Wednesday, October 9, 2013


Johnny had his sedated ABR today. Overall, it went well and the short version is, his hearing is fine! Praise!

Here is the long version-

We checked into Texas Children's at 10:30 and we would just like to commend them for always being friendly and kind. When I was in the wrong building, a passerby worker offered to walk me over to the correct building and saw me to the elevators. Everyone is friendly and smiles to you and sincerely wants to help you out. Once we were in the correct place, we waited for a few minutes before being taken back for vitals. We then changed Johnny into a cute little hospital gown and played with him while answering a few questions for the nurse.

The hardest part was placing the IV. The nurses (3 of them) had difficulty finding a good vein to work off of and had to pick a less than ideal placement. The nurse did great placing the first IV, but in trying to clean up the blood that came with placing the IV, he squirmed and the IV came out. He didn't cry at all for the first IV and only started squirming after being held for too long while they tried to clean it all up. From there, things got worse and he started crying more. I had to hold him down on the bed while they tried the other hand (unsuccessfully because the vein was tiny and rolled away as soon as they nicked it). He was done with trying then and would not calm down. Poor little guy had to wake up early, was tired, hungry, and didn't want any more of these nurses messing with him. They tried to find a spot on his foot, but couldn't get him to calm down long enough to try. The anesthesiologist who would actually be administering the medication and monitoring him kept coming to check on us and was very patient with him. She finally gave him a nasal form of anesthesia, hoping it would at least calm him down some. After taking that, moving to a darker room, me rocking him, and being covered up with a warm blanket, he finally passed out. This was at noon so we left and waited for the procedure to be over.

About an hour and a half later they came and got us. The audiologist said the tubes were functioning, the fluid was out, and his hearing was fine. He tolerated the anesthesia well and sucked down 4 oz of pedialite after waking up. After ensuring that the pedialite stayed down and him falling in and out of sleep, he was allowed some of his bottle while they monitored his pulse, O2, and blood pressure. We were then allowed to leave (around 3) and he sacked out, barely having the strength to hold his head up or smile. This anesthesia knocked him out more than the anesthesia used for his tube surgery. He is doing well now, but is very tired.

We are thankful he passed the test and apparently there were no issues, so why do it at all? First, Johnny has, at the end of the day, special needs. Sometimes he will need specialists to measure things that can be done at a regular doctor for kids without special needs. For example, from next month on, he will see our regular pediatrician AND a Ds specific pediatrician every year. We will see the pediatrician for regular, every day things and the doctor at the Ds clinic will be there to help us with more specific needs. For Johnny, audiology is one of those fields he needs more follow up on. His ears are really small and they equipment they had at our other doctor's office, simply did not fit him right and wasn't sensitive enough to counter the smaller ears with his active, little boy movement. Second, the doctors have to/want to be cautious in all cases, but especially his and other cases where the kids have special needs. A minor hearing loss in one ear for a kid without special needs may only impact a small amount or certain things, but in Johnny's case, a minor hearing loss could mean even less abilities to do certain things. He needs to be as perfect as possible in the things they can control or help with in order for him to have the best possible chance of reaching his full potential. Kids with Down syndrome overcome A LOT physically. We see physical manifestations of Ds on the outside, but that is just a small drop in the bucket on what is going on inside, in regards to skeletal issues, muscular issues, and structural formation issues. So he can't afford a set back that could be fixed through detection, assistance, and therapy.

I am thankful that we have all of these doctors at our disposal to help him out and while the day was draining (mainly from holding him while he was upset), I am glad that we have that peace of mind. We appreciate all of the support and love and prayers from everyone in our community, they were definitely felt. And huge kudos to The Faulkners who watched the girls all day and made me dinner!

This is what I was reflecting on today-

As soon as Jesus heard the word that was spoken, He said to the ruler of the synagogue, “Do not be afraid; only believe.” 
                -Mark 5:36


Elizabeth said...

I am so proud of how proactive you are with respect for your children's hearing and vision. SO MUCH is correctable at an early age, but sadly it isn't caught/diagnosed early enough. You have always been an overachiever, but never in a more important assignment:) I am so incredible happy that Johnny hearing is great & that his parents will know that did everything possible to ensure he is getting the best care possible. LOVE YOU!!!

The Howards said...

Thank you! I have to give him (and the girls) every opportunity I can. Sometimes that means letting them try new things out, sometimes that means very stressful testing that takes a lot of time and energy. He is so good and so worth it. I feel so lucky that God has put some amazing doctors in our lives because that makes the road so much easier. And all of it is easier with the backing of family and friends like you guys that support us, love us, and pray with us for all sorts of things! HIS story is better than any story I could ever tell or imagine!