March 13, 2014

Maybe eating isn't as bad as I thought?

This month marks 1 year since Ethan became dependent on a feeding tube. Ethan has eaten very little by mouth in months. Today he ate 4 oz of orange banana medley baby food for his afternoon snack. Although we know Ethan will most likely be dependent on his feeding tube for the rest of his life,  it was great to see him interested and tolerating more than a bite or two of food by mouth.

March 11, 2014

March 4, 2014 - Cochler Implant Surgery

We've known for a long time that because Ethan has PBD-ZSD  his hearing loss would probably be progressive and that at some point hearing aids alone would not provide him with adequate access to sound. Ethan received his first set of hearing aids when he was just 4 months old. Over the last 3 years his hearing loss has been monitored and his hearing aids were turned up, then last year he got new stronger powered hearing aids and those were then turned up several times, but Ethan just didn't seem to be responding well to them.






In November Ethan had another sedated ABR (hearing test) along with an MRI and a bunch of blood work. The ABR's results showed us that Ethan's hearing loss had gotten worse and it was now time to move forward towards a cochlear implant. So, following the ABR we began having all of Ethan's records sent to implant team at Carle Clinic for review so that the surgeon, audiologists, and speech language pathologists, etc. could determine if they believed that Ethan would be a good candidate for a CI.






Thankfully the team agreed that Ethan would benefit from a CI and in January we had a few appointments with the audiologists and speech language pathologists, and we began the long wait to get the green light of approval from our insurance company. It took several weeks, but we got the okay and then waited for a call from the hospital about when the surgery would be scheduled. When we got the call we were told that Tuesday, March 4, 2014 was going to be the day! Since this was still over a month away we didn't start to panic, at least not at first.






We were so excited about the possibility of providing a way for Ethan to have more access to sound, but it is still SURGERY and every surgery has risks. We had to make sure we had all the necessary instructions from the endocrinologist in regards to IV steroids that had to be given during the procedure, we spoke with the geneticist and had labs ordered so that they could draw the blood while Ethan was "sleeping," and spent the time reassuring ourselves that this was the right then to go for our son, but hating the fact that he was going to have to have surgery.






The day was finally here! On Tuesday morning we got up early and the three of us headed to Carle, arriving a little before 7am. We waited in the surgery waiting room for a bit before getting called back to do all the pre-op checklists/prep. Shortly after the nurse began going over things, Doey, one of the Child Life Specialists who we had met on a previous visit at Carle was going to be able to be with Ethan -- she could go with him to surgery and be with him in recovery before we could, came to our room. Dr. N. the surgeon also came by and spoke with us and we signed all the necessary consents and then had to say "bye" to our little man.






I DIDN'T CRY!!! That is a pretty big deal -- my little boy was headed to surgery, but I was strong. We will NEVER get used to hospital stays, surgeries, etc. and I will always be anxious about them, but we are feeling more comfortable and have more of an understanding about the process, etc. since we've had multiple hospital visits over the years.






Jeff and I headed to the waiting room, where we ended up making a new friend, another mom whose little boy was having surgery. Her son and Ethan had actually became friends back in pre-op when neither one wanted to stay in their rooms. Although she is not the mom of a child with special needs, several of her close friends are and we had an enjoyable visit.






My parents and Pastor Tracey arrived not too long afterwards and so we all visited while we waited. A nurse came by and told us that Dr. N. had begun the surgery at 8:21am. We also spoke briefly with Doey who assured us that Ethan did fine getting to sleep and that she would be back to be with him when he woke up, before they called us back to recovery.






A few minutes before 10 am Dr. N. came and spoke with us. He said everything went great and that we should be headed home as soon as Ethan was feeling better. We had been prepared to stay -- although this is typically an out patient surgery, nothing about Ethan is very "typical" --- but Dr. N. didn't see any reason unless Ethan did not do well waking up from the anesthesia that we wouldn't be going home that day!






A nurse actually came to get us to take us back to recovery while we were still talking with Dr. N. so we once again thanked him and confirmed that we would be back in about 3 weeks to have the CI "turned on."






When we got back to recovery Doey was holding Ethan and he was very sleepy and very upset. I tried to comfort him, but of course he wanted Jeff. Ethan and his daddy cuddled a bit and after just a little bit the nurse took out the IV and that really seemed to make Ethan happier. It wasn't long before my parents, Jeff's mom (who had arrived just a few minutes before we were called back), and Pastor Tracey joined us in recovery. The nurse told us that Ethan was doing great and that we could start packing up to go home! So, Pastor Tracey prayed and headed out and the rest of us visited while we waited for transport to take Ethan and I out while Jeff went and pulled the car around.






We were in the van just a few minutes before 11am and headed home! I just couldn't believe it. Ethan slept the majority of the drive and once we got home he acted very happy to be home with his toys. It was incredible, besides the funny bandage on his head, you would never have thought he had had surgery just a few hours ago. My parents followed us home and spent a few hours visiting and playing with Ethan before heading home themselves. Ethan was soaking up all of the love and attention from his grandparents.




Although Ethan had surgery and the device implanted on March 4th it will not be turned on/activated for about 3 weeks. This gives the surgical site time to heal. We are cautiously optimistic about what Ethan's response will be when it is turned on. We have been told that a CI is a different type of hearing than hearing with is amplified with hearing aids, so things may sound different to Ethan than they did before. It is our prayer that by providing Ethan with greater access to the sounds around him he will be able to increase his ability to understand and communicate.