D-man is out of surgery and Rimell said "Good call," on getting him in here and having the tube put in.  There was a lot of fluid and he said that had to be an uncomfortable pressure for the little dude.  He said we should see big improvement by the weekend.  Yeah!  We miss our Dallas and look forward to having him back to his happy self.  We are so thankful the surgeon came in today on his day off (and he was in his t-shirt and shorts) to help us, and especially Dallas.

Additionally, he had immune system labs drawn at the time of last Friday's surgery.  While we don't have official word from his primary pediatrician, the attending physican on staff here said that even though one of the four numbers came back below the normal range, since all of the others are normal, this should not have a significant impact on his immune system.  We had these labs done because Dallas is almost always sick and seems to pick up any and everything.  Guess that's just the way he is!

Dallas hit a speed bump in the recovery process and we are back up at the U getting things resolved.  He has gone downhill since Monday.  He has been more fussy than usual, not eating well, but the kicker was when the right side of his face stopped moving.  Once that started, then the swelling near the incision site looked noticeably more swollen, so we called in and brought him into the ER around 9pm last night.  It took 5 hours to get an IV started and a CT scan.  The IV start is always more than a challenge, but this one took the cake.  After the first attempt, Scott was nauseous and laying down and the ER doctor was crying with me.  That was a first.  It is so awful to watch.  The second attempt was similar, new person, new ultrasound machine, numbing medicine on board, but this time they got it.  We were so relieved as this IV was a must to do a CT scan with contrast and they were so concerned about meningitis initially, that they wanted to get the antibiotics pumping immediately.

Thankfully, they are saying the labs and looks of the fluid on CT scan appear negative for infection, but could be causing pressure on the facial nerve resulting in the paralysis. Today, the surgeon Dr. Rimell is coming in on his day off to replace the PE tube(ear tube) that he removed during the cochlear implant surgery, to help drain the fluid. 

Hopefully, if all goes well, we can get the tube in and go home with oral meds.  They are optimistic that his face will  start moving again over the new few days.

We are all back home and Dallas is recovering very well so far.  He is slowly working his way back into his eating regimen and has been getting plenty of much needed rest.  His sister rejoined us this morning and you can tell her energy takes his mind off of anything he went through the last couple of days!

Late on Friday night, we had the chance to speak with Dr. Rimell's understudy who was sitting in on the surgery.  We asked her if she had seen a lot of implants done and she replied "Yes, but never have I seen anatomy like your sons."  She said it was very unusual and that Dr. Rimell was remarkable not only in being able to place the electrodes, but also knowing where the facial nerve would be and how to avoid it.  This story is relevant mostly because it made us feel more confident in our decision to stick with the U of M, versus switching his care to Mayo.  I agonized over this decision right up to this very moment before the conversation with this gal took place. 

Additionally, the bronchoscopy that was performed was completely normal from an anatomy perspective.  We were looking for some anomaly or slow reaction in the voice box as suggested by Dallas speech pathologist and feeding specialist.  It was good news to have this confirmed and also gives us the green light to go ahead with VitalStim Therapy if we choose to do so. This therapy uses electrical stimulation to help with dysphagia, i.e. difficulty swallowing.  It is very involved from a time perspective, my understanding is that it is 3 times per week for 3 months. It is also not guaranteed to work. We do not have time to incorporate this immediately into our regimen, but we may look more into this once we have the cochlear implant activated and are through the first several programming appointments and have a good speech therapy plan established.  We are currently set up to see speech at the U of M every Monday, and then programming changes take place separately.  At first there are a lot of programming changes and then it tapers off quickly once we feel like the program settings are optimal for Dallas.  With weekly  physical therapy and Early Intervention on top of that, the weeks are filling up.  The school district also has a speech pathologist that can join Dallas's team, and we are going to try and have her work with his U of M therapist and perhaps we can work out a plan together to have the school do therapy in our home every other week and alleviate some of the trips to the U of M.

Dakota is starting preschool this year!  She will go twice a week and starts the day after Labor Day.  I am very excited for her to be able to get out of the house and do something that is just for her.  I think she will love it and enjoy interacting with lots of kids her age on a regular basis.

Saturday Morning Cartoons! On a 52 inch screen TV.  The children's hospital at the U of M, is brand new and the rooms are crazy nice.  Too bad we didn't find the staff to be crazy nice, as that is far more important.  It was funny though, one of the nurses asked us if they could get us anything and Scott replied "Yes, how about a bigger TV!"

Cochlear Implant

After a long 5 hours, Dallas came out of surgery and is now recovering.  He is being admitted to the hospital for observation due to a couple of complications from the surgery.  He had some brain fluid leakage which has been stopped, but needs to be watched.  He also has some more significant airway swelling which he has been treated for, but once the medication wears off, they need to be sure the swelling does not return.

And now for the good news, the surgeon was able to implant 24 of the 28 electrodes.  This is encouraging and very good news.  Dr. Rimell said he thought about giving up a few times as this was one of the most difficult cases he has had.  We gave him a heartfelt “Thank You,” and off he went.  He had also looked at his airway for potential reasons as to why his swallow has not improved, and other than simply blaming CHARGE syndrome; he didn’t see anything else “fixable.” 

Overall, I’d say we are feeling very optimistic about the surgery results and just hope Dallas has a speedy and relatively painless recovery.

The implant will be activated on September 12^th, and this is the day he will truly hear our voices for the first time.  We will anticipate that, once this recovery is behind us.

Thanks for all the prayers and well wishes today.

Summer continues to whiz by before our eyes.  We took a last minute trip to the cabin last week and the kids and I had a great time with "Nana" Bauer.  Dallas and Dakota both spent time in the lake and got outside plenty to enjoy the heat!  Dallas has struggled to get healthy since the mid-July incident.  He has 4 teeth coming in and that has been hard on him.  I have come to the conclusion that his immune system is weak!  Seems like whenever he turns a corner, something else knocks him down. 

The cochlear implant surgery has been rescheduled for Friday, August 19th.  His operation is set to begin at 7:50am and last approximately 3 hours.  Fingers crossed we can keep him healthy and get this surgery behind us.

He continues to do well in physical therapy.  It's very slow progress, but it's progress.  He acts and moves similar to that of a 6-month old.  We don't focus much on that, it's merely a reference point to get an idea of where he's at and what others should expect when they're around him.  He is making strides in muscle strength and cognitive development.  You can see the wheels spinning up there much of the time!  He claps his hands and picks up a puff and puts it in his mouth.  He is very slowly and seldomly beginning to "chew" some introductory solids, such as puffs, cheetos, and yogurt bites.  We are also working on getting him to drink from a sippy cup. He plays with it and brings it to his mouth, but hasn't put two and two together yet.  I am very encouraged by the fact that his eating skills correspond with his physical skills.  Most baby foods will indicate an age, but also a skill that your baby should be doing before trying a particular food.  His skills match up with the foods he tolerates.  Very interesting!



In girl jammies!  His were all dirty, so Dakota reluctantly loaned him a pair of hers while at the cabin!