Preparing for Surgery

After our tough decision discussed last post we have had some further developments. Following my meeting with our surgeon to sign off on Jaime's bilateral implants, another clinical meeting was held to confirm final details for Jaime's surgery. During this meeting a concern was raised as to the accuracy of Jaime's responses to her past hearing tests, due to this it was decided that we would return to the implant clinic for yet another test.

On hearing this news we were disappointed, we had been given a choice as Jaime had shown consistent responses at 80-85db (on her right), we have travelled to and fro to ensure this result did not fluctuate, but now Jaime was expected to suddenly improve on these results?... We couldn't understand how or why she would suddenly improve. 

I am still unsure why, however a mere 2 weeks after our latest hearing results Jaime did indeed improve... Jaime now consistently responded to sounds played at 70-75db, disqualifying her from bilateral implants. 

After having set our minds on bilateral implant just the week before, it took me a while to accept that the decision to withhold the second implant was indeed in the best interest for Jaime. Now with confirmed hearing at 70-75db Jaime should be able to access a good range of sound through the use of her hearing aid, she will be able to retain her natural hearing and delight in the richness of true sound (that is not able to be achieved with an implant), and the most comforting thought, that when she is not wearing her aids she may still be able to hear a loud alarm or just make out a shout.

We now have our surgery date set, Thursday this week we will make the drive into town for the biggest moment in Jaime's life so far! Quiet World Daddy is already nervous in anticipation, he is great at reminding me of everything that could go wrong! I on the other hand have not yet reached the nervous stage, I am still excited. Tomorrow I think the surgery will begin to seem more real...

Tomorrow we meet with the surgeon to get medical clearance for Jaime to ensure she is fit to undergo surgery... This has posed us a tough few weeks of keeping Jaime quarantined from coughs and colds- a challenge in the midst of winter!!

This morning Jaime began a mild cough that has me on edge, I hope that its a mild 24hr bug, I don't know how I would handle the prospect of postponing the surgery... 

Fingers crossed my next post will follow a successful day Thursday and not tomorrow with a postponement of Jaime's surgery.

Stay tuned...

One vs Two

Over the past week we have progressed through the final stages of our Cochlear Implant selection... 

Jaime underwent her final hearing test to confirm her level of hearing loss- it has been confirmed that Jaime's hearing loss is not fluctuating, she remains profoundly deaf on her left side (>95db) and has a severe level of hearing loss on her right (>85db). 

At the completion of testing I sat down with the audiologist to discuss what these results meant for Jaime... with her left ear practically incapable of receiving any usable sound an implant is automatically a yes, her right ear however remains borderline. Later that day the specialists at the implant clinic would have a meeting to determine if we would be preparing for single or bilateral implants. I was prepared for either answer...

We continued our week as normal, completing our first full term of swimming lessons, attending playgroup and taking the usual joy in watching Jaime's ever growing list of achievements... crawling, standing and scooting.

Then I received a phone call I had not expected... we were due to meet with our surgeon in a few days time and I had expected that he would reveal to me the clinical decision on Jaime's implants... it was now that I felt a slight panic... the decision had been made, Jaime was recommended for One implant, however, if we felt strongly about bilateral implantation this option was still open to us. 

After hearing this news I suddenly felt a great pressure, although it seems simple enough to follow the teams decision to proceed with one implant, we had been given the rare opportunity to choose two. There are many families out there that have had to fight for a second implant for their child, many more that have been unsuccessful despite feeling that this would be the best outcome for their child.

That night my husband and I had a long discussion about what we felt would be best for Jaime, it is not easy making a decision that will impact on the rest of your child's life. If we chose the second implant, there was no turning back, any remaining natural hearing would be destroyed and she would solely rely on the implant. If we chose not to implant and she did not progress as well as hoped with her natural hearing then we had lost a window of opportunity, did we wait for the possibility of medical advances or new technology, or proceed with the tried and tested technology available to us.

With our experience in deafness restricted to our own daughter I began making phone calls, in our minds we had made our decision, however I wanted to hear some affirmation that we were making the right choice... although unable to give any formal advice, I felt comforted in our decision after speaking with the staff at Taralye. 

Ultimately my husband and I know our daughter best, we are with her every day, day in and day out, we see her progress and when there is a lack of it, and in the last two months we have seen Jaime's verbal progress cease, we felt that the benefits Jaime would get from Cochlear implant outweighed the benefits of preserving her remaining hearing and waiting for technological or medical advances.

A few days later and the surgical consent forms are signed- Jaime will undergo surgery to receive bilateral Cochlear implants. 

Finally our journey towards giving Jaime the gift of hearing feels real... before August arrives Jaime will have completed her first big step to a much louder world!