9:30 am.
Crazy morning already. At 4:00 am she started forming a clot. When I got here at around 7:45 they told me they were going to do a pump change at 10:30 am. Rosenthal came in around 8:30 to look at it and couldn't see the clot they were talking about. Dr. Yeh came in to show him and he couldn't find it. It was gone! The docs and a huge team of people talked outside her room and decided they didn't need to do a pump change. That is very unnerving! That means the large clot dislodged and went somewhere? They have been watching her mental function to see if she can control her eyes, arms, legs etc and so far so good. By now, where ever it went it should stay and dissolve. But you could clearly see the concern in Rosenthals face.
And she threw up this morning, but that isn't unusual for kids on feeding tubes.
Other than that we are having a dandy morning. She is up and in a good mood (really). My sanity is in question though.
I would love to shave my chin hair.
Wednesday, July 18, 2012
Tuesday, July 17, 2012
June 17, 3rd walk of the day
9:50 pm.
Just completed our 3rd walk of the day. She wasn't crazy about it, but Mom talked her into it. She is improving every day. The Berlin has minimal clotting, she is on blood thinner, the chest tube is not draining much, tube feedings are going ok, and the right lung is showing slight improvement. She still gets dizzy and faint on her walk and looks pale. Talking about going on a 'field trip' up to the 3rd floor and to the play room. Hopefully by Thursday we can do that.
She is still pretty cranky. Ya know, sometimes I don't blame her. We all get to leave, go about our lives, we come back, check the blog, then head out to get something to eat, do something fun or just what ever. She is stuck her 24/7 with all this 'stuff' hanging from her day in and day out for 32 days straight and counting (seems like a lot longer). I would get pretty ticked too. Having said that, I had to have a little talk with her about being nice to the nurses, therapist, and doctors. Not sure if it worked, but a Dad has to try. We are working the jokes and occasionally we can get a smile. Not giving up yet. Her nose drips from the feeding tube so we go through a lot of tissues, thus the 'tissue and boogie' joke seems to be a good one.
Garrity and Hilary have been good for her, along with the excitement Hunter and Gage bring. Sierra and Mega are still her biggest fans.
As the chin hair grows on.............
Just completed our 3rd walk of the day. She wasn't crazy about it, but Mom talked her into it. She is improving every day. The Berlin has minimal clotting, she is on blood thinner, the chest tube is not draining much, tube feedings are going ok, and the right lung is showing slight improvement. She still gets dizzy and faint on her walk and looks pale. Talking about going on a 'field trip' up to the 3rd floor and to the play room. Hopefully by Thursday we can do that.
She is still pretty cranky. Ya know, sometimes I don't blame her. We all get to leave, go about our lives, we come back, check the blog, then head out to get something to eat, do something fun or just what ever. She is stuck her 24/7 with all this 'stuff' hanging from her day in and day out for 32 days straight and counting (seems like a lot longer). I would get pretty ticked too. Having said that, I had to have a little talk with her about being nice to the nurses, therapist, and doctors. Not sure if it worked, but a Dad has to try. We are working the jokes and occasionally we can get a smile. Not giving up yet. Her nose drips from the feeding tube so we go through a lot of tissues, thus the 'tissue and boogie' joke seems to be a good one.
Garrity and Hilary have been good for her, along with the excitement Hunter and Gage bring. Sierra and Mega are still her biggest fans.
As the chin hair grows on.............
July 17, Tuesday, All back together again!
Stacy here. I stayed with Lindsey last night, it was way over due to be my turn. Jason took Gage and Megan home to the RMH and met Sierra and a VERY excited Hunter. Needless to say it took Hunter awhile to calm down last night. I think I may have gotten the better end of the deal. Lindsey slept well, she woke up at 12:20 am and was giggly and very social (her old self). I was sitting by her bedside and before she went to sleep for the night she prayed that she would be able to sleep all night. When the nurse left the room to get her some juice, Lindsey said, "Well at least I slept all night." I reminded her that "all night" would be waking up at 6 or 7 in the morning, not midnight. It was kind of funny. She was up for about an hour and then she went back to sleep. She was up again around 5:15am but went back to sleep. I headed back to the RMH after that, since we have everyone home and no milk. Not that I have had plenty of offers from people to pick that up. Sometimes it just feels good to run to the grocery store, to do an ordinary day activity like shopping for my family, just to pull you out of our hospital world and realize life is still going on.
Unfortunately, Lindsey's good mood can only be captured in the middle of the night. She woke up this morning a little ornery, but still perked up with all of her family in the room. It is great to be together! Everyone grabbed their electronics and "bonded" (ha ha ha). Lindsey went for a walk this morning and we have another walk planned for this afternoon. Each time she gets stronger and stronger. I think we are going to make a new record on our afternoon walk, maybe a full lap. That will be huge. We are very excited to have Hilary, Bethany, Garrity, and Abigail here to visit as well. Here's to a good day!
Unfortunately, Lindsey's good mood can only be captured in the middle of the night. She woke up this morning a little ornery, but still perked up with all of her family in the room. It is great to be together! Everyone grabbed their electronics and "bonded" (ha ha ha). Lindsey went for a walk this morning and we have another walk planned for this afternoon. Each time she gets stronger and stronger. I think we are going to make a new record on our afternoon walk, maybe a full lap. That will be huge. We are very excited to have Hilary, Bethany, Garrity, and Abigail here to visit as well. Here's to a good day!
Dr. Justin Yeh looking for clots in the Berlin.
Monday, July 16, 2012
July 16, The Widow's Mite
4:15 pm.
Not a lot to report. Slept well last night. Stacy didn't have to stay the night. Went on a walk this morning and went a little further than last time. They gave her a little versed to ease the anxiety. She is feeling a bit dizzy today. Not sure why. In rounds they are not going to change much. The x-ray of her right lung looked a little better. The chest tube has minimal draining. Her right side pressures seem to be okay. She is tolerating her tube feeding okay. There is another small clot forming, but not growing. Blood thinner was increased. So now we just need to get her stronger. She took a long nap and now we are getting her ready for another walk. Still fighting the dizziness though. Maybe it is the versed, but it is a really small dose.
Hillary, Garrity and the rest of the gang just passed through Winnemucca. That will be nice to be all together.
We are so impressed and overwhelmed by the love and support from our community. Novalee's efforts remind me of the 'Widow's Mite' as Jesus taught. What a good example to learn from. I am sure there are many other efforts we are not aware of . Thank you for making Eastern Oregon the best place on earth. We want to be home so bad, but for now and for a while, this is where we all need to be.
Just finished the afternoon walk. She went further than before, equivalent to about 1/2 lap. But she was more dizzy than before. She acts like she is going to pass out. Her eyes roll as she is trying to walk. I won't pretend to know why, but they are watching it.
Praying for the support and comfort of the future donor family. Pray that they will cherish these last few days, weeks or months with their child.
Till next time
Not a lot to report. Slept well last night. Stacy didn't have to stay the night. Went on a walk this morning and went a little further than last time. They gave her a little versed to ease the anxiety. She is feeling a bit dizzy today. Not sure why. In rounds they are not going to change much. The x-ray of her right lung looked a little better. The chest tube has minimal draining. Her right side pressures seem to be okay. She is tolerating her tube feeding okay. There is another small clot forming, but not growing. Blood thinner was increased. So now we just need to get her stronger. She took a long nap and now we are getting her ready for another walk. Still fighting the dizziness though. Maybe it is the versed, but it is a really small dose.
Hillary, Garrity and the rest of the gang just passed through Winnemucca. That will be nice to be all together.
We are so impressed and overwhelmed by the love and support from our community. Novalee's efforts remind me of the 'Widow's Mite' as Jesus taught. What a good example to learn from. I am sure there are many other efforts we are not aware of . Thank you for making Eastern Oregon the best place on earth. We want to be home so bad, but for now and for a while, this is where we all need to be.
Just finished the afternoon walk. She went further than before, equivalent to about 1/2 lap. But she was more dizzy than before. She acts like she is going to pass out. Her eyes roll as she is trying to walk. I won't pretend to know why, but they are watching it.
Praying for the support and comfort of the future donor family. Pray that they will cherish these last few days, weeks or months with their child.
Till next time
Sunday, July 15, 2012
July 15, 3rd Pump change
9:30 pm
The 3rd pump change went okay, not great. They had to pull hard on it and she didn't like it. They had to give extra ativan for anxiety. That clot had formed pretty fast. It started around noon and by 3:00 pm it was changed. They have slightly increased the blood thinner. They are being very cautious on the dose. A bleed would set her way back.
Not sure why, but Lindsey has not been very perky today, more pain and anxiety. Nothing really alarming has happened, but they continue to watch her. We did get her on her 2nd walk, but again we were dragging her the whole way. Stacy, Megan, and I sang 'Going on a Bear Hunt', but Lindsey wasn't buying it. We actually started singing songs to the beat of her moaning. Sounds mean, but we were just trying to lighten the mood. It is days like today that seem to drag on. They keep saying she will be able to go to the 3rd floor with minimal IV's, the Berlin, and a feeding tubes. That is our hope and prayer... one day at time.
The Allen's left this afternoon. It was sure nice to see them. We wish Lindsey could have enjoyed them more today, but she just didn't feel like it.
Stacy is going to stay with her tonight. See how it goes.
We heard that Novalee sold cupcakes for Lindsey today. What a neat friend. Thank-you Novalee!
Heard about the hale storms back home. That is crazy weather. Gage is feeling well and goofs around all the time. Excited to see Sierra and Hunter tomorrow.
The 3rd pump change went okay, not great. They had to pull hard on it and she didn't like it. They had to give extra ativan for anxiety. That clot had formed pretty fast. It started around noon and by 3:00 pm it was changed. They have slightly increased the blood thinner. They are being very cautious on the dose. A bleed would set her way back.
Not sure why, but Lindsey has not been very perky today, more pain and anxiety. Nothing really alarming has happened, but they continue to watch her. We did get her on her 2nd walk, but again we were dragging her the whole way. Stacy, Megan, and I sang 'Going on a Bear Hunt', but Lindsey wasn't buying it. We actually started singing songs to the beat of her moaning. Sounds mean, but we were just trying to lighten the mood. It is days like today that seem to drag on. They keep saying she will be able to go to the 3rd floor with minimal IV's, the Berlin, and a feeding tubes. That is our hope and prayer... one day at time.
The Allen's left this afternoon. It was sure nice to see them. We wish Lindsey could have enjoyed them more today, but she just didn't feel like it.
Stacy is going to stay with her tonight. See how it goes.
We heard that Novalee sold cupcakes for Lindsey today. What a neat friend. Thank-you Novalee!
Heard about the hale storms back home. That is crazy weather. Gage is feeling well and goofs around all the time. Excited to see Sierra and Hunter tomorrow.
July 15, Sunday afternoon
2:00 pm.
We all slept well last night. A real bed felt wonderful! Bryson and Levi volunteered to stay with Lindsey so Stacy and I and the kids could go to church. That is sure good for us to do. Helps us recharge our batteries for the week.
Lindsey has been off today. Not sure why. The surgeon (Katz) took out one of the chest tubes this morning. We are now on a first name basis with the surgeon, Dr Katsui (Katz) Meada. Ain't that just great. We ambulated (walked ) at 1:30 and it was a real pull. She was fighting, crying and complaining of pain the whole way. We didn't make it nearly as far as yesterday. The pain seems to be coming from the chest tube and Berlin sites.
Couple of hours ago a clot formed. It has grown fast enough and just like that, all 4 doctors including 'Katz' have been in (on a Sunday) and at 3:00 pm they are going to change the pump out. Learning more about these pump changes. They actually tie her hands and feet down to keep her from moving. She has to be very still and not touch the sterile field. She is pretty anxious about the procedure. They may need to sedate her a little bit.
The Allen boys, Bryson, Levi, and Logan were very disappointed that Steve Young wasn't at church today. They were hoping to see the big guy.
Sierra is feeling better and very excited to be back here with the family. I hear Hunter is doing fine.
Time to go. Team is here and ready to go to work.
We all slept well last night. A real bed felt wonderful! Bryson and Levi volunteered to stay with Lindsey so Stacy and I and the kids could go to church. That is sure good for us to do. Helps us recharge our batteries for the week.
Lindsey has been off today. Not sure why. The surgeon (Katz) took out one of the chest tubes this morning. We are now on a first name basis with the surgeon, Dr Katsui (Katz) Meada. Ain't that just great. We ambulated (walked ) at 1:30 and it was a real pull. She was fighting, crying and complaining of pain the whole way. We didn't make it nearly as far as yesterday. The pain seems to be coming from the chest tube and Berlin sites.
Couple of hours ago a clot formed. It has grown fast enough and just like that, all 4 doctors including 'Katz' have been in (on a Sunday) and at 3:00 pm they are going to change the pump out. Learning more about these pump changes. They actually tie her hands and feet down to keep her from moving. She has to be very still and not touch the sterile field. She is pretty anxious about the procedure. They may need to sedate her a little bit.
The Allen boys, Bryson, Levi, and Logan were very disappointed that Steve Young wasn't at church today. They were hoping to see the big guy.
Sierra is feeling better and very excited to be back here with the family. I hear Hunter is doing fine.
Time to go. Team is here and ready to go to work.
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