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Dallas continues to keep us on our toes as we have been at Children’s for 3 days.  I brought him in on Monday morning around 1am because his heart was racing and he was breathing fast.  When we arrived in the ER, he had a temp of 103.3 and his heart rate was consistently over 200.  This happens when babies get fevers I guess!  He was diagnosed with pneumonia within an hour of arriving at the hospital.  It was visible on his chest x-ray and lab tests showed his body was compromised by a virus/ bacterial infection or both.  Dallas did a heck of a job fighting this off, and it helped that he had great care.  They put him on both oxygen and HiFlo and this helped slow his breathing down.  He earned a reputation of being a little troublemaker after he managed to screw up two different IV’s that were placed in his head.  They gave up after the 2^nd one, and decided he could get meds through his g-tube.  He loves to pull on anything that doesn’t normally belong to him or on him. J  We just got home a few hours ago and Dallas is incredibly happy!  He does not stop talking and smiling.  Other than some antibiotics for the next week, it’s back to normal for Dallas.

In other news, sounds like I am hosting a broadcast television show, we had the "Cochlear Implant panel" last Thursday at the University. This day did not bring much new information, nor was there specific good/bad news. We discussed the device itself, the complex nature of the surgery, and the extensive therapy required afterward. The plan is to have a repeat CT scan in March and possibly schedule the surgery for one ear sometime in late spring, early summer. Dallas's surgeon expressed great concern regarding the potential success of the implant, but did not discourage us from thinking this could be his best shot at hearing.

Dallas has not had a feeding through his G-tube since December 6th. After 10 days of only oral feeds, he had gained 10oz! We are not sure where he is at now, but he will be weighed again in 2 weeks to make sure he continues to gain weight appropriately without any G-tube feeds. He certainly is getting that chubby cheeked, chunky leg, 6-month old baby look! We love it.

Here's a picutre of Dallas right after he pulled out his 2nd IV.  Looks pretty guilty!

The time just flies by, Thanksgiving is over and Christmas is right around the corner.  Dallas has remained healthy through “Round 1” of the holidays, although his sister managed to catch quite a cold.  She has been pretty good at keeping it to herself so far!

Dallas had his 3-week post-op appointment this past Tuesday and his nasal passages have remained open.  This same surgeon that has done all of his airway surgeries, is the same person that has been discussing cochlear implants with us as well.  Up until this appointment, he has expressed guarded optimism (but optimism nonetheless) relative to the surgery.  He has always felt that he would try one ear and see how it went.  Now he is feeling like Dallas may not have the anatomy for this surgery.  He previously said no further CT scans would be needed, but is now mandating another CT before the surgery.  Additionally, this was always planned for 9 months of age, approximately March, and is now being pushed out until Dallas turns 1.  In the end, we certainly don’t want the surgery to take place if there is not a good chance of it being successful, but it was a little disheartening listening to this new found pessimism.  In any event, we are having a group meeting in 2 weeks to discuss the implants further.  The implants have to be approved by a state medical board of some sort and the approval takes 3 months.  A repeat CT scan is being planned for late February.

Last Thursday night we stayed at Children’s for a follow-up sleep study. This was to confirm that Dallas’s oxygen saturations were adequate without air support at night.  GOOD NEWS!  He PASSED!  Of the 9 hours he slept, he only had 14 minutes where his saturations were below the acceptable range.  So, he is officially off air at night for now.  We continue to monitor his levels every night, so that if there is a change we can address it.

Dallas is eating well!  I would say he eats 80% of his food orally, and the other 20% via G-tube.  He has another swallow study next week to see if he can now tolerate thinner liquids.  As of now, he still drinks his bottles at a “honey-thick” consistency.  He weighed 15 lbs this past Friday.

We are still keeping very busy.  We have 2 appointments next week and 3 the following week.   Also next week, I am getting the opportunity to meet two other mom’s that have sons with CHARGE syndrome.  It makes me a little nervous, but I know it will be good to meet other parents who have been through this before.

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.

Headline News:

Dallas does NOT have Dandy Walker. 

This was by far the most exciting news this week.  I was tired of the label on his charts, it had followed him since the diagnosis made while he was still in utero, and I asked that the MRI scans be re-reviewed.  This resulted in the news today! 

Let's see, other updates...he is 12lbs, 9oz and 23 1/4 inches long.  He is in the 1st percentile for height (hey, we're on the charts!), 4th percentile for weight and 20th percentile for head size.  They are very happy with his growth and said to keep doing what were doing. 

Because of his respiratory issues, he will have to get the RSV shot...this consists of a shot every week until March!  Yikes.  Can't we leave the poor kid alone!  I suppose it's in his best interest, but you'd think they could come up with a better treatment plan....like one that involves just one shot for the season.

Anyway, it's been a bit of a circus in the household this week since Dad left on Wednesday for a hunting getaway (mine is coming up, my getaway that is..not hunting!).  A week doesn't go by where I don't have to ask someone for help in some way.  This week was no different.  As most of you know, I am not good at asking for help - but I have definitely had to let it go because I couldn't do it without the lending hands of friends and family.  I guess it's been good for Dakota to get breaks away from home, she is a very busy 2 year old and misses all of her friends and busy schedule she had at daycare.  She helps take care of Dallas and does really well at understanding when he has to come first.  She'll run a bottle over, "help" give medications, and always announces when he's crying.

Enough for now, Mr. Dallas Bauer is changing every day and continues to amaze us.  We are looking forward to a working set of hearing aids on Monday.

Last week was very busy with appointments.  On Wednesday, we saw the ENT surgeon and he checked Dallas's nasal openings.  There was still some inflammation from the surgery, so there was difficulty passing the catheters.  The doc shared his optimism relative to Dallas getting by this long without a trachestomy.  He feels like he is going to be successful with these surgeries.  We discussed a couple of different medications to try after the next surgery.  He was very open to my suggestions and paired them with some of his own to come up with a final game plan.  I have great confidence in his ability and willingness to do what is best for Dallas.  He reminded me that he is treating him as if he were his own son, and that meant a lot to me.

They placed a PH probe in Dallas's nose and down his throat for 24 hours to measure the actual amount of reflux he was having and the test showed that the medication is controlling the reflux pretty well.  Ahh, some good news!

Thursday and Friday we were working on getting the new hearing aids working correctly and we still have not gotten it figured out.  They still whistle when they're in his ears, so that's my first call of the day today.....

Dallas had a busy weekend, he spent time with his Grandma Bauer and Auntie Jamie so that Scott and I could get out both by ourselves and with Dakota.  We are sure lucky to have the wonderful family we have, there is a lot of help and love and we appreciate it very very much.

Dallas will have surgery again on Monday November 8th.  They will open his nose, perform a CT angiogram of his heart to check the artery that was initially repaired, and repeat an in-depth hearing exam.

Dallas has had a big week.  He is changing every day and starting to act more like a lively little baby.  I believe he feels much better with his nose opened up, his reflux under control, good weight gain, and a bigger G-tube.  He is doing a lot of smiling, kicking, rolling back and forth, and talking.  I was initially very encouraged by all the sounds he makes (thinking maybe he could hear himself), but found out that babies will make lots of sound even though they can't hear themselves.....

We had an appointment at the U of M this morning for his hearing.  He was fitted for new ear molds as he has long outgrown his first set.  He will also be getting bigger aids with more amplification to get him the most sound possible.  The molds will take a week to finish and then he will be back to wearing his aids.  Although the aids alone don't provide enough sound frequencies for Dallas to develop normal speech and language, it's important for him to wear them and be exposed to as much sound as possible.  Additionally, he needs to wear hearing aids for 6 months in order to qualify for cochlear implants.  Serious planning for these implants will begin the first week of December.

I thank my lucky stars every day for Dallas's pediatrician.  She is wonderful and did a great job this week of connecting with ENT and Respiratory to discuss a plan for Dallas that we all can feel good about.  While ENT does not feel Dallas is out of the woods for a tracheostomy, he does feel like there's still a chance for Dallas to get by without one as well.  After some research brought to my attention regarding these surgeries, I was encouraged by what I had learned, but was also questioning whether all of these nose dilation's were really the best for Dallas.  ENT explained that after 6 months, there's a good chance the tissues might begin to stay put versus closing in each time.  We have an appointment next week to see how his nose is doing since the surgery.

Dallas still destats at night, but it does seem to be improving.  After Dallas's pediatrician talked to ENT, he explained that it takes a good week for the inflammation to go down and for you to notice an improvement in the breathing.  If he continues to have desaturations, they will try to increase his Hi Flow and see if that helps.

The biopsy of the esophagus cell tissue showed signs of reflux.  This is no surprise, but Dallas's dose of reflux medication was increased in response.

So, the plan is to continue to watch and see how Dallas responds to surgery and not make any quick decisions regarding a tracheostomy.  It feels good to understand the "plan" and to trust the doctors handling his care.  I keep learning to ask my questions, do my research, get second opinions, and press for answers, until I (we) feel good about everything.

Dallas and I had a full day at Children's today.  We started with an ECHO, an ultrasound of the heart.  This showed that the artery that was initially repaired may be narrowing.  They are not able to tell from the 80 ultrasound images how much this artery has narrowing.  In order to see this in greater detail, a CT angiogram will need to be performed.  However, since this procedure involves sedation, ideally they would like to time this with another surgery provided there is one in the next 60 days.  For now, we were told not to worry.  Yeah right.

We met with the pulmonologist (lung doctor) next.  Unfortunately, Dallas continues to destat at night even with an open nose and HiFlo. He has a couple of more nights to get his numbers up before we'll need to decide if the tracheostomy is necessary to get this little guy the air he needs to grow.  This doc prescribed a nebulizer treatment once daily to try and help with the secretions as well.  This medication also contains a steroid which will help the inflammation in his nose.  A few of Dallas's primary caregivers are discussing the "plan" in the next couple of days.

Still do not have biopsy results from the surgery....should hear something tomorrow.

Dallas was such a good boy today.  So easy going, even smiled a time or two. 

I have decided to start this blog for Dallas to keep family and friends informed about how he is doing.So many have asked for updates on his progress and this seemed a more appropriate format than the CaringBridge site.This way, you can check in on him as much or as little as you'd like!  Since we have been home from the hospital, Dallas has gone through many ups and downs, but his respiratory complications are at the forefront of his battles.  On the upside, he is gaining weight like crazy since his last hospital stay at Children's.  He now weighs 11lbs 2oz!!

Dallas had his 3rd choanal atresia surgery today (opening the nasal passages) at the U of M.  Initially, the surgeon thought there would be minimal blockage in the nose and more airway obstruction.  Upon surgery, he found it was the opposite.  He cleared scar tissue and other blockage in the back of the nasal passages and is already planning another surgery in 4 to 6 weeks.  He plans to be more aggressive next time. 

A biopsy was done of his esophagus to check for reflux management and muscle function.  Results should be in by Friday. 

Dallas also had tubes put in his ears. 

The surgery was 2 hours and he was in recovery for 3 hours.  He really struggled after being extubated, they almost re-intubated him and then he started to come around.  Good boy!  While in recovery, they changed his G-Tube which has been bothering him the past couple of weeks, so it was a relief to get him a bigger size.

He is sleeping comfortably now and finally getting some pedialyte.  It's been 13 hours since he last ate!!