December 24, 2008

Today the nurse came for the 2nd time. I took pictures of nathan accessing the nurses vein peripherally. See the blood in the white part of the butterfly needle, that means you hit the spot! He actually got it and it slipped a bit, so the nurse showed him how to maneuver the needle around gently to get that vein that is running for its life. This will teach him how to access himself in the near future. Before these shots I got his vein, I have now accessed him 3 times. This is working! Go Nathan!

P.S. some people may ask, well why didn't you guys do this from the start. A child usually doesn't like to be stuck with a needle in the

in vein 3 times a week, and sometimes you don't get lucky on the first try. With the port it was a sure hit and the scar tissue that formed around the port from poking helped cushion the stick. I am really proud of Nathan for being a trooper and accepting this huge change and responsiblity that comes with it. He was so adamant about having his port just a couple of months ago! He really has come a long way!

Family & Sharing for Christmas

On my graduation day my family came down so we decided to exchange gifts early since we wouldn't see eachother on Christmas day. It was nice to have us together and share.

Its Christmas time!

It christmas time and we are decorating the tree. Nathan refused to decorate without me, I told him just put the balls on with your sister while I am shopping, oh he was not having it. We have created a very speacial bond through this whole experience, I have had him non stop and he "visits" his dads like before. Good times!

December 18th, 2008

Last night we celebrated my graduation with my family and friends, it was a blast. I was so excited that my son was able to be there with my daughter to pin me! Thank you to those who supported us through this very traumatic experience. Nathan is port free and infection free. We are on the road to peripheral sticks and he is optimistic about it. He wants to learn, and get this, he wants ME to teach him oh and with that said he wants to POKE ME! OMG. We are excited!

December 17, 2008

Today I picked up my son, he is doing fabulous! The Lord is good! My graduation is tonite and he will be able to see his momma complete a huge step in my life!

December 12, 2008 A success!

Today my son had his port taken out! It went well, he is already up and roaming the halls bugging the nurses, he can't wait to come home with me and spend the holidays sick free! The Dr. said she will release him for my LVN graduation on December 17th so he can pin me!

December 5th, 2008

Hello all! I would like to let everyone know that my son has been released today! I am so glad. He is coming home for one week until December 12th, then he will be admitted and have a surgery that morning to take out his bad portacath.

November 21, 2008, Nathan is doing better!

> Nathan is doing better, they are taking his chest tube out> today. He still has allot of pain but we are hoping that> after that tube is out the pain will subside. All his> cultures are final negatives to the point that they> aren't drawing them anymore for the MRSA. The drainage> is minimal and clinically my son is good. He is> emotionally sad because he is isolated from the world and> can't leave the room but if all goes well he will be> home soon. I think another 10 or less days. > > Thank you to everyone who supported us through this we pray> that he doesn't get sick ever again with something as> aggressive and horrible as this bug again.> > And most important thank the Lord for his blessings, prayer> is strong and real!

Out of the PICU... November 19, 2008

by the way nathan is out of the picu and back in room 227. i don't think he is up for visiters today but maybe tomorrow.

The worst day of his and my life thus far... November 19, 2008

Thank you everyone for your prayers yesterday. I can't even begin to tell you how scary it is when your sitting in a lobby alone waiting 2 hours for the surgeon to come out and say "ok everything went well" all the while your mind is trying to make you think negative horrible things. There was no way I was leaving my son for the first night, which is the most critical time after a surgery. He asked me to stay and wouldn't let me leave his bedside.

Yesterday nathan had 2 procedures done. A broncoscopy and a VATS (video assisted thoroscopy surgery). They cleared out the pleural space which was invaded with mucousy bacteria. I have pictures. the inside of his lungs were clear so he has pneumonia on the outside of the lung. I stayed the night with him in the PICU which was straight out heall. No sleep at all. He is however a bit better.

We are waiting for his chest xray to see if there is some change from yesterdays xray that was taken right after the surgery. The dr should be here shortly. He does have a chest tube hanging out of the side of his body that is draining any more bacteria or secretions that may think they are going to reside in him again!
Here is a website for your education.
http://www.cts.usc.edu/videoassistedthoracoscopicsurgery.html

More bad news... November 17, 2008

Today I got more news. Nathan has empyema (pus around the lung) on top of pneumonia and mrsa. The mrsa bug is very aggressive which you will understand it better after watching the videos that I sent yesterday. tomorrow he is having a surgery where they will put a camera in his side and suck out the pus to help him breathe and get better. He will have a drainage tube coming out of his side for a couple of days. His lung can't expand even more because its pushing his lungs closed. He only has a small percentage of left lung use.

The dr said if he by any miracle he has an improvement on tomorrows CT that they can postpone this procedure. He might be admitted into the PICU for aggressive nursing measures if needed. These nurses are critical care nurses and spend their day doing what we call "tough love". Right now Nathan is hard to deal with and "tries" refusing allot of things. The nurses have to push and make him do those things in which give him pain but in the long run will help him. In PICU they don't play.

Please look at the website below if you want to understand empyema better. Its really hard for me emotionally to explain to everyone over and over.

Please pray for Nathan. I am a mess.

http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/empyema.jsp

The facts... November 15, 2008

Here are some youtube videos to help you all understand the MRSA. He is on Vancomyicin which you will hear them mention in these videos. They are more concerned about his pain than anything else. His pain is controlled with the morphone pump.

I have been researching WHY and what happened. However there are several reasons this could of happened. Being that Nathan was in the hospital is one, two he had a knee injury with a scab that could of gotten the bug into his blood or the nurses not being careful when they were accessing his NEW port or the month that he was getting his factor in his veins could also push MRSA into his blood.

So for now on I will be not only pscho mommy nurse I will be psycho hemophilia mommy~! I already told the nurse today that my son needs to be cleaned up daily cause when he came home last week he was a dirty mess, that is asking for the germ to enter his port anyway it can!

I am at the hospital right now, and each time he wakes up I get a smile. Its much better than yesterday, he was miserable. Please pray for a negative culture to come back ASAP so he can start getting better from this horrible bug. Remember to WASH your hands and take good hygeine!!!!

Watch these videos they apply to everyone.

this made me cry:
http://www.youtube.com/watch?v=WaxoyAsWWCA

http://www.youtube.com/watch?v=ZuybyjV_3Ko

http://www.youtube.com/watch?v=gU7hrtxBWmA

Speechless... November 13, 2008

Nay has pneumonia and a blood infection. speechless...

Nathan

My son is 12 years old. He is a very sweet hearted special boy. I have never met anyone like him ever. I know he is my son, but those who know him will tell you the same. I always get compliments on him and how wonderfully sweet he is.

When he was about 1.5 -3 years old he would always cry that his ankles were huring him. We couldn't figure out what the problem was. I took him to the Dr. several times because he would get hematomas all over his body for no reason. The Dr. would do basic CBC counts which calculate your red blood cells, white blood cells among several other facotrs. The Dr. would say time after time that he was a normal kid that was rough housing and bruising. I took him to the Dr. when he was three for a routine vaccination. His regular physician that has been our Dr. since Reanna was born was not there that day. She was a Physician Assistant. That time nathan had a bruise on his back. She called me later that afternoon and told me that she would have to call child protective services as a precautionary protocal because of the bruising. I told her that I would be calling the medical board to report that I have taken my son to the Dr. on several occasions regarding this same issue and complaining that he did not rule out ALL things and that I felt it was malpractice. The Dr. called me back and apologized sharing how he knew I was a good mother and that she made a mistake. AT that point I demanded that he see a Hemotologist and this is where it all started. At 3 we found out that he had Von Willebrands Disease and moderate Hemophilia A. To our surprise no one in my family has hemophilia, I still do not know if I am a carrier or if it was mutated in him at birth.

My daughter also stands the chance of being a carrier. We took her to the Dr. and had them do levels on her clotting factors, but I just found out 2 days ago that its the DNA that tells whether you are a carrier. You can have normal levels and still be a carrier. I haven't broken the news to her nor anyone else for that matter...

Since then he has had 3 portacaths for prophylactic Factor XIII, a chest tube, bronchial lavage and bronchoscopy. To date he has had 7 surgerys and will undergo 2 more in the next 2 months to take out his current bad port and replace it with a hopeful functioning port. His 1st port lasted 8 years, it was as if my son was normal and giving him factor 3 times a week was like making breakfast. Then the heall started last year. Please read on...

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=180&contentid=45&rptname=bleeding

I am sad today... November 11th, 2008

I am sad to say that I am admitting my poor son once again to the hospital today. His port is infected that was just put in on the 3rd. I am going to get some answers today. I assume that infection takes its course with symptoms about 5-7 days and I think a germ got in it while they did the surgery which is by the way "expected"... nice hah.

He probably will miss thanksgiving and be there for 2 weeks to 1 month. Please visit him. He appreciates it and so do we. It helps us out when we are working or I am at school. I will be in school w-fr 3-11 for the next 2 weeks.