November 1st, 2008
Levi is 16 months old today!! What a way to celebrate....in the hospital. He's doing ok today, a little fussier than
normal, but I think he's getting cabin fever and so am I. He's getting less and less impressed with the toys he has to
play with. He's just dying to get down and go exploring, but we can't even go for a walk because he is in contact
isolation.
--Not much new at rounds today. They stopped his replacement fluids because his output had come down
significantly since the day before. They are going to reevaluate his I and Os later to see if they will leave them off or if
he still may need some replacements. They discussed restarting his feeds. They asked how I felt about it and I said
they may want to wait since they are stopping the fluids. So they said that they could try startting them tomorrow. I
was just afraid he'd start putting out too much again and without the replacements, he may get dehydrated again. I
figured one change at a time would probably be best. I really like that they ask my opinion about things and see how I
feel about any changes they make. It's not just one doctor making the decision either. You have the attending doctor
who has the final say, but he is influenced by the fellow (who is a doctor that can practice, they are just learning a
specialty like GI), then there is the resident that is out of med school and is completing their residency before they
can practice on their own, then there may be a med student, the nurse, the nutritionist, the pharmacist, the social
worker, sometimes the surgeon, usually our coordinator, and other residents that may not necessarily be taking care
of Levi. Yeah, that's a lot of people, so at rounds you have about 10 people standing in the hallway with you
discussing the plan for Levi for the day. BUT you get input from everybody and I think that helps with giving the best
possible care he can get. He's well taken care of.
--'til tomorrow--- Laurie
----------------------------------------------------------------------------
November 3rd, 2008
I didn't update yesterday because they didn't change much and I know most people don't check the site over the
weekend. All they did yesterday was start his feeds back at half strength and half the volume. So he was getting
20ml/hr of 15 calorie Elecare. He did really well. His output didn't really increase any from the day before when he
wasn't getting any feeds. He also drank about 10 oz of Pedialyte. He's never drank that much af ANYTHING before
EVER! I was so shocked. He just kept chugging it down. He's been drinking it out of the syringe. Hey, who cares how
he drinks it! ...As long as he's drinking it. If only I could get hom to drink that much formula when he's at home. Today
he's already drank about 9 oz and the day is only about half over.
--I missed rounds today because they got up here to scope him about the same time as they were rounding. From
what I got from the nurse, they are stopping his TPN and lipids and increasing his formua from half strength to full
strength and going up on the rate gradually. Hopefully he will be at goal rate of 40ml/hr by tomorrow. That's for 24
hours, but we can work on the window at home. I don't know if they discussed disharge or not, but if he is at goal rate,
there's nothing else that they are doing for him that I couldn't do at home. So as long as he does well with the feed
increase, I think they might let us go tomorrow. At, least that is what I am hoping.
-- They have decreased his Prograf (immunosuppressant) range from 7-12 to 3-5 so he can fight off this thing a little
better. It seems to be helping because he has improved since they dropped his dose from 0.5 mg twice a day to
0.2mg twice a day
. --All his labs look good from today. I am crossing my fingers they let us go tomorrow. Say a prayer for us. Our boys
need us at home.
Our Little Levi is getting a mean streak in him. He will toss his stuff in the floor just for me to pick it up. He's figured out
how to switch the light off (not on yet). I switch it on and he switches it off. If I'm not fast enough for him, he screams at
me. He is so spoiled rotten. lol. Talk to ya all later, --Laurie
----------------------------------------------------------------------------
November 4th, 2008
Well, it appears as though even though everything is going well with the exception of getting discharged. Of course
there is one thing we are waiting on the results of before they'll release him. He apparently had been testing positive
for the adenovirus in his blood all along, it just wasn't a significant amount. They want to do one more adenovirus
PCR (blood test). If it is not getting worse, then they are going to discharge him in the morning before rounds. If it has
gone up, then they want to treat the adenovirus. Treatment is IV meds so we would have to stay. PLEASE pray that
we can go home. Levi and I both are getting stir crazy and need to get out of here.
--If we do get out, then Dr Sam wants another scope next week sometime.
--His feeds are at goal for 24 hours so today they are working on increasing the rate and going to 20 hours a day.
--That's all. Say a prayer we can go home tomorrow early. love you all. Gotta go he's screaming at me again. I think
he's sleepy.
-----------------------------------------------------------------------------
November 7th, 2008
We made it home!! Sorry it's taken me so long to update. It's just that when you're gone a week, things like laundry
don't go on hold while your gone. So I've been catching up the last 2 days. We actually got discharged Wednesday, it
was just later than expected. The results didn't come back until later in the afternoon not early that morning like they
had said. He still tested positive for the adenovirus, but it was a less than detectable amount so they are just going to
watch it for now. It was about 9:30pm before we got home. We were told that we could go home about 3pm. They
changed his PICC dressing before we left and they had to get all the paperwork done. We got out of the hospital
about 6pm. It usually takes about 2 and a half hours to get home, but we ran into a traffic jam and it lasted about and
hour. So we made it in about 3 and a half instead of 2 and a half.
--They still want to scope him again, but Dr Sam is out of town next week so they said they could wait until the
following week. He goes on the 18th at 11:40am. He doesn't have a clinic appointment as of yet and I don't know if
we'll get scheduled before then or not. It might be after the scope. He gets labs on Monday and hopefully things will
have improved even more. Thank goodness he has a PICC now. NO MORE OWIES!!
--Thanks for all your prayers. You know it means the world to us. Take care. Don't forget to get your flu shot! --Laurie
----------------------------------------------------------------------------
November 11th, 2008
Levi's been doing fine since I last updated. He's been drinking a lot of Pedialyte. He has been since he was in the
hospital. He's drinking at least 5 ounces if not more a day. I've also been giving him at least 3-4 ounces of water
through his g tube just to make sure he doesn't get dehydrated.
--He had labs yesterday. The home health nurse came out and I had to go through all the admission papers again
because when he pulled his PICC last time they discharged us. That was all we were using them for. So it took a while
to do that. She wasn't sure how much blood to draw and which tubes she needed to use to do the labs he needed.
She called the lab to be sure and they ended up telling her that she'd need to draw about 30mls counting the 5 that
they have to waste. I couldn't believe that. 10mls was about the most that they'd ever drawn at the other lab where
they were sticking him. So she started drawing and it flowed good for a while and then it slowed and then stopped.
We couldn't get any more blood and then we couldn't get it to flush either. I ended up taking him to the ER so they
could use TPA (a medicine they leave in the line to try to dissolve the clot). They tried it and left it in for the max of 2
hrs and it still wouldn't flush. The nurse said she could try using a guide wire to run through it and then thread
another catheter over the wire. She got the wire in and then we saw new blood backing up around the wire so she
took the wire out and then tried to flush it and... it WORKED! Thank goodness!
--I talked to Robin when we got home and he said he could start drawing the labs (they would be done at the same
lab where they were sticking him before). I liked that idea really well. So the nurse called this morning to check on Levi
and I told her that Robin was going to start drawing them. So today Robin drew them (with 10 mls of blood). I haven't
heard from the coordinator today so I am assuming the labs that came back were ok. She'll usually wait until the
prograf level comes back (which will probably be tomorrow) if all the other labs look ok. I will go on the website that
has his labs here in a minute to check and see what they were.
--Love u all. --Laurie
----------------------------------------------------------------------------
November 18th, 2008
Gosh, a week has passed again since I updated last. Time flies when you're having fun... or staying busy in my case.
Labs have been going well. Robin drew them Thursday last week at the clinic where he was being stuck and I drew
them yesterday. Yes I said I drew them. Robin had school and Levi had to have them drawn to get his prograf level
before 10am so we couldn't wait for Robin to get back. So I said I'll do it. My sis in law works in the lab there so she
took the blood after I drew it from his PICC. It worked out well. I was pleased with myself. His labs have been really
good except he is still testing positive for the adenovirus. The value is still less than detectible though so hopefully he
will get rid of it soon.
--Levi and I went to Cincy today for a scope. Everything looked good. We go back in 2 weeks. We should get the
biopsy results tomorrow.
--He's taking more steps. He can take about 4-5 on his own now. Shouldn't be much longer before he starts walking.
--Levi has been drinking like crazy. It was pedialyte but yesterday he drank just the formula. He drank 360 mls (12 oz)
That is a little more than 6 hours worth of feeds. If he keeps this up until we go back to clinic I have a feeling they may
give him a lot more time off his feeds. He has drank about the same today. He's also been swallowing a little bit. I am
so proud of him. He's getting so strong and so big. This Thanksgiving will really give us a lot to be thankful for.
--Keep my father-in-law in your prayers. He has to have another skin graft surgery on his stomach Monday. He will
probably not be home for Thanksgiving and that means my mother-in-law as well. It is a hard time not to be with our
family so please pray his surgery goes well and he is able to be back with us as soon as possible.
--Later--Laurie
-----------------------------------------------------------------------------
November 24th, 2008
Everything has been going good. I haven't updated because there's not much to update. His labs have looked great
with the exception of him still being positive for adenovirus. He has a bit of a stuffy/runny nose today with a slight
cough. Hopefully it won't get any worse than that. The biopsy from last week's scope showed that the adenovirus is
still in the tissue. Dr Sam wants to scope him again next week. I don't have a date yet. The coordinator was trying to
get it set up so we would also have clinic the same day.
--He's still drinking between 9-12 ounces of formula a day. He is really going to be packing on the weight. I think they
may give him a few more hours off his feeds. That would be great. He's drinking enough for 3-5 hours to be cut out.
He has also been eating more too which will give him more calories as well. Instead of tasting and getting the flavor off
of food then spitting it out, he's starting to swallow some of it. The speech therapist came out Friday and we should
start seeing her regularly in a couple weeks. Maybe that will help him eat more too.
--He's also taking more steps. He's getting braver. He will just take off without anyone to go to now. He's figured out
that if he falls, it's no big deal. He can walk about 6-7 steps now without falling.
--Robin's dad is having another surgery today. Please keep him in your prayers. He won't be home for Thanksgiving,
but maybe it won't be too long of a stay from home this time.
--Everyone have a happy Thanksgiving and enjoy time with your families...and eat all the turkey you can stuff in your
bellies. Love you all.---Laurie
----------------------------------------------------------------------------
November 26th, 2008
Mr. Levi Shawn was up to no good again yesterday morning before we woke up. Yep, you guessed it, he pulled his
PICC out once again. I called Cincy and they are ok with it being out. His labs are going to be once a week now
instead of twice a week. His veins have had about a month to heal so hopefully he will do ok with once a week sticks. I
asked if it would be ok to wait until Wednesday next week instead of Monday so the guy that's good at sticking him will
be working. And if he ever gets over this adenovirus then labs should be less than that. They are just wanting to
watch his prograf level (immunosuppressant) since they have him on the low side so his body is able to fight off the
virus better. This week he was 2.2 which is a little lower than the range he is supposed to be in. He is supposed to be
in the 3-5 range, but they are ok with the 2.2. They are also checking to see if he is still testing positive for the virus.
This weeks result hasn't came back yet, but all have been positive until then as far as I know.
--I'm up early making our turkey. We have 2 grannies' houses to visit tomorrow so it would be too hard to make ours
tomorrow. Brandon and Robin will not be dissappointed. They love turkey... more than anyone else. I wonder if Levi
will like it. He ate some of a chicken nugget yesterday. He is starting to love food! It's great.
--Levi will have his scope next Thursday at 10 so we will have to be there at 8:30. Then he has clinic at 1:30 that
same day. Hopefully labs will go ok next week.
--Robin's dad is doing good after surgery. THey have a wound vac on over the skin graft. They are waiting a couple
days before they take it off to see if it has taken. If it lookes good they said he would only have to stay a few days.
That is great news. Just pray that it looks good. Without his tongue he can't talk very good, but he still has a voice.
Well, after the surgery he doesn't have a voice now (probably from being intubated) and that has him a little worried.
Pray for him. We love you all. Have a Happy Turkey Day!--Laurie
Levi is 16 months old today!! What a way to celebrate....in the hospital. He's doing ok today, a little fussier than
normal, but I think he's getting cabin fever and so am I. He's getting less and less impressed with the toys he has to
play with. He's just dying to get down and go exploring, but we can't even go for a walk because he is in contact
isolation.
--Not much new at rounds today. They stopped his replacement fluids because his output had come down
significantly since the day before. They are going to reevaluate his I and Os later to see if they will leave them off or if
he still may need some replacements. They discussed restarting his feeds. They asked how I felt about it and I said
they may want to wait since they are stopping the fluids. So they said that they could try startting them tomorrow. I
was just afraid he'd start putting out too much again and without the replacements, he may get dehydrated again. I
figured one change at a time would probably be best. I really like that they ask my opinion about things and see how I
feel about any changes they make. It's not just one doctor making the decision either. You have the attending doctor
who has the final say, but he is influenced by the fellow (who is a doctor that can practice, they are just learning a
specialty like GI), then there is the resident that is out of med school and is completing their residency before they
can practice on their own, then there may be a med student, the nurse, the nutritionist, the pharmacist, the social
worker, sometimes the surgeon, usually our coordinator, and other residents that may not necessarily be taking care
of Levi. Yeah, that's a lot of people, so at rounds you have about 10 people standing in the hallway with you
discussing the plan for Levi for the day. BUT you get input from everybody and I think that helps with giving the best
possible care he can get. He's well taken care of.
--'til tomorrow--- Laurie
----------------------------------------------------------------------------
November 3rd, 2008
I didn't update yesterday because they didn't change much and I know most people don't check the site over the
weekend. All they did yesterday was start his feeds back at half strength and half the volume. So he was getting
20ml/hr of 15 calorie Elecare. He did really well. His output didn't really increase any from the day before when he
wasn't getting any feeds. He also drank about 10 oz of Pedialyte. He's never drank that much af ANYTHING before
EVER! I was so shocked. He just kept chugging it down. He's been drinking it out of the syringe. Hey, who cares how
he drinks it! ...As long as he's drinking it. If only I could get hom to drink that much formula when he's at home. Today
he's already drank about 9 oz and the day is only about half over.
--I missed rounds today because they got up here to scope him about the same time as they were rounding. From
what I got from the nurse, they are stopping his TPN and lipids and increasing his formua from half strength to full
strength and going up on the rate gradually. Hopefully he will be at goal rate of 40ml/hr by tomorrow. That's for 24
hours, but we can work on the window at home. I don't know if they discussed disharge or not, but if he is at goal rate,
there's nothing else that they are doing for him that I couldn't do at home. So as long as he does well with the feed
increase, I think they might let us go tomorrow. At, least that is what I am hoping.
-- They have decreased his Prograf (immunosuppressant) range from 7-12 to 3-5 so he can fight off this thing a little
better. It seems to be helping because he has improved since they dropped his dose from 0.5 mg twice a day to
0.2mg twice a day
. --All his labs look good from today. I am crossing my fingers they let us go tomorrow. Say a prayer for us. Our boys
need us at home.
Our Little Levi is getting a mean streak in him. He will toss his stuff in the floor just for me to pick it up. He's figured out
how to switch the light off (not on yet). I switch it on and he switches it off. If I'm not fast enough for him, he screams at
me. He is so spoiled rotten. lol. Talk to ya all later, --Laurie
----------------------------------------------------------------------------
November 4th, 2008
Well, it appears as though even though everything is going well with the exception of getting discharged. Of course
there is one thing we are waiting on the results of before they'll release him. He apparently had been testing positive
for the adenovirus in his blood all along, it just wasn't a significant amount. They want to do one more adenovirus
PCR (blood test). If it is not getting worse, then they are going to discharge him in the morning before rounds. If it has
gone up, then they want to treat the adenovirus. Treatment is IV meds so we would have to stay. PLEASE pray that
we can go home. Levi and I both are getting stir crazy and need to get out of here.
--If we do get out, then Dr Sam wants another scope next week sometime.
--His feeds are at goal for 24 hours so today they are working on increasing the rate and going to 20 hours a day.
--That's all. Say a prayer we can go home tomorrow early. love you all. Gotta go he's screaming at me again. I think
he's sleepy.
-----------------------------------------------------------------------------
November 7th, 2008
We made it home!! Sorry it's taken me so long to update. It's just that when you're gone a week, things like laundry
don't go on hold while your gone. So I've been catching up the last 2 days. We actually got discharged Wednesday, it
was just later than expected. The results didn't come back until later in the afternoon not early that morning like they
had said. He still tested positive for the adenovirus, but it was a less than detectable amount so they are just going to
watch it for now. It was about 9:30pm before we got home. We were told that we could go home about 3pm. They
changed his PICC dressing before we left and they had to get all the paperwork done. We got out of the hospital
about 6pm. It usually takes about 2 and a half hours to get home, but we ran into a traffic jam and it lasted about and
hour. So we made it in about 3 and a half instead of 2 and a half.
--They still want to scope him again, but Dr Sam is out of town next week so they said they could wait until the
following week. He goes on the 18th at 11:40am. He doesn't have a clinic appointment as of yet and I don't know if
we'll get scheduled before then or not. It might be after the scope. He gets labs on Monday and hopefully things will
have improved even more. Thank goodness he has a PICC now. NO MORE OWIES!!
--Thanks for all your prayers. You know it means the world to us. Take care. Don't forget to get your flu shot! --Laurie
----------------------------------------------------------------------------
November 11th, 2008
Levi's been doing fine since I last updated. He's been drinking a lot of Pedialyte. He has been since he was in the
hospital. He's drinking at least 5 ounces if not more a day. I've also been giving him at least 3-4 ounces of water
through his g tube just to make sure he doesn't get dehydrated.
--He had labs yesterday. The home health nurse came out and I had to go through all the admission papers again
because when he pulled his PICC last time they discharged us. That was all we were using them for. So it took a while
to do that. She wasn't sure how much blood to draw and which tubes she needed to use to do the labs he needed.
She called the lab to be sure and they ended up telling her that she'd need to draw about 30mls counting the 5 that
they have to waste. I couldn't believe that. 10mls was about the most that they'd ever drawn at the other lab where
they were sticking him. So she started drawing and it flowed good for a while and then it slowed and then stopped.
We couldn't get any more blood and then we couldn't get it to flush either. I ended up taking him to the ER so they
could use TPA (a medicine they leave in the line to try to dissolve the clot). They tried it and left it in for the max of 2
hrs and it still wouldn't flush. The nurse said she could try using a guide wire to run through it and then thread
another catheter over the wire. She got the wire in and then we saw new blood backing up around the wire so she
took the wire out and then tried to flush it and... it WORKED! Thank goodness!
--I talked to Robin when we got home and he said he could start drawing the labs (they would be done at the same
lab where they were sticking him before). I liked that idea really well. So the nurse called this morning to check on Levi
and I told her that Robin was going to start drawing them. So today Robin drew them (with 10 mls of blood). I haven't
heard from the coordinator today so I am assuming the labs that came back were ok. She'll usually wait until the
prograf level comes back (which will probably be tomorrow) if all the other labs look ok. I will go on the website that
has his labs here in a minute to check and see what they were.
--Love u all. --Laurie
----------------------------------------------------------------------------
November 18th, 2008
Gosh, a week has passed again since I updated last. Time flies when you're having fun... or staying busy in my case.
Labs have been going well. Robin drew them Thursday last week at the clinic where he was being stuck and I drew
them yesterday. Yes I said I drew them. Robin had school and Levi had to have them drawn to get his prograf level
before 10am so we couldn't wait for Robin to get back. So I said I'll do it. My sis in law works in the lab there so she
took the blood after I drew it from his PICC. It worked out well. I was pleased with myself. His labs have been really
good except he is still testing positive for the adenovirus. The value is still less than detectible though so hopefully he
will get rid of it soon.
--Levi and I went to Cincy today for a scope. Everything looked good. We go back in 2 weeks. We should get the
biopsy results tomorrow.
--He's taking more steps. He can take about 4-5 on his own now. Shouldn't be much longer before he starts walking.
--Levi has been drinking like crazy. It was pedialyte but yesterday he drank just the formula. He drank 360 mls (12 oz)
That is a little more than 6 hours worth of feeds. If he keeps this up until we go back to clinic I have a feeling they may
give him a lot more time off his feeds. He has drank about the same today. He's also been swallowing a little bit. I am
so proud of him. He's getting so strong and so big. This Thanksgiving will really give us a lot to be thankful for.
--Keep my father-in-law in your prayers. He has to have another skin graft surgery on his stomach Monday. He will
probably not be home for Thanksgiving and that means my mother-in-law as well. It is a hard time not to be with our
family so please pray his surgery goes well and he is able to be back with us as soon as possible.
--Later--Laurie
-----------------------------------------------------------------------------
November 24th, 2008
Everything has been going good. I haven't updated because there's not much to update. His labs have looked great
with the exception of him still being positive for adenovirus. He has a bit of a stuffy/runny nose today with a slight
cough. Hopefully it won't get any worse than that. The biopsy from last week's scope showed that the adenovirus is
still in the tissue. Dr Sam wants to scope him again next week. I don't have a date yet. The coordinator was trying to
get it set up so we would also have clinic the same day.
--He's still drinking between 9-12 ounces of formula a day. He is really going to be packing on the weight. I think they
may give him a few more hours off his feeds. That would be great. He's drinking enough for 3-5 hours to be cut out.
He has also been eating more too which will give him more calories as well. Instead of tasting and getting the flavor off
of food then spitting it out, he's starting to swallow some of it. The speech therapist came out Friday and we should
start seeing her regularly in a couple weeks. Maybe that will help him eat more too.
--He's also taking more steps. He's getting braver. He will just take off without anyone to go to now. He's figured out
that if he falls, it's no big deal. He can walk about 6-7 steps now without falling.
--Robin's dad is having another surgery today. Please keep him in your prayers. He won't be home for Thanksgiving,
but maybe it won't be too long of a stay from home this time.
--Everyone have a happy Thanksgiving and enjoy time with your families...and eat all the turkey you can stuff in your
bellies. Love you all.---Laurie
----------------------------------------------------------------------------
November 26th, 2008
Mr. Levi Shawn was up to no good again yesterday morning before we woke up. Yep, you guessed it, he pulled his
PICC out once again. I called Cincy and they are ok with it being out. His labs are going to be once a week now
instead of twice a week. His veins have had about a month to heal so hopefully he will do ok with once a week sticks. I
asked if it would be ok to wait until Wednesday next week instead of Monday so the guy that's good at sticking him will
be working. And if he ever gets over this adenovirus then labs should be less than that. They are just wanting to
watch his prograf level (immunosuppressant) since they have him on the low side so his body is able to fight off the
virus better. This week he was 2.2 which is a little lower than the range he is supposed to be in. He is supposed to be
in the 3-5 range, but they are ok with the 2.2. They are also checking to see if he is still testing positive for the virus.
This weeks result hasn't came back yet, but all have been positive until then as far as I know.
--I'm up early making our turkey. We have 2 grannies' houses to visit tomorrow so it would be too hard to make ours
tomorrow. Brandon and Robin will not be dissappointed. They love turkey... more than anyone else. I wonder if Levi
will like it. He ate some of a chicken nugget yesterday. He is starting to love food! It's great.
--Levi will have his scope next Thursday at 10 so we will have to be there at 8:30. Then he has clinic at 1:30 that
same day. Hopefully labs will go ok next week.
--Robin's dad is doing good after surgery. THey have a wound vac on over the skin graft. They are waiting a couple
days before they take it off to see if it has taken. If it lookes good they said he would only have to stay a few days.
That is great news. Just pray that it looks good. Without his tongue he can't talk very good, but he still has a voice.
Well, after the surgery he doesn't have a voice now (probably from being intubated) and that has him a little worried.
Pray for him. We love you all. Have a Happy Turkey Day!--Laurie
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