Tuesday, June 8: Update

I’m in Claire’s room again this time listening to the smooth tones of Jack Johnson: Claire likes his music and it seems to calm her.

Today was part two to yesterday’s hard day. Claire was very agitated yesterday and her heartrate and blood pressure betrayed her feelings to the world. It was difficult to watch and concerned the doctors. Today, Claire didn’t have a chance to be agitated until after surgery and the anesthesia wore off. We were disappointed to see the posturing continue as she started to stir.

What was encouraging is that the posturing doesn’t appear to be as aggressive as yesterday. Furthermore, her heartrate and blood pressure were not as volatile. Claire also did a much better job of moderating and calming herself today.

We were disappointed that the ventillator tube didn’t come out today and were hoping that Papa would be able to kiss her goodbye tube-free before be had to return home tomorrow. As it is Papa gently held her hand and whispered he’d see her soon without the tube.

It is hard too see my dad go home. He is a comfort to be around. He is strong and caring. He loves his family. The home he made for me and my siblings while we grew up made me want to duplicate it. While our world fell apart this week, he took care of us. I love him for it.

While my dad missed the extubation, he didn’t miss it by much. We’re expecting to have the ventilator tube removed early tomorrow. This is a big and complicated step. Claire is breathing well over the ventillator but we are still concerned about how well she will be able handle mucus production in her airways. We unconsciously swallow and dispose of mucus that lines our airways. We don’t know if Claire will be able to do that. She has a low cough and gag reflex that indicates she should be able to do it, but we don’t know how prepared her body is to take over those functions. So tomorrow will be a long, challenging day as she is monitored and makes a case for staying off the vent. Please pray her body only gets stronger once she’s extubated.

All of these events will take place in the context of Tiffany’s birthday. While celebrating is a difficult proposition, I am mindful that tomorrow is the anniversay for when my beautiful wife and best friend arrived. She will always hold my heart and I will always pursue hers. We celebrate together and we grieve together. Tomorrow will be a combination of both, and we will do that together as well. I thank God for my Tiffany.

To Answer a Few Questions…

Hi, this is Tyler’s sister, Emily. Since Tyler and Tiffany are focussed on Claire’s post-op recovery right now, I thought I’d try to answer some of your questions.

The doctors’ intention to move Claire to the Our Children’s House at Baylor is one more step toward her recovery. Our Children’s House specializes in preparing not just the child, but also the child’s parents for the day-to-day routine of life and rehabilitation at home, as well as connecting them to a network of experts who are available for advice and support. While Claire’s doctors will not move her there until specific goals have been met in her recovery, it is an excellent facility. If you want  more information, their website is at http://www.baylorhealth.com/About/FactsStats/FactSheets/Pages/OCH.aspx.

As far as the G-Button goes, it is only one more tool to help in Claire’s recovery. It can be used as little or as much as necessary, depending on Claire’s ability and willingness to eat orally, and it can also be used to administer medications. If at some point Claire’s G-Button is no longer needed, it can be removed, and the place where it was will heal over much as a person’s skin heals after a piercing is no longer in use. Ultimately, however, its duration is entirely dependent, like so many other things, on Claire herself and the rate at which she recovers. Wikipedia.org offers a decent explanation of the functions of a G-Button and has some useful external links. If you are curious the website is http://en.wikipedia.org/wiki/Feeding_tube.

Tyler, Tiffany and our entire extended family thank you so much for your love and concern toward Claire and toward us. While I can more than understand your desire for more detailed information, some of these topics are still difficult for them, as parents, to discuss precisely because so much of the process is still wrapped up in “wait and see.” I can also assure everyone, having met them myself, that the entire medical staff at the hospital are ridiculously awesome, and that her doctors are not only extremely competent but they are all personally invested in Claire’s recovery. They are making and will continue to make the decisions that are best for our girl. Thank you all for your truly amazing support, and also for your continued patience in letting Tyler update us only as much as he is able to do so, and at his own pace.

Post-Op

Claire is out of surgery and recovering from anesthesia. Evrything went very well and without complication. It’s hard to see a foreign object in our baby’s body and will take some time to adjust.

Thank you for your prayers and support. We will update later today as we determine whether we will get off the vent today or tomorrow.

Surgery at 9:30 AM CDT

The surgical team will be here any minute to prep Claire for her surgery. We’re feeling some butterflies and appreciate you keeping us in mind for the next couple of hours. Claire got a good night’s sleep and is very relaxed.

Today is a big day and we’ll keep you updated throughout the day. After surgery we are planning to come off the ventillator as well.

Stay tuned.