WEDNESDAY, DECEMBER 05, 2007 07:19 PM, EST
Well, Levi turned 5 months old since I wrote last!! Yea! Doesn't seem like that long. Something else to celebrate about
is that we been home for 3 weeks today! That is about the longest we been home at one time. It's been nice. We go
back to Cincinnati next Wednesday.
Sorry it has been so long since I updated, but no news is good news around here. He has been doing well. A little
fussy, but I think he's just used to someone holding him all the time. I can't get nothing done, but I love it that he's
spoiled.
I'll update if anything new comes up. Talk to you all later.
Oh, yeah, my father in law starts his chemo and radiation next Monday. Keep him in your prayers. He also has surgery
tomorrow to put in a port for the chemo and a g-tube for feeding (his mouth will be too sore to eat and they said the
radiation will burn the taste buds so food wouldn't taste right anyway). Be thinking about him. He does have good odds
of beating this. 90%
Love y'all!
Laurie
--------------------------------------------------------------------------------
THURSDAY, DECEMBER 13, 2007 05:15 PM, EST
We went to Cincinnati yesterday. We got a good report. They said his weight gain was right on target. He weighs 11
pounds 13 ounces. That was 7 ounces he had gained since last time. He felt his belly and said his liver was a little
large, but still soft. He also said his spleen was also a little big. Nothing really unexpected. He said he looked like he
was getting some meat on his bones. He noticed his double chin and said that was what they wanted to see.
He said it was great that he hasn't had an infection. He said those infections can be as damaging to the liver as the
lipids. They said increase his feeds slowly. He said if he gains weight good they may reduce the lipids and that would
help his liver too.
We go back on the 27th. Hopefully nothing out of the ordinary will happen before then. I'll try to touch base again
sometime next week. Merry Christmas guys.
All I want is to be home with ALL my family. We been home 4 weeks now. YEA!!!
Laurie
--------------------------------------------------------------------------------
FRIDAY, DECEMBER 21, 2007 03:29 PM, CST
Merry
Christmas
Everyone!!!
Just in case I don't update again before then. This has to be the best Christmas holiday ever. I know things haven't
been going our way this year, but it could be much worse. We have Levi here with us and he is doing GREAT! What
else could a mom want for Christmas. Our family is together and I am really looking forward to Christmas morning. The
faces of the boys will be priceless. Again I wish you all the best for Christmas. May all your wishes come true. I love you
all. Take care!!
--------------------------------------------------------------------------------
SUNDAY, DECEMBER 23, 2007 07:03 PM, CST
I hadn't planned on updating again this quick, but I wanted to make a prayer request. My father in law is back in the
hospital and will be in through Christmas. His incision from the g tube placement hasn't been healing well and has had
a lot of drainage coming out. They took the staples out Friday and had to pack it with gauze. Today when the dressing
got changed they saw something that looked like stool coming out. They took him to the ER. They took him to surgery
and saw that the large intestine had been punctured when they originally tried to place the g tube. So it had been
leaking inside him for about 2 weeks or so. They ended up doing a colostomy to give it time to heal. They said they
would talk about reversing it after he is finished with the chemo and radiation.
This was just supposed to be a simple procedure that has been causing some real complications. Please pray that he
gets through this ok. He is in ICU now.
Robin told him he got his wish. He had told Robin that if he could take Levi's place he would. Ever since Levi has been
home, Robin's dad has been going through a lot. He found out he had cancer the day we went to Cincinnati for the
evaluation and it has been downhill since. And Levi has miraculously done so much better. It doesn't seem fair. Please
pray for us all. Merry Christmas to all of you. Keep us in your thoughts this Christmas.
Love you all!!
Laurie and family
--------------------------------------------------------------------------------
FRIDAY, DECEMBER 28, 2007 02:22 PM, EST
Hope you all had a Merry Christmas. Ours went well. My father-in-law is still in the hospital. But I think the boys still
enjoyed themselves. I think Santa got them everything they wanted. He even found a Wii for Brandon.
Well we went to the doctor yesterday. Robin had to work so it was just me and Brandon and Levi. We went prepared. I
just KNEW that he would be admitted. They drew labs on Wednesday and the home health called Robin and told him
Levi had a critical hemoglobulin (sp?)--blood level. And a lot of his other labs were off. So I took Levi over to the After
Hours Clinic where Robin works to have them repeated because he was acting fine and didn't look like he had a low
blood level. Well it wasn't quite as low as what the home health had been, but it was still pretty low. And his white count
was elevated, but I wasn't sure if it was high for him. It was high enough to make us think infection. They called the
doctors at UK and they said they wanted the blood tested again Friday(today). I said that he had his appointment
Thursday, did they just want them to draw it again there and they said yeah, whatever Cincinnati wanted to do.
I just knew He would have to get transfused and we would end up being admitted and he had another infection. I
packed up everything for a hospital stay.
We got there and they drew more labs and surprisingly the blood level wasn't too low! And the white count must not
have been out of the ordinary for him because they didn't say anything about them being high. So, WHEW! Even if the
blood level was low, they were going to get him admitted here in Somerset to get blood so that was a load off my
shoulders.
Also I am going to start him on a fish oil that he will take orally. Dr Kocoshis said they stopped producing and weren't
doing any more trials on the fish oil lipid (which is IV). But said they were having success with the oral fish oil in a few
patients. So we are going to try that. Anything that will increase his chances and help his liver I am definitely for. I
ordered it online and it sould be here in a few days. It is expensive though. It was almost $40 for a 4 oz bottle.
Overall, it was a good report. We have to go back next Thursday. They want to check his labs again.
Thanks for all your prayers. Hope you have a Happy New Year!!!
Laurie
--------------------------------------------------------------------------------
MONDAY, DECEMBER 31, 2007 09:57 PM, EST
Levi ran a fever earlier this morning. I called the docs and they wanted us to bring him in. So we are at UK again. Great
place to spend New Year's Eve, huh? Levi has been congested for the past couple of days so we were hoping that's all
it was.
When we got here they drew blood and did a test for RSV (a respiratory virus). She said that is really common this time
of year, but when she listened to him she said she didn't think that was what it was.
Well, the results from the RSV came back POSITIVE! YEA! I know that's weird I am excited over RSV, but I will trade
enterococcus for RSV any day. RSV isn't going to cause him to lose a line, or at least I don't think so. Also the doc said
they normally have a protocol that they go with for babies with RSV like oxygen and stuff to help them breathe, but he
frankly doesn't need it. She said he is the first. I guess we caught it really early. He has only been congested for a
couple of days and just had a fever today and it wasn't that high. All the other babies that have it are probably worse
because the parents didn't take them to the doc as soon. I wouldn't have if it weren't for the fever and that's only
because of his line.
Wanna hear something ironic? We had been trying to get approvals for over a month now for an immunization called
Synagis. We just got approval. And the medicine arrived today via Fed-Ex as we were leaving to come here. Synagis is
a shot to help prone babies (premature babies, ones that their immune system is suppressed) keep from getting
RSV!!! Doesn't that just beat all you've ever seen?! Little late, huh? THey said he can still get the shot because it is still
possible he could get it again, but just not at this very minute.
Hopefully we won't have to stay long then since RSV is usually treated at home. It is a virus so antibiotics don't do
anything for it. They will probably want to make sure the cultures don't grow anything. So definitely tonight and maybe
tomorrow.
Well, Levi says "Hi, HAPPY NEW YEAR!!" He wanted to spend the last day of "awful 2007" in the hospital because 2008
is going to be GREAT!!! Talk to you all later. We love you all. Thank you all for helping us survive this outrageous year.
Laurie
Well, Levi turned 5 months old since I wrote last!! Yea! Doesn't seem like that long. Something else to celebrate about
is that we been home for 3 weeks today! That is about the longest we been home at one time. It's been nice. We go
back to Cincinnati next Wednesday.
Sorry it has been so long since I updated, but no news is good news around here. He has been doing well. A little
fussy, but I think he's just used to someone holding him all the time. I can't get nothing done, but I love it that he's
spoiled.
I'll update if anything new comes up. Talk to you all later.
Oh, yeah, my father in law starts his chemo and radiation next Monday. Keep him in your prayers. He also has surgery
tomorrow to put in a port for the chemo and a g-tube for feeding (his mouth will be too sore to eat and they said the
radiation will burn the taste buds so food wouldn't taste right anyway). Be thinking about him. He does have good odds
of beating this. 90%
Love y'all!
Laurie
--------------------------------------------------------------------------------
THURSDAY, DECEMBER 13, 2007 05:15 PM, EST
We went to Cincinnati yesterday. We got a good report. They said his weight gain was right on target. He weighs 11
pounds 13 ounces. That was 7 ounces he had gained since last time. He felt his belly and said his liver was a little
large, but still soft. He also said his spleen was also a little big. Nothing really unexpected. He said he looked like he
was getting some meat on his bones. He noticed his double chin and said that was what they wanted to see.
He said it was great that he hasn't had an infection. He said those infections can be as damaging to the liver as the
lipids. They said increase his feeds slowly. He said if he gains weight good they may reduce the lipids and that would
help his liver too.
We go back on the 27th. Hopefully nothing out of the ordinary will happen before then. I'll try to touch base again
sometime next week. Merry Christmas guys.
All I want is to be home with ALL my family. We been home 4 weeks now. YEA!!!
Laurie
--------------------------------------------------------------------------------
FRIDAY, DECEMBER 21, 2007 03:29 PM, CST
Merry
Christmas
Everyone!!!
Just in case I don't update again before then. This has to be the best Christmas holiday ever. I know things haven't
been going our way this year, but it could be much worse. We have Levi here with us and he is doing GREAT! What
else could a mom want for Christmas. Our family is together and I am really looking forward to Christmas morning. The
faces of the boys will be priceless. Again I wish you all the best for Christmas. May all your wishes come true. I love you
all. Take care!!
--------------------------------------------------------------------------------
SUNDAY, DECEMBER 23, 2007 07:03 PM, CST
I hadn't planned on updating again this quick, but I wanted to make a prayer request. My father in law is back in the
hospital and will be in through Christmas. His incision from the g tube placement hasn't been healing well and has had
a lot of drainage coming out. They took the staples out Friday and had to pack it with gauze. Today when the dressing
got changed they saw something that looked like stool coming out. They took him to the ER. They took him to surgery
and saw that the large intestine had been punctured when they originally tried to place the g tube. So it had been
leaking inside him for about 2 weeks or so. They ended up doing a colostomy to give it time to heal. They said they
would talk about reversing it after he is finished with the chemo and radiation.
This was just supposed to be a simple procedure that has been causing some real complications. Please pray that he
gets through this ok. He is in ICU now.
Robin told him he got his wish. He had told Robin that if he could take Levi's place he would. Ever since Levi has been
home, Robin's dad has been going through a lot. He found out he had cancer the day we went to Cincinnati for the
evaluation and it has been downhill since. And Levi has miraculously done so much better. It doesn't seem fair. Please
pray for us all. Merry Christmas to all of you. Keep us in your thoughts this Christmas.
Love you all!!
Laurie and family
--------------------------------------------------------------------------------
FRIDAY, DECEMBER 28, 2007 02:22 PM, EST
Hope you all had a Merry Christmas. Ours went well. My father-in-law is still in the hospital. But I think the boys still
enjoyed themselves. I think Santa got them everything they wanted. He even found a Wii for Brandon.
Well we went to the doctor yesterday. Robin had to work so it was just me and Brandon and Levi. We went prepared. I
just KNEW that he would be admitted. They drew labs on Wednesday and the home health called Robin and told him
Levi had a critical hemoglobulin (sp?)--blood level. And a lot of his other labs were off. So I took Levi over to the After
Hours Clinic where Robin works to have them repeated because he was acting fine and didn't look like he had a low
blood level. Well it wasn't quite as low as what the home health had been, but it was still pretty low. And his white count
was elevated, but I wasn't sure if it was high for him. It was high enough to make us think infection. They called the
doctors at UK and they said they wanted the blood tested again Friday(today). I said that he had his appointment
Thursday, did they just want them to draw it again there and they said yeah, whatever Cincinnati wanted to do.
I just knew He would have to get transfused and we would end up being admitted and he had another infection. I
packed up everything for a hospital stay.
We got there and they drew more labs and surprisingly the blood level wasn't too low! And the white count must not
have been out of the ordinary for him because they didn't say anything about them being high. So, WHEW! Even if the
blood level was low, they were going to get him admitted here in Somerset to get blood so that was a load off my
shoulders.
Also I am going to start him on a fish oil that he will take orally. Dr Kocoshis said they stopped producing and weren't
doing any more trials on the fish oil lipid (which is IV). But said they were having success with the oral fish oil in a few
patients. So we are going to try that. Anything that will increase his chances and help his liver I am definitely for. I
ordered it online and it sould be here in a few days. It is expensive though. It was almost $40 for a 4 oz bottle.
Overall, it was a good report. We have to go back next Thursday. They want to check his labs again.
Thanks for all your prayers. Hope you have a Happy New Year!!!
Laurie
--------------------------------------------------------------------------------
MONDAY, DECEMBER 31, 2007 09:57 PM, EST
Levi ran a fever earlier this morning. I called the docs and they wanted us to bring him in. So we are at UK again. Great
place to spend New Year's Eve, huh? Levi has been congested for the past couple of days so we were hoping that's all
it was.
When we got here they drew blood and did a test for RSV (a respiratory virus). She said that is really common this time
of year, but when she listened to him she said she didn't think that was what it was.
Well, the results from the RSV came back POSITIVE! YEA! I know that's weird I am excited over RSV, but I will trade
enterococcus for RSV any day. RSV isn't going to cause him to lose a line, or at least I don't think so. Also the doc said
they normally have a protocol that they go with for babies with RSV like oxygen and stuff to help them breathe, but he
frankly doesn't need it. She said he is the first. I guess we caught it really early. He has only been congested for a
couple of days and just had a fever today and it wasn't that high. All the other babies that have it are probably worse
because the parents didn't take them to the doc as soon. I wouldn't have if it weren't for the fever and that's only
because of his line.
Wanna hear something ironic? We had been trying to get approvals for over a month now for an immunization called
Synagis. We just got approval. And the medicine arrived today via Fed-Ex as we were leaving to come here. Synagis is
a shot to help prone babies (premature babies, ones that their immune system is suppressed) keep from getting
RSV!!! Doesn't that just beat all you've ever seen?! Little late, huh? THey said he can still get the shot because it is still
possible he could get it again, but just not at this very minute.
Hopefully we won't have to stay long then since RSV is usually treated at home. It is a virus so antibiotics don't do
anything for it. They will probably want to make sure the cultures don't grow anything. So definitely tonight and maybe
tomorrow.
Well, Levi says "Hi, HAPPY NEW YEAR!!" He wanted to spend the last day of "awful 2007" in the hospital because 2008
is going to be GREAT!!! Talk to you all later. We love you all. Thank you all for helping us survive this outrageous year.
Laurie
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