We started off the day by getting weighed and measured. Ali, being the little fighter that she is, showed off how well she can tolerate her feeds now by gaining 6 ounces and growing 1.5 cm this month! She remained on her curve for the second month in a row!
After getting weighed and measured we had some time to spare so we had lunch and took Ali for a little drive. She was obviously hungry but she tried so hard to be a good girl and she hardly cried at all. She was fasting because she was undergoing anesthetic to have her P.E.G. tube replaced by a more permanent MicKey. By the time she went into surgery she hadn’t eaten for over 12 hours.
We checked in for surgery at 1:30 and had to wait until about 3:00 for Ali’s turn. We killed the time by playing and snuggling, Ali was in a great mood for such a hungry little peanut. Jason walked down to the OR with Ali, and then when he came back we went to have a coffee. We were told to expect to be paged in 30 – 45 minutes and we were.
When we arrived back at the Day Ward we were told that Ali wasn’t back yet, she would be admitted overnight, that the Gastroenterologist and the Anaesthesiologist wanted to speak with us and that we were to wait there for them. Weird! We waited for a while and just before 5:00 we asked the nurse to call recovery to ask if Ali was there yet, at that point we found out that she was still in the OR as were her doctors. So two hours after her 30 minute surgery started she was still in there? My heart sank, I was so worried. So there we were sitting in those chairs with no idea what was going on. I can’t really describe how I felt, my baby was somewhere in the hospital in trouble and all I could do was sit and wait. I knew that it was a simple procedure and that she was with a great team of doctors but we have already learned from experience that people make mistakes . Things can go wrong in the blink of an eye. Maybe it was an overreaction but I sat there and wondered if after all that we had been through if this was how it was going to end? Eventually the Gastroenterologist came out and very quickly we established that Ali was indeed okay. He had quite a story to tell though.
They tried to pull the P.E.G. out through Ali’s stomach wall and it wouldn’t come out. It caused some bleeding so they decided to pull it up and out through her throat instead since that’s the way they put it in. It got stuck. They couldn’t pull in out and when they went to push it back down into her tummy they realized that they couldn’t do that either. It was stuck in her throat. They tried for a while to move it and I guess it soon became apparent that it wasn’t going to budge so they called an E.N.T. . He used some special equipment to remove it. Once they removed the P.E.G. they went back into Ali’s throat and stomach to look for damage. They didn’t find any but her throat began to swell and they were worried that she wouldn’t be able to breathe. She was given steroids to reduce the swelling and remained intubated until they were sure that she was okay. Once the steroids had done the trick she was woken up and brought to the ward.
When we were finally reunited with Ali it was in the room where she almost lost her life 10 months ago. There she was all snuggled up in the exact bed where I watched her day after day struggling to survive her drug overdose. I sat there and I watched her sleep and remembered those lonely nights when I was afraid to take my eyes off of her because I thought she was going to die. I remembered how hard it was to watch her scream and cry as she underwent painful and scary procedures and I remembered sitting in the chair as the resident told me that she’d been overdosed on Digoxin.
I thought I’d come a long way since then, I thought I’d healed and that we’d all moved on but I can tell you now that there’s still a lot of healing left to do. It felt like it just happened yesterday. I thought I was going to lose her then and for a while yesterday I had the same fears and I find myself wondering when, not if it’s going to happen again. You see that’s the thing, she survived that drug overdose and the P.E.G. came out of her throat but she still has Costello Syndrome. I can lie in bed and make bargains with God every night but when I wake up in the morning it’s still going to be there. There a lot of things in my life that can be fixed with hard work, positive thinking and determination but my daughter isn’t one of them.
What I realized last night was that what I remember most about being in the hospital with Ali after she was born was looking forward to the future and putting everything behind us, to just going home and being normal again and not having to worry all the time. That never happened and I don’t think it ever will.