever" and do what they told me to do. Partly because everyone was telling me different information. One person told me that if I used Commission providers, I would be billed at 65% of the total cost. Then I heard that it was 65% of the allowable cost of my insurance company. Then it was the Medicaid rate.

Lost yet? I sure was.

In addition to my doctor's office and my contact at the Commission, I contacted eight other people (not counting receptionists), trying to figure out what my costs would be if I used a Commission provider versus Kate's regular ENT. Which meant I had to explain the problem to every. single. person. that I spoke with.

So what did I discover? After talking with three different offices at our regular hospital, I put together an estimate of what they would bill us if we used them, along with what our insurance's contracted rate was and what we would be responsible for. It was higher than I expected (choke worthy, in fact), but still do-able. Then I called the other doctor/hospital that is contracted with the Commission and found out what they would charge, approximately, of which, no one seemed to be able to tell me what I would be responsible for. I made phone calls for three days, left more messages than I could count, and cried a lot, and still was no closer to knowing what I needed to do.

This morning (day 4) I woke up to start calling back all the people who still hadn't returned my calls, and with a plan for finding out the Medicaid rate for this procedure. Thankfully the first person I talked to actually seemed to have some answers. She said that if we used the Commission provider, that they would bill our insurance, and then they would bill the Commission, and then we would not be responsible for any of the associated costs. I told her that this contradicted what several other people had told me. She checked her information with the supervisor, and yes, it was correct information. So let's see, do I want to be charged a whole lot of money or $0? Hmmmm.

How does a mom weigh a free doctor that she doesn't know against an expensive doctor that she does? This isn't the first time that I have had to make a decision like this. We had to do this about a year ago when we got new dental insurance. We loved our pediatric dentist. Loved. But our insurance wouldn't pay for her. They would only pay for one specific pediatric dentist. So I cried. And I called our insurance and complained. And then I called the new dentist. And guess what? We love her even more. She is completely amazing.

But I am still frustrated. Frustrated that I didn't know about the ENT contract until this week. Frustrated that now we have to visit another doctor. Frustrated that this will postpone Kate's tubes until... I don't know. Frustrated that even after I made a decision, I still had trouble contacting Kate's coordinator who had to pre-approve the new doctor before I could make the appointment. And then I had to talk to three other people to make it happen.

{sigh}

And some of you people wonder what I do all day...

Update #2 - Ears

Although Kate's surgery will be life altering down the road, and it was certainly difficult at the time, we aren't really feeling the effects of having her palate repaired yet. There was no immediate sucking ability, no sudden improvements in speech that I would link to the repair.

However, there is one BIG improvement that often goes unnoticed because it has become our new norm. What is this big improvement you ask? Well, in the past month, Kathryn Xuna has had ZERO ear infections! Woohoo! Who knew I could get so excited about something so tiny as ear tubes?

Before we brought her home, we knew that there was a good chance that she would have chronic ear infections, possible deafness, and would likely need ear tubes. I didn't have a lot of experience in this area since Will only had two ear infections when he was tiny, and Ben has never had one. Fast forward to last October, and I have had a crash course in them. Since then, Kate has been on 5 different antibiotics to fight ear infections. I figured up at some point that she was on them more than she was off them. Poor kiddo. We were in the pediatrician's office weekly getting her ears checked out.

The first time we went to the ENT, he didn't even look at her ears. I told him she had had three infections (at that point), and he agreed on the spot that she needed the tubes. We were able to coordinate his services with the plastic surgeon, so she had the tubes put in just minutes before her palate was repaired. Dr. O came out and told us that often the fluid in the ear is very runny, but hers was more like tapioca pudding, which meant it had been there a long time. Who knows how many infections she had when she was in China? He had to suction it out. Ick.

He then told me that I would be able to diagnose her infections from now on. He said that there would be stuff running out of her ears, and he gave me some drops to put in them. At the time, I thought that the this was great because we are just about sick to death of running to the doctor every time she has a slight fever. But I have to say, there is so much freedom now. Take last week for example. We were in Ohio for 5 days, and my kids ALWAYS get sick when we go to Ohio. (Actually they always get sick when we go anywhere.) I always worry about packing the thermometer and tylenol and motrin and whatever else I predict a sick child will need. I worry about seeing an "out-of-network" doctor that my insurance may or may not pay for. This time, I threw in the ear drops and thermometer, and I didn't worry. I knew that if her ears started oozing, I had the drops and could deal with it. But the best part is, I haven't needed the ear drops since her recovery. She hasn't had a single ear infection in the past month!

Also with this improvement, we are hoping that her hearing will improve. Before her surgery, she had mild-moderate hearing loss. It was kind of like hearing underwater for her because of the tapioca ears. We had her hearing tested a couple of weeks ago, but we didn't get the results we wanted. Basically she wouldn't pay attention. She thinks the tests are fairly boring. One audiologist told me that was a sign of intelligence:)

I have feared that the hearing loss would be permanent. It is certainly a possibility. But then, the other day we were in Ohio, and there were birds chirping outside. It was a very soft sound. Honestly I didn't even notice it myself, until she started signing "bird bird". This is a very good sign because the chirping was similar in tone and volume to the sounds she wasn't responding to in the audiologist's office. So there is still the possibility that there is some permanent loss, but things are looking good. We are incredibly thankful for Kate's wonderful doctors. God has blessed us in bringing them to us.

Surgery Update

I mentioned last week that I needed to do an update on all things Kate, and I finally found a moment to do it in. Right now I am in a hotel room in Ohio while my husband is at a youth ministry conference. Kate is asleep in the bed beside me, and the boys are in the responsible hands of my father (which probably means that they are watching Lion King 1 1/2 for the 12th time today:)-Hi, Dad, just teasing a bit;). Mom has been helping out too, carting them back and forth to school.

Anyway, Kate's surgery to repair her palate was exactly a month ago, and in hindsight, I can say that she has done beautifully. But for honesty's sake, I probably need to lay out the gory details (well, maybe not all of them). The first day was awful. Completely. She cried when they took her out of my arms. She screamed at me when I went to her in recovery. (I was going to insert a photo here, but it was just too awful, poor girl.) She clung to me whimpering for about an hour after that. The only thing that cheered her up was when we both got to ride in a wheelchair that took us to her room. I asked her if she liked the ride, and with snot and tears and blood oozing out of her face she nodded yes. She slept most of that first day, allowing both Tim and I to comfort her. Naturally, she didn't sleep at all that night. On Day 2, she felt some better, but still did not want to drink anything, and we had to force any medications into her. She watched Elmo videos and cuddled with us, and was glad to go home later that day. (She also enjoyed playing tea party with Daddy.)
The next week was AWFUL. Feel free to read my previous posts for more detail.

Throughout all of this, she was extremely hesitant to let anyone look into her mouth. She was swollen (a lot) and bleeding (a little), and it was hard to see how it would look eventually. After about 2 weeks or so, she threw her little head back and laughed, and I saw a uvula - I was so excited!

She stayed on a soft diet for about 10-14 more days, with me progressively giving her more difficult things - but still nothing crunchy. She is now eating pretty much whatever she wants, although taco shells still scare me for some reason.

The inside of her mouth looks fabulous. I can still see some whitish areas down the middle that are still healing, and the ridge there is deeper than the other side. I'm not sure if this will change over time, or if she will always be able to feel where the cleft was in the roof of her mouth. There is still a pinkie-sized hole near her gum line that was left on purpose. It will close some on its own as the palate continues to heal. According to the doc, her mouth needed some room to grow. Once she is old enough for permanent teeth to begin to come in, it will be time to do a bone graft in her gum line and close off that hole.

The doc also clipped off a bit of extra skin that hung down where her lip was repaired back in 2007. That part of the surgery drove her crazy, and she was constantly trying to chew at her lip. Thankfully the stitches were on the inside, and she couldn't get at them. They mostly dissolved, but one tiny piece worked its way out of her lip. She pulled it free last week, and it hasn't seemed to bother her since. You can't even tell that there was work done there now. I don't know if she will choose to have further plastic surgery done or not. The lip line is a bit uneven, and her nose is slightly flat (you really only notice it if you are looking up her nose, which most of you will never have occasion to do). It really isn't even an option until she is a teenager, and by then she will be old enough to make that decision on her own.

Now, onto the dental update. Naturally, neither the dentist nor the oral surgeon has privileges at the same hospital as the plastic surgeon (so much for everything being coordinated), so we had to schedule the tooth extraction for 3 weeks later. One of her top teeth had rotted and broken off, and there was a visible cavity on the bottom, so we scheduled a semi-sedation visit with our dentist. She also did X-rays and found that there is no baby tooth or permanent tooth where the cleft was. That was a surprise to me, as I was sure I had seen a tooth up there at some point. Anyway, that means that she has two missing teeth on the top (the extracted one, and the non-existent one). She complained more about this procedure than about the surgery and asked for pain meds for a couple of days.

We have already had a stranger ask how she lost her tooth, and I just said that it was rotten and the dentist had to pull it. Let them think I am a bad mom for giving her too many sweets or whatever. I am not going to get into a dissertation on the oral health of cleft children in line at a grocery store. (Actually I may someday, but that day, I was so not up for it.)

So, that is the extremely long version of her recovery. The short version is that I think it looks great. People have been cracking me up by telling my how good it looks, when they have never seen the inside of her mouth, and that is where all of the surgery was done.

I will try to do updates on her speech and other adjustments soon. But this is enough for one night, don't ya think?

A Quick Update

I don't have long before the munchkins find me huddled upstairs over my laptop, but I wanted to post a quick update. First, we are fine. We have power, plenty of food, and the roads are pretty clear today.

Second, Kate's recovery is going as expected. In other words, she is hungry and mad that we won't give her any food. She is living on chocolate ice cream, milk, water, and antibiotics. We have offered her juice, chicken broth, beef broth, pediasure, pedialyte, and evey other liquid we can think of, but she isn't interested. We are now on Day 4 of our "hiding food from Kate" adventure. We are trying not to eat around her, which is making life interesting. Hopefully, the next few days will pass quickly.

The munchkins have found me, so I gotta go!

Surgery Day

Kate, just before surgery

With all of the snow and ice coming down, it should be a great day to stay at home, cuddled up on the couch, right? Well, not us. Evidently the good Lord decided that it was a fine time to be out on the road, driving to the hospital. Kate's surgery was scheduled for today, so we were out in this mess by about 4:45am to get to the hospital by 6am. We got here in about an hour, but the surgery was a little delayed, presumably by a doc who was delayed by the weather.

The surgery went well. It took about an hour and half or so before we were called into the recovery room. When we got there, she had been awake about 2 minutes, and boy, was she mad! I don't think she was in pain, but she was mad at everybody and scared. She would tense up whenever someone came near to check the IV or hear her heartbeat. She has slept through most of the day, waking only occasionally for medicine and some milk to drink. About 3:30 she woke up to a few visitors and wanted to play with her tea set and her new stuffed animals. Now she is watching an Elmo video about babies and dogs.

Thanks to all who lifted her (and us) up in prayer. Please continue to pray for her recovery. We think she may have already done some damage to the stitches in her lip by chewing on them - uh-oh. I will hopefully update again soon. Blessings!