Thursday, April 10, 2014
January 2005 - Our second grand child, named Malayna, was born. My step daughter, Jennifer, was happy and scared all at the same time. You see, Malayna was born with half a heart, more commonly known as Hypoplastic Left Heart Syndrome. She found out when she was 7 months along. She was given a choice...go to Kansas City and have a late-term abortion or see if the baby will carry to term. She chose No. 2. She would not be able to live with herself if she did not.
So, Malayna entered the world on January 24, 2005. Two days later, she had her first heart surgery. At Children's Hospital in Philadelpha, Dr. Jeffery Norwood performed his Norwood Procedure. Took arteries and veins from other body parts to re-wire her heart to (somewhat) perform normally. She was the worst they had seen that was brought to term and survived the surgery.
Over the years, she has developed other problems, but there were many highs too. When she was 1, she developed cyclic vomiting. She threw up once a month for 5 days. The doctors thought it was related to migraines and that she would grow out of it. She did when she was 6 and then those migraines started. In 2012 she developed a condition called plastic bronchitis, where her lungs had these spidery-like mucus threads. She developed really bad knees that looked like baseballs, but got better with physical therapy.
She was as normal as she could be. She enjoyed all the holidays and was a ham in pictures and on video.
Over the years, they had to use some very unusual medications and procedures because Malayna most times did not respond to traditional treatments for her kind of condition. What they learned from her they used with other kids and saved lots of lives.
Fast forward to 8 weeks ago. She had a large build up of fluid in her body, especially around her heart and lungs. The bad news was that her heart had weakened. The team got together and with Jennifer, decided to do a lymphography. They mapped all her blood vessels to determine leaks. They used a thing similar to glue for aneurisms to seal the big leaks. The scary part was being under anesthesia so long. She survived. Jennifer was able to sleep in the same room with Malayna. Malayna was alert and responding. She loved receiving care packages. Then the team decided to do a bronchioscopy to remove the spidery mucus. She did "code blue" twice. They were able to bring her back fairly quickly. After the second time, they said no more procedure. By then, she had to be intubated because she could not adequately exhange air on her own. Her kidneys started responding and taking the fluid away. But because of the catheter for her to pee, she developed a UTI and also a lung infection. She was given antibiotics for those.
Then three days ago, the over night nurse practitioner ordered Vancomycin, which she is allergic too. She had a violent reaction. To counter act that, she ordered Benedryl which she is also allergic to. Well documented in her chart. She was now on the edge, but still clinging to life.
Yesterday, at 9:30am she coded again. This time it took 8 mintues to get a pulse. Still clinging, she lost her battle and passed away at 6:25pm last night.
She is now an angel. She is no longer sick. She is looking after everyone. She did what God sent her to do and now she is in Heaven to do other work.
We love you Malayna.
Wednesday, August 14, 2013
I went to my doc this morning. He explained to me that all I had was an extra beat.
He went on to explain that when a patient complains about an extra (sometimes called skipped beat), they do several tests. They know my blood numbers are excellent. My blood pressure is great (today was 122/74), my pulse was 64 (also really good). They do a stress test to see if there is any underlying problem (heart disease, heart failure, valve trouble, blockage, fibrillation, tachacardia, etc. I have none. So, he did the Holter Monitor to see if there is beat problem they could not catch. None.
He told me there are different muscles and chambers that produce the beats. It is all in sync. But sometimes, one muscle decides to a premature beat on its own. The other parts of the heart that were supposed to do that at the correct time say, "Okay, we'll wait a sec". And that is why it feels like a skipped beat, but it is really an extra one. I asked why I feel dizzy and asked if the correct beat backs the blood up into my neck and head. He said no. There is a build up of a little more blood and when the heart does that next correct beat, it circulates that extra blood. That is what you feel.
I did tell him that I did not press the button every time I had an episode because there would have been well over 200. He said that I had 348 episodes.
He wants me to stay on the magnesium, get extra potassium, more water and electrolytes. He will see me in four months. He said that back in the 80's they used to treat folks with this problem and the people got worse or developed other things. They learned that if that is the only thing they have, to not treat.
Thursday, August 01, 2013
Now that I got you by the title alone, let me tell you a story.
Early 80's when I was about 16, I kept telling my Mom how my heart beat would stop. Unintentionally, I freaked her out. I even had her feel my pulse to let her feel what I would feel. She took me to our doctor, then the local medical center and I was fitted with a Holter monitor which was the size of a walk man with wires and skin pads. Luckily it was only the 24-hour variety because I could not shower. I was the talk of the school because no one else had one on. When they read the results, something went wrong and (I think) the tape was damaged or erased. So, they just diagnosed me with a mitral valve prolapse and sent me on my way. That diagnosis meant years of having to take Penicillin every time I went to the dentist. That was just in case they cut me cleaning my teeth or drilling for cavities so that I did not get sick if bacteria entered my blood stream.
Fast forward to 2002 and I was sick and tired of taking Penicillin. So, my doctor ordered an echo. It showed no prolapse so I was finally able to get off the meds.
Fast forward to April 2013 and it was my annual GP visit. I commented to her that, in the last year, sometimes when I exercised I felt chest pain that sometimes shot to my back and sometimes made me dizzy. The spell did not last, but would come back during the same exercise session. She took an EKG which she said was normal except for a blip. She asked if I had palpatations or skipped beats. I said yes. She referred me to the cardiologist on staff. Two weeks later I saw him. He listened to my complaint, listened to my heart and carotid artery, and looked at the EKG. He said everything was normal except for an occasional episode which he said was "nothing". But he ordered an echo and a stress test. The results of both was very good. So, he prescribed Magnesium and said to come back in a month to let me know if it helped the skipped beats.
Yesterday, I asked him what the Magnesium was supposed to do. He said to even out the rhythm. I told him the mineral did help me poop. I told him I still had the skipped beats as often as I always had, but they were not as intense nor did I get dizzy anymore. He said the latter was good, but was putting me on a 24-hour monitor to test for stuff the other machines could not catch. He also took blood to test for Magnesium and Potassium levels. He may need to increase the Magnesium. So, here I am wearing the monitor which is a little smaller than the one in the 80's. I am to press the big button and document each time I feel an event. So far I have recorded 43 events.
I turn in the unit today at 2pm and will get the results in 2 weeks.
Friday, February 22, 2013
I had come home from work and the grocery store. I put away my hot pepper deli cheese and turkey breast. After a while I took the cheese out of the fridge to take the chill off of it so it melts easier when I put it on leftover sloppy joe. I put it off the counter so our youngest dog does not get to it.
I went to the bathroom and heard one of my dogs go out of the dog door. I came back out to the kitchen and immediately knew what happened. Guess I had not put the cheese up high enough. I had put it on the coffee maker and he never took stuff from there before. But one piece of the wrap was hanging over the side and MUST have provided too much temptation.
Half a pound of hot pepper cheese. What a treat for a 3 year old Lab/Pit mix.! I opened the french doors, turned on the deck lighting and yelled, "Enjoy it boy!"
No, no punishment. Just my stupid mistake, which makes for quite a funny story, huh?
Monday, July 02, 2012
Back in 2010, my sister-in-law told me about a kitty that needed a home. The mother of her friend was in the last stages of cancer. All her other animals had been adopted except for this light-colored tortoise shell kitty. I met the daughter at the Mother's house. Getting her in the carrier proved very adventurous resulting in the daughter getting many bleeding scratches.
I got her home and quarentined her until I could get her to the vet for a check up. There had been no known vet records, so we started from scratch.
She was definitely very skiddish. Most times would not let hubby and I get near her much less pet her. Then slowly the trust was built. We could pet her occasionally. The last couple of weeks, she would head butt my forehead.
Fast forward to last Thursday. She had been losing weight. We thought it was because our other cat was stealing her food. There also had been blood drops scattered here and there, but she had crusty ears and I thought it was from that. There was blood all over the inside and outside of her mouth. I took her to the vet Friday. They discovered a tumor in her mouth. The vet wanted her on antibiotics before the surgery. Also, they had discovered a heart murmur so that made the surgery risky.
Well, the vet called this morning and told me that it was more extensive than first thought. It involved the whole right cheek and connective tissue and was across the gums. There also was another spot on the left side. My husband I decided to put her down while she was still under anesthesia. She would never know a thing.
Dusty, we loved you. Go over the Bridge, girl. Go be with Mary (her first Momma).
Get An Email Alert Each Time FEDGIRL4 Posts