Friday, February 27

Today Tanner got to see Taylor for the first time in 7 weeks. My sister Karen brought Tanner and her son Jaden to see us. Getting two three olds out of the car and into the building was a challenge. They both were karate chopping each other and trying to race to see who would be first to the door.  Just like boys... :-->   Tanner was so adorable when he saw her......The first thing he said was, "can I rub her gently?"  He rubbed her beautiful head and then asked if he could hold "baby Taylor."  He only held her for about two minutes, but he showered her with hugs and kisses!  Then, we went on a walk to the cafeteria WITH Taylor!  That's right, I said WITH Taylor.  She is not hooked up to heart monitors in rehab, so we can walk her around the room and take her for a stroll when ever we want!  We loaded Taylor in the wagon and away we went to get some lunch.  Boy, that was a lot of fun!  Tanner and Jaden each had to have one hand on the wagon and they wanted to run with her.  Both of the boys ran over each other's foot in the process.  It's a little preview to what "home" life will be like when she's ready to go home....kind of scary........So far rehab has been good.   She has PT in about an hour.  She gets a little cranky when anyone tries to move her around.  I guess it's going to take a while to figure out how to "relax" her muscles again.  Well, let me run.  Dick and Donna should be here real soon!  Love ya'll! 

  

Tammy

Thursday, February 26

We finally made it!!! We arrived at Pitt Memorial Hospital around 12:30pm. Taylor is resting comfortably, probably dreaming of her brothers. All of the staff in the Rehab facility have been outstanding. They are so sweet and so encouraging. They have Taylor on the schedule to start rehab at 8:30 in the morning. Occupation, Speech, and Physical Therapy will access her to see what her goals should be and we will have our first "care conference" on Monday. In our conference, they will discuss where Taylor is now and where they think she should be. They will also give us a projected departure date. Tanner has been talking a lot about Taylor lately. He asks when she's coming home so he can help hold her. How sweet! Tate is still somewhat clueless. He does however, realize when his daddy is out of the house. Yesterday when I was home, he walked around the house yelling and looking for daddy. It was really cute. I'm sure they are just as ready for us to be home as a family again just as much as Jeff and I are. Tonight Jeff is taking Tanner and Tate to support his girls high school basketball team. They are in the 2nd round of the state playoffs. He is mighty brave to be taking both of them! I told him to make sure he has lolly pops in his pocket for Tate!!! Well, I better run...the Princess wants to be picked up! Love you all! Tammy

God Bless

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Tuesday, February 24

Well... we have another delay and Taylor did not go back to Pitt Memorial this morning. It appears that Taylor has a second infection developing in her Broviac Catheter tube and they will need to remove it after all. Pitt Memorial won’t accept her with an IV, so they will have to finish the antibiotic cycle at the very least. Below is an email Tammy sent late this afternoon with more details.

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So this is the deal, the doctors here at Duke have been doing blood cultures daily since Taylor's episode last Thursday. They determined that she had a bacterial (staff infection) in her Broviac. Since then, a second infection appeared on a culture they did on the 20th. She has not tested positive for anything since the 20th, but they will be giving her 10 days worth of antibiotics to kill any infection. This morning the doctors came in and said Taylor will need to have the Broviac taken out. They put in an IV in her left foot around 2pm and are trying to schedule her to have the Broviac taken out this evening. If they don't get to her today, they are hoping to get it taken care of tomorrow. As for Greenville... when we will be going is still up in the air. They just said they should be able to get us there this week. Everything happens for a reason, right! Taylor has had a great day with Physical and Occupational Therapy. During PT, she was very alert and even pulled her head up when she was on her tummy exercising. She was also able to suck again a few times during OT. The therapist has been trying to seduce her with apple sauce... She took a little bit. Later, with me I spoon fed her a little bit of apple sauce. I didn't give her much because the therapist said to try this twice a day, only giving 5 to 6 tiny bites at a time. However, she did very well. She licked it and kind of gave me a look like, "what are you putting in my mouth?" She digested all of it and never once spit it out. I just kept smiling and praising her for the outstanding job she was doing... Little by little, Taylor is amazing us all!... I spoke to a mother of 3, from New Bern, North Carolina last night on the phone. Like Jeff and I, they have two boys and a girl. Her daughter was diagnosed with Cardiomyopathy when she was 13 months old. It has been 3 years now and she is completely healed. She is a walking miracle and a testament to what God can do. It was good to talk to someone who has been in my shoes and had some inspiring stories of her little girl. It gave me a lot of hope to hear her story. God is good and He's not done with Taylor... sending my love!

Tammy
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God Bless
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Monday, February 23

Good News! The insurance company accepted Taylor’s rehab! Greenville is aware of the infection with the Broviac and has agreed to treat that as well and they are ready for her. They will be leaving Duke at 9:30 in the morning (Tuesday). We thank the Lord for this blessing!! The RPN at Duke told them she was thankful that Jeff and Tammy pushed the issue. She said sometimes parents don’t know to be so assertive. I’m confident that Taylor will show that same determination in rehab!

God Bless
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Sunday, February 22

Just a quick update for tonight. They have determined what caused Taylor’s episode on Thursday night. Apparently a bacteria issue with the Broviac Catheter was responsible for the fever and heart rate issues. This left the doctors with a couple options; either remove the Broviac or try to treat the infection. As of tonight, they are going to try and treat the infection so they can still take advantage of the Broviac Catheter.

God Bless
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Friday, February 20

I often compile information I receive from family members or Jeff and Tammy directly to provide an update. But I really can't say it any better than Tammy's email today.

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Great news... I just saved a bunch of money on my car insurance by switching to GEICO... Just kidding...You have to make yourself laugh here, or you go nuts in this tiny room....... Anyways, Taylor had a better night last night. The respiratory therapist came in twice to suction her and that really seem to help her breath better. Other than that, her vitals remained good and she slept most of the night. All of her labs have come back normal, so they never really determined the cause of her fever. The respiratory and physical therapist came in this morning to work with her. PT gave her a chair to sit in that kind of looks like a car seat. It helps keep everything in midline. She is sleeping in it right now. OT tried to stimulate her mouth so she would try and get back that sucking motion. She was pleasantly surprised when Taylor latched on about 3 times. We were all very happy! After they left, I gave Taylor a little break and then I put my pinkie finger in her mouth like I have done so many times in the past and tried to get her to suck. Taylor latched right on and sucked 8 straight times. I stood there and cried, Thanking God for that moment. It didn't take Taylor long to get irritated with me, so I took my finger out of her mouth and she fell right to sleep. She never ceases to amaze me with her strength. I think it is very important that we continue to stay positive and look at her successes. She has came so far and is still holding her own... It's easy to let the negative consume you, but when you look at Taylor and the peace she has on her face, you just know everything is going to work out. I know we all wish Taylor would instantly get better over night and we had all the answers to the future, but realistically Taylor will let us know in time. She's my little angel right here on earth and I thank God for her every day! I love you guys!

Tammy
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And some pics...

God Bless

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Thursday, February 19

Taylor had a scary night last night. At 3am, the nurse paged the doctor because of how high Taylor's heart rate was. It was in the 190's. The doctor came in and examined her for about 10 minutes and then said to page her back if she didn't get any better. About ten minutes later, her heart rate jumped to 215 and the room got real crazy! About 10 different doctors and nurses piled into the room trying to figure out what was going on with her. They did an EKG and gave her extra oxygen. Her temperature had spiked to 102, so they gave her Tylenol and put a cold rag on her head. After about an hour, her temp went down and her heart rate went back down to the 170’s, which is still high. She also has a lot of gunk in her throat, so her breathing is more labored and she sounds really horse...Poor baby! She finally went back to sleep about 6:30 this morning. It made for a long night with little sleep for both Taylor and Tammy.

The silver lining of the day… Taylor has officially been accepted to Pitt Memorial on a two-week trial basis. Now the only obstacle that is left is the insurance company agreeing to cover it. They should find out tomorrow.

It’s not clear how much the episode last night will delay rehab or not, but we are all so confident that if Taylor is allowed to go to rehab she will once again overcome all odds. So continue join us in Prayer, I know He will provide.

God Bless!

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