Kayla's Story Was On the MDA Jerry Lewis Telethon

On Monday, September 4th, Kayla was highlighted on the 2006 Jerry Lewis Labor Day Telethon in the Sacramento region. They aired her story at 8:00 am and 11:15 a.m. and then interviewed us right after the 11:15 am showing. Kayla's nurse David, Kayla and I were interviewed by Channel 3/58's Adrienne Bankert and Kayla started the interview off right by giving the reporter a high five on cue. Just like any typical 1 year old, Kayla spent most of the interview trying to get her shoes into her mouth. She enjoyed all of the attention and seemed amused when the crowd in the studio started clapping for her. After the interview, I got on the phones and took pledges for most of the afternoon with both my mom and David. The news reporter that took over for Adrienne that afternoon, Edie Lambert, kept telling viewers to make pledges for Kayla. We brought a recent photo of our family taken by a local photographer, David McKay, with us and had it at the desk with us while we were taking pledges. The reporter kept showing the picture of our family and kept saying "Do It for Kayla!” At the end of the day, we brought Kayla up to answer phones with us and then they did a final interview of us again to end the show. Kayla had her five minutes of fame that day.

We had a good day but were sad because Jeff had to fly back East to be with his dad for surgery to put a shunt in his brain so he wasn't able to be there with us at the studio. Jeff's dad was diagnosed with hydrocephalus and is still in the hospital recovering but he seems to be doing a little better every day. Please keep him in your thoughts and prayers.

Unfortunately, 3 days after the telethon, Kayla started showing signs of getting a cold again. We had been in the television station for over 8 hours that day so likely she got a bug while she was there exposed to so many people. On Thursday night, I stayed up with her all night and suctioned her every few minutes. Kayla wasn't able to hold her oxygen saturation for the first time since she was released from the hospital last November and we ended up having to give her extra oxygen through her trach. By the morning, I called the nursing agency and begged for some relief and David came by for a few hours to let me get some sleep. By the afternoon, we took Kayla in to see her pulmonologist and within a few hours, Kayla was admitted to Sutter Memorial Hospital again. Unfortunately, it was Jeff’s birthday on Friday so we were both having flashbacks to last year on Jeff’s birthday when we celebrated it in the NICU. Of all days to land back in the hospital! It seemed very surreal to be back and we were even in the same room in the Pediatric ICU as we were last year. The only nice thing about the experience was to see Kayla’s former nurses and doctors. They were amazed at the progress Kayla has made in the last year and they told us how impressed they were that we were able to keep her out of the hospital for 10 months. According to the nurses, most kids with respiratory issues end up visiting the ICU every couple of months after they are released. I'm sure that Kayla's improvements over the last year wouldn't have been possible if she had gotten a cold so we were really grateful that she has made it for so long without getting sick. Although isolating Kayla all winter last year was incredibly difficult, it really paid off.

I was hoping to get some sleep while Kayla was in the hospital but unfortunately, I spent most of my days, suctioning her and trying to untangle her from all of the tubes and wires that she was connected to. She seemed amused at taking her oxygen off of her trach and removing her EKG leads on her chest. Kayla had an IV put in her arm which made it very difficult to nurse her but with a little positioning; I was able to finally feed her. Kayla also had a roommate in the hospital that was waiting to have trach surgery and the poor little boy sounded like he was drowning in his own saliva most of the time. Every time his mother would leave the room, sometimes for up to 10 hours at a time, he would panic and cry until she returned. When he cried, then he would start choking on his saliva. It was the most horrible experience I have ever been through. There were so many moments that I was tempted to go over there and suction him myself but that obviously wouldn't have gone over well with the nurses. After one 7 hour session of his crying on Saturday afternoon, I thought I was going to lose my mind and I begged the nursing staff to move us to a different room. I felt like I was being tortured because I couldn’t do anything to help him besides push the nurse call light for him every once in a while. Unfortunately, the ICU was full and there was nowhere for us to go. That experience was one of the most trying experiences ever and I have never felt more helpless in my life. What a nightmare for that poor sweet little boy.

Kayla stayed in the ICU from Friday evening until Monday afternoon and she was finally released after getting some heavy antibiotics and lots of breathing treatments. Luckily, Kayla's lung x-rays didn't show any signs of pneumonia. Kayla finally started showing signs of improvements on Sunday night and by Monday she was released to go home with an order to follow up with her pulmonologist within a day or two. After getting Kayla home, on Monday her breathing became labored again and by Tuesday morning we were back at her pulmonologist’s office. The doctor prescribed some more medications for her and gave us the option of checking her back into the hospital. Since we have nursing care at home I decided to not check her back in to help keep her from getting any new bugs from all of the other sick kids in the ICU. Kayla is doing pretty well right now but is still requiring lots of suctioning and full time oxygen. We are hoping that the new meds will kick in quickly so that Kayla will finally be able to get some relief.

We will keep you updated on her progress over the next few days.

Lisa