| December |
December 1st, 2008
Levi's output has gone up again. He put out 600ml yesterday. His normal is between 150 and 200. I didn't call
until this morning because he has been acting fine otherwise and he drank 450ml of pedialyte yesterday. I
was worried he might get dehydrated so I made sure he got the extra fluid. They told me today that they
wanted to see what his labs looked like. His BUN was up and so was his white blood count. They couldn't run
all the labs because they didn't have enough blood.They got it on the 1st stick, but not enough blood came
out. We thought that there might be enough, but it turned out that it wasn't. They got some of what they
needed. They want to check his renal panel again tomorrow and want me to call and give them an update. I
have a feeling we'll end up going up there. They said they were ok with the output as long as his fluid balance
was staying about 300-400 positive. They want me to give him at least 400-450 ml of the pedialyte so he
doesn't dehydrate. If he doesn't drink it, I am supposed to give it to him through his g-tube.
--He is also dealing with the runny nose and coughing. That may explain the high white blood count, but I'm
not sure about the output.
--I don't know what might be the cause this time. There's no fever this time and he usually has vomitting when
his output goes up, but he doesn't have either this time. He is supposed to get scoped again Thursday so
maybe we'll get some answers from that...that is if we don't end up going up there before that. Keep your
fingers crossed we are able to manage this at home and we don't have to endure another hospital
visit...especially this time of year. Robin's pinning ceremony is on the 20th (for his nursing at school). I am
supposed to be the one pin him. I would really hate to miss that. And of course Christmas is just around the
corner.
--Robin's dad made it home Friday. Just wanted to say thank you for your prayers for him. I do have a prayer
request for someone else. I have never met this person, but she is going through the same recovery as Levi.
Her name is Julie Werner--she's about 27 (my age). She just recieved her transplant about a month or so
ago. The doctors are saying she can go either way right now. She has had unexplained fevers with antibiotics
taking no effect. Her lungs are also worsening. I really feel for her and her family. Please say a prayer for her
and her family. Hopefully she will make it over this hurdle and start to improve. Here is her caringbridge page
link if you would like to show your support to the family.
--Love you all. Hope my next update will be better news.---Laurie
------------------------------------------------------------------------
December 4th, 2008
Just wanted to let you guys know that we are in Cincinnati once again. Levi's ostomy output has been pretty
high since Sunday. I have been keeping him hydrated with lots and lots of pedialyte. He had an appt
scheduled today for a scope and clinic and they were just watching his renal labs everyday to make sure he
wasn't getting too dry.
--He was scoped this morning and we had our clinic appt at 1:30. Everything went ok. At clinic they said just
keep on top of replacing his output and he could come back in 2 weeks. They sent us on our way. I stopped
by the hospital pharmacy on my way out and then got a call from our coordinator. The biopsy results from the
scope this morning had come back. The doc said that it didn't look very good and that it was probably grade 2
rejection. He couldn't tell if it was just rejection or if maybe he has a virus on top of it. He hasn't had any
rejection since about the 1st month post transplant so this is new to me. I have no clue how long we'll be here.
They will do a high dose of steroids and slowly taper down. They will probably rescope in a few days to see if
it's looking better. They also did some viral studies of his stool so we'll see if he has a virus as well.
--They (and I as well) believe the rejection is from his immunosuppressant being lowered because of the virus
he was admitted with a couple weeks ago. It is a very delicate balance. Too high immunosuppressant and he
can't fight off bugs and too little and he will reject. His just got too low trying to get rid of that virus.
--Don't worry about him, he's a fighter. They know how to handle this and the steroids should take care of
business. I jusat thought a few extra prayers wouldn't hurt him any.
--He has no IV access right now because some little man decided to pull his PICC last week. So he will have to
get an IV started and they said they've got him scheduled for another PICC. They plan to start the steroids
tonight.
--He's been kinda cranky today probably from the rejection. Just keep my main man in your prayers please.
I'm gonna be missing Brandon in the Christmas parade Saturday and it is just killing me. He got chosen to be
on the character word of the month for Pulaski Co schools. I was so proud of him for being chosen for loyalty
(his teacher nominated him for being so loyal to his family during Levi's sickness). I hate that I will miss my
baby during such a memorable time. Love you guys....and thanks for your prayers ahead of time.
----Laurie and Levi
------------------------------------------------------------------------------
December 5th, 2008
Levi had a LONG night and so did I. He was up at least every hour squirming or aggravated by the nurse. His
new IV he got was in a place that doesn't do well with a lot of movement so it beeped all night long. They
finally took it out early this morning. He got a new PICC this morning about 9 so he shouldn't have to be stuck
again. Hopefully he will leave it in. It's for his own good, I just wish he was old enough to realize that. Last time
he got one I ended up crying because they had such a hard time getting it, but today I remembered to ask for
some sedation. He did excellent with it. On the way down he was getting giddy and he fell asleep before they
finished.
-- He is more dehydrated today so they are going to give him one, maybe 2 boluses of sormal saline and
check his renal panel again at 4pm.
--They started his feeds last night , but he was throwing up a couple hours later, so that is stopped for now.
They are going to just keep him on maintenence fluids x 1.5 and let him drink all the pedialyte he wants. Once
he gets better hydrated they want to increase his immunosuppressant. THey want him hydrated more before
they do that though because his kidneys are already being cranky from being dehydrated and that med is
hard on the kidneys.
--They gave him the first dose of the steroid last night. He is on what they call a 10-10-10. He will get 10 for 3
days and then it will be decreased. Either tomorrow or Sunday they want to rescope him to see if there is any
improvement.
--That's all for now. I will update again if anything changes. Don't forget to check the following entry if you only
check for updates when I send the email notice. I didn't send a notice last night because it was so late when I
updated.---Laurie
--------------------------------------------------------------------------
December 6th, 2008
He seems better today. We won't know if the rejection has improved until they scope him again. Which will be
tomorrow or Monday. They said if his ostomy output continues to trend down then they can hold it off until
Monday and that would be good news. If the output goes up then they would be more aggressive about
scoping him and doing biopsies. So less output is a good sign the steroids are doing their job.
--He is also a lot better hydrated today after 2 fluid boluses and he is really drinking the pedialyte. They are
continuing to hold his feeds for now because they want to be able to compare his output to what he is putting
out now. Adding feeds wouldn't give them a base line to go from. So maybe start the feeds back tomorrow if
the output continues to drop. All his labs are much improved from yesterday.
--Please continue to pray and I'll update when I know more.
Thanks so much
~~ Laurie~~
------------------------------------------------------------------------
December 7th, 2008
Levi is doing a lot better today. The scope is going to be tomorrow morning which is a good sign. That means
they don't suspect the rejection getting any worse. In fact they think it may be getting better according to how
his output looks. His ostomy output has went way down~~VERY good sign! All his labs are back to normal and
they have restarted his feeds. They also decreased his steroid which is also a good sign that they think it's
getting better.
--Also he is out of contact isolation. They put him in it when we first got here because he had cdiff the last time
we were here and they were just being cautious. All his cultures have came back negative so now he can go
for walks or to the playroom or even downstairs to the gift shop. Should be a lot better than being cooped up
in this room all day again.
--Happy birthday, BETH!! Hope it's a good one. (I hope it wasn't yesterday, I always get it mixed up. I can't
remember if it's the 6th or 7th) Anyway, I hope it is/was great!
--Brandon had a great time on the float in the Christmas parade yesterday. The other boys came home with a
sack full of candy from what I hear. I'm glad they had a good time, even if I had to miss it. Robin videoed it and
took pictures for me. That will have to do. :)
--Until tomorrow.--Love you guys!
-------------------------------------------------------------------------
December 8th, 2008
Levi had his scope this morning. I have yet to hear the results, but I will wait until I do before I update the
page. He got some versed again today and the procedure went much smoother than on Thursday. He had
some Thursday before his scope, but on the way to the OR where they scope him, the power flickered off and
they sent us back to our room we had just came from. By the time we actually made it back to the scope the
medicine was wearing off and he didn't like the scope too well. He used to do really well with scopes, but I
guess he's at the age now where he hates being held down and don't like being messed with. The versed
(aka happy juice) is the way to go from now on. He was so funny. He got very wobbly. During the scope he got
a little aggitated, but nothing close to what he usually does and he was very easy to calm down. He would
start dancing and shaking his head and he would start leaning to one side almost falling over. He was also
very giddy. He burped once and laughed like it was the funniest thing. You all should have seen him. It was a
hoot.
--He is doing well with his feeds and they are startinhg to increase them every 8 hours. They only started him
at 15. He was NPO (nothing to eat or drink) after midnight last night because of him taking the versed this
morning. So the feeds didn't get restarted until after rounds today. I think they are going up bu 15 or so every
8 hours to watch how his output does. So far so good.
--His labs looked good today except his potassium was too low today. Imagine that. We been fighting it being
too high and today they had to give him an infusion of potassium today because it was too low. WEIRD! Oh,
well, he should be good to go now. They redrew some labs to check it about an hour after the infusion. I
haven't heard the result yet, but it's not been that long since they drew it.
--I'll finish this update when I get the biopsy results. --Later!~~
--Finally, it is 7 o'clock and I finally get answers. They rounded later this evening than they usually do. The
biopsies showed NO SIGN of acute rejection at all!!! It looked great!! I am so relieved. So I asked when we
can go home. They want him at full feeds. So probably not tomorrow, but the next day. YAY!! I really hope that
is the case. He will be going home on steroids which is ok with me as long as we're going home.
--See you all later--Laurie Love ya!
---------------------------------------------------------------------------
December 9th, 2008
The docs said at rounds this morning that they want to monitor Levi for one more day to see how his output
does now that he is at full feeds. He doesn't have his window, but we can work up to that at home. I think he
will do fine. He has been at full feeds for about 6-7 hours already and his output looks ok to me. We should be
outta here tomorrow. I can't wait. I miss my babies and Robin.... and everyone else for that matter.
--we will be going home on the steroids and another medicine. I am not sure for how long. I'm sure they'll let
me know when we are discharged.
--That's all for today. Talk to ya later.--Laurie Thanks for your prayers. They definitely work.
--------------------------------------------------------------------------
December 10th, 2008
We made it home today just in time to pick up Brandon and Jacob from school. They were excited to see me
and Levi. Levi goes back for another scope next week and clinic also, I just don't have a day yet. The
coordinator is supposed to call and let me know the date. I think he will get labs tomorrow. He is doing great. I
hope he stays that way. He will be on the steroid taper for a few weeks.
--We are having a family dinner on Saturday that I am thankful that we will be able to go to. Everyone take
care. I'll update when I can. You all know by now that my updates are few and farther between when I am at
home chasing 4 boys. Love you all. Thanks for your prayers. --Laurie
--------------------------------------------------------------------------
December 16th, 2008
Not too much going on here in Levi Land. He's been doing good. His output has been stable. His labs have
been ok. He had another scope yesterday, but I haven't heard the results from the biopsies yet. We had to be
there at 7:45am. We left home about 5am and were home by 1:30pm. He got more "happy juice" this time. It
works wonders. Robin was able to go with me this time. It was nice to have company on the road. I slept on the
way up and Robin slept on the way back.
--We have clinic tomorrow. I am just hoping the weather is drivable. Robin is going again so I won't have to be
terrified of driving in the icy/snowy mess. We didn't get much of anything other than a little ice here. School
was closed. BUT Cincinnati I think got quite a bit of snow and ice. I just don't want to be the one driving in it.
We don't have to be there until 1:30pm so hopefully if the roads are bad it will be better by the time we are out
in it.
--Robin has his capping and pinning ceremony (nursing graduation) from school on Saturday. I am so proud
of him. I know it has been tough trying to go to school and work and plus Levi got sick after his 1st semester.
He is going to continue on with school, but he has completed the associate degree in Nursing program. (RN)
--I have totally forgotten to tell you guys that Levi is walking now. He started doing it pretty well and then he
was admitted so I had other things to update on my mind. He walks all over the place now. He looks so funny
because his legs are so short and he kinda walks side to side barely picking his feet off the ground. He has
been doing really good this past week. He still falls easy, but can walk pretty far if nothing trips him.
--Levi is also eating like a little piggy...and swallowing it too. He ate 2 chicken nuggets, french fries, some of a
pop tart, and some cereal puffs yesterday plus 15 ounces of his formula. I can't wait to tell them at clinic how
he's been eating. They will be shocked. Hopefully they will give him some more time off his feeds. That would
be really nice considering I can barely keep up with him when he's running all over the place.
--On, yeah, Levi pulled his PICC again last night. Back to getting stuck again. I knew it wouldn't take him long.
It's been about 2 weeks this time.
--That's all for now. I'll try to update when we get home from clinic tomorrow. It may be late in the evening.
Love you all. --Laurie
------------------------------------------------------------------------
December 18th, 2008
We got in late yesterday evening so I am updating today instead of last night. Levi appointment went well.
They didn't change much. His scope looked good from Monday so they decreased his steroid. They want to
scope him once a week while they are tapering him off the steroids. That will be another 3-4 weeks. Then they
said if he has 1 good scope after he is off the steroids then he won't have to have another one for a while. So
we are scheduled every Tuesday to go back for a scope for the next 4 weeks. He doesn't have to go back to
clinic for 3 weeks.
--They said he had gained weight good, but they didn't make any changes to his feeds yet. I guess they don't
want to push things with the recent rejection he had.
--He had labs this morning. THey looked pretty good. Dr Sam said if they looked good that he could go to
getting labs every other week since he doesn't have his PICC anymore. I haven't heard the official word from
the coordinator, so I am hoping they were good enough to wait 2 weeks for more.
--Later, Laurie
Levi's output has gone up again. He put out 600ml yesterday. His normal is between 150 and 200. I didn't call
until this morning because he has been acting fine otherwise and he drank 450ml of pedialyte yesterday. I
was worried he might get dehydrated so I made sure he got the extra fluid. They told me today that they
wanted to see what his labs looked like. His BUN was up and so was his white blood count. They couldn't run
all the labs because they didn't have enough blood.They got it on the 1st stick, but not enough blood came
out. We thought that there might be enough, but it turned out that it wasn't. They got some of what they
needed. They want to check his renal panel again tomorrow and want me to call and give them an update. I
have a feeling we'll end up going up there. They said they were ok with the output as long as his fluid balance
was staying about 300-400 positive. They want me to give him at least 400-450 ml of the pedialyte so he
doesn't dehydrate. If he doesn't drink it, I am supposed to give it to him through his g-tube.
--He is also dealing with the runny nose and coughing. That may explain the high white blood count, but I'm
not sure about the output.
--I don't know what might be the cause this time. There's no fever this time and he usually has vomitting when
his output goes up, but he doesn't have either this time. He is supposed to get scoped again Thursday so
maybe we'll get some answers from that...that is if we don't end up going up there before that. Keep your
fingers crossed we are able to manage this at home and we don't have to endure another hospital
visit...especially this time of year. Robin's pinning ceremony is on the 20th (for his nursing at school). I am
supposed to be the one pin him. I would really hate to miss that. And of course Christmas is just around the
corner.
--Robin's dad made it home Friday. Just wanted to say thank you for your prayers for him. I do have a prayer
request for someone else. I have never met this person, but she is going through the same recovery as Levi.
Her name is Julie Werner--she's about 27 (my age). She just recieved her transplant about a month or so
ago. The doctors are saying she can go either way right now. She has had unexplained fevers with antibiotics
taking no effect. Her lungs are also worsening. I really feel for her and her family. Please say a prayer for her
and her family. Hopefully she will make it over this hurdle and start to improve. Here is her caringbridge page
link if you would like to show your support to the family.
--Love you all. Hope my next update will be better news.---Laurie
------------------------------------------------------------------------
December 4th, 2008
Just wanted to let you guys know that we are in Cincinnati once again. Levi's ostomy output has been pretty
high since Sunday. I have been keeping him hydrated with lots and lots of pedialyte. He had an appt
scheduled today for a scope and clinic and they were just watching his renal labs everyday to make sure he
wasn't getting too dry.
--He was scoped this morning and we had our clinic appt at 1:30. Everything went ok. At clinic they said just
keep on top of replacing his output and he could come back in 2 weeks. They sent us on our way. I stopped
by the hospital pharmacy on my way out and then got a call from our coordinator. The biopsy results from the
scope this morning had come back. The doc said that it didn't look very good and that it was probably grade 2
rejection. He couldn't tell if it was just rejection or if maybe he has a virus on top of it. He hasn't had any
rejection since about the 1st month post transplant so this is new to me. I have no clue how long we'll be here.
They will do a high dose of steroids and slowly taper down. They will probably rescope in a few days to see if
it's looking better. They also did some viral studies of his stool so we'll see if he has a virus as well.
--They (and I as well) believe the rejection is from his immunosuppressant being lowered because of the virus
he was admitted with a couple weeks ago. It is a very delicate balance. Too high immunosuppressant and he
can't fight off bugs and too little and he will reject. His just got too low trying to get rid of that virus.
--Don't worry about him, he's a fighter. They know how to handle this and the steroids should take care of
business. I jusat thought a few extra prayers wouldn't hurt him any.
--He has no IV access right now because some little man decided to pull his PICC last week. So he will have to
get an IV started and they said they've got him scheduled for another PICC. They plan to start the steroids
tonight.
--He's been kinda cranky today probably from the rejection. Just keep my main man in your prayers please.
I'm gonna be missing Brandon in the Christmas parade Saturday and it is just killing me. He got chosen to be
on the character word of the month for Pulaski Co schools. I was so proud of him for being chosen for loyalty
(his teacher nominated him for being so loyal to his family during Levi's sickness). I hate that I will miss my
baby during such a memorable time. Love you guys....and thanks for your prayers ahead of time.
----Laurie and Levi
------------------------------------------------------------------------------
December 5th, 2008
Levi had a LONG night and so did I. He was up at least every hour squirming or aggravated by the nurse. His
new IV he got was in a place that doesn't do well with a lot of movement so it beeped all night long. They
finally took it out early this morning. He got a new PICC this morning about 9 so he shouldn't have to be stuck
again. Hopefully he will leave it in. It's for his own good, I just wish he was old enough to realize that. Last time
he got one I ended up crying because they had such a hard time getting it, but today I remembered to ask for
some sedation. He did excellent with it. On the way down he was getting giddy and he fell asleep before they
finished.
-- He is more dehydrated today so they are going to give him one, maybe 2 boluses of sormal saline and
check his renal panel again at 4pm.
--They started his feeds last night , but he was throwing up a couple hours later, so that is stopped for now.
They are going to just keep him on maintenence fluids x 1.5 and let him drink all the pedialyte he wants. Once
he gets better hydrated they want to increase his immunosuppressant. THey want him hydrated more before
they do that though because his kidneys are already being cranky from being dehydrated and that med is
hard on the kidneys.
--They gave him the first dose of the steroid last night. He is on what they call a 10-10-10. He will get 10 for 3
days and then it will be decreased. Either tomorrow or Sunday they want to rescope him to see if there is any
improvement.
--That's all for now. I will update again if anything changes. Don't forget to check the following entry if you only
check for updates when I send the email notice. I didn't send a notice last night because it was so late when I
updated.---Laurie
--------------------------------------------------------------------------
December 6th, 2008
He seems better today. We won't know if the rejection has improved until they scope him again. Which will be
tomorrow or Monday. They said if his ostomy output continues to trend down then they can hold it off until
Monday and that would be good news. If the output goes up then they would be more aggressive about
scoping him and doing biopsies. So less output is a good sign the steroids are doing their job.
--He is also a lot better hydrated today after 2 fluid boluses and he is really drinking the pedialyte. They are
continuing to hold his feeds for now because they want to be able to compare his output to what he is putting
out now. Adding feeds wouldn't give them a base line to go from. So maybe start the feeds back tomorrow if
the output continues to drop. All his labs are much improved from yesterday.
--Please continue to pray and I'll update when I know more.
Thanks so much
~~ Laurie~~
------------------------------------------------------------------------
December 7th, 2008
Levi is doing a lot better today. The scope is going to be tomorrow morning which is a good sign. That means
they don't suspect the rejection getting any worse. In fact they think it may be getting better according to how
his output looks. His ostomy output has went way down~~VERY good sign! All his labs are back to normal and
they have restarted his feeds. They also decreased his steroid which is also a good sign that they think it's
getting better.
--Also he is out of contact isolation. They put him in it when we first got here because he had cdiff the last time
we were here and they were just being cautious. All his cultures have came back negative so now he can go
for walks or to the playroom or even downstairs to the gift shop. Should be a lot better than being cooped up
in this room all day again.
--Happy birthday, BETH!! Hope it's a good one. (I hope it wasn't yesterday, I always get it mixed up. I can't
remember if it's the 6th or 7th) Anyway, I hope it is/was great!
--Brandon had a great time on the float in the Christmas parade yesterday. The other boys came home with a
sack full of candy from what I hear. I'm glad they had a good time, even if I had to miss it. Robin videoed it and
took pictures for me. That will have to do. :)
--Until tomorrow.--Love you guys!
-------------------------------------------------------------------------
December 8th, 2008
Levi had his scope this morning. I have yet to hear the results, but I will wait until I do before I update the
page. He got some versed again today and the procedure went much smoother than on Thursday. He had
some Thursday before his scope, but on the way to the OR where they scope him, the power flickered off and
they sent us back to our room we had just came from. By the time we actually made it back to the scope the
medicine was wearing off and he didn't like the scope too well. He used to do really well with scopes, but I
guess he's at the age now where he hates being held down and don't like being messed with. The versed
(aka happy juice) is the way to go from now on. He was so funny. He got very wobbly. During the scope he got
a little aggitated, but nothing close to what he usually does and he was very easy to calm down. He would
start dancing and shaking his head and he would start leaning to one side almost falling over. He was also
very giddy. He burped once and laughed like it was the funniest thing. You all should have seen him. It was a
hoot.
--He is doing well with his feeds and they are startinhg to increase them every 8 hours. They only started him
at 15. He was NPO (nothing to eat or drink) after midnight last night because of him taking the versed this
morning. So the feeds didn't get restarted until after rounds today. I think they are going up bu 15 or so every
8 hours to watch how his output does. So far so good.
--His labs looked good today except his potassium was too low today. Imagine that. We been fighting it being
too high and today they had to give him an infusion of potassium today because it was too low. WEIRD! Oh,
well, he should be good to go now. They redrew some labs to check it about an hour after the infusion. I
haven't heard the result yet, but it's not been that long since they drew it.
--I'll finish this update when I get the biopsy results. --Later!~~
--Finally, it is 7 o'clock and I finally get answers. They rounded later this evening than they usually do. The
biopsies showed NO SIGN of acute rejection at all!!! It looked great!! I am so relieved. So I asked when we
can go home. They want him at full feeds. So probably not tomorrow, but the next day. YAY!! I really hope that
is the case. He will be going home on steroids which is ok with me as long as we're going home.
--See you all later--Laurie Love ya!
---------------------------------------------------------------------------
December 9th, 2008
The docs said at rounds this morning that they want to monitor Levi for one more day to see how his output
does now that he is at full feeds. He doesn't have his window, but we can work up to that at home. I think he
will do fine. He has been at full feeds for about 6-7 hours already and his output looks ok to me. We should be
outta here tomorrow. I can't wait. I miss my babies and Robin.... and everyone else for that matter.
--we will be going home on the steroids and another medicine. I am not sure for how long. I'm sure they'll let
me know when we are discharged.
--That's all for today. Talk to ya later.--Laurie Thanks for your prayers. They definitely work.
--------------------------------------------------------------------------
December 10th, 2008
We made it home today just in time to pick up Brandon and Jacob from school. They were excited to see me
and Levi. Levi goes back for another scope next week and clinic also, I just don't have a day yet. The
coordinator is supposed to call and let me know the date. I think he will get labs tomorrow. He is doing great. I
hope he stays that way. He will be on the steroid taper for a few weeks.
--We are having a family dinner on Saturday that I am thankful that we will be able to go to. Everyone take
care. I'll update when I can. You all know by now that my updates are few and farther between when I am at
home chasing 4 boys. Love you all. Thanks for your prayers. --Laurie
--------------------------------------------------------------------------
December 16th, 2008
Not too much going on here in Levi Land. He's been doing good. His output has been stable. His labs have
been ok. He had another scope yesterday, but I haven't heard the results from the biopsies yet. We had to be
there at 7:45am. We left home about 5am and were home by 1:30pm. He got more "happy juice" this time. It
works wonders. Robin was able to go with me this time. It was nice to have company on the road. I slept on the
way up and Robin slept on the way back.
--We have clinic tomorrow. I am just hoping the weather is drivable. Robin is going again so I won't have to be
terrified of driving in the icy/snowy mess. We didn't get much of anything other than a little ice here. School
was closed. BUT Cincinnati I think got quite a bit of snow and ice. I just don't want to be the one driving in it.
We don't have to be there until 1:30pm so hopefully if the roads are bad it will be better by the time we are out
in it.
--Robin has his capping and pinning ceremony (nursing graduation) from school on Saturday. I am so proud
of him. I know it has been tough trying to go to school and work and plus Levi got sick after his 1st semester.
He is going to continue on with school, but he has completed the associate degree in Nursing program. (RN)
--I have totally forgotten to tell you guys that Levi is walking now. He started doing it pretty well and then he
was admitted so I had other things to update on my mind. He walks all over the place now. He looks so funny
because his legs are so short and he kinda walks side to side barely picking his feet off the ground. He has
been doing really good this past week. He still falls easy, but can walk pretty far if nothing trips him.
--Levi is also eating like a little piggy...and swallowing it too. He ate 2 chicken nuggets, french fries, some of a
pop tart, and some cereal puffs yesterday plus 15 ounces of his formula. I can't wait to tell them at clinic how
he's been eating. They will be shocked. Hopefully they will give him some more time off his feeds. That would
be really nice considering I can barely keep up with him when he's running all over the place.
--On, yeah, Levi pulled his PICC again last night. Back to getting stuck again. I knew it wouldn't take him long.
It's been about 2 weeks this time.
--That's all for now. I'll try to update when we get home from clinic tomorrow. It may be late in the evening.
Love you all. --Laurie
------------------------------------------------------------------------
December 18th, 2008
We got in late yesterday evening so I am updating today instead of last night. Levi appointment went well.
They didn't change much. His scope looked good from Monday so they decreased his steroid. They want to
scope him once a week while they are tapering him off the steroids. That will be another 3-4 weeks. Then they
said if he has 1 good scope after he is off the steroids then he won't have to have another one for a while. So
we are scheduled every Tuesday to go back for a scope for the next 4 weeks. He doesn't have to go back to
clinic for 3 weeks.
--They said he had gained weight good, but they didn't make any changes to his feeds yet. I guess they don't
want to push things with the recent rejection he had.
--He had labs this morning. THey looked pretty good. Dr Sam said if they looked good that he could go to
getting labs every other week since he doesn't have his PICC anymore. I haven't heard the official word from
the coordinator, so I am hoping they were good enough to wait 2 weeks for more.
--Later, Laurie
 | |  | |  | |  | |  |