No Surgery and Sara was very sick

Sara got sick around April 8th and was vomiting a lot. It got to where she couldn't hold anything down. I took her to the doctor twice and the emergency room once. They told us that it was probably just a cold or sinuses and the drainage was making her vomit. They gave us a prescription for nausea and vomiting and told us to give her pedialyte. It didn't work at all she couldn't hold it down. Her surgery was cancelled. The night of April 28th she started a fever so I knew I was taking her to the doctor he next morning. When I got up, I went ahead and got my shower and got ready to go. When I went to get Sara up, her fever was 105.5, she was breathing hard and fast, she had vomited and was unresponsive. I called her dr and he said to bring her there before going to the er. So I threw some stuff in our bag because I knew she was headed to the er. We got to the doctors office and he said she needed to g to the er (duh yes I already knew this!) he came back in the room and said he had called an ambulance for her. Thank God my MIL was nearby to get Logan. I rode with Sara to the er, and she was getting worse and worse. She was clammy, her heart rate was 218. Still unresponsive. We got to the er and there were so many people working on her trying to get an iv started. Then shortly after we arrived she went into cardiac arrest for about five minutes. Her heart had electrical activity but no pulse to pump the blood. They started doing compressions and bagging her. I think I was shocked or God was keeping calm, because I knew what was going on and all I could do was stand there rubbing and kissing her foot praying for her not to die. Jason was on his way he was stuck in traffic and didn't get there till it was all over. He didn't know what was going on. They got her back and got several ivs started. The doctor kept saying she is very very sick. Once she was stable they moved her up to PICU and told us she was very sick and it would be 2-3 days before we would know if she would make it. Her kidneys weren't working properly, her stomach couldn't handle any food, she was on the hey told us she may have brain damage or need dialysis for her kidneys. Eventually she started getting better. Her doctors told us that only about 11% of people who experience what she did survive, and they had sent her to PICU not expecting her to live. All of the doctors said they were amazed at how well she was doing, that her story would be one they would remember. They finally got her off the vent, and she did great. They stopped the sedation and after a few days she woke up. She did not seem to recognize anyone or to be the same child for a few days. She got moved out to a regular room and finally returned to her old self. Seeing that first smile, getting that first kiss after all that happened was wonderful. She was laughing and happy just like before she got sick. She got to come home May 19th. She has been doing well ever since and now weighs 42lbs which is the most ever. Still smiling, laughing, hugging and kissing. She has even managed to say "I luh" when I asked if she was trying to say I love you, she said "yeeaaahhhh" and smiled! She is our little miracle and such a blessing. Poor Logan is afraid we will have to leave him again. He asks everyday if Sara has to go to the doctor or the hospital. He will be okay though. I missed my little man!

Playing catch-up

It has been a while since I last blogged. Lets see.... Back in February Logan turned three and had a good party with family and friends. He is so spoiled! My family and friends all got together for a surprise birthday party for me for my 30th. It was a big surprise and lots of fun, thanks again to you all. :) Then in March, Jason had his Birthday, and we had our 10th Anniversary!

Sara is scheduled for her next surgery on April 21st. She has been real uncomfortable sitting up with just one rod in, and also her bones are borderline to have osteoporosis. The one rod in her back has already started putting too much pressure on her ribs and started bending them. So we need to get that other rod back in soon. Her doctors finally got her started on an IV infusion every three months for her bones. She had her first infusion April 7th and did great. A few days later she got sicke with some fever and vomiting, then it passed. Then it came back. She has a lot of drainage and mucus right now that is getting her choked up and causing problems for her. She hasn't been able to eat much at all because of it. Her doctors are supposed to let us know tomorrow if she is still on for the surgery.


I am very nervous and worried, as always when she has surgery. One because she is a little sick, and two because of the date. Yeah I know it sounds crazy but just wait:
12/21/01 Sara was born
1/21/04 Sara diagnosed with Rett Syndrome
12/21/05 Found out I was pregnant again
2/21/06 Had a D&E because we miscarried
6/21/06 Pregnant again
2/21/07 Logan was born

The 21st seems to have a history with us, and I am praying and hoping that April 21st will be a good 21st for us and for Sara.
I'm going to miss Logan so much while we are gone. I know he will be having fun with his grandma and aunt Tracy. I just miss him so and hate being so far away from him. Gonna miss our new doggie too.
That's all for now I guess.

A Miscarriage and Logans Birthday

Saturday marks an important yet sad day. December 21st 2005 (Saras birthday) I found out we were pregnant for the second time. February 20th, 2006 we went to the doctor for a three month checkup and ultrasound. The ultrasound showed we had miscarried. I was so devastated all I could do was cry. I had a D&C on February
21st. We requested genetic testing on the baby to see what had happened. Our doctor told us the baby had passed around 8 weeks. They called and asked us to come in to discuss the results of the testing and I remember thinking this can't be good. It turned out that our baby was a boy and he had something called triploidy. Triploidy is a rare lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 chromosomes, rather than 46. It is fatal and results in miscarriage. Sometimes a child is born with it but dies very soon after birth. There was one rare case where the child lived to ten and a half months. There are so many deformities and complications that the baby just can't survive.

I was so upset, shocked and sad. Our poor baby would have died anyway. We didn't get to meet him or hold him. The only comfort is knowing that God took him to heaven so he would not have to suffer. I remember wondering what was wrong with me? Why can't I have "normal" babies? Will my husband still love me and want to be with me if I can't give him children? Will I ever have a baby without problems?

We decided to stay off the pill and let whatever happened be up to God. June 21st 2006 I found out we were pregnant again. I was surprised not expecting it to happen again so soon! I worried the entire time and even worried something may be wrong with the baby several months after he was born. The pregnancy went great and ironically, February 21st 2007 I had another surgery.....a c section to deliver our perfect, wonderful, beautiful, healthy baby boy, Logan.

It is hard to believe my "baby" will be three years old Sunday. Time has flown by so fast. I can still remember him being a tiny newborn like it was yesterday! He is potty trained now yay! He says and does the most amazing things and he is so smart he amazes us everyday. Happy Birthday my baby boy! You bring us such joy and love.

We probably spoil Logan too much. He is the child we never thought we could have. Don't get me wrong, We love Sara so very much no matter what problems she has. She is a sweet blessing for us and I adore her! We just didn't think we would be able to see a child of ours walk, talk, run, play do all the normal things other parents take for granted. He drives us crazy sometimes! But he is so wonderful. We named him Logan Matthew. Matthew means gift of God. He truly is a gift from God.

Since The Surgery

Sara is now off her IV antibiotics and the PICC line is gone. She has been happy and smiley since her surgery and been in a good mood considering all she went through. She is still in a little pain every once in awhile, and she does not like to sit up at all anymore. Her doctor says since she only has the one rod in, that it is taking a lot of pressure when she sits up and that's probably what is bothering her. He said she could start mild PT again and excused her from school for the rest of the year. With the Veptr, you have to have surgery about every six months to lengthen the rod a little to accommodate for growth. It is supposed to be a simple procedure. He wants to do the next surgery in April so she can get that other rod back in and hopefully help her be more comfortable sitting up. He doesn't want her in school so she hopefully won't get sick before surgery and won't be in pain sitting up. So for now, we are taking it all a day at a time. I'm sad she can't go back to school yet because she loves school. I feel bad because she seems so bored here at home,except when her brother is talking to her and running around being silly.

Someone said they wondered if the surgery was worth it, since she got infection and is out of school and still in a little pain. I've wondered myself if it was worth it. I think it was. If she had not had the surgery, her left lung would be squished, probably collapsed and her be left with one lung. That could be fatal for her should she catch pneumonia or bronchitis. So the surgery was better than doing nothing. She is still with us. Smiling, laughing, loving. :)

Veptr Surgery

About three years ago Sara started going the The Shriners Hospital in Greenville. We would go every four months and they would xray her back each time. Each time her scoliosis was worse. Her Dr said to keep using her scoli jackt and wait see how things went. Things got worse. She is too young and too small for the spinal fusion surgery. The Dr referred her to a Dr in Columbia. Her scoliosis was close to 90 degrees and starting to squish her left lung. There was no more room for it to grow. He said our options were do nothing or to do a surgery to place a veptr (verticle expandable prosthetic titanium rib). The purpose of the veptr is too hold up, sort of prop up, the ribcage to allow room for the lung to grow. We decided to do the surgery rather than do nothing at all. The surgery was scheduled for December 16th, 2009, at Richland Children's Hospital in Columbia.

We arrived in Columbia on the 15th and spent the night. We didn't sleep much but I spent the night snuggling with Sara and she laughed and giggled so much. It was wonderful. We got to the hospital at 5am, she went back to surgery around 8am. It was so hard seeing them take my baby away and not being able to be with her. They got done around 12 and we were told all went well we could see her in Recovery soon. "Soon" came and went, and we never heard a word. I knew something was wrong and went back to recovery and was told the doctor would be out soon. So two hours after surgery a dr comes to tell us that when she went to recovery they removed her breathing tube and she was struggling to breathe so they sedated her and had to reintubate her so she could breathe. Jason had gone to get us some food, and another dr came and got me into recovery to see her.

They tell you your child has this tube and that Seeing her that way was the hardest thing ever. Knowing if they took that breathing tube out she wouldn't breathe. I sat there by her head and petted her and talked to her. She was still sedated and it was the most pitiful I have ever seen her. They finally moved her up to PICU and over the next few days weened from the tube to bipap to nasal oxygen to breathing on her own. She got moved to a regular room on her birthday, she stayed there for a few days and was finally released for home on Christmas Eve. J left that morning and I rode with her in the ambulance.
The holidays were hard and busy but we were happy to be home and back with Logan.

We had a follow up appointment and all seemed well. Then she seemed to be in a lot of pain and was running a fever. Then one of her insicions started bleeding and oozing, Iknew it was infection and we went to Columbia again. She was admitted into the hospital again January 8th 2010. They did surgery that night to clean out as much infection as they could. They discovered that the infection had traveledall the way up the rod on the right side so they removed that rod. The surgery went well and it was back to PICU for two days, then a regular room for two days. They put a PICC line in and sent her home on IV antibiotics three times daily for a month. The site is all cleared up now and looking good.

Rett Symptoms Appear

They say girls with Rett develop normally until around 18 months old, then suddenly the child starts rapidly losing their skills. Sara could say mama and ball. She lost that. Her muscle tone has always been very low. She keeps her hands close to her chest a lot. Because of this horrible thing that most Rett Parents call "The Rett Monster", our sweet baby girl has never sat up on her own for more than a few seconds. She has never, stood, crawled, walked or really talked. She requires complete care, like an infant in a childs body. She can't really play with toys or write, her low muscle tone affects her motor skills. Sara used to eat like a piggy, but her low muscle tone started affecting her chewing and swallowing. She started choking on her food, vomiting and aspirating her food. She couldn't gain weight and was in trouble. We had to get a feeding tube for her in 2007. She still gets little sips of drink and some ice cream or yogurt occasionally. She started having seizures and is on meds for that. She has constipation issues and severe reflux and she is on meds for those things too. She has severe scoliosis as well and has borderline osteoporosis. She uses a wheelchair.
Despite all of this, she is and has always been a very happy, smiley, loving child. She giggles and laughs, reaches for us gives us hugs and kisses. She seems to understand what we say. She goes to school and loves it. She really is a blessing and I love her so much.

The Diagnosis

We realized around six months that she was not developing her milestones like she should. We were sent to countless doctors for many tests all with no results. She started PT and OT at nine months old. Finally someone referred us to a geneticist. He examined her, listened to her history and symptoms and told us he thought she had Rett Syndrome. We had never heard of it. He took some blood and sent it for testing. We went home and researched Rett, and realized that the symptoms sounded just like Saras and we just knew that is what she had. Right after she turned two, he confirmed that she did indeed have Rett. We were told what to expect, what not to expect, told her life expectancy could be really short, that she would struggle, there was no cure. Take each symptom as it came.

We were devastated at first. Our child looked so normal, so perfect, such a sweet loving child. Why did this fluke happen to her? Why is there no cure, no way to help her? Then I realized that for some reason God made her that way and had to deal with it. So we did everything we were supposed to do, and took each day and treated each problem as it came. I choose to treat her as if her life expectancy would be just as long as anyone elses, not dwell on what could happen.