The Longest Day

Wednesday, October 26, has to be the longest day (outside of the operating room) in a very long time. Well, it was a very full day, and for 5 hours I felt like we were part of an episode of 24.

Olivia had an appointment to meet the new orthopedic doctor at Children's in DC at 2:15. We left close to 11:45 to ensure we'd get there with time to spare. We got there close to 1:30 and found a prime parking space. Unfortunately the rest of the day did not go so well.

As we were taking Olivia out of the car, her feeding tube got caught on her seatbelt, and pulled out of her stomach. Jack saw that we left something behind in Olivia's seat, and grabbed it and asked if we needed it. Both Dave and I had a small panic attack. The good thing was that we were at Children's Hospital, and they were definitely equipped to take care of her. The bad news is that we were scheduled to see the Ortho doctor in 45 minutes.

We struggled to decide if it was best to check in at the Orthopedic clinic and let them know we were going to the ER, or visa versa. Thankfully they were about 100 yards apart, so it wasn't a long trip between the two. We went to the ER. There was a line to sign in, which wasn't moving, so we went to the Ortho clinic. After I signed her in, I explained to the receptionist what was going on, and asked her for the number to surgery. I was hoping that Dr. Safford was in the office that day, but he was not. Then I asked them to page him and have him call the Ortho clinic.

Following that, the receptionist told us to go to window 3 to be registered. She told us that the doctor was running 1-2 hours behind. How's that for a window! Another woman told me that our referral hadn't gone through for us to be there, so I would need to sign a waiver saying that we would pay for the visit. I said, "Okay, here's the situation. You have Olivia's information in the system. We have never been here before, so that tells me that you, in fact, do have the referral, but obviously there's a glitch. I am going to take Olivia to the ER, and make some phone calls and then I will come back to check to see where the Ortho doctor is. At that point, I'll have the referral situation sorted out, and if you can just check her in, I'll make it happen from my end." She was good with that, and so we headed to the ER.

As soon as we got in line to sign in at the ER, I called about the referral. I tried to call three different places, and finally the third person could help me. I'm glad I bother to put all of Liv's medical contacts in my cell phone. It just needed to be refaxed over, so that was not a big problem. I have had another situation in the past that there was no referral in the system for us to go to Boston Children's, and learned that day that referrals could be back-dated, so I wasn't super concerned about that hiccup.

After that was worked out, I tried to reach the surgeon (Dr. Safford) again, and finally got to talk to him personally. I explained that we were at Children's for another appointment and that her tube had come out in the parking garage. He must've thought I was on my way home, because he told me to turn around and go into the ER. When I told him we were waiting in line, he said I was in the right place. I asked him what to expect, and he said they'd get her in there, a surgical fellow would come see her, put the tube back in and then take her to have an x-ray to check for placement. Oh, and by the way, schedule an appointment to see him Friday (Oct. 28).

We checked in and I called to make an appointment. 8:30 a.m. less than 40 hours later. Geez. I'm tired at this point, and we had literally only been there one hour. Jack and I walked back and forth between the clinic and the ER, trying to gauge the time until the Ortho doctor would be ready to see Olivia. It turned out that I, and the three younger kids, ended up going to see him while Dave stayed with Olivia in the ER.

Keep in mind that the Ortho appointment was scheduled for 2:15. I was called back to see Dr. Oetgen at 5. Had we not had the need to go to the ER, I'm sure we would've been livid that it took so long to be called back, but at that point I was relieved he hadn't left.

He was very nice. He looked at Liv's x-rays we'd brought with us, and said that it was good to see the sequence from over the years. We could really see the progression. Unfortunately, he said there are no indicators that it wouldn't continue to progress, so it was definitely necessary to intervene. I was relieved that he concurred with Dr. Todd. I guess that some families have this surgery performed so that it is easier to care for the children. That has never been a consideration for us, so I was confused when he asked me what our goal was for having the surgery. I thought it was obvious that we are looking to enable the best quality of life for Olivia. When I asked him, "Isn't that why you would do it," he told me that most people say it's hard to care for their family members. Honestly I can't believe that's all there would be to their story,but it's interesting that it's the reason they give. Doesn't everyone want what's best for their child???

Anyway, he told me that he was going to get the ball rolling to schedule the surgery. Someone would be in touch, but he'd like to see Olivia back in a few weeks. Well, actually he'd like to meet her.

The kids and I left there in search for Olivia and Dave. Since Dave's phone was dead, we had to track them down like they used to do in the good ol' days... I went to the ER, and asked the nurse where they were. She directed us upstairs to the radiology department.

The surgeon had been successful in placing the tube back in Olivia, but it was hard on her. She had real tears, and was crying. She was in obvious pain, but he finally got it in after applying some Lidocaine. (Wondering why no one thought of that earlier). When we go to radiology, she was content once again. I love that girl. She is such a trooper. We left the hospital at 6 p.m., went to dinner at Maggiano's (Italian restaurant) and got home around 10:30. LONG LONG day!!!

The follow-up with the G-tube surgeon was a HUGE waste of time. He was in surgery, so we saw a co-worker. He asked me about 3 questions, and looked at her site - just with his eyes. He didn't finish putting on his gloves since he was satisfied with the answers to my questions. I asked him if it was still necessary to return for the 6 week post-op, and he said it is. That appointment's on November 15.

The scoliosis surgery is scheduled for February 17. This is much later than I'd hoped for. Dave's work picks up at the end of February, and it doesn't leave much time for hiccups. I'm bothered by this, so I asked to be put on a cancellation list. There are several appointments that have to happen before that. She has to be cleared for surgery by just about everyone: GI, Nutrition, Neurology, Pediatrics, Anesthesia, and Orthopedics. That's at least 6 appointments. Not to mention blood work that needs to be done 3 days prior to surgery.

These are the upcoming appointments that are presently scheduled for Olivia:
November 15 6 week post-op (Bethesda)
November 22 Developmental Pediatrician (Bethesda)
November 30 Orthopedic Surgeon (Children's)
December 5 GI (Bethesda)
December 19 Nutrition(Bethesda)
February 1 Pre-op w. Anesthesia (Children's)
February 14 Lab Work (I think at Children's, but may try to arrange something local)
February 17 Surgery (Children's)

I am trying to get into Neurology at Bethesda, but the provider she was seeing at Walter Reed hasn't started over there yet so I'm not sure what they're going to have us do.

Lastly, Olivia now weighs 53 lbs! 8 lbs. gained since July. WOO HOO!

Please pray for our family.