We are almost 2 weeks post-op and Dallas is doing much better than last week.  It usually takes 2-3 weeks for him to get back to himself relative to sleeping and eating.  He is almost back up to what he was eating orally, and is sleeping comfortably again.  He is such a happy, delightful baby.  You can reliably make him smile or laugh by doing “SOOO BIG,” or by tapping his hands or feet together.  He loves taking baths and getting his diaper changed!  That’s my boy!

Last week, he had his first eye appointment.  I braced myself expecting the worsed, the doctor would for sure tell me he was near blind I was certain.  Thankfully, the optometrist was “unimpressed” by Dallas’s coloboma’s and stated how small they were.  He indicated very little impact they would have on his vision.  He does have stigmatisms in both eyes, which could cause some blurry vision, but this is treatable with glasses down the road if the stigmatisms don’t change by age 1.  What a relief.  I told the optometrist that this was the best appointment we’ve had in 5 months, and he said he was glad he could give me good news, but he seemed disappointed that Dallas’s wouldn’t be a good “case” for him.  C’mon people, seriously.

We heard back on the heart CAT scan which showed that the narrowing was not significant enough to warrant surgery at this time and we’ll continue to have ECHO’s every 6 months to keep an eye on it.  More good news!

We finally received the genetic confirmation that Dallas does in fact have the CHD7 gene mutation that is found in 75% of CHARGE kids.  This doesn’t change anything or tell us anymore that we know already, but it does mean Dallas would have a 50% chance of having a child with CHARGE because he carries the gene. L  The geneticist explained the mutation simply like this; the gene basically stops doing its job early.  Because this gene is required in so many organ systems, these kids are so widely affected when the gene doesn’t complete its’ job.  Explains why many of Dallas's organs were incomplete or are still  incomplete....ears, kidneys, heart, etc.

Yesterday Dallas got his 3^rd set of ear molds (that attach to his hearing aids).  These are the best fit thus far and they aren’t constantly squealing!  The bad part is that he is getting old enough now where he realizes they are on his ears, so he likes to pull them out!  Hence the cheesy hat in the pic below!  It’s not our goal to make him look like little bo peep, but you do what you gotta do.

We are looking forward to showing him off at the Thanksgiving festivities; we have lots of family that has yet to see Dallas in person!  However, you’re always thinking about the germs so our goal is to keep him and his sister healthy throughout the holidays.

Oh, I can’t believe I almost forgot this….he has still been maintaining his stats at night and not requiring air support.  We will be more excited about this once we can prove it to his pulmonologist.  He has a repeat sleep study on December 2^nd.

Surgery days are always difficult, and they only get more difficult each time.  It gets harder on Dallas and certainly harder on us as well.  The older he gets the more aware he is of everything going on around him.  He is scared and confused and it's hard to see him like that.   The morning started with no food of course, and he tolerated that very well.  His surgery started an hour late and it was 3 hours until we heard word that he was recovering.

The recovery period was almost as long as the surgery and Dallas was very unhappy.  He was given 3 doses of a pain medication called "Fentanyl;" none of which gave him any relief.  They then tried a dose of Tylenol before giving him some Morphine.  Finally, after a solid hour or more of crying...he started to calm down.  Then his breathing was concerning and he was very red.  We pushed for G-tube supplies so that we could get some food in his stomach and after a good effort from the post-op group (feeding is uncommon in this area), we were able to get him fed and then he was really out! 

Results:

CT Angio - No results for 2 days.  This was a cat scan of his coartation repair of his heart.

ABR (Auditory Brainstem Response) Hearing Test - Confirmed previous test results, showing Severe to Profound Hearing Loss..(bummer, you also silently hope that a retest will surprise you in a good way)

Ears - Replaced Tubes

Nose - This is confusing to me, but the way I understood it was that the nasal passages towards the front of his nose(where the previous dilation's have taken place) were open and did not need dilation.  However(and there always seems to be a "however"), they found a narrowing near the back of his throat (or bottom of his nasal passages).  This is not good, but not the worst finding either.  They ballooned the narrowed spot which made the opening 25-30% bigger, but are very restricted here by bone and this area is very close to spinal cord nerves making it difficult to do too much.  The surgeon thought 2-3 more of this type of dilation would be needed and no indication as to how soon the next one would be.  We will follow-up with him in 3 weeks.  We discussed different possibilities and potential outcomes related to this new finding, but for now it's best left as we just wait and see how he does.

We are settled into our room now and Dallas has low blood pressures.  They have paged a DR, but hopefully this is just part of him being so zonked out from his big day.

Given an uneventful night we should be going home in the morning.

I've included a pic from a happier day!

Dallas gained another pound!  He is 13lbs 10oz.  He also has had big improvements in his breathing.  Since the last post on Oct.22nd, he has not required air support at night.  I did my own little trial and found out that he did fine without the air.  We discussed this with his pediatrician this week and a lab draw confirmed what we had hoped!  He will still have the air ready for him if/when he should need it.  After surgery this coming Monday, they want him back on it until all the inflammation goes down.

We continue to work with audiology on his hearing aids.  They are a challenge given their large size and high level of sound on his little ears.

Halloween - Dallas had a great first Halloween!  He slept through all of the trick or treaters, but he was festive earlier in the day.  His big sister Dakota LOVED trick or treating this year.  It was so fun to see her go door to door.  Dallas and Dakota enjoyed the day with their cousins as well.