TUESDAY, SEPTEMBER 04, 2007 03:14 PM, EDT
Saw Dr. McBride today. (pediatrition at Children's clinic in Somerset, KY) Got his 2 month shots. And had his 2 month
check up.
We're doing well with feeds. Throws up occasionally, but nothing major. I am getting in the routine of changing out IV
meds, fixing his formula, and just becoming a good personal nurse to him.
--------------------------------------------------------------------
SUNDAY, SEPTEMBER 09, 2007 03:19 PM, EDT
When changing his clothes today, I noticed the skin under the tegaderm over his broviac sit is red and seems to have
some drainage. He acts like it is tender. We called our home health nurse and she came to look at it and said she
thought we should take him in.
They told us to take him to the ER (big mistake, I'll never make again). We got there around 9pm. We sat there forever.
Finally got took back to a room, finally a doc came in, finally a surg resident came, and finally they decided to admit him
and Dr. Iocono would be in to look at it in the morning.
Dr. Iocono looked at it and said it was a reaction to the Tegaderm. He prescribed us some cream and had us do
dressing changes 2 x a day until we were to follow up with him in 2 weeks. Thank goodness, it wasn't a line infection.
We were discharged that same day.
--------------------------------------------------------------------------------
FRIDAY, SEPTEMBER 14, 2007 03:25 PM, EDT
Home health drew labs today.
Dr. Shashidhar's nurse (another GI doctor) called in the afternoon to check on Levi. His labs had come back outta
whack.Such as it said his blood sugar was over 700. My father-in-law has a glucometer so I checked it myself an it was
only 88 (normal). There were some other things that were off. Dr. Shashidhar said that he believed it was a lab error
and wanted the labs repeated 1st thing in the morning. They wanted me to call home health and let them know.
I took Levi to After Hours (the clinic where Robin works) to get Levi weighed later that evening. He weighed 10 pounds
even!!! I noticed when I picked him up to get weighed that he was warm. I had Robin take his temp. It was 100.2 rectal.
We called Dr. Shashidhar back and he said to bring him in to the Outpatient.
His temp got to 103 under his arm while we were at the hospital..
--------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 16, 2007 03:44 PM, EDT
They admitted him and put him in a room on the peds floor. Cultures were drawn from blood, urine, etc. This is routine
to us by now.
Blood cultures grew staph. They put him on Vancomycin and Cefapine.
Threw up 3 times today. Cut off continuous feeds during the night.
Still has fever.
--------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 16, 2007 03:49 PM, EDT
Drew more labs today. Want to know if bacteria is in line or in blood too.
Can start feeds back 4-5ml/hr. Can also have 5ml of pedialyte every 4-6 hours. Levi doesn't care for the pedialyte. I
think it tastes bad to him because he slurps the elecare down.
Resident doctor noticed heart rate was fast and are going to give a bolus a fluid overnight to see if that helps. His
blood volume is also low.
--------------------------------------------------------------------------------
MONDAY, SEPTEMBER 17, 2007 03:54 PM, EDT
Going to do echo of heart to make sure everything is ok. Blood is still low. He is anemic. They are going to give him
another transfusion today.
Cultures drawn yesterday are still negative.!!!
---------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 23, 2007 03:57 PM, EDT
After blood transfusion on Monday. Color perked up. He looks and is feeling better. Dc'd Vancomycin on Tuesday.
Cultures are neg from Monday.
After last dose of Cefapine today at 2pm we can go home.
Talked to surgery on Friday. They say his blisters from the Tegaderm have healed and we can go to regular broviac
dressing changes with Tegaderm HP (a hypoallergenic Tegaderm).
We started a new medicine for his liver yesterday. Actigall. He is already taking Phenobarbitol for the same reason-- to
help his liver function. Also some new meds that we will go home with--Neutraphos and Iron supplement. And Lactinex
for his formula.
Home again!!!
--------------------------------------------------------------------------------
MONDAY, SEPTEMBER 24, 2007 04:05 PM, EDT
WOW we were home one day this time! Levi started running a fever around 3pm.
Called GI to tell them. They said to bring him back in. (Of course, this is our life)
Same routine, cultures and admitted and put on the peds floor. At this point I feel we are room hopping. We have also
aquired the name given by the nurses as "frequent fliers". Levi is well known and liked by all the nurses he has had. I
know most of them by name now without looking on the board on the wall in the room. They are all very nice to us. So
are the doctors, residents, and med. students for that matter.
Time will tell us what has brought us here this time
--------------------------------------------------------------------------------
FRIDAY, SEPTEMBER 28, 2007 04:21 PM, CDT
The cultures have grown enterococcus again. Same bacteria that caused him to lose his first line. I pray they can clear
this up with antibiotics. If not by Monday, they are going to remove the line.
The thing is, with this bacteria, I can't do anything to prevent it. It grows naturally in his body and is crossing over into
the blood stream and making him septic. I feel helpless.
Keep us in your thoughts and prayers. God Bless.
--------------------------------------------------------------------------------
SATURDAY, SEPTEMBER 29, 2007 11:24 AM, EDT
They drew more cultures today. Hopefully they will be negative. But we won't know until in the morning. I PRAY that
they will be negative! I really don't want him to lose another line.
I just wanted to thank all the great people that I've met on the malrotationvolvulus group on yahoo. You all have been
truly inspirational to me. You have given me hope when I needed it most. You know what I am going through. Many
prayers to you and your babies as well.
I will let you all know how these cultures look as soon as I find out something.
Laurie
--------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 30, 2007 10:35 AM, CDT
The peripheral line blood was negative today, but the blood drawn from the line was positive this morning. They took
the broviac out a little bit ago. I hate it, but I guess it's the best thing. They put a peripheral IV in his hand and are
going to give him D/10% instead of his TPN which really does a number on those small veins. In a couple of days, they
are going to put a PICC line in so they can give him his TPN . That will stay in for 4 or 5 days and they will take him
back to surgery for another broviac.
Also I had some bad news yesterday, yes even more. As if the line removal today wasn't bad enough. My aunt passed
away. And what is worse, my mom and aunt were the ones to find her. And what's worse, my aunt that found her
stressed so much that she is in the hospital. They said she had a stroke from where her blood pressure got so high.
Blood had leaked in her brain too. They may have to drain it with a catheter. She is pretty unresponsive. She has been
moving her left side a little, but still isn't speaking.
Please keep our family in your hearts. Talk to you all later.
Saw Dr. McBride today. (pediatrition at Children's clinic in Somerset, KY) Got his 2 month shots. And had his 2 month
check up.
We're doing well with feeds. Throws up occasionally, but nothing major. I am getting in the routine of changing out IV
meds, fixing his formula, and just becoming a good personal nurse to him.
--------------------------------------------------------------------
SUNDAY, SEPTEMBER 09, 2007 03:19 PM, EDT
When changing his clothes today, I noticed the skin under the tegaderm over his broviac sit is red and seems to have
some drainage. He acts like it is tender. We called our home health nurse and she came to look at it and said she
thought we should take him in.
They told us to take him to the ER (big mistake, I'll never make again). We got there around 9pm. We sat there forever.
Finally got took back to a room, finally a doc came in, finally a surg resident came, and finally they decided to admit him
and Dr. Iocono would be in to look at it in the morning.
Dr. Iocono looked at it and said it was a reaction to the Tegaderm. He prescribed us some cream and had us do
dressing changes 2 x a day until we were to follow up with him in 2 weeks. Thank goodness, it wasn't a line infection.
We were discharged that same day.
--------------------------------------------------------------------------------
FRIDAY, SEPTEMBER 14, 2007 03:25 PM, EDT
Home health drew labs today.
Dr. Shashidhar's nurse (another GI doctor) called in the afternoon to check on Levi. His labs had come back outta
whack.Such as it said his blood sugar was over 700. My father-in-law has a glucometer so I checked it myself an it was
only 88 (normal). There were some other things that were off. Dr. Shashidhar said that he believed it was a lab error
and wanted the labs repeated 1st thing in the morning. They wanted me to call home health and let them know.
I took Levi to After Hours (the clinic where Robin works) to get Levi weighed later that evening. He weighed 10 pounds
even!!! I noticed when I picked him up to get weighed that he was warm. I had Robin take his temp. It was 100.2 rectal.
We called Dr. Shashidhar back and he said to bring him in to the Outpatient.
His temp got to 103 under his arm while we were at the hospital..
--------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 16, 2007 03:44 PM, EDT
They admitted him and put him in a room on the peds floor. Cultures were drawn from blood, urine, etc. This is routine
to us by now.
Blood cultures grew staph. They put him on Vancomycin and Cefapine.
Threw up 3 times today. Cut off continuous feeds during the night.
Still has fever.
--------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 16, 2007 03:49 PM, EDT
Drew more labs today. Want to know if bacteria is in line or in blood too.
Can start feeds back 4-5ml/hr. Can also have 5ml of pedialyte every 4-6 hours. Levi doesn't care for the pedialyte. I
think it tastes bad to him because he slurps the elecare down.
Resident doctor noticed heart rate was fast and are going to give a bolus a fluid overnight to see if that helps. His
blood volume is also low.
--------------------------------------------------------------------------------
MONDAY, SEPTEMBER 17, 2007 03:54 PM, EDT
Going to do echo of heart to make sure everything is ok. Blood is still low. He is anemic. They are going to give him
another transfusion today.
Cultures drawn yesterday are still negative.!!!
---------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 23, 2007 03:57 PM, EDT
After blood transfusion on Monday. Color perked up. He looks and is feeling better. Dc'd Vancomycin on Tuesday.
Cultures are neg from Monday.
After last dose of Cefapine today at 2pm we can go home.
Talked to surgery on Friday. They say his blisters from the Tegaderm have healed and we can go to regular broviac
dressing changes with Tegaderm HP (a hypoallergenic Tegaderm).
We started a new medicine for his liver yesterday. Actigall. He is already taking Phenobarbitol for the same reason-- to
help his liver function. Also some new meds that we will go home with--Neutraphos and Iron supplement. And Lactinex
for his formula.
Home again!!!
--------------------------------------------------------------------------------
MONDAY, SEPTEMBER 24, 2007 04:05 PM, EDT
WOW we were home one day this time! Levi started running a fever around 3pm.
Called GI to tell them. They said to bring him back in. (Of course, this is our life)
Same routine, cultures and admitted and put on the peds floor. At this point I feel we are room hopping. We have also
aquired the name given by the nurses as "frequent fliers". Levi is well known and liked by all the nurses he has had. I
know most of them by name now without looking on the board on the wall in the room. They are all very nice to us. So
are the doctors, residents, and med. students for that matter.
Time will tell us what has brought us here this time
--------------------------------------------------------------------------------
FRIDAY, SEPTEMBER 28, 2007 04:21 PM, CDT
The cultures have grown enterococcus again. Same bacteria that caused him to lose his first line. I pray they can clear
this up with antibiotics. If not by Monday, they are going to remove the line.
The thing is, with this bacteria, I can't do anything to prevent it. It grows naturally in his body and is crossing over into
the blood stream and making him septic. I feel helpless.
Keep us in your thoughts and prayers. God Bless.
--------------------------------------------------------------------------------
SATURDAY, SEPTEMBER 29, 2007 11:24 AM, EDT
They drew more cultures today. Hopefully they will be negative. But we won't know until in the morning. I PRAY that
they will be negative! I really don't want him to lose another line.
I just wanted to thank all the great people that I've met on the malrotationvolvulus group on yahoo. You all have been
truly inspirational to me. You have given me hope when I needed it most. You know what I am going through. Many
prayers to you and your babies as well.
I will let you all know how these cultures look as soon as I find out something.
Laurie
--------------------------------------------------------------------------------
SUNDAY, SEPTEMBER 30, 2007 10:35 AM, CDT
The peripheral line blood was negative today, but the blood drawn from the line was positive this morning. They took
the broviac out a little bit ago. I hate it, but I guess it's the best thing. They put a peripheral IV in his hand and are
going to give him D/10% instead of his TPN which really does a number on those small veins. In a couple of days, they
are going to put a PICC line in so they can give him his TPN . That will stay in for 4 or 5 days and they will take him
back to surgery for another broviac.
Also I had some bad news yesterday, yes even more. As if the line removal today wasn't bad enough. My aunt passed
away. And what is worse, my mom and aunt were the ones to find her. And what's worse, my aunt that found her
stressed so much that she is in the hospital. They said she had a stroke from where her blood pressure got so high.
Blood had leaked in her brain too. They may have to drain it with a catheter. She is pretty unresponsive. She has been
moving her left side a little, but still isn't speaking.
Please keep our family in your hearts. Talk to you all later.
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