At 5:30 am we were checking in at Boys Town. They took us to our room, and Audrena cried while the nurse listened to her lungs and checked her oxygen levels. I wanted to cry right there. It was all pretty overwhelming.
We took Audrena to play in the toy room, where the child life specialist came to talk to us, and the anesthesiologist came to introduce himself.
 |
| Somehow the date was wrong on our camera. I'm going to have to fix that. |
We talked to the anesthesiologist for a bit, and then we went back to our room to wait for Dr. L. He came in, confirmed that Audrena would receive an Advanced Bionics implant, checked her ears, and discussed things with us a little more. Once again, we talked about the risk to the facial nerve. This had always been a worry for Daddy, as he loves his baby girl's smile and double dimple. Dr. L. explained that in all the many hundreds of surgeries, he has never had an issue, and he assured us he would take it very slow. He marked Audrena's ear with an X and then left.
I'm a little foggy here, but at some point, the surgical nurse came in to introduce herself (not sure if it was before or after Dr. L.). She said she would give 2 updates--once when the incision was made, and once when they were done with surgery.
Soon the anesthesiologist and surgical nurse were back to take Audrena from us. He waited patiently as I gave her a long hug and a kiss, then passed her off to Daddy, who gave her hugs and kisses. It was so hard to hand her over, so we continued to pass her back and forth for a bit. After one last loooooong hug and a kiss, I finally handed her into the warm blanket he was holding. He assured me he would take good care of her, and they left.
I sat in the recliner and cried. Randy hugged me, and we cried together. The nurse came in and saw me. She made sure I had Kleenex. At some point, she had asked if we slept much the night before. I said, "No. Not really." She promptly brought in a fold-up bed, pillows, blankets, and then made sure we had something to eat and drink. I did take the blanket and close my eyes, although it would have been impossible to nap with my worries.
We got the first update at 7:55 am. The incision had been made. I cried again.
We expected to receive the next update 3 - 3 1/2 hours later. It came sooner than that. Our nurse came in with the message, "Implant is going in. She's doing great." I said, "The drilling is done?" She said, "Yes, it's all done." I breathed a sigh of relief, and Randy and I both cried and hugged each other tightly.
Dr. L's fantastic office nurse stopped in to see how we were doing. Talk about going above and beyond! As she was leaving, our nurse came in with another update. They were finished and closing her up. The message came at 10:55 am. Dr. L. was right on the money when he predicted a 3 - 3 1/2 hour surgery.
Then came the update that they were all done, and she was doing great.
Dr. L. came in to say that he got a full electrode insertion. However, as he thought, she had a "gusher" of spinal fluid when he drilled into her cochlea. He packed it tightly with tissue, and he said as a result, two of the electrodes tested with very high thresholds. He was unsure if they would be useable. We do know that they can program around that, so it's not a big deal. He explained that when he removed her ear tube, he used a fat graft, and Audrena's ear would be draining for a few days. Then he told Randy that the facial nerve never went off and was never exposed. There would be no damage. He grinned and gave Randy a little punch to the shoulder on the way out of the room. I saw pure relief on Randy's face.
Soon our audiologist came in to complete our processor and accessory order. We ordered two Neptune processors because, in a certain configuration, they are waterproof. Besides, we thought it would give Audrena the freedom of not having something on her ear all the time. In a few years, when we're hopefully eligible for an upgrade, we will reconsider getting her a behind-the-ear processor. We had tons of color choices and accessories to order. Audrena will make quite the fashion statement!
Awhile later, our nurse came in and asked if we were ready for Audrena. Who would hold her first? Did I have to use the restroom first? What did I need to be comfortable? It would be awhile before I would get up again. I think I was a little unprepared when they brought her to me. She looked so little and pathetic with her bandage and IV. I cried a little and just reminded myself that it would all be worth it.
It wasn't long, and I had the first (and only) inkling that she might be in some pain. The morphine was wearing off, but our nurse was quick with the Tylenol. When it was time to change the bandage, I was surprised at how much her ear was draining, but it was clearish red drainage, the normal kind after a surgery. I was also surprised at how clean and discreet the incision was. He had stitched it shut, and he did a neat job of it. Also, they did not shave any of her hair. That's good because her hair is thin, so she needs all the hair she can get!
Audrena slept for a long time that first day. She was, no doubt, exhausted from a late night, an early morning, and the anesthesia. Around 4:00 we finally got her to wake up enough to drink something. She then threw up all over me. I had extra clothes, but they were at the hotel. The nurses were quick to get me scrubs so that I wouldn't have to walk into the hotel covered in vomit. Audrena promptly went back to sleep.
We ordered Audrena a dinner tray, but when Randy sat her up to eat, her chin fell to her chest as she went right back to sleep. At some point, I laid down on the fold-up bed with Audrena, thinking we would both be more comfortable. Then our nephew, Brady, came to see her. Randy's cousins Brandie and Trenton came to see her at about the same time as well. She opened her eyes just a bit, saw Brady, closed her eyes, opened them to look at him, and when he got up to come closer, she gave us the first smile we had seen since before surgery! It brought tears to our eyes. She tried to sit up, so we moved to the recliner. Immediately, she was hungry, so Daddy fed her the meatloaf we had ordered earlier. She devoured it and was mad when it was gone. She drank some apple juice as well.
By that time, we had all (Dr. L., too) decided it would be best for us to stay overnight since she had not eaten or drank much until late. We were the only patients in the hospital by that point, as the rest of the surgeries were same day patients. They moved us to a room with a hospital bed instead of a crib.
Our night nurse changed Audrena's bandage, and we began to settle in for the night. Randy and Brady went back to the hotel, and I stayed with Audrena. Probably 15 minutes later, I moved her head off of my arm and onto the bed, accidentally pulling her bandage off. I rang for the nurse so she could help me put it back on, and I noticed that the gauze was soaked with blood, and there was a clot. She called Dr. L. to see if that was normal. He said not to worry, that it might do that. So she re-dressed it, and we went to sleep.
Surprisingly, Audrena and I slept well (with the normal wake-ups from the nurse checking on her), and the bandage just had the normal drainage again in the morning. Dr. L. came in after Randy arrived, and he released us. It's a good thing because Audrena had been trying to pull her IV out, and it was pretty tough to keep her happy in the play room with an IV pole in tow! She was ready to go home!
As we left the hospital, a lady we had never seen before stopped us to ask how the night had been and how Audrena was doing. We assume she must have been a nurse or someone in the operating room. We really don't know. What we do know is that every single person at Boys Town went out of their way to make us comfortable and to show they really cared about Audrena. The level of care she received was better than outstanding.
By the time we got home Wednesday afternoon, Audrena was nearly back to her normal self. By Thursday afternoon, if she had not had the bandage, you would never know she had surgery. She played and climbed like normal.
Friday, we noticed that her incision area was getting pink. I e-mailed Dr. L.'s nurse to make sure that was normal. Dr. L. didn't waste any time calling me back. He said she had received a long-acting IV antibiotic, and it was probably ok. However, to err on the side of extra caution, he did call in an antibiotic. By Friday, the ear drainage had pretty much stopped, just in time for the bandage to come off.
Today we are just continuing the ear drops and keeping an eye on the incision site. She has started to itch her head, and we have had to make sure she is not itching her stitches. We take that to mean she is healing. Audrena is keeping us on our toes, and all is well. We are waiting anxiously for Wednesday, when we go back for our follow-up appointment and the activation!
If you have made it this far, you're awesome. These have all been details I didn't want to forget, so it got pretty long. Now I'm going to share some thoughts about the process.
We kept our friends and family updated on Facebook and through text messages throughout the surgery. We could not have gotten through this without them. It comforted us to see so many people praying for Audrena and wishing her well. The words of encouragement meant more than anyone will ever know.
Will the next surgery be as mentally draining? Yes. We're still allowing someone to operate on our baby. But at least we know what to expect. And we know how quickly Audrena bounced back. I don't have to fear the pain for her because I know that it really is controlled with Tylenol. I watched her carefully for any signs of pain, and she only showed it that one time. We feel much better-equipped to handle things. We also know that Audrena will get the best level of care in the hospital.
We would make the same decision again. The opportunity to hear far outweighs the recovery time from the surgery.
An excellent surgeon is worth his (or her) weight in gold--and more. We will be eternally grateful to Dr. L. for giving Audrena the gift of hearing. And we will forever praise Boys Town and its staff for providing amazing care.
Another random thought--Audrena's medical alert bracelet arrived just in time. I had asked Dr. L. at her pre-op appointment what it should say, and he said it was important for it to say no MRI and no monopolar cautery. I was able to order one that is engraved on both sides so that it could include that she has cochlear implants, NO MRI & NO MONOPOLAR CAUTERY, Daddy's cell phone number, and the phone number for Boys Town for information. We know that not all cochlear implant recipients wear medical alert bracelets, but we felt like it was important for Audrena to wear one. It's just the right size for her ankle, and she doesn't mess with it when she wears it.
Well, that's all I have for now. On to activation! We will be sure to post video and photos of the big occasion.
Wow, what a brave little girl and so are you two! I've been following this journey since the beginning, and I really just think you guys are amazing! I'm very much looking forward to seeing the video of your precious girl hearing for the first time. :)
ReplyDelete