Finally We Can Take Our Little Angel Home!!!!
November 11, 2004
When the day finally arrived for us to take Taylor home, we were filled with emotion. Excited, scared, happy, nervous, blessed, thankful; you name it, we felt it!!! I rode in the back with her of course. We made it home and introduced Taylor to her new room. Her room had changed a bit because she required extra equipment . We came home with an apnea monitor, saturated oxygen monitor, oxygen, suction machine and tons of other odds and ends. Regardless, we were just so happy to finally have our little one home.
Finally Together As a Family
November 10, 2004
The night before Taylor came home we were able to spend the night with her at the hospital. Just the three of us...well and some nurses visiting and saying good bye.
Back To Phoebe
November 02, 2004
On Nov. 2, we had Taylor transported back home. EEGs were repeated, still thankfully no seizures. They immediately pulled the tube from her throat. One therapist had a fit over that tube, she couldn't believe it had been down her throat for three weeks. She said Taylor would be very oral defensive because of it, which she still is to date (03/29/05). They chose to handle her secretions by using a Scapolimine Patch, which is used for motio sickness but has a side effect of dry mouth. It worked, her mouth was definitely dry, her lips would peel daily. Taylor remained at Phoebe for eight more days.
The Next Three Weeks
October 13, 2004
We followed Taylor's ambulance, I've never gotten to Atlanta so fast in all my life!! We packed clothes for a week, and ended staying for three. We lived in a Ronald McDonald house not to far from the hospital. CHOA (Childrens Healthcare of Atlanta) repeated all Taylor's former tests, (CT, MRI and EEGs). Thankfully she continued to be seizure free so they took her off the phenobarbital. MRI confirmed extensive damage to her basil ganglia and still she could not suck and swallow. Because she could not swallow and had no gag reflex she could not protect her airway. A suction tube was placed in her mouth and pushed to the back of her throat to suction all of her secretions. Due to the fact that Taylor could not protect her airway, and was having problems with reflux it was decided to do a Nissen Fundoplication Procedure. This would keep Taylor from being able to reflux and aspirating. During the same surgery, Taylor had a g-tube inserted into her stomach. This is how we feed her. Taylor had a rough time after surgery, her saturated oxygen dropped very low many times. I thought once that we would lose her. Thankfully, God let us keep her. Once Taylor was healed from surgery, knowing there was nothing else the doctors at CHOA could do for her, we had her transported back our hospital at home. We were told only time will tell what our little Taylor would be capable of.
The First 10 Days At Phoebe
October 03, 2004
We were for the most part unable to even touch Taylor, it was much to stressful for her. It was so scary, she had wires running everywhere. I did finally get to hold her for about five minutes when she was 3 or 4 days old. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
She had no suck/swallow or gag reflex. She was on the vent for 2-3 days, then placed on a C-Pap and over a couple days she was weened from that to breathing all by herself. She had a CT scan, MRI, and numerous EEGs. The EEGs were done to determine whether Taylor was continuing to have seizures. She was not. She was kept on the phenobarbital as a precaution. MRI showed due to the lack of oxygen, Taylor's basil ganglia portion of her brain had suffered damage. This is the portion of your brain that controls motor skills. Tommy and I stayed at the hospital (even nights) around the clock for the first week. On the seventh day we finally left to sleep at home. We couldn't take our precious angel home to her new room, she had to stay at the hospital. Bright and early everyday we were there with her. Doctors couldn't give any answers and continued to give her phenobarbital as a precautionary measure. We made the decision to take her to a children's hospital in Atlanta, one with pediatric neurologists.
