Wednesday, April 25, 2012

Cochlear "Hook-up" Day - Round 2

Today came up so fast and there was not near the anticipation as there was for the first round of all this.  The day was very busy and stressful, I think more so for me than Dallas.  We started the morning out with our 3rd school tour (looking at all the options for a potential program for next year).  After returning home around 10:30, I fed Dallas a little "lunch" and put him down for a nap (3 hours earlier than normal!).  This actually worked and he fell asleep for an hour.  Good boy.  We left for the U of M around 12:30.  First we had an appointment with the surgeon to make sure the incision site was healing OK, and it was.  Then we were off to the "hook-up."  It was difficult and very distracting just to keep Dallas content.  I had toys, food, iPad, his walker, you name it.....he was just hard to please.

In the end, we did not get the same neuro-responses that we did the first go around.  This is just a test that looks for responses from the brain.  Then we moved onto checking for a response from him, i.e., a head turn, to sound.  We didn't get a head turn , but he did blink his eyes at a loud knock on the door.  Overall, the appointment was disappointing...but we are nowhere near knowing whether or not there is going to be hearing from that side.  We will have several program changes over the next two weeks and then we will try some sound booth testing.  I feel that getting any sound at all from this cochlear, will be better than none.  The video that we took from todays appointment is uneventful, so I will not post.

In other news, Dallas was scheduled to have his annual ECHO (ultrasound of the heart) a couple of weeks ago.  We got to the appointment and he threw such a fit over them taking his blood pressure that is became clear he was not going to cooperate for the ECHO.  He is now having a sedated ECHO on May 4th at the U of M.  Sounds simple, but they treat it like a surgery.  You need to have a preop physical and go through the whole drill of no eating/drinking, arrive early, yadda yadda....I was not surprised by Dallas's reaction at the appointment.  He has become completely intolerant of any medical appointment.  He does well at physical and speech therapy, and that is about the end of it. 

Physically, Dallas has progressed leaps and bounds.  He is walking with his walker all over the place.  He is learning how to maneuver around objects and how to bend down and pick up toys.  I recently started bringing the walker to appointments and today it was interesting to watch him as we waited in the lobby.  He has the mobility of his walker (we put the walking wings on him, and hold on in case he decides to let go and fall on his face), so he turned the walker around and walked right back out of the lobby/waiting area and waited at the elevator doors!!!  Things are different when he's not strapped in a stroller!

Another change we made just last week was in the bathtub.  Dallas has always sat in a bath chair.  One that allows him to lean back and rest comfortably.....well, I decided that was enough of that!  He can sit well enough and should be able to sit in the bathtub independently.  Of course, it's more stressful for us because he is so unbalanced and wobbly....but he has really done great with it.  The best part is that he is working his core a little more to keep himself stable while reaching for toys, etc.  A little better than his little "lazy chair!"

Overall, he is just changing so much and making great strides all over the place.  Life is getting busier, I didn't know that was possible, but it seems we are more on the go now than we have ever been.





Tuesday, April 3, 2012

Post-Op Day 2

It has been a long night and day for Dallas and company (i.e. Mom and Dad!).  The repositioning of Dallas's central IV line went smoothly.  His face became increasingly weak throughout the day yesterday and by late last night, it was very swollen and hardly moving at all.  We got the surgical team to order a steroid to help with the swelling.  Because Dallas only has one kidney, we have to avoid anti-inflammatorys which is tricky in these situations when he could benefit from them.  At any rate, the steroid seems to be helping and the swelling around his eyes has come down dramatically.  This has helped some with the facial weakness.  The surgeon came by this morning and said because it is NOT total facial paralysis, the weakness should improve over the next several weeks.

He threw up 3 times over night when we tried to get some pedialyte in his stomach.  He has been up since 4am today and has only slept about 30 minutes of the entire day.  He has since kept down 3 bottles of milk, but does not have much of an appetite for anything else.  Overall, not a happy camper, but does seem to be getting some of his spunk back in the last hour.

We are hoping to be discharged late today.

Monday, April 2, 2012

Cochlear #2 - Surgery update

We have our Dallas back from surgery. :)  It has been a long day, but seems as though everything went as good as possible.  We still have not seen him wake up, so we aren't sure how he will be feeling once he comes around. The surgeon mentioned being uncomfortably close to his facial nerve, so we are hopeful that when he wakes up, his face will be functioning normally.

The surgery was the first step towards potentially hearing in his left ear.  The second step is actually activating the device, which will take place on April 25th.  This will tell us if what little of a nerve he has is enough to respond to the electrodes that were placed today.

Right now the plan is to watch and monitor Dallas's pain and progress tonight and into the day tomorrow.  No one is making any promises of him going home tomorrow, but they haven't ruled it out either.  Dallas came in with a cold today which made it difficult for him to breathe coming out of anesthesia. 

Dallas is currently being taken back down to the OR for a brief visit as someone in radiology just noticed on his chest x-ray that his central IV line was placed too far in, which can cause undue risk to his heart.  They will give him some gas and undo the stiches holding the line in place, then pull it out about an inch, and restich.  Yikes.


Last night before bed, so proud of himself that he got himself standing up!  Then his new thing is to squint his eyes when he sees the camera come out!  Anticipating the flash I suspect, smart little man.

Before Surgery

After Surgery