May 5th, 2009
Happy Cinco De Mayo! This is finals week for me. I just finished my Nutrition final and I have a paper due for my Women
and Gender Studies course and then my Microbiology final is Thursday. I think I am going to come out with 3 A's and a B. I
am quite proud of myself. My Nutrition final has already been submitted. I got a B on the test, but came out with an A for my
overall grade for the class! It has been an adjustment going back to school after 6 years, but I DID IT! I am taking 3 classes
this summer, but all 3 are online so I can do them anywhere, even if Levi is in the hospital. He is supposed to be admitted
the week classes start, so I took that into consideration when I registered. Hopefully, this fall I will be able to get into the pre-
nursing classes and then next spring I will actually be admitted into the nursing program and start clinicals if all goes as
planned. Then it is 2 years after that, I think. I am working on the Bachelor's degree. I had originally planned on the
Associate, but it was only the difference in a year, so I figured I'd go for the 4-year while I was at it.
--Levi is doing wonderful. Only 2 more weeks until his surgery. GERMS STAY AWAY!!!
--He has become the bully of his cousins. He pushes them and can even knock down his little petite cousin Libby that is
almost 2 years older than him with one big shove. I think he's making up for all the times he's been poked and prodded.
Unfortunately, his cousins and brothers have become the butt of that frustration. Hopefully he will out grow it. He does hug
and love on them after he makes them cry.
--Jacob is going to be graduating Kindergarten on the 18th. Hmphhh. That is the same day they will be admitting Levi. His
surgery is on the 19th, but they put him in the day before to do all the prep work. I have been trying to contact the
coordinator to make sure it won't be a problem if we go to the graduation first before we head to Cincy. We should be able
to get there by 2pm because his program should be over by 10am. Cross your fingers that everything works out because I
would be devastated if I had to miss his K graduation.
--I think that's all that's going on with the Goff's lately. I'll update again soon.
--Keep miss Delilah in your prayers. She's the little girl that just got her transplant. She's doing really well from what I can
tell from her mommy's updates. I did want to add that this amazing little girl got not only the 3 organs that Levi got, but she
got 3 more than that!! She received a small and large intestine, liver, pancreas, stomach and a spleen. WOW!! Keep them
in your prayers please.
--Everyone take care and wish me luck on my Microbiology final on Thursday. That's the one I think I am going to end up
with a B in. I'm ok with that, though b/c it is a difficult class. Wish Robin luck on his finals too, but I think he's gonna do fine.
He will have his Bachelor's degree next Spring. I am sooooo proud of him. I'll talk to y'all later. ~HUGS~
--Laurie (Levi calls me "mom-ma"...it is so cute how he says it)
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May 10th, 2009
Happy Mother's Day to all the wonderful mommies out there.I have had a wonderful day so far. At church this morning I was
the "mother with the most children present". They gave me a gift which was a beautiful angel figurine. Other mothers that
got gifts were the oldest mother, the youngest mother (who was Beth, my sister-in-law), the newest mother and the mother
with the most children present (me). It was a very nice service, THANK YOU, BRO. CHARLES!
--Robin had to work today, but promised to take me and the kids to Cracker Barrel when he gets off at 6pm. Jacob made
me a beautiful picture at school on Friday. It had a picture of him holding a bouquet of flowers and had a poem to go with it
called a "Forever Bouquet". He looks so darn cute with both his front teeth missing showing off his toothless smile. He also
brought me a styrofoam cup of dirt which he said has a seed for a flower in it. Well, see if I can get it to grow. Maybe all it
needs is love. Brandon hand made me a card last night that wished me a "Happy Mouther's Day" Yes, I spelled it the way
he did. How cute! These things make being a mother so special. Yesterday Toby gave me quite a gift. He fell off his tricycle
on the sidewalk and cracked his noggin on a concrete flowerpot. Blood was gushing everywhere. I took him to the After
Hours clinic where Robin works and the doc stitched him up with 3 stitches. He was so brave. He said he "broke his brain"
and they were going to "fix it". He cried, but not too much. I was really proud of him.
--Levi's surgery is just a little over a week away. Keep the little man in your prayers. I'll try to update again before then, but
if not before, then I will after surgery to let you know how he did. Send all you NO GERM VIBES this way! He's too close to
get sick now.
--One last thing. I want to request for prayers to be sent to Delilah Mulling again. She has been put in critical condition. She
is the little girl that just got her transplant. She was doing really well, but her respiratory condition has gotten worse in the
last day or so. She is on a very fancy ventilator and that's helping for now, but she's also running fevers that the source
has yet to be indentified, just that it is in her lungs. Keep her and her mommy in your prayers, please. Kym was hoping to
get to hold her baby on Mother's Day, but sadly, it didn't get to happen.
--Happy Mother's Day, again. I love you all. You all are such an important part of my strength and have helped me so
through so much in the past couple of years. May God Bless you all because you are truly special people. ~HUGS AND
KISSES!
--Laurie and Levi (and the rest of the Goff's)
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May 19th, 2009
We got to Cincinnati yesterday about 3pm. He was supposed to get a PICC placed, but he was NOT having that. To say
that he was not still enough is an understatement. They rescheduled it for this morning with sedation. He still had to get IV
access, so that was quite the task last night. He was stuck 3 times and they got one in his wrist. It lasted a few hours, but it
was very positional and the pump would beep almost constantly. It finally came out so he had to be poked another couple
times before they got another one in his forearm. It lasted through the night without any problems.
--He went down for the PICC this morning with sedation, but it wasn't enough to keep him totally still. They tried a couple
times without any success. Finally it was decided that they would place a central line in while he was in surgery.
--While coming off the sedation from this morning's failed PICC attempt, he got WILD! He was very mad and kept hitting me
and Robin. It was all I could do to keep him in my lap so he wouldn't run off from his IV pole. He finally gave in to sleep and
slept until they came to take him down to surgery. He was not himself at all. I've never had him so uncontrollable. I guess it
was a side effect of the sedation medicine they used.
-- He went for the surgery at about 1pm today and they finished around 3pm. The doc said everything went really well. Said
his bowel looked unremarkable! They closed him up and he has some staples. They also put a NG tube (nose to stomach)
in to keep his stomach empty. They said they will probably remove it tomorrow. They also got the central line close to his
left collar bone. Hopefully he won't have to go home with that, but if so it may save him getting stuck for labs. I just hate
fooling with the darn thing. After 24-48 hours after his bowel "wakes up", they will try to start his feeds back. They have
changed around a few of his meds for right now so his isn't taking as many orally. They changed one to IV and are holding
a couple others..He doesn't seem to be in any pain right now, but they are keeping a close eye on him and he can have
pain meds if he needs them. They gave him a caudle (something like an epidural) so he is still pretty numb right now.
--I think that's it. They say hopefully we won't be in here longer than a week, but we could use your prayers to keep that
true. I'll update again tomorrow and let you know how he's doing.
--Laurie ~HUGS AND LOVE~
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May 20th, 2009
Levi slept all evening yesterday and all night last night. He woke up a couple times during the night and was trying to
scratch his incision. He got the dressing off that covered the staples and they had to put a new dressing on. I saw the
incision while the dressing was off and it looks amazing. It should heal really nice and shouldn't leave that big of a scar. I'll
get a picture once the dressing is off to stay and put it on here. During the couple times he woke up during the night, he
was kinda fussy so I chose to let them give him some morphine. His last dose was at 5am. He's awake right now watching
Wonder Pets and doesn't seem to be in any pain at all. He looks like he's really tired. He's laid in the crib all night and all
this morning and he's being so still. Very strange for him! He's also not had anything to eat since yesterday morning so
he's probably a little weak too. He should be back to his wild self in a couple days.
--At rounds this morning they said they are going to remove his NG tube (stomach to nose). Yay! I am sure Levi will be
happy about that. Although, he has done really well with it being in. He hasn't tried to pull it out...yet. They are probably
going to start his feeds back tomorrow if he is still doing well. They discussed putting him on TPN today, but they decided
that one more day shouldn't be a problem without feeds. TPN will only add one more thing to complicate things. So cross
your fingers he is able to start feeds tomorrow and he doesn't have to go back on TPN. It will only delay things. They also
changed a lot of his meds back to orally so that is a plus. His labs looked good from this morning.
--I guess that's all for now. I'll update again later today is anything changes, but otherwise it will be after 10ish tomorrow
when they round again. Thanks for all your support and prayers. I cannot tell you all how much it means to me. It makes it a
lot easier to deal with things when I know we have so much support.
--Beth, give the boys hugs and kisses for me and tell them I love them. I'll talk to them later today.
--Well, my little munchkin has drifted back off to sleep. I'm gonna go. I've got school work to work on. My online classes
started Monday and I'm trying to adjust. Everyone take care.
--Laurie ~HUGS AND LOVE~
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May 21st, 2009
Well, we have a different little boy today, one that is more himself. He's up playing with his toys and watching TV. He started
coming around yesterday, but was still tired. He laid in bed all day and slept off and on. Once he sat up all by himself so I
held him. His tummy was still sore, though, because when I picked him up he started crying. He went most of yesterday
afternoon without any pain medicine. I had them give him some before bed because he was restless. However, I believe it
may have been because he had slept the majority of the day. He woke up about every hour or so and would say "Momma".
I'd get up and sit with him for a little while and he'd go back to sleep. I am a little bit tired, needless to say. He woke up for
good about 8am when the student nurse and instructor came in to assess him. That's when I decided to get up too. He's
been up since and got a bath. He was in desperate need of one. He still had the iodine on him from when they scrubbed
him for surgery. And his hair was all tangled and matted where he had laid on it for 2 days. He looks (and smells) much
better now.
--The first time he woke up (about 1:30am) he said "Momma" so I got up to check on him. I saw his diaper was wet and so I
started to change him and I got startled because there was something in there besides pee. HE POOPED!!! YAY! I guess
he hollered at me because he didn't know what was going on down there. lol. He's had a couple more this morning. That
was what led to the bath. He had pulled the side of his diaper loose so when he went, the poopie went all in his bed.
--The surgeon came in this morning and he wants to wait a bit longer to start feeds just to be a little cautious. He said it was
encouraging that he had pooped, but his tummy was still a tiny bit puffy. He's going to reassess him again during afternoon
rounds and then they will probably start his feeds then. They said they will start off slow and probably only clear liquids for
24 hours.
--Sooo.. He's doing wonderful. Hopefully we won't be here too much longer. I am thinking maybe Monday, but they haven't
said anything about going home yet. That is just my guesstimate.
--I've heard from several people that he looks so good for a multivisceral transplant baby. And they also say he has
changed so much since a lot of them has seen him last. The pharmacist said he looks like a little man and his cheeks are
gone now.
--I'll update again later. --Laurie ~HUGS AND LOVE~
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May 22nd, 2009
The feeds still weren't started yesterday. He's doing fine, they are just being extra cautious with him. They did allow him
some ice chips which he gobbled down pretty fast. I think he really enjoyed that. Nothing much new this morning. They still
are going slow, but they are allowing him 1 oz every shift (8 hrs). That's not much, but better than nothing. He soaked down
his 1st oz really fast. It was more of a tease than anything because he asked for more right after he finished. He'll have to
wait until 6 this evening before he's allowed more. Poor thing. I know he's starved to death. ***Well, the surgeon just came
in and he upped the amount he can have and said they'd start his formula back at half strength this evening. That's much
better. And he's allowed to drink more. I think he said 2 oz.
--He's been pooping like crazy. It's watery, but he hasn't had anything to eat except ice chips. They are really impressed at
how well he's doing. I am too. I can't wait to get him home. We miss you all.
--That's all for now. Later. --Laurie and Levi ~HUGS AND LOVE~
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May 23rd, 2009
Finally he's supposed to get some actual feeds (formula) today. It's only gonna be half strength. They said that was what
they were going to start it last night, but they ended up starting him on clear Pedialyte. He did well with it overnight and they
got his rate to about half what he's on at home. This afternoon they are supposed to start him on his formula. He's also
allowed to have the same amount by mouth, except now he can have formula or whatever he wants, not just clears. They
still don't want him having solid foods yet. I am hoping maybe tomorrow he can get back to his regular diet. It's really difficult
for me and Robin to time our meals around his naps. We don't want to eat in front of him and he won't let us leave his sight.
--That's all the changes they made today. His white count was up today from 14 to 20. But he hasn't run a fever so
hopefully it is just something small that will pass.
--He was allowed to come off the monitors yesterday which was wonderful. He was allowed to get out of the room and walk
around. He walked me to death. Back and forth, back and forth we walked down the hall. We walked for about 30 minutes
and he still wasn't satisfied. This morning Robin walked him a while and then I walked him down to the laundry and he
helped me put clothes from the washer to the dryer. He was my little helper.
--Everyone have a good weekend. --Laurie ~HUGS and LOVE~
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May 24th, 2009
Still no solid foods today, but he is allowed to have all the liquids he wants which includes popsicles, Jell-o and ice cream.
He gobbled down a popsicle, ate half of a 3.5oz cup of Jell-o, and ate a few bites of orange sherbet. He loved it. Much
better than only clear liquids.
--They started his feeds last night, at half strength. They put him on full strength this morning at rounds and after he's on it
for 12 hours and does ok, they are going to start increasing his rate. His rate is 55/ml/hr at home and he's only on 20/ml/hr
right now. So hopefully by tomorrow he will be at the full concentration and full rate of feeds and then they can start him on
solids.
--His little bottom is getting raw and he cries every time he has a poopie. I've been using Desitin, but I'm thinking he needs
something a little more powerful to stay on longer. Hopefully once he's back to his regular diet, the poopies will thicken up
and be fewer and further between.
--That's all for today. Pray we can get outta here in the next day or two. You get a little bit of cabin fever cooped up in a
place like this for too long.
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May 25th, 2009
"SOLID FOODS ARE AWESOME!!" That's what Levi said this morning. Well not really, but if he could talk better he would
have. They said he could go back to a regular diet, YAY! They also increased his feeds, but he's still not at the rate he was
on at home. They plan on increasing it to his full rate tomorrow. They also let him come off his fluids (I'm not sure if I said
he was getting IV fluids 24 hrs/day) while he is unhooked on his 8 hour window. He is free. He's napping now, of course,
when I ordered him some lunch from the cafeteria.
--It was a rough night last night. He didn't go to sleep until 11:30pm and then he woke up at 2am and didn't go back to
sleep until 5am. Then he slept until about 8:30 this morning. I am wore out. Hopefully tonight will be better.
--They also started him on an antibiotic. He has some redness around his incision site. His white count was also up a tiny
bit so they want to catch it before it could get worse. It is IV right now. They want to do it that way for a day or 2 and then
they'll transition it to oral.
--That's all for now. No news on going home yet, but hopefully not too much longer.
--Laurie
--------------------------------------------------------------------------------
May 26th, 2009
They are talking about maybe going home tomorrow. We have to get the ok from the surgeon, but GI wise, he is ready to
roll. The only reason the surgeon may want to keep him is because of the redness around his incision site. It doesn't look
any worse today and maybe a tiny bit better. His white count has dropped too, so that is a good sign. I'm just hoping that
the surgeon is ok with us going home. He may want to watch him another day or 2.
--He's at his full rate of feeds now and completely off his IV fluids. You should see him when he's unhooked. He's like a wild
man. I believe we walked a mile or two around these halls. He also got to go to the toddler playroom. He really enjoyed that.
They had a baby doll and a baby doll stroller and he was most fascinated with pushing that around the playroom the entire
time we were there. There was a little girl that was crying for her mommy and Levi kept petting her head and trying to give
her toys to make her happy. It was so sweet. He's napping now and he should sleep awhile because he's been up since
9am and it is 4pm now. He was way past due.
--The patient's mommy across the hall knocked on our door when we came back from the playroom and asked if she could
give him her son's balloon. This balloon was huge and Levi spotted it passing by earlier on our walk. Her son is 16 and she
said he thought it was too sissy and she had seen Levi pointing at it earlier and wanted to know if it was ok if she gave it to
him. I told her thanks and that Levi would love it. He hasn't seen it yet, but he'll go crazy when he wakes up and sees it. It
plays music too when you tap it. He won't know what to think.
--The nurse just said that they discontinued his antibiotics and wanted to know if I'd spoken with the surgeon. I said I hadn't.
So I don't know if this is a good sign. The antibiotics were for the incision and if they stopped it, maybe they're thinking he's
getting better. I don't know, but I'm wishful thinking.
--Later --Laurie ~HUGS AND LOVE~
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May 27th, 2009
Just a quick update. WE ARE HOME! Thanks for the prayers. We have to go back next week for a follow up with the
surgeon and the GI team. Levi is doing really well and was very glad to get out of the hospital. He played outside for about
3 hours after we got home. The boys were very happy to see us.
--Take care. --Laurie ~HUGS AND LOVE~
Happy Cinco De Mayo! This is finals week for me. I just finished my Nutrition final and I have a paper due for my Women
and Gender Studies course and then my Microbiology final is Thursday. I think I am going to come out with 3 A's and a B. I
am quite proud of myself. My Nutrition final has already been submitted. I got a B on the test, but came out with an A for my
overall grade for the class! It has been an adjustment going back to school after 6 years, but I DID IT! I am taking 3 classes
this summer, but all 3 are online so I can do them anywhere, even if Levi is in the hospital. He is supposed to be admitted
the week classes start, so I took that into consideration when I registered. Hopefully, this fall I will be able to get into the pre-
nursing classes and then next spring I will actually be admitted into the nursing program and start clinicals if all goes as
planned. Then it is 2 years after that, I think. I am working on the Bachelor's degree. I had originally planned on the
Associate, but it was only the difference in a year, so I figured I'd go for the 4-year while I was at it.
--Levi is doing wonderful. Only 2 more weeks until his surgery. GERMS STAY AWAY!!!
--He has become the bully of his cousins. He pushes them and can even knock down his little petite cousin Libby that is
almost 2 years older than him with one big shove. I think he's making up for all the times he's been poked and prodded.
Unfortunately, his cousins and brothers have become the butt of that frustration. Hopefully he will out grow it. He does hug
and love on them after he makes them cry.
--Jacob is going to be graduating Kindergarten on the 18th. Hmphhh. That is the same day they will be admitting Levi. His
surgery is on the 19th, but they put him in the day before to do all the prep work. I have been trying to contact the
coordinator to make sure it won't be a problem if we go to the graduation first before we head to Cincy. We should be able
to get there by 2pm because his program should be over by 10am. Cross your fingers that everything works out because I
would be devastated if I had to miss his K graduation.
--I think that's all that's going on with the Goff's lately. I'll update again soon.
--Keep miss Delilah in your prayers. She's the little girl that just got her transplant. She's doing really well from what I can
tell from her mommy's updates. I did want to add that this amazing little girl got not only the 3 organs that Levi got, but she
got 3 more than that!! She received a small and large intestine, liver, pancreas, stomach and a spleen. WOW!! Keep them
in your prayers please.
--Everyone take care and wish me luck on my Microbiology final on Thursday. That's the one I think I am going to end up
with a B in. I'm ok with that, though b/c it is a difficult class. Wish Robin luck on his finals too, but I think he's gonna do fine.
He will have his Bachelor's degree next Spring. I am sooooo proud of him. I'll talk to y'all later. ~HUGS~
--Laurie (Levi calls me "mom-ma"...it is so cute how he says it)
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May 10th, 2009
Happy Mother's Day to all the wonderful mommies out there.I have had a wonderful day so far. At church this morning I was
the "mother with the most children present". They gave me a gift which was a beautiful angel figurine. Other mothers that
got gifts were the oldest mother, the youngest mother (who was Beth, my sister-in-law), the newest mother and the mother
with the most children present (me). It was a very nice service, THANK YOU, BRO. CHARLES!
--Robin had to work today, but promised to take me and the kids to Cracker Barrel when he gets off at 6pm. Jacob made
me a beautiful picture at school on Friday. It had a picture of him holding a bouquet of flowers and had a poem to go with it
called a "Forever Bouquet". He looks so darn cute with both his front teeth missing showing off his toothless smile. He also
brought me a styrofoam cup of dirt which he said has a seed for a flower in it. Well, see if I can get it to grow. Maybe all it
needs is love. Brandon hand made me a card last night that wished me a "Happy Mouther's Day" Yes, I spelled it the way
he did. How cute! These things make being a mother so special. Yesterday Toby gave me quite a gift. He fell off his tricycle
on the sidewalk and cracked his noggin on a concrete flowerpot. Blood was gushing everywhere. I took him to the After
Hours clinic where Robin works and the doc stitched him up with 3 stitches. He was so brave. He said he "broke his brain"
and they were going to "fix it". He cried, but not too much. I was really proud of him.
--Levi's surgery is just a little over a week away. Keep the little man in your prayers. I'll try to update again before then, but
if not before, then I will after surgery to let you know how he did. Send all you NO GERM VIBES this way! He's too close to
get sick now.
--One last thing. I want to request for prayers to be sent to Delilah Mulling again. She has been put in critical condition. She
is the little girl that just got her transplant. She was doing really well, but her respiratory condition has gotten worse in the
last day or so. She is on a very fancy ventilator and that's helping for now, but she's also running fevers that the source
has yet to be indentified, just that it is in her lungs. Keep her and her mommy in your prayers, please. Kym was hoping to
get to hold her baby on Mother's Day, but sadly, it didn't get to happen.
--Happy Mother's Day, again. I love you all. You all are such an important part of my strength and have helped me so
through so much in the past couple of years. May God Bless you all because you are truly special people. ~HUGS AND
KISSES!
--Laurie and Levi (and the rest of the Goff's)
------------------------------------------------------------------------------
May 19th, 2009
We got to Cincinnati yesterday about 3pm. He was supposed to get a PICC placed, but he was NOT having that. To say
that he was not still enough is an understatement. They rescheduled it for this morning with sedation. He still had to get IV
access, so that was quite the task last night. He was stuck 3 times and they got one in his wrist. It lasted a few hours, but it
was very positional and the pump would beep almost constantly. It finally came out so he had to be poked another couple
times before they got another one in his forearm. It lasted through the night without any problems.
--He went down for the PICC this morning with sedation, but it wasn't enough to keep him totally still. They tried a couple
times without any success. Finally it was decided that they would place a central line in while he was in surgery.
--While coming off the sedation from this morning's failed PICC attempt, he got WILD! He was very mad and kept hitting me
and Robin. It was all I could do to keep him in my lap so he wouldn't run off from his IV pole. He finally gave in to sleep and
slept until they came to take him down to surgery. He was not himself at all. I've never had him so uncontrollable. I guess it
was a side effect of the sedation medicine they used.
-- He went for the surgery at about 1pm today and they finished around 3pm. The doc said everything went really well. Said
his bowel looked unremarkable! They closed him up and he has some staples. They also put a NG tube (nose to stomach)
in to keep his stomach empty. They said they will probably remove it tomorrow. They also got the central line close to his
left collar bone. Hopefully he won't have to go home with that, but if so it may save him getting stuck for labs. I just hate
fooling with the darn thing. After 24-48 hours after his bowel "wakes up", they will try to start his feeds back. They have
changed around a few of his meds for right now so his isn't taking as many orally. They changed one to IV and are holding
a couple others..He doesn't seem to be in any pain right now, but they are keeping a close eye on him and he can have
pain meds if he needs them. They gave him a caudle (something like an epidural) so he is still pretty numb right now.
--I think that's it. They say hopefully we won't be in here longer than a week, but we could use your prayers to keep that
true. I'll update again tomorrow and let you know how he's doing.
--Laurie ~HUGS AND LOVE~
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May 20th, 2009
Levi slept all evening yesterday and all night last night. He woke up a couple times during the night and was trying to
scratch his incision. He got the dressing off that covered the staples and they had to put a new dressing on. I saw the
incision while the dressing was off and it looks amazing. It should heal really nice and shouldn't leave that big of a scar. I'll
get a picture once the dressing is off to stay and put it on here. During the couple times he woke up during the night, he
was kinda fussy so I chose to let them give him some morphine. His last dose was at 5am. He's awake right now watching
Wonder Pets and doesn't seem to be in any pain at all. He looks like he's really tired. He's laid in the crib all night and all
this morning and he's being so still. Very strange for him! He's also not had anything to eat since yesterday morning so
he's probably a little weak too. He should be back to his wild self in a couple days.
--At rounds this morning they said they are going to remove his NG tube (stomach to nose). Yay! I am sure Levi will be
happy about that. Although, he has done really well with it being in. He hasn't tried to pull it out...yet. They are probably
going to start his feeds back tomorrow if he is still doing well. They discussed putting him on TPN today, but they decided
that one more day shouldn't be a problem without feeds. TPN will only add one more thing to complicate things. So cross
your fingers he is able to start feeds tomorrow and he doesn't have to go back on TPN. It will only delay things. They also
changed a lot of his meds back to orally so that is a plus. His labs looked good from this morning.
--I guess that's all for now. I'll update again later today is anything changes, but otherwise it will be after 10ish tomorrow
when they round again. Thanks for all your support and prayers. I cannot tell you all how much it means to me. It makes it a
lot easier to deal with things when I know we have so much support.
--Beth, give the boys hugs and kisses for me and tell them I love them. I'll talk to them later today.
--Well, my little munchkin has drifted back off to sleep. I'm gonna go. I've got school work to work on. My online classes
started Monday and I'm trying to adjust. Everyone take care.
--Laurie ~HUGS AND LOVE~
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May 21st, 2009
Well, we have a different little boy today, one that is more himself. He's up playing with his toys and watching TV. He started
coming around yesterday, but was still tired. He laid in bed all day and slept off and on. Once he sat up all by himself so I
held him. His tummy was still sore, though, because when I picked him up he started crying. He went most of yesterday
afternoon without any pain medicine. I had them give him some before bed because he was restless. However, I believe it
may have been because he had slept the majority of the day. He woke up about every hour or so and would say "Momma".
I'd get up and sit with him for a little while and he'd go back to sleep. I am a little bit tired, needless to say. He woke up for
good about 8am when the student nurse and instructor came in to assess him. That's when I decided to get up too. He's
been up since and got a bath. He was in desperate need of one. He still had the iodine on him from when they scrubbed
him for surgery. And his hair was all tangled and matted where he had laid on it for 2 days. He looks (and smells) much
better now.
--The first time he woke up (about 1:30am) he said "Momma" so I got up to check on him. I saw his diaper was wet and so I
started to change him and I got startled because there was something in there besides pee. HE POOPED!!! YAY! I guess
he hollered at me because he didn't know what was going on down there. lol. He's had a couple more this morning. That
was what led to the bath. He had pulled the side of his diaper loose so when he went, the poopie went all in his bed.
--The surgeon came in this morning and he wants to wait a bit longer to start feeds just to be a little cautious. He said it was
encouraging that he had pooped, but his tummy was still a tiny bit puffy. He's going to reassess him again during afternoon
rounds and then they will probably start his feeds then. They said they will start off slow and probably only clear liquids for
24 hours.
--Sooo.. He's doing wonderful. Hopefully we won't be here too much longer. I am thinking maybe Monday, but they haven't
said anything about going home yet. That is just my guesstimate.
--I've heard from several people that he looks so good for a multivisceral transplant baby. And they also say he has
changed so much since a lot of them has seen him last. The pharmacist said he looks like a little man and his cheeks are
gone now.
--I'll update again later. --Laurie ~HUGS AND LOVE~
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May 22nd, 2009
The feeds still weren't started yesterday. He's doing fine, they are just being extra cautious with him. They did allow him
some ice chips which he gobbled down pretty fast. I think he really enjoyed that. Nothing much new this morning. They still
are going slow, but they are allowing him 1 oz every shift (8 hrs). That's not much, but better than nothing. He soaked down
his 1st oz really fast. It was more of a tease than anything because he asked for more right after he finished. He'll have to
wait until 6 this evening before he's allowed more. Poor thing. I know he's starved to death. ***Well, the surgeon just came
in and he upped the amount he can have and said they'd start his formula back at half strength this evening. That's much
better. And he's allowed to drink more. I think he said 2 oz.
--He's been pooping like crazy. It's watery, but he hasn't had anything to eat except ice chips. They are really impressed at
how well he's doing. I am too. I can't wait to get him home. We miss you all.
--That's all for now. Later. --Laurie and Levi ~HUGS AND LOVE~
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May 23rd, 2009
Finally he's supposed to get some actual feeds (formula) today. It's only gonna be half strength. They said that was what
they were going to start it last night, but they ended up starting him on clear Pedialyte. He did well with it overnight and they
got his rate to about half what he's on at home. This afternoon they are supposed to start him on his formula. He's also
allowed to have the same amount by mouth, except now he can have formula or whatever he wants, not just clears. They
still don't want him having solid foods yet. I am hoping maybe tomorrow he can get back to his regular diet. It's really difficult
for me and Robin to time our meals around his naps. We don't want to eat in front of him and he won't let us leave his sight.
--That's all the changes they made today. His white count was up today from 14 to 20. But he hasn't run a fever so
hopefully it is just something small that will pass.
--He was allowed to come off the monitors yesterday which was wonderful. He was allowed to get out of the room and walk
around. He walked me to death. Back and forth, back and forth we walked down the hall. We walked for about 30 minutes
and he still wasn't satisfied. This morning Robin walked him a while and then I walked him down to the laundry and he
helped me put clothes from the washer to the dryer. He was my little helper.
--Everyone have a good weekend. --Laurie ~HUGS and LOVE~
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May 24th, 2009
Still no solid foods today, but he is allowed to have all the liquids he wants which includes popsicles, Jell-o and ice cream.
He gobbled down a popsicle, ate half of a 3.5oz cup of Jell-o, and ate a few bites of orange sherbet. He loved it. Much
better than only clear liquids.
--They started his feeds last night, at half strength. They put him on full strength this morning at rounds and after he's on it
for 12 hours and does ok, they are going to start increasing his rate. His rate is 55/ml/hr at home and he's only on 20/ml/hr
right now. So hopefully by tomorrow he will be at the full concentration and full rate of feeds and then they can start him on
solids.
--His little bottom is getting raw and he cries every time he has a poopie. I've been using Desitin, but I'm thinking he needs
something a little more powerful to stay on longer. Hopefully once he's back to his regular diet, the poopies will thicken up
and be fewer and further between.
--That's all for today. Pray we can get outta here in the next day or two. You get a little bit of cabin fever cooped up in a
place like this for too long.
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May 25th, 2009
"SOLID FOODS ARE AWESOME!!" That's what Levi said this morning. Well not really, but if he could talk better he would
have. They said he could go back to a regular diet, YAY! They also increased his feeds, but he's still not at the rate he was
on at home. They plan on increasing it to his full rate tomorrow. They also let him come off his fluids (I'm not sure if I said
he was getting IV fluids 24 hrs/day) while he is unhooked on his 8 hour window. He is free. He's napping now, of course,
when I ordered him some lunch from the cafeteria.
--It was a rough night last night. He didn't go to sleep until 11:30pm and then he woke up at 2am and didn't go back to
sleep until 5am. Then he slept until about 8:30 this morning. I am wore out. Hopefully tonight will be better.
--They also started him on an antibiotic. He has some redness around his incision site. His white count was also up a tiny
bit so they want to catch it before it could get worse. It is IV right now. They want to do it that way for a day or 2 and then
they'll transition it to oral.
--That's all for now. No news on going home yet, but hopefully not too much longer.
--Laurie
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May 26th, 2009
They are talking about maybe going home tomorrow. We have to get the ok from the surgeon, but GI wise, he is ready to
roll. The only reason the surgeon may want to keep him is because of the redness around his incision site. It doesn't look
any worse today and maybe a tiny bit better. His white count has dropped too, so that is a good sign. I'm just hoping that
the surgeon is ok with us going home. He may want to watch him another day or 2.
--He's at his full rate of feeds now and completely off his IV fluids. You should see him when he's unhooked. He's like a wild
man. I believe we walked a mile or two around these halls. He also got to go to the toddler playroom. He really enjoyed that.
They had a baby doll and a baby doll stroller and he was most fascinated with pushing that around the playroom the entire
time we were there. There was a little girl that was crying for her mommy and Levi kept petting her head and trying to give
her toys to make her happy. It was so sweet. He's napping now and he should sleep awhile because he's been up since
9am and it is 4pm now. He was way past due.
--The patient's mommy across the hall knocked on our door when we came back from the playroom and asked if she could
give him her son's balloon. This balloon was huge and Levi spotted it passing by earlier on our walk. Her son is 16 and she
said he thought it was too sissy and she had seen Levi pointing at it earlier and wanted to know if it was ok if she gave it to
him. I told her thanks and that Levi would love it. He hasn't seen it yet, but he'll go crazy when he wakes up and sees it. It
plays music too when you tap it. He won't know what to think.
--The nurse just said that they discontinued his antibiotics and wanted to know if I'd spoken with the surgeon. I said I hadn't.
So I don't know if this is a good sign. The antibiotics were for the incision and if they stopped it, maybe they're thinking he's
getting better. I don't know, but I'm wishful thinking.
--Later --Laurie ~HUGS AND LOVE~
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May 27th, 2009
Just a quick update. WE ARE HOME! Thanks for the prayers. We have to go back next week for a follow up with the
surgeon and the GI team. Levi is doing really well and was very glad to get out of the hospital. He played outside for about
3 hours after we got home. The boys were very happy to see us.
--Take care. --Laurie ~HUGS AND LOVE~
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