TUESDAY, JULY 31, 2007 12:45 PM, CDT
AT HOME
Levi weighed 7 lbs 1 oz when we left the hospital.
Levi hadn't pooped since the surgeries. But we were surprised when we had a poopie at 10p.m. on Tuesday.!!! I
had never before been so happy to change a poopie diaper.
It was good to be home.
We were to follow up with GI next week. Aug 6th.
Home health was coming once a week for labs and to change the broviac dressing. Starting FRIDAY Aug. 3rd.
--------------------------------------------------------------------------------
MONDAY, AUGUST 06, 2007 12:54 PM, CDT
Appointment with GI went well.(Dr. Alberty) Levi weighed 7 lbs and 9 oz.
Platelet count was a little low. Had an ultrasound of his spleen to make sure it wasn't enlarged. Everything was ok.
Also started Levi on Elecare. That is a special formula. Already digested. For babies/kids with GI problems. Said to
give him 15cc (1/2 ounce) 3 x a day. Dr. said it would be good for Levi to eat so he doesn't forget how when time
comes that he will be able to. Also he said babies that don't eat, end up having a hard time eating because they
don't enjoy it.
We made him a bottle that evening and he drank it down in no time flat. I think he really enjoyed it.
--------------------------------------------------------------------------------
WEDNESDAY, AUGUST 08, 2007 01:05 PM, CDT
Levi has been doing good with his feeds. Hed 15ml Monday, 15ml Tuesday, and tried 15ml today, but wouldn't
wake up to take it.
Later that day, I noticed Levi breathing really fast, lie he was panting. He had slept most of the day. I noticed it
around 5 or 6 in the evening. I checked his heart rate too and it was really fast. He also spit up a little of green bile.
He also would cry in pain at the slightest touch. And a low fever. We called Dr. Alberty and he said to bring him in.
They would do labs, cultures, x-rays.We were just getting used to life at home... He would cry in pain in the car on
the way to the hospital every time we hit the slightest bump.
We took him to the Outpatient area at the KY Children's Hospital. He was evaluated there. Also had Spinal tap, but
couldn't get any fluid and they decided to move him to the PICU to monitor his heart rate and breathing closer.
--------------------------------------------------------------------------------
THURSDAY, AUGUST 09, 2007 01:27 PM, EDT
Cultures were positive for bacteria. He was started on IV antibiotics. Had a blood transfusion during the night.
Heart rate and respirations still high, but lower than yesterday. Doesn't seen to be hurting as bad.
--------------------------------------------------------------------------------
FRIDAY, AUGUST 10, 2007 01:29 PM, EDT
Had abdominal ultrasound.
He was better enough to move from PICU. Got to Peds floor around noon.
Pediatrition said bug was enterococcus. Not sure what type yet. On vancomycin. Also on Flagel in case it is an
abcess in abdomen.
Ulrasound was ok. We can start feeds again. Took 15ml @ 6:30 pm.
------------------------------------------------------------------------------
SATURDAY, AUGUST 11, 2007 01:43 PM, EDT
Threw up bile 2 times during the night. The nurse called the doctor. They say to hold on feedings for now.
Had x-ray this morning.
--------------------------------------------------------------------------------
SUNDAY, AUGUST 12, 2007 01:51 PM, EDT
A.M. doctor says we can start feeds again.
Sensitivities back on cultures. Bacteria is sensitive to Ampicillin. Changing antibiotic to Ampicillin.
I asked the doctor (Dr. Flomenhoft) what would've caused the bacteria. I was worried that it was something I had
done. She assured me that this was a normal bacteria that grows in the intestines and it had just crossed into his
blood stream and made him septic. If cultures stay positive, his line will have to come out.
--------------------------------------------------------------------------------
TUESDAY, AUGUST 14, 2007 01:57 PM, EDT
Cultures still positive for bacteria. Line has to come out. I was devastated because I knew what this meant. Dr.
Pulito (surgeon that did other surgeries) would take it out this afternoon. I was all alone at the hospital. Robin had
to work.
They took him to the PICU to sedate him while they took it out. I got to stay with him until they gave him the
sedation. Dr. Bernard gave him the sedation. (He was the ICU doctor that saw Levi everyday in the PICU in the
beginning) He is a very nice and concerned man.
I had to wait in the waiting room across the hall. It was terrible. My mind started over thinking things. I didn't have
anyone to talk to to keep my mind off of it. I just cried and cried. Finally they came and got me to go back to see
him. They said he could go back to his room on the peds floor as soon as he started waking up. When I saw him I
couldn't control the tears. This was one of the bumps in the road that Dr. Pulito and Dr. Bernard had told us about.
I just wasn't prepared I guess.
I help his hand and cried. Dr. Bernard saw me crying and gave me some words of encouragement. He made me
feel a lot better.
They gave him 2 peripheral IVs. One in his hand and one in his head. TPN is really hard on those types of regular
veins, so they wanted to give him 2 while he was sedated since he is such a hard stick.
--------------------------------------------------------------------------------
MONDAY, AUGUST 20, 2007 02:22 PM, EDT
Want to make sure infection is completely gone before placing another broviac. He has went through 6 IV's waiting
on the new broviac line. He has become a pin cushion. I feel so bad for him. They tried once to place a PICC line,
but didn't have any luck.
Going to put down NG tube to feed continuous. Want to see if what little intestine he has can absorb anything.
Start at 5ml/hr. Can also take the 15ml by mouth every 4 hours. -Dr. Flomenhoft.
Broviac tomorrow.
--------------------------------------------------------------------------------
TUESDAY, AUGUST 21, 2007 02:29 PM, EDT
Dr. Iocono did the broviac surgery. Placed it in the subclavian under left shoulder. Tube comes out under left arm
in chest. (I don't know if I mentioned this before, but the first broviac was in a vein on the right side of his neck and
the tube came out in the middle of his chest)
Started his feeds back at 2ml/hr and increase each day by 1ml not to exceed 10ml hr. Can still have 1ml by mouth.
Weighed 8 lbs 3 oz today.
----------------------------------------------------------------------------
WEDNESDAY, AUGUST 22, 2007 02:34 PM, EDT
Today was a terrible day. Levi was getting his last dose of antibiotics. He was getting this through his new line. He
had to be unhooked from his TPN and lipids to get it because the ampicillin is not compatible with them. When the
Ampicillin finished infusing, his pump beeped and I pushed the nurse call bell. His nurse sent another nurse to
hook him back up to his TPN because she was busy with another patient.
The nurse hooked him up and left. A little later (probably a couple of hours) Levi started squirming around. (He
had been sleeping peacefully) I went over to check on him. I thought he just needed a diaper change. ( He hates
being wet.) i pulled back his blanket and saw that he was soaked, but to my surprise it wasn't pee. I saw that his
line was not attached to his port. It had come off. He was soaked in TPN and lipids and blood that had backed out
of his port. The nurse did not hook him up correctly.
I called the nurse. They tried hooking him back up, but it wouldn't infuse. They tried flushing it with saline, it
wouldn't flush. It had clotted. The line he had just got yesterday. They did 2 doses of TPA which didn't work.
Dr. Iocono was furious, almost as furious as me. He came to talk to me and said he would have Levi back in
surgery tomorrow morning. he said he may be able to save the vein, but it might not be possible.
--------------------------------------------------------------------------------
THURSDAY, AUGUST 23, 2007 02:56 PM, EDT
Praise God!!! Dr. Iocono was able to keep it in the same vein!!!!
Dr. said he had a small pneumothorax (collapsed lung). It would heal on it's own. They would x-ray tonight to check.
X-ray says pnuemothorax is gone. May have just been a skin fold.
--------------------------------------------------------------------------------
FRIDAY, AUGUST 24, 2007 03:04 PM, EDT
Levi was discharged today!!! Maybe we can stay at home this time.
--------------------------------------------------------------------------------
THURSDAY, AUGUST 30, 2007 03:06 PM, EDT
Saw Dr. Flomenhoft in GI clinic today for follow up. Doing good. Color looks good. Get weekly weights at home.
Children's Clinic. See us back in a month.
AT HOME
Levi weighed 7 lbs 1 oz when we left the hospital.
Levi hadn't pooped since the surgeries. But we were surprised when we had a poopie at 10p.m. on Tuesday.!!! I
had never before been so happy to change a poopie diaper.
It was good to be home.
We were to follow up with GI next week. Aug 6th.
Home health was coming once a week for labs and to change the broviac dressing. Starting FRIDAY Aug. 3rd.
--------------------------------------------------------------------------------
MONDAY, AUGUST 06, 2007 12:54 PM, CDT
Appointment with GI went well.(Dr. Alberty) Levi weighed 7 lbs and 9 oz.
Platelet count was a little low. Had an ultrasound of his spleen to make sure it wasn't enlarged. Everything was ok.
Also started Levi on Elecare. That is a special formula. Already digested. For babies/kids with GI problems. Said to
give him 15cc (1/2 ounce) 3 x a day. Dr. said it would be good for Levi to eat so he doesn't forget how when time
comes that he will be able to. Also he said babies that don't eat, end up having a hard time eating because they
don't enjoy it.
We made him a bottle that evening and he drank it down in no time flat. I think he really enjoyed it.
--------------------------------------------------------------------------------
WEDNESDAY, AUGUST 08, 2007 01:05 PM, CDT
Levi has been doing good with his feeds. Hed 15ml Monday, 15ml Tuesday, and tried 15ml today, but wouldn't
wake up to take it.
Later that day, I noticed Levi breathing really fast, lie he was panting. He had slept most of the day. I noticed it
around 5 or 6 in the evening. I checked his heart rate too and it was really fast. He also spit up a little of green bile.
He also would cry in pain at the slightest touch. And a low fever. We called Dr. Alberty and he said to bring him in.
They would do labs, cultures, x-rays.We were just getting used to life at home... He would cry in pain in the car on
the way to the hospital every time we hit the slightest bump.
We took him to the Outpatient area at the KY Children's Hospital. He was evaluated there. Also had Spinal tap, but
couldn't get any fluid and they decided to move him to the PICU to monitor his heart rate and breathing closer.
--------------------------------------------------------------------------------
THURSDAY, AUGUST 09, 2007 01:27 PM, EDT
Cultures were positive for bacteria. He was started on IV antibiotics. Had a blood transfusion during the night.
Heart rate and respirations still high, but lower than yesterday. Doesn't seen to be hurting as bad.
--------------------------------------------------------------------------------
FRIDAY, AUGUST 10, 2007 01:29 PM, EDT
Had abdominal ultrasound.
He was better enough to move from PICU. Got to Peds floor around noon.
Pediatrition said bug was enterococcus. Not sure what type yet. On vancomycin. Also on Flagel in case it is an
abcess in abdomen.
Ulrasound was ok. We can start feeds again. Took 15ml @ 6:30 pm.
------------------------------------------------------------------------------
SATURDAY, AUGUST 11, 2007 01:43 PM, EDT
Threw up bile 2 times during the night. The nurse called the doctor. They say to hold on feedings for now.
Had x-ray this morning.
--------------------------------------------------------------------------------
SUNDAY, AUGUST 12, 2007 01:51 PM, EDT
A.M. doctor says we can start feeds again.
Sensitivities back on cultures. Bacteria is sensitive to Ampicillin. Changing antibiotic to Ampicillin.
I asked the doctor (Dr. Flomenhoft) what would've caused the bacteria. I was worried that it was something I had
done. She assured me that this was a normal bacteria that grows in the intestines and it had just crossed into his
blood stream and made him septic. If cultures stay positive, his line will have to come out.
--------------------------------------------------------------------------------
TUESDAY, AUGUST 14, 2007 01:57 PM, EDT
Cultures still positive for bacteria. Line has to come out. I was devastated because I knew what this meant. Dr.
Pulito (surgeon that did other surgeries) would take it out this afternoon. I was all alone at the hospital. Robin had
to work.
They took him to the PICU to sedate him while they took it out. I got to stay with him until they gave him the
sedation. Dr. Bernard gave him the sedation. (He was the ICU doctor that saw Levi everyday in the PICU in the
beginning) He is a very nice and concerned man.
I had to wait in the waiting room across the hall. It was terrible. My mind started over thinking things. I didn't have
anyone to talk to to keep my mind off of it. I just cried and cried. Finally they came and got me to go back to see
him. They said he could go back to his room on the peds floor as soon as he started waking up. When I saw him I
couldn't control the tears. This was one of the bumps in the road that Dr. Pulito and Dr. Bernard had told us about.
I just wasn't prepared I guess.
I help his hand and cried. Dr. Bernard saw me crying and gave me some words of encouragement. He made me
feel a lot better.
They gave him 2 peripheral IVs. One in his hand and one in his head. TPN is really hard on those types of regular
veins, so they wanted to give him 2 while he was sedated since he is such a hard stick.
--------------------------------------------------------------------------------
MONDAY, AUGUST 20, 2007 02:22 PM, EDT
Want to make sure infection is completely gone before placing another broviac. He has went through 6 IV's waiting
on the new broviac line. He has become a pin cushion. I feel so bad for him. They tried once to place a PICC line,
but didn't have any luck.
Going to put down NG tube to feed continuous. Want to see if what little intestine he has can absorb anything.
Start at 5ml/hr. Can also take the 15ml by mouth every 4 hours. -Dr. Flomenhoft.
Broviac tomorrow.
--------------------------------------------------------------------------------
TUESDAY, AUGUST 21, 2007 02:29 PM, EDT
Dr. Iocono did the broviac surgery. Placed it in the subclavian under left shoulder. Tube comes out under left arm
in chest. (I don't know if I mentioned this before, but the first broviac was in a vein on the right side of his neck and
the tube came out in the middle of his chest)
Started his feeds back at 2ml/hr and increase each day by 1ml not to exceed 10ml hr. Can still have 1ml by mouth.
Weighed 8 lbs 3 oz today.
----------------------------------------------------------------------------
WEDNESDAY, AUGUST 22, 2007 02:34 PM, EDT
Today was a terrible day. Levi was getting his last dose of antibiotics. He was getting this through his new line. He
had to be unhooked from his TPN and lipids to get it because the ampicillin is not compatible with them. When the
Ampicillin finished infusing, his pump beeped and I pushed the nurse call bell. His nurse sent another nurse to
hook him back up to his TPN because she was busy with another patient.
The nurse hooked him up and left. A little later (probably a couple of hours) Levi started squirming around. (He
had been sleeping peacefully) I went over to check on him. I thought he just needed a diaper change. ( He hates
being wet.) i pulled back his blanket and saw that he was soaked, but to my surprise it wasn't pee. I saw that his
line was not attached to his port. It had come off. He was soaked in TPN and lipids and blood that had backed out
of his port. The nurse did not hook him up correctly.
I called the nurse. They tried hooking him back up, but it wouldn't infuse. They tried flushing it with saline, it
wouldn't flush. It had clotted. The line he had just got yesterday. They did 2 doses of TPA which didn't work.
Dr. Iocono was furious, almost as furious as me. He came to talk to me and said he would have Levi back in
surgery tomorrow morning. he said he may be able to save the vein, but it might not be possible.
--------------------------------------------------------------------------------
THURSDAY, AUGUST 23, 2007 02:56 PM, EDT
Praise God!!! Dr. Iocono was able to keep it in the same vein!!!!
Dr. said he had a small pneumothorax (collapsed lung). It would heal on it's own. They would x-ray tonight to check.
X-ray says pnuemothorax is gone. May have just been a skin fold.
--------------------------------------------------------------------------------
FRIDAY, AUGUST 24, 2007 03:04 PM, EDT
Levi was discharged today!!! Maybe we can stay at home this time.
--------------------------------------------------------------------------------
THURSDAY, AUGUST 30, 2007 03:06 PM, EDT
Saw Dr. Flomenhoft in GI clinic today for follow up. Doing good. Color looks good. Get weekly weights at home.
Children's Clinic. See us back in a month.
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