Thursday, February 10, 2011

Thursday, February 10, 2011 9:16 PM, CST

Today has continued to be a stable day. Nothing new or different to add, no changes were made to anything.

So my reason for posting tonight has more to do with my desire to continue to spread the word about the need for organ donation and awareness. I am hoping that since most of you have been following Elizabeth's story or know us personally you have already made the decision to become an organ donor. But if for some reason you are still debating or questioning it. I urge to to do some research.
    I wanted to share with you part of a blog from another waiting mother, her 16 year old son is waiting for a lung transplant here in Texas, he has cystic fibrosis.
" I'm wondering if other mothers with healthy children can imagine that sound (coughing) and if they could keep a smile on their face daily throughout or if they'd refuse to help Tyler if they met him face-to-face.  I wonder why some still refuse to register themselves and their families to be organ donors or to spread the word. Probably because it's not their child but if it were - would you register?"
   I think her words pretty much say it all. And over the past year I have learned alot, there is a huge need for not only organ donors, but blood and bone marrow donations. Blood and bone marrow are 2 things that you can give while alive...AND SAVE SOMEONES LIFE! Elizabeth has need 7 blood transfusions just since November, and numerous more during other hospital stays. I personally had to a transfusion after her birth back in Jan last year. And as I have mentioned on here before Brynlee Thompson, a 1 year old from back home had a bone marrow transplant in Sept. A 19 yr old anonoymous donor saved her life.
We get emails/texts all the time asking what we need, or how people can help. Right now the biggest help anyone can provide is becoming a donor, and increasing awareness in honor of Elizabeth. You never know when you or your loved ones will be the ones who need organs, blood or bone marrow!

Wednesday, February 9, 2011

Wednesday, February 9, 2011 8:56 PM, CST

Good News.... NO fever at all today!! Thank goodness. Cultures are all still negative so hopefully whatever was brewing or growing got squashed when the antibiotics were started.  They decreased her Fentanyl drip again today, and she has done great, no extra doses of sedation needed, and she pretty much slept all day.
The only negative thing today was that she has been started on a blood thinner. During the ordeal with getting her new PICC the other day, they found she had a blood clot in her leg. In the area where she had a central line and her cardiac cath done (femeral/groin area). So they think the clot may just be related to all the trauma she had from those things in the past.  An ultrasound confirmed it and hemotology was consulted. She had lots of tests that I cant really explain done to check how her blood coagulates. They do not think this is a really big deal, the clot seems stabilized and they are not concerned about it moving around.  The blood thinner she is getting is given twice a day, and she basically needed to be stuck to give it. So in an effort to avoid sticking her multiple times a day for an unknown (right now) timeframe. A small catheter port was placed in her leg and she gets the injections into. She just started her 1st injection earlier today and her levels will be checked to ensure she is getting the right amount of the medication throughout the day.
So other than those things her day was pretty much spent sleeping and being chilled out, which is always a good thing. OH and she has her 2nd tooth coming through :)

Tuesday, February 8, 2011

Tuesday, February 8, 2011 11:23 PM, CST

Decent day for the most part. Only had 1 fever today, and only needed 1 extra dose of sedation due to getting her 2nd FLU shot this season. Still no growth from her cultures or the viral panel, so not really sure whats going on but all of her blood work is good and shows no signs of infections so we will see.
I attended a volunteer session with LifeGift here in Houston which is the organ procurement organization. They work to promote donor awareness and they are also the ones who will locate and transport Elizabeth's new lungs. So It was good to get to meet them. And I was able to meet a few other transplant recipents and a donor mom. LifeGift has arranged for me to meet with a local reporter here in Houston to share Elizabeth's story and hopefully help raise some awareness for the need for organ donors. I will let everyone know how that goes. I am excited about being able to volunteer for a few hours at a donor drive that will be held here in the Medical Center next week, as long as Elizabeth is still doing well. 

I had a dream the other night that Elizabeth got lungs in February, on a date coming up very soon. Its strange because in my dream the Dr  kept saying the date, so we will see if that dream comes true. That would be kinda crazy but great at the same time! Hope everyone is doing well and staying germ free!!!

Monday, February 7, 2011

Monday, February 7, 2011 10:42 PM, CST

SO thankful today for great nurses, who listen to us and care about Elizabeth!! Some of the Doctors were adament about doing a venous stick to draw blood since her PICC line was not working. We voiced concern and our unwillingness to allow her to be stuck, since in the past it has taken way too many tries to get blood/IVs. It just didnt make sense to me to stick her 5-6-7-8 times to draw blood and then stick her again to place the new PICC line since none of her labs were critical. Our nurse last night and this morning both agreed with me, and felt the same (they didnt want to stick her).  SOO, Elizabeth got her new PICC line today, and they were able to just postpone drawing her labs until it was in place. She also got her Synagsis vaccination today (prevents RSV) and they decreased her fentanayl drip last night. And decreases one of her vent settings. And they changed her formula to something that will hopefully digest easier, and allow her feedings to be increased. SO she had a VERY eventful day. She had a little bit of an episode tonight where her heart rate got up to 195 and she was working very hard to breath, but thankfully her saturations didnt drop below 90. Not sure what caused it, but thinking maybe all of the above things that were done have left her sore and tired, and she just needed a little extra medicine to deal with it. She has continued to have the sparatic fevers, but so far none of the cultures are growing anything (well other than our good friend MRSA, which she is colonized too, so it will always be around). So the thinking is that it may just be a virus that she has, but that test hasnt came back yet either. So wait and see, at least she is "stable" so I cant really complain. I just want to be sure of what the problem is, just in case she gets an offer, she needs to be in the best place possible so she can recover and not cause damage to her new lungs.

 She has been on the list for 1 month as of today. And we have been in Texas for almost 2 months. Seems like time goes so slow yet flies by here. This waiting stuff is no fun!! I have never been a patient person and this whole journey has found me at times on the verge of losing my mind. Before I would always wanted to hurry up and get to the next step but I have learned that sometimes I need to step back and just be thankful for how things are now. I keep reminding myself that as long as she is here, and doing ok I need to be happy with the NOW and not wish it away for what is to come. Because we have no idea what the future holds.  Hopefully it will be better, but just in case, I need all the time I can get.

Sunday, February 6, 2011

Sunday, February 6, 2011 9:04 PM, CST

Due to the continued slight fevers, and our continued concern about it. A viral panel was done and blood, trach, urine cultures were drawn last night. She was also started on 3 broad spectrum antibiotics to treat anything that might be growing. We just can not take a chance with her getting really sick, or having a major infection. All of the tests are still pending, she hasnt gagged/vomited today so that a good sign. And the new thing is that her PICC line has again stopped drawing blood back. Which means they dont have access to blood and have to stick her to get it for tests. Her PICC has done this a few times since we have been here and everytime they have been able to manipulate it and get it to work, but it looks like the time has come that she will have to get a new one. But this one has been in since November, so we are pretty lucky it lasted this long.  Not very happy about that because she will have to go downstairs to intervential radiology to have it placed, and moving her in never an easy task.  But she cant be scheduled for that until her blood cultures come back to be sure she doesnt have an infection. So hopefully we will know something about all that tomorrow.

Saturday, February 5, 2011

Saturday, February 5, 2011 9:41 PM, CST

The past few days Elizabeth has had episodes of gagging and has thrown up some of her meds a couple of times. She has also had random temperatures (we call it a temp anytime she gets 99/100 range since her temp runs low and the steroids mask real temperatures in her case). The temperatures will come and go and there has been changes in her breathing, so they haven't been very concerned. But tonight we asked for them to just do cultures just to be sure there isnt some infection starting. So we will see if anything grows from the cultures. As for the gagging/vomiting, there is no real indication of why. We arent sure if her stomach is irritated but she only gets a few meds in her stomach the rest of her meds and the small amount of formula all go straight into her intestines. She has needed phenergan the past 2 nights to stop gagging and be able to rest. So basically she is the same from a breathing standpoint, but pretty much uncomfortable and pitiful.
       We would like to say a big thank you to my cousin Dava, Middle Valley Church of God, and everyone who participated in and attended the gospel singing tonight. We would also like to say thank you to my Nashville hairstylst Chris and his daughter Keegan who for her 11th birthday shared Elizabeths story and donated gift cards to us. And most of you know I am in the Navy Reserves, this weekend the Reserve Center was authorized to wear civilan clothes instead of  their uniform with a donation to the Elizabeth Jetton Trust.  We are so grateful to be surrounded by awesome, caring people! We continue to feel loved, and supported during this difficult time.

Wednesday, February 2, 2011

Wednesday, February 2, 2011 11:38 PM, CST

Encourages each of you to become an organ donor!
Please visit the below website to gain more information, help spread awareness, and REGISTER to be an organ donor!