Monday, March 23

I’ve combined the last two updates from Tammy below. We continue to be thankful for the gifts the Lord is providing. Taylor has been blessed with excellent therapists and loving family and friends. We continue to pray for her heart, mind, and body to make a full recovery.

Update on Friday - 2/20

Taylor is still hanging in there. Last weekend, when she was dehydrated and they did two urine samples to make sure she didn't have an infection. Wouldn't you know, they both came back positive for a UTI. They started her on an antibiotic on Wednesday and she has had a little bit of diarrhea. Today has been a little uncomfortable for her. I think she has a tummy ache, as well as a little bit of congestion. When she's sleeping, she's very peaceful, but when she's awake she seems very tense and irritated. She got her last dose of Septra (the antibiotic for her UTI) at 1, so maybe she will start to feel better.

We have had a little bit of success with Vital Stem this week. On Wednesday, Taylor sucked 25 times. Her speech therapist about feel out! Taylor was almost asleep and very relaxed and just started sucking away. The next day she sucked again, but only 8 times. It's still hard to catch her at the right time because it is so vital to keep her meds and food down. She has spit up 3 times today already... We just keep praying that she will regain the strength in her cheeks and neck in order to keep progressing with her suck/swallow reflex. Insurance granted Taylor another week of Rehab and want to discuss future plans with her NG tube vs. a G-Tube at our next meeting on Monday. I'm really not sure Duke will reconsider putting in a G-Tube because Taylor's heart is not any better than it was when we were there 3 weeks ago. Her last Echo on the 16th was unchanged from two weeks prior.

Please pray that Taylor's heart will be healed. I know it's a long process, but it just seems that we've hit a wall with the healing of her heart.

Taylor also got a roommate late last night. He's a cute little two year old boy who grinds his teeth constantly and snores like an adult... wish us luck!!! :-) I still can't believe we've been in the hospital 11 weeks. I can tell you this; we are SICK of eating cafeteria food... Soon... we'll be home and be eating frozen pizza and Hamburger Helper again... as a family!!!


Update – Monday March 23, 2009

We had another care conference this morning, and this is what's going on...

Taylor is continuing to excel in all of her therapies. The vital stem technique they are using to stimulate her cheeks and throat muscles really seems to help. It is triggering her to suck more. Her speech therapist has seen improvement just in the last week. With the help of vital stem she is sucking between 10 to 20 times per session. Her therapist said, to be able to keep this going she would need to have this stimulation at least 3 days a week. Unfortunately, we found out this morning that there are NO therapists in the Jacksonville area that are certified to use vital stem. We've asked if we could get a prescription and purchase one of these miracle machines, but you have to be a licensed professional to get one. So, they are trying to locate someone close to our home that we could follow up with. If we have to, we will be driving 3 days a week back to Greenville.

Taylor continues to have issues with eating. She throws up at least once a day and this really concerns the doctors. They haven't been able to figure out WHY? They have changed her formula twice and her calorie count countless times, but still no real solution. Sometimes, Taylor will cough, and then gag, then up it comes. Then sometimes, nothing will trigger her. She'll be lying peacefully and start throwing up. It continues to make it difficult for the therapist to be too aggressive with her therapies. Regardless, they are doing an outstanding job with Taylor. They really are a special group of people who really care about their patients.

Taylor's last echo they did from last Monday showed no improvement. Not any worse, but not any better. Her cardiologist was going to consult Duke again to see if they would reconsider doing the G-Tube surgery. We haven't heard anything back from them, but I'm guessing she's still not ready.

Tanner came to Greenville with me last Tuesday to see his baby sister. He spent the night with me at the RMH and stayed most of the day Wednesday before Angela took him home. He did a wonderful job loving on his sister. The last two weeks has been hard on Tanner. He's having mommy withdrawal... Tate on the other hand is a total daddy's boy. Even when I'm home he walks around the house yelling for daddy! Pretty soon we will all be sleeping under the same roof... Looks like we're on a three week count down! In fact, this weekend we are allowed to take Taylor home for a one day trial run. This will allow us to find out what it is like with her at home to see if there is anything we need to do different before we actually take her home for "good." We will also get some good quality "family" time in. The five of us haven't been together since January 2nd. Can't wait!!!

God Bless
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