Hi everyone! First I want to thank everyone for your thoughts and prayers. It has been a whirl wind of emotions and newness. I can't recall the last time I was able to get on here. While Anna was in the hospital we weren't allowed to use our cell phones or a computer, even if it was on dial-up. Anna says we were cut off from the world. I think I got a chance to use one of the hospital computers once or twice but really didn't leave Anna's room for very long once my husband left.
I think, I'm sure, I was able to give ya'll a brief update shortly after my husband left. He'd told me he got on here and posted a quick update for me. He's so busy trying to take care of Rachel and work when he's home and I'm so glad he was able to get on here for a few minutes for me.
So, you all know her tx surgery went really well. Just over 7hrs. She was out of ICU pretty quick and was ready to eat right away. Her throat however did not agree. She had her first bronch on Monday after her tx. (which was on Wed.). On Tuesday night she started having alot of pain in her chest. She says it was like wearing a really tight bra that she couldn't take off. This was the start of some unbearable days and nights. My mom and sister were still with us but by Wednesday it was back to just Anna and myself. I'll tell you guys, I truelly wasn't too sure if I was gonna make it watching Anna in the pain she was in. Mostly the nights were the worst. Of course, that's when no one is really around. I was ready to tell my husband I needed him back here right now. One more night, one more night and it will get better. One night Anna was having so much pain she felt like she couldn't breathe. The charge nurse that night made things worse. Anna says she really felt like she was not going to make it. She called her friend/roommate back home (it was about 3AM her time) so she could talk to her and hopefully she could calm her down. Amanda, that wonderful girl, it was working, until that damn charge nurse came back in and got her riled up again. Anna put the phone down and after trying to get the message across to him that his idea was not going to work he got fed up and stormed out.
Finally the pain was getting under control and I was saved by one of her two Godmothers. Anna has two sets of Godparents and one Godmother had already come and gone. Lori came after everyone had left despite having lost her father just a week and a half earlier. With Anna's pain under control and Lori here I actually was able to return to the apartment and get a "good" nights sleep three nights in a row.
All Anna's chest tubes had been removed when they noticed that she was collecting some fluid on that right lower lobe area that hadn't fully inflated. they were going to have to go in and put in a pig tail (small chest tube) but they couldn't get it in. They decided to wait for the next day's x-ray and see how it looked before taking her in to have it guided with a CT. Low and behold it was deminishing! Woohoo! So they decided to just x-ray it every day and it kept getting smaller and smaller. Then her incision started oozing! They packed it and said it didn't look like an infection that it was shallow. Since it kept oozing they decided to put a wound vac on it. Her healing is coming along nicely and it's getting shallower each time we look at it. (every 2 days)
With her pain under control, her right lobe fully inflated now and her incision looking good they let her out of the hospital on the 7th, 13 days after receiving her gift of life. We are now in the HOME apartments across the street from Stanford. They are very pleased with her progress and have yet to schedule another bronchoscopy. When she asked last week they said that everything is looking good that they see no need for one yet. She has already been moved to once a week apointments.
We still have our not so great days but the good ones are surely outnumbering them. I thank GOD each night for the good day or the half of a good day and ask for another day and to please give comfort to the family who gave Anna/us this second chance.
An amazing realization today... Anna can hold her breathe! OK, here's the little story, she decided to use some hairspray for the first time today. I told her she had better put her mask on or hold her breathe! So she held her breathe, longer than I did. (it was a short spurt of spray bending over) So later she wondered just how long she could hold it (we were in the car) and she held it for an entire block and didn't cough afterwards! Then we measured it, 4 tenths of a mile, and no coughing afterwards. She still hasn't gotten that amazing breathe of air you see on TV or hear people talk about but she says she feels a difference when she thinks about it that she breathes deeper.
We aren't sure how long we will be here but are hoping that we will be given the green light to return to Texas by Thanksgiving. That will be 4 months out. They told us back at evaluation 3-4 months. Could be less, could be more.
Lisa, what was the name of that nurse you mentioned Kari had that was so great?
It's been so long I hope she is still doing well.
I guess that about wraps it up for now. I'm sorry it's taken me so long. You guys all mean so much to me and have really helped both Anna and myself to get through the waiting. I thank you all for your support and prayers. If I ever figure out how to attach a picture to my posts ya'll can see Anna and Rachel.
I think, I'm sure, I was able to give ya'll a brief update shortly after my husband left. He'd told me he got on here and posted a quick update for me. He's so busy trying to take care of Rachel and work when he's home and I'm so glad he was able to get on here for a few minutes for me.
So, you all know her tx surgery went really well. Just over 7hrs. She was out of ICU pretty quick and was ready to eat right away. Her throat however did not agree. She had her first bronch on Monday after her tx. (which was on Wed.). On Tuesday night she started having alot of pain in her chest. She says it was like wearing a really tight bra that she couldn't take off. This was the start of some unbearable days and nights. My mom and sister were still with us but by Wednesday it was back to just Anna and myself. I'll tell you guys, I truelly wasn't too sure if I was gonna make it watching Anna in the pain she was in. Mostly the nights were the worst. Of course, that's when no one is really around. I was ready to tell my husband I needed him back here right now. One more night, one more night and it will get better. One night Anna was having so much pain she felt like she couldn't breathe. The charge nurse that night made things worse. Anna says she really felt like she was not going to make it. She called her friend/roommate back home (it was about 3AM her time) so she could talk to her and hopefully she could calm her down. Amanda, that wonderful girl, it was working, until that damn charge nurse came back in and got her riled up again. Anna put the phone down and after trying to get the message across to him that his idea was not going to work he got fed up and stormed out.
Finally the pain was getting under control and I was saved by one of her two Godmothers. Anna has two sets of Godparents and one Godmother had already come and gone. Lori came after everyone had left despite having lost her father just a week and a half earlier. With Anna's pain under control and Lori here I actually was able to return to the apartment and get a "good" nights sleep three nights in a row.
All Anna's chest tubes had been removed when they noticed that she was collecting some fluid on that right lower lobe area that hadn't fully inflated. they were going to have to go in and put in a pig tail (small chest tube) but they couldn't get it in. They decided to wait for the next day's x-ray and see how it looked before taking her in to have it guided with a CT. Low and behold it was deminishing! Woohoo! So they decided to just x-ray it every day and it kept getting smaller and smaller. Then her incision started oozing! They packed it and said it didn't look like an infection that it was shallow. Since it kept oozing they decided to put a wound vac on it. Her healing is coming along nicely and it's getting shallower each time we look at it. (every 2 days)
With her pain under control, her right lobe fully inflated now and her incision looking good they let her out of the hospital on the 7th, 13 days after receiving her gift of life. We are now in the HOME apartments across the street from Stanford. They are very pleased with her progress and have yet to schedule another bronchoscopy. When she asked last week they said that everything is looking good that they see no need for one yet. She has already been moved to once a week apointments.
We still have our not so great days but the good ones are surely outnumbering them. I thank GOD each night for the good day or the half of a good day and ask for another day and to please give comfort to the family who gave Anna/us this second chance.
An amazing realization today... Anna can hold her breathe! OK, here's the little story, she decided to use some hairspray for the first time today. I told her she had better put her mask on or hold her breathe! So she held her breathe, longer than I did. (it was a short spurt of spray bending over) So later she wondered just how long she could hold it (we were in the car) and she held it for an entire block and didn't cough afterwards! Then we measured it, 4 tenths of a mile, and no coughing afterwards. She still hasn't gotten that amazing breathe of air you see on TV or hear people talk about but she says she feels a difference when she thinks about it that she breathes deeper.
We aren't sure how long we will be here but are hoping that we will be given the green light to return to Texas by Thanksgiving. That will be 4 months out. They told us back at evaluation 3-4 months. Could be less, could be more.
Lisa, what was the name of that nurse you mentioned Kari had that was so great?
It's been so long I hope she is still doing well.
I guess that about wraps it up for now. I'm sorry it's taken me so long. You guys all mean so much to me and have really helped both Anna and myself to get through the waiting. I thank you all for your support and prayers. If I ever figure out how to attach a picture to my posts ya'll can see Anna and Rachel.