Tuesday, March 31

The past week has been a little frustrating. Taylor continues to have problems keeping food down. Over the last week, Taylor has gone from throwing up once a day to two and even three times a day. The doctors tried to do a gastric emptying study (Definition at bottom) on Thursday to get answers to why she continues to get sick. Basically, they stopped her feeds at 9:30am and didn't feed her until 4pm. Then, they gave her a little over 3 ounces over a 15 minute time period. We argued that it was too much food over a short period of time; however the doctor said this is how they had to do it. After she ate, she was supposed to lye still for 2 hours while a machine took pictures of her stomach every fifteen minutes. Forty-five minutes into the study, she vomited so they had to quit. Because, they could not complete the study it was in-valid. They have opted not to try this again, because they feel she will have the same results.

Friday, Taylor underwent another swallow study to see if the baby food they were trying to give to her by mouth was going into her stomach or into her lungs. This study went much better than the first study they tried 3 weeks ago. During the first study, she wouldn't even keep the food in her mouth. This time, she took it and swallowed it. The study showed that the thicker substance they gave her, which was honey thick, went down correctly to her stomach. However, the fine liquids such as apple juice and water went to her lungs. Taylor coughed and turned red and they said that was a good sign, because at least she realized that it went down the wrong pipe. So, now at least we know where to start and what is going where.

As of today, insurance is still up in the air as to if they will continue to cover another week. Our doctor was supposed to have a phone conference this afternoon to discuss the feeding plan. Our cardiologist sent Taylor's echo back to Duke to see if they would re-consider the G-Tube surgery. Everyone here feels we should go ahead with the G-Tube surgery if Duke accepts her. Evidentially, there is a procedure with the surgery where they can wrap her stomach so she would not be able to throw up. Insurance is also saying Taylor does not rate In-Home Nursing when we take her home. Jeff and I were disappointed because we were hoping we would be able to get a little help when we took her home. We got a little taste of what life would be like this past Sunday with her and the boys... and it is not going to be easy!

We took Taylor home Sunday morning for the day and it was an EXPERIENCE! Although, it felt GREAT to be home with her and the boys, it was also nerve racking! Taylor threw up two out of three meals and the boys were fighting for attention every step of the way. Tate kept trying to climb the outside of her crib. He was very excited to see her and kept yelling b-a-b-y! I think the atmosphere was too loud because Taylor seemed a little fussier than normal. It was good we were able to take Taylor home for the day. This allowed us to get some things figured out before her next visit home...

Well, that's about it for now. Please continue to pray for Taylor's healing. We love you guys! Tammy
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http://www.medicinenet.com/gastric_emptying_study/article.htm
What is a gastric emptying study?

A gastric emptying study is a procedure that is done by nuclear medicine physicians using radioactive chemicals that measures the speed with which food empties from the stomach and enters the small intestine. Gastric emptying studies are used for testing patients who are having symptoms that may be due to slow and, less commonly, rapid emptying of the stomach. The symptoms of slow emptying are primarily nausea, vomiting, and abdominal fullness after eating. The symptoms of rapid emptying are diarrhea, weakness or light-headedness after eating after eating.

How is a gastric emptying study done?

For a gastric emptying study, a patient eats a meal in which a solid component of the meal (for example, scrambled egg), a liquid component of the meal (for example, water), or both, are mixed with a small amount of radioactive material. A scanner (acting like a Geiger counter) is placed over the patient's stomach to monitor the amount of radioactivity in the stomach for several hours after the test meal is eaten. As the radioactively-labelled food empties from the stomach, the amount of radioactivity in the stomach decreases. The rate at which the radioactivity leaves the stomach reflects the rate at which food is emptying from the stomach
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God Bless

~

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
~

Monday, March 16

We have had an interesting weekend. Friday, Taylor started spitting up more than usual. She got a little worse as the weekend progressed. The doctors stopped her feeds on Sunday around noon and started her on a IV drip. They were worried that she was dehydrated because she didn't have the urine output that she should have had. They were contemplating sending her to either ICU or to the Ped's floor. Thankfully, she starting peeing and stopped spitting up! Thank God for pee!!!

Saturday, one of the nurses told Jeff that our insurance company was questioning if Taylor needed to continue therapy. It's amazing how much you have to fight for your child when they're in the hospital? Evidentially, our insurance company only approved Taylor for two weeks of in-patient rehab so they were expecting us to go home this Wednesday. Thankfully, we have a wonderful case worker going to bat for us with our insurance company. She said, it is normal for private insurance to "question" if a child needs to be in rehab. For now, Taylor will definitely be here through the 19th. Then our case worker will be back on the phone trying to get Taylor approved for at least one more week. She said they only approve 7 days at a time. There are no guarantee's, however because Taylor is making progress and they have proper documentation, hopefully our insurance company will not deny her.

Taylor's cardiologist, Dr. Hannon, also stopped in this morning to perform another echo. He didn't have the specifics, but from looking at her heart on the screen he felt it looked about the same from the echo they performed two weeks ago. He said the ejection fracture was around 32%, but not to get too carried away in the numbers because depending on the angle the numbers can vary. He still feels confident that Taylor will improve over time.

Jeff and I still have a steady stream of visitors. Our pastor has been up to see Taylor more times than I can count. It just means so much to us to know so many people care... Our church, our friends and family, and our community have been phenomenal!!! The love and support we receive daily is just AMAZING! To read the comments from my students at SWMS makes me so proud! Over the last couple of weeks, my kids at school have had a "hat day" and a "student vs. faculty basketball game" fundraiser in honor of Taylor. SWES also had their kids participate in a "hat day" fundraiser. We continue to be in AWE of how unbelievably generous everyone has been to us.

Taylor also received a ton of get well cards from Cole's kindergarten class (one of Taylor's Iowa cousins) as well as Bethany Baptist Children's Church. It's just an overwhelming feeling when you're reading a card from a 6 year old that says, "hang in there Taylor....God is going to heal you soon." Jeff and I want you all to know that everyone's prayers, love, and support has gotten us through the last incredibly difficult 10 weeks. We love and appreciate you all very much! We just hope we can pay it forward one day!!! Love you all!

Tammy

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Side Note:
According to the MayoClinic.com…
Ejection fraction is a measurement of the capacity at which your heart is pumping.
During each heartbeat cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it doesn't empty all of the blood out of a ventricle. The term "ejection fraction" refers to the percentage of blood that's pumped out of a filled ventricle with each heartbeat.

Because the left ventricle is the heart's main pumping chamber, ejection fraction is usually measured only in the left ventricle (LV). A normal LV ejection fraction is 55 to 70 percent. The ejection fraction may decrease if your heart has been damaged by a heart attack or other problems with the heart valves or muscle.

God Bless
~

Thursday, March 12

OK, although I’m posting this on Sunday, I’ve titled it as a Thursday post as that was when Tammy sent this info. Sorry, hectic week in the office…

Tammy talks a little bit about Taylor not holding her formula down. Apparently this has continued into the weekend and they have placed an IV. I will hopefully get more details tomorrow. We are confident the power of Prayer and the love of Christ will continue to blast through these obstacles.

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Taylor turned 6 months old yesterday (Wednesday). I had a piece of cheese cake from the cafeteria in her honor! I still can't believe we've been in the hospital for the past 10 WEEKS! Therapy is still going well and she is making progress. However, it gets frustrating because the therapist can't be as aggressive as they would like because they are working around her feeding and medication schedule. Nutrition and medication are a higher priority than her rehab. Unfortunately, Taylor is not keeping her milk down as well as she did when she was at Duke. When we were at Duke she was eating 4 ounces every 3 hours over a 30 minute time frame. After the transfer, Taylor threw up a couple of times, so they slowed down her feeding to 2 ounces over a 1 hour time frame. It has taken 2 weeks to bring her back up to 3 ounces. Then, Taylor threw up twice yesterday and once today, so she is back down to 2 ounces. I don't think it is so much acid reflux, she just starts to cough and then gags and then up comes her milk. Her therapists try to schedule her sessions around her meds and feedings, but sometimes it just doesn't work out so great. Speech is very hesitant to be aggressive stimulating her mouth because she is afraid that she is going to start gagging. I just pray that Taylor will be able keep her food down so they can eventually feed her a higher volume over a shorter period of time. That would allow the therapist to be more aggressive...

Jeff had to take a half day today to take Tate to the doctor. He has a double ear infection and a sinus infection. Hopefully, since he is on antibiotics he will start to feel better. Tanner is doing great and becoming a master at playing the Wii. He also knows all the words to the theme song Power Rangers.....thanks Tim! Well, I better run. Love you guys!

Tammy
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God Bless
~

Tuesday,

A little recap of what's going on with Taylor. We had another Care Conference on Monday. All of her therapist said they feel she is making great progress. They feel she will definitely benefit to stay here for the next 4 to 5 weeks as estimated. Since, she was on a "two week" trial basis, they have to call our insurance back and make sure everything is good on their end. Our case worker doesn't feel that will be a problem... Her Speech Therapist started a new oral stimulation called Vital Stem. Basically, they place electrodes on her cheeks and throat to help stimulate the muscles in her face in order to help with her suck and swallow reflex... Her cardiologist also stopped by to tell us that they would be performing another echo on Monday. He also increased one of her heart medicines. He commented on how well Taylor looks and expects her to show slow, but gradual progress... Slow and Steady, just like the turtle Papa gave her!

Tammy

God Bless
~

Sunday, March 8

Recap of the weekend from Tammy with some pics.

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Life is good! Both the boys got to see Taylor on Friday and Saturday! Thankfully, because the weather is so nice in NC, we were able to spend time together as a family. We took the boys outside to the huge playground connected to the rehab facility and had a picnic. We even took Taylor with us! Tate is going to be the one to watch. He kept trying to climb the crib because he wanted to get as close as he could to her. It was nice to see the boys with her... Taylor had one therapy session yesterday and none today. I'm sure she was happy she was going to get a little break... that is, until her daddy got a hold of her!!! When I got to Greenville today, Jeff had made his own schedule of when Taylor was to have her different sessions along with her "notes" of the day. He just cracks me up!!! He had documented every little thing with Taylor... So, if you want to know what Taylor did at 9:55am, she tried to focus on a red and white spotted ball. At 10:30 she tried to smile... the list goes on and on. Don't get me wrong, I am not complaining... Jeff doesn't have a lazy bone in his body and that's a great thing! Well, I better run. Taylor and I are going to take a tour of the hospital in her shinny red Cadillac...aka...red wagon!

Tammy

God Bless

~

Thursday, March 5

Taylor continues to do well in therapy. An Ear/Throat/Nose specialist examined Taylor today. They were a little concerned that her vocal cords have been damaged, but the report is that her vocal cords are in excellent condition!

Tammy posted this video today... While Taylor still has a long road to recovery, it really shows the progress she has made! The Lord has shown us his greatness so many times and continues to cover Taylor with blessings. It seems like the world stopped when she entered the hospital on January 4th, it's hard to believe Taylor will be 6 months old next week! Enjoy the video, and keep joining us as we thank God for his glorious blessings and continue to pray for a full recovery.

God Bless
~

Wednesday, March 4

I got some emails from Donna (Jeff’s Mom) with some recent developments with Taylor. I am so happy for them all! The Lord is my shepherd; I shall not want...

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Tammy just called on her way back to Greenville. She had some good news... she will probably email with it later, but I can't wait to share it with everyone. I had to call Dad at work and interrupt a meeting... Jeff had called her to tell her that they did another hearing test on Taylor. This time it showed that BOTH ears were responding as normal. They said that the brain responded normally on both sides... they had already perceived that she was turning her head toward sound, but her response was slower than what they thought it should be. They think that part of the reason for her slower reaction is due to her tightened muscles that she has. God is good and his timing is alright with us... we will just continue to pray! Just Monday the rehab doctor came in to talk with Tammy personally about Taylor's sight and hearing tests that were done in Duke. He was not sure if Tammy had been given the news that she might be blind in both eyes and deaf in one ear. Tammy said that he teared up while talking with her. He apologized for losing his composure, and Tammy told him that it was reassuring to her that he had that much compassion for a patient he barely knew. Now today the news is different, and it continues to show us that God is still continuing to heal Taylor! "Heal me Oh Lord, and I will be healed..." Yes indeed! We will continue to "lift our eyes unto the Hills from whence cometh our help." (That’s a paraphrased Bible verse...my old catechism days come back from time to time but never as accurate as I would wish)
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And then another email just moments ago...

Jeff called me on his way back home to Richlands. He wanted to share the good news also about Taylor's hearing test. He said that there is a very noticeable difference in Taylor since she has had several days of therapy. She is much more relaxed and peaceful, and he said that he saw her smile open mouthed twice today!! He said it seems as if little by little Taylor is coming back to them and agreed that God is not done with Taylor yet!

God Bless
~

Tuesday, March 3

A quick recap that Tammy sent yesterday… We can’t help but be thankful for the friends, family, and blessings that the Lord has bestowed us.

 

Taylor is still doing a good job in therapy.  Today, she coo-ed doing both her sessions with OT.  It made my heart smile. J  Jeff and I had our first Care Conference this morning.  Basically, this was a meeting with everyone who is involved with Taylor.  They gave us an idea of what they hoped to get out of Taylor.  Simple things like, turning her head to recognize toys and faces, bringing her hands together, and kicking her legs while relaxed...They estimate that she needs about 6 weeks of therapy.  Therefore, our estimated date of departure is April 9th.  It could be more or less depending on how Taylor is doing.  Jeff and I celebrate our 5th anniversary on April 10th, so it would be a great present to have her home by the 10th.  We'll have to wait and see.  Personally, I can already tell a difference in Taylor's healing.  The therapists and nurses say she tries to localize with her eyes and she does turn her head towards noises.  When you're with her all the time, you kind of get the same impression, but you don't know if you’re just desperate for good news.  It's good to hear it from the professionals!  We're just so thankful that she was given the chance to be here...

Love ya lots!!! 

Tammy

God Bless

~

Monday, March 2

I got my update in the car on my way home from work, so hopefully I will remember enough to provide a quick update. I will try to get more detailed information the first chance I get!

Tammy and Jeff had a team meeting with several therapists/doctors in the rehab facility. They have set goals for her, and they told Jeff and Tammy that they plan to keep her there for the full 6 weeks, and at the end of 6 weeks if she hasn’t met all her goals, they will come up with a new therapy plan and work with her until she does meet her goals! Thank God they have opened Taylor with open arms and plan to see this through. Apparently Taylor is doing awesome with therapy and well on her way to meeting some objectives already. From what I understand the therapists are a wonderful group of people, Angels sent to work with Taylor.

Unfortunately, the latest tests on Taylor’s heart showed that her heart has digressed some. I don’t have the official stats, but they will obviously keep a close eye on this. They plan to adjust her heart meds, as Taylor had gained some weight while she was at Duke, but the medicine levels were still based off her previous weight. Hopefully this will help things. It can be frustrating at times, but the cardiomyopathy meds may take several months before we start seeing much improvement.

God Bless

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