Update on E

This post could be about a lot of things, but I’m mostly going to concentrate on her medical update.  It’ll probably be really long though, so get comfortable!  Her palate repair surgery was scheduled for Dec. 12.  We saw a geneticist on the Monday before.  She was very nice but didn’t really have any specific syndromes that she thought E could have.  She wants to do a blood test that will give us more answers though as well as an abdominal ultrasound while she’s out for her surgery.  A lot of children with microtia and cleft palate also have kidney anomalies because they all form around the same time gestationally.  She said E falls on the Oculo-Aricular-Vertebral Spectrum.  

The day before was a very full day of a bunch of pre-op appointments.  E and I left bright and early and headed down to the hospital.  Luckily every appointment was at the same hospital so we weren’t driving all around town or anything.  

First stop, ENT.  Our surgeon figured that her one eardrum was filled with fluid so he wanted to get it checked out.  If it indeed was filled with fluid then the ENT could stick a tube in it while she was out for her palate surgery.  Girlfriend was not happy about sitting in her stroller.  Heaven help me - she’d only been in it for maybe 10 minutes by this point and that included the walk from the parking garage and through the hospital.  And we still had a VERY long day ahead of us!

I reluctantly pulled out the backpack of ‘new-to-her’ toys I’d brought.  I’d hoped to put that off until the last possible moment.  I pulled out this camera first and then got mine out to show her what to do with it.  Big hit!

We eventually got called back (after waiting for 30 minutes) and they did a couple of tests.  One was to test if her eardrum was vibrating properly.  It wasn’t, which usually indicates fluid behind the eardrum.  

The doctor came in to look at her after the tests but he couldn’t see past all the earwax in her ear.  He said he would like to go ahead and try to put a tube in the next day.  I agreed and we got all that set up.  E and I got to wait a while longer while the office staff was dealing with our insurance company.  We played with my phone and took some pictures to pass the time. 

There was also lots of playing with my necklace. 

Then it was up to the registration desk of the Children’s Hospital for several appointments.  

She got a sticker at the ENT and kept holding it up for me to see.  

The waiting area was really big with lots of room to run around and play.  I didn’t really want to let her out of her stroller for fear of her picking up some horrid germ and not being able to have the surgery the next day but I knew she was already tired of the stroller and we still had quite a few appointments left so I let her run around a little.  She has absolutely no fear of strangers and doesn’t stay close to me at all so it was a task to keep an eye on her.  She’s so tiny that it’s easy to lose her behind a footstool or another person!  She had fun though.  I made sure to sanitize the heck out of those tiny little hands when we finally got called back!  

We first went to a room and took several photos of her ears.  E did AMAZING in there and didn’t even make a fuss.  Must be because Mom has a camera in her face a lot of the time!  They did have to take one of her palate though, and I thought for sure that was going to set her off but she didn’t even cry!  

From the picture place we went to get some pre-op measurements.  We hung out in this room for quite a while and ended up having some snacks.  

I tried to keep her in the stroller as much as she would let me.  As long as she had a snack or a new toy she was pretty happy.  She likes to make her animal crackers walk around.  It’s good to know that she recognizes their shape as some sort of animal!  

Then it was up to the surgeon’s office.  We had a little bit of extra time so we ran out to the car and got the lunch I packed for us.  Then we ran back inside because it was REALLY cold outside.  We found a seat outside the surgeon’s office and had ourselves a little lunch.  Last time for PB&J for her for a while.  

Then we went into the office for a very long wait.  The funny thing is that we followed another patient around all day who was having surgery the next day as well.  Her name was the same as E’s too so every time they would call it the other parent and I would look at each other and say, which one?  We didn’t realize we were with the same surgeon until we both showed up at his office.  

We waited for over an hour in the waiting room so I figured it was a good time to pull out the iPad.  She has never played on it before but I knew she would be totally interested so I downloaded a couple of games for her the night before.  She LOVED it and it kept her busy for quite a while.  

We saw our surgeon, which took all of 5 minutes.  He wanted to make sure that I didn’t have any questions for him and that I knew exactly what was going to happen the next day.  I didn’t, and I did, so then we were off the to the pediatric dentist.  We had a couple of hours until our appointment but I wanted to get out of this place so I decided to see if they could get to us any earlier.  Lucky for us they could!  The dentist was super thorough and very nice.  If I didn’t already have a great dentist for the kids here in town I’d totally drive all the way down there to see him.  If you live in Dallas and need a dentist for your kids, go see Dr. Braidfoot.  

By this point it was nearing three o’clock and she hadn’t had a nap.  I knew she was tired and hoped she’d take a little nap on the way home.  I don’t think we were even out of the parking garage before she was out.  I took these photos once we’d gotten home and before I woke her up to go inside.  

It was one very long day!  She did SO well with all the new doctors and exams.  She normally freaks out at even walking into the doctor’s office but there was not one freak out this entire day!  She got a little nervous a few times but there was absolutely no screaming.  I was really worried about how she would react to seeing so many new doctors and people.  I think it was definitely a tender mercy that she did so well.  We actually had a very good day together, which, sadly, isn’t something I can say everyday.  

The Child Life specialists at the hospital gave us a bunch of hospital-y stuff like face masks, gloves, and tubes that she would see at the hospital the next day.  We pulled it all out once we got home for her to play with.  She immediately took the face mask and played with it all night.  We even took it with us the next morning and she played all the way to the hospital and while we were waiting.  Who knew it would be so fun? 

The next day we had to get up bright and early to be at the hospital by 6 am.  Poor E got woken up, her diaper changed and stuck in the car way before she normally wakes up.  She’s used to waking up on her own, getting her diaper changed and going down to eat breakfast right away.  I was really worried about her being hungry and not knowing how she would react to it.  We keep her on a pretty tight schedule and I knew this day was going to be very different from what she was used to.  She surprised us again though and did fantastically.  

 

She was happy as can be as we were waiting to be called back.  

Daddy decided to stick her in one of the tiny holes.  He was right behind her though so she wouldn’t fall out.  She loves tight spaces so she thought this was awesome.

I couldn’t believe how happy she was!  I thought for sure she would be miserable being woken up so early and then not getting to eat anything!

This is a good picture of her skin tag/ear remnant before the surgery.  

She makes some pretty crazy looking smily faces.  I think this is more her interpretation/mimicry of our smily faces than her actual true smile.  Pretty funny!

Finally it was our turn and we got settled in a bed to wait some more.  

She wasn’t sure about the hospital bracelet.  

The nurse kept asking if she would like to watch a movie and I kept telling her she wouldn’t watch a movie but I guess the nurse didn’t believe me and brought her a DVD player anyway.  I tried turning on some Little Einsteins for her but she only wanted to push all the buttons on the DVD player.  Not the least bit interested in watching the movie.  Just like Mama tried to tell the nurse.  We ended up turning it off and handing it back to the nurse a few minutes later.  

Child Life brought in a blanket and a little stuffed gorilla.  Unknowingly, we’d put her in two pairs of jammies that have monkeys on them.  (We always put her in some lightweight jammies and her fleece jammies to help keep her warm since she has zero body fat and won’t keep a blanket on at night.)  Then when Child Life brought the monkey blanket and gorilla in to her everyone kept commenting on how she must love monkeys.  Kinda funny.  

She was not happy when the nurse came in and put a pulse ox on her big toe.  We put her footed jammies back on to keep her from taking it off.  She couldn’t figure out why she couldn’t get that thing off of her toe!

Eventually they gave her some “happy juice” and she was indeed happy! 

After the anesthesiologist and other doctors came and saw her she was ready to head back.  After some hugs and kisses, the nurses wheeled her and her beloved mask away down the hall.  

And another nurse took us to the surgical waiting room. Daddy passed the time with some super fun paperwork.  

I drank about 4 cups of hot chocolate and fidgeted the entire time.  I brought my Kindle so I could read but I was too nervous to do anything.  I mostly just sat and worried.  I’m really good at that!

The ENT was scheduled to put her tube in before Dr. Fearon got started with the palate and he said it would only take 10-15 minutes.  We got a phone call saying he would be out to talk to us way sooner than we had anticipated.  He came out with some not so great news.  E needed a more specialized specialist.  He said he could visualize the eardrum and made the tiny incision in it without any problem but when he tried to place the tube he couldn’t get it to move through the eardrum.  He thought maybe the fluid behind her eardrum was really thick so he tried suctioning it out but nothing happened.  He concluded that she didn’t have an airspace behind her eardrum that was filled with fluid after all.  The air space that allows our eardrums to vibrate properly and send signals to our brains is probably solid bone in her case.  That’s the ENT speculation anyway.  Dr. Fearon recommended another specialist to see and we’ve got an appointment with him later this month.  She’ll have to have some imaging of her head (CT or MRI, I’m not sure which) to figure out exactly what the anatomy is like in there.  A hearing aid of some sort (BAHA or cochlear implant) is probably in her future.  After the surgery I was talking with Dr. Fearon and he mentioned that this actually makes perfect sense.  It explained why her language hadn’t really progressed at all.  We know she can hear though.  We just don’t know what exactly she is hearing and how well.  It definitely wasn’t the outcome we were expecting or hoping for but it was good to have an answer and be able to know something about her. At least we have a direction to follow now.  

So we waited.  We got a few phone calls updating us on the procedure with Dr. Fearon and eventually they were done.  Dr. Fearon came out and talked to us and then took us back to recovery to see her.  She was still pretty out of it but she was waking up.  I held her for a while and then she really started waking up.  

She was in pain and confused and not happy.  She started crying really hard at one point and when she opened her mouth I could see the incisions in her palate.  They started oozing a lot of blood and that worried me.  I called the nurse over and she looked worried about how much she was bleeding too.  She immediately called to another nurse to call Dr. Fearon.  By this point, E was wailing and flailing and I was freaking out a little bit too.  That’s when I started to feel the room closing in on me.  My heart started beating strangely and I felt really nauseated and lightheaded.  The nurse was also trying to get some medication ready to give to E because she was screaming.  There was a lot going on at that moment.  I looked at Josh, who was sitting directly across from E and I, and said, “Take her, I’m going to pass out.”  He grabbed her and was trying to help me too.  I was fading fast.  The nurse looked over at me and could see what was happening and started yelling at the other nurses to come help.  I was mortified and felt SO awful that the nurses were all gathered around me when she was the one who had just come out of surgery, was bleeding everywhere and obviously in a lot of pain.  E’s nurse was able to get some medicine into her IV quickly and that helped calm her down.  The other nurses were propping my feet up, putting a fan on me, sticking alcohol swabs under my nose (which only made me feel sicker - yuck!), taking my sweater off and sticking wet washcloths all over me.  I have NEVER fainted, although I came close the day the Dr. told me I had had a miscarriage, and I don’t have any problem with blood or needles, so I don’t know what the problem was here.  Stress, not eating, overheating, and feeling completely helpless for this little child probably had something to do with it.  I still feel completely mortified by the whole situation!  Ug.  Josh is usually more on the squeamish side than I am so I’m glad he was calm and collected right then!

She fell asleep again from the medicine.  Dr. Fearon came back to look at the incisions while I was totally out of it and said everything was fine.  He even made a comment about how he had almost passed out during his early days of medical training.  :)

The bleeding subsided and she slept for a while longer.  I was feeling much better by then too and was able to eat some lunch, which helped immensely.  When she woke up she took a few sips from her sippy cup and we decided to try a popsicle.  

She snarfed that thing down without a problem and went on to another. We hung out in the recovery area for close to two hours because there wasn’t a bed available on the pediatric floor.  She did really well until about the last 15 minutes.  She was ready to leave and started having a meltdown.  She had had quite a day though so I don’t blame her one bit.  We finally got a room and started heading up to the peds floor.  She didn’t want to stay on the gurney and didn’t want us to carry her or want me to sit with her on the gurney until they started rolling the gurney away.  Then she looked back and us and started reaching for us.  This is the first time she has ever indicated that she wanted one of us or didn’t want us to leave her.  It feels awful to be grateful for that but I was.  She screamed the whole way up to the room and once we got in there I was able to pick her up and hold her.  She calmed down a little bit but the nurses there wanted to start checking her blood pressure and temperature, etc.  NOT what girlfriend needed right then!  We knew it needed to be done though so we soldiered through and I held her the entire time.  She eventually settled down and held onto me like she was never going to see me again.  She fell asleep and I tried to lay her down in the bed and that set her off again.  Oops!  I laid down next to her and she calmed down again - just in time for the ultrasound lady to come in and do the ultrasound that was supposed to be done while she was out for the surgery!  Argh, people!!!  Give this poor kid a break!  She was not happy about the ultrasound at first but once she saw that it didn’t hurt she did pretty well.  

It was about 3 o’clock by this point and Josh and I were both exhausted.  I still had to drive home and relieve my parents and I really didn’t want to be stuck in rush hour traffic too.  E and I snuggled for a little while and then I knew I needed to leave.  We pulled out the iPad for her and she was even kind of happy for a little bit!

So I said my goodbyes and headed out.  Josh ordered some dinner for the two of them later on and said she scarfed down some mac and cheese without any problem at all.  She slept fairly well although the nurses coming in to check her vitals all the time weren’t very fun times.  I got home around dinner time and relieved my parents.  Thank heavens for them!  The kids had lots of fun with them too.  S spilled the beans and told me how they had brought donuts and root beer and all sorts of things that mom rarely lets them have!  That’s what grandparents are for though, right?  We had dinner and I kept marveling at how much easier it was with just five kids by myself.  That one kid really makes a difference, I guess!  ;)  I talked to Josh a few more times and made sure everything was good on his end.  We planned on me going down to the hospital the next morning and hanging out until E was discharged but by the time I got everyone up and fed and dressed all the kids really wanted to go to the hospital so we all decided to go.  Josh ended up calling me right before we left saying that Dr. Fearon had just come by and said E was good to go.  I never even unloaded all the kids from the van once we got to the hospital.  I just pulled up at the entrance and Josh and E walked out.  Perfect timing!  I was good to see that she was happy and knew that the van meant she was going home.  

After we got home she went straight to the bathtub.  Then it was lunchtime.  Dr. Fearon didn’t really give her many restrictions on her diet.  He said no lollipops, running with chopsticks in her mouth, chocolate, or peanut butter.  Three of those are not an issue but for a kid who eats PB&J for every lunch I had to get creative.  She ate lots and lots of baby food pouches, which she loves, thankfully.  She also had some cooked pasta and some cheese.  She ate everything without a complaint.  I made sure to keep her dosed on Tylenol and Advil though.  

By the next day she was wanting to eat her normal snack of Goldfish.  So crazy but she loved it (although she wasn’t happy about me taking pictures of her!)

All in all, she did way better than we expected with this surgery.  I was really worried that she would pick at the incision from where the ear remnant was removed but she never even scratched at it.  I’m sure it was pretty sore for the first week or so but after that even when she still had a lot of the surgical glue on it she never picked at it.  She’s pointed to the spot a few times since then and looked at us questioningly so I think she realizes it is gone.  She used to pull on it mindlessly before, just out of habit.  

We also found out from the abdominal ultrasound that she has hydronephrosis of one of her kidneys.  We don’t know how big of an issue it is or if it’s anything serious at all yet.  The geneticist said it wasn’t bad enough to be an urgent thing but definitely something that needs to be looked at and monitored.  So that’s another appointment for another doctor at another time right now.  

We did see her behavior take several steps back since the surgery.  She was VERY angry the first week after coming home, having quite a few meltdowns every day.  I think she was actually angry at us for putting her through the surgery, but I guess we’ll never know for sure.  She never once put her hands to her mouth or cried like she was in pain.  She never did that in the hospital though either.  She has started hoarding toys again and has become very attached to her cup and a few toys again as well.  It’s still not at the same point it was before her surgery but it gets a little better every day.  

The palate seems to be healing well although the stitches came undone on her uvula and now she has two uvula (uvuli?) again.  The Dr. said it wasn’t anything to worry about though.  It’s mostly an aesthetic thing anyway.  Our next step will be the ear/hearing specialist.  I’m anxious to find out more about her and how we can help her communicate.  We’ve been learning and doing a lot more signing with her and she knows probably 15 signs now that she uses on a regular basis.  She is a very bright and clever girl and picks them up quickly!  She definitely wants to be able to communicate with us and be understood.  We all want that.