"The" Meeting

Wendesday, March 23, 2011
The Meeting

Nic and I made it to the hospital, with Juliette in tow, and dropped her off for 1/2 hour in the children's playroom on the 6th floor. We were told they didn't have volunteers today so she couldn't stay to play without a parent. We ask if she can stay for 1/2 hour so that we can focus during our meeting and they make arrangements for her.

Nic had been up earlier with Cayleigh while I stayed with Juliette who had the sniffles today. (please pray those clear up!) Cayleigh had a great day, the IV in her head was taken out and she was in her pink, fleece looking harness without desating. Nic says the OT told him they were going to start it off a little loose and then work it to the tightness she will require to get her dislocated hips back in place.

We make it upstairs to the 15th floor and head to the meeting room. The social worker is there, the pediatrician, the genetics doctors, a nurse and the lead physician are all in attendance. The neurologist wasn't able to make it due to schedule - her name is Dr. Farmer-Barker. She will be the one following Cayleigh through her progress and even after discharge.

so the lead physician basically asks us how we feel everything is going, what are we comofortable doing and what the plans are for the near future. Nic and I basically tell her that we're comfortable with everything. We have our reservations about evening shifts or if one of us has her in the car solo and the other isn't present. We want to make sure she is not desating or anything without us knowing. Which, she has gone drastically down to having just 1 per day - so KEEP UP THE PRAYERS! Let's shoot for ZERO!

She tells us about all of the potential equipment we might be having, and be trained on, before bringing her home. A portable suction device, oxygen with the nasal cannula, the desat monitor and the G-tube stuff and we will need some home nursing as well. She tells us that she'll also be on medications such as the reflux meds they are using, robonal (the anti secretion stuff) and viatamins. She won't have an IV, she'll just get them through the G-tube.

When? Well thats the question that doesn't have any definite answer...our hope is 3 week! She needs to be up to 21-25 ml per hour in her G-tube (she's upped from 6 to 9 today) so that her small stomach (which is small compared to others her size - but who compares?!) can begin to expand and stretch to hold it and digest it. Around that time (when they get up to the 21-25ml) they will remove the PIC line too.

Like I said, she's got her pink harness on. Before, when they put it on her she desat'ed until they took it off of her. Today she's been good! Pray for that!! she'll wear the harness, which will slowly adjust the congenital hip dislocation and bring the hips into alignment. She'll require a great deal of Occupational Therapy and Physical Therapy to work on getting her aware of everything she should be doing, bringing things to her mouth, walking, etc. (obviously in the future) and I (we) will work with her at home too.

The genetic dr, Dr Wagner and Dr Sheh, tell us that they have a very small finding which basically only has 15 reported cases anywhere. They used such an in depth test, one that goes far beyond normal genetic tests, that they found this tin part of one of her chromosomes that was duplicated. It's called 1Q21.1 Duplication. Don't bother googling it - there are way too many different things that people think and there is absolutely no research or evidence to back it up. They don't know what it causes, what it means or how its caused yet. It's a new finding with a new test. There are people in the study that are totally normal, one with mental retardation, one with ADHD, one with Autism, one with a heart defect, one with dislocated hips, one with arthrogryposis (which Cayleigh does have).. they are all totally different. We agreed to get both of ourselves tested for their research and to know if either of us had it. I'm not the least bit worried about it - to me, they were grasping at straws in the air and came up with this. It doesn't change anything whatsoever, no new treatments, no nothing. I like nothing.

So that's it. My baby is a champ. Please pray for her to continue to make progress and to defy the odds and expectations of doctors. Pray for her doctors and nurses to have wisdom in caring for her. Pray that she maintain stable stats. That she does well in the harness. That she tolerates and digests all her feeding increases well. That she doesn't get sick in the NICU, that her G-Tube heal and have no complications.

Thank you all! Enjoy the pics (Yes, she is his clone)