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Friday, February 10th 2006

10:09 PM

Due to trouble with the hospital isp, Sean's site has been moved to  http://www.carepages.com/ServeCarePage?cpn=SeanCampbell
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Saturday, February 4th 2006

8:30 AM

The transplant was last night. The girls were able to come visit.

He's been very nausous the past 3 days. They now have him on 4 nausea meds. The 4th one had a strange side-effect....he gets "kissy" The 2nd dose, I didn't even know they had given him some until he started attacking me with kisses and I asked the nurse if they had given him more. hehe

He's a bit fussy this morning. He had been very happy up until now. They told me he may be crabby for a few days.

Email still isn't working in my room, but i was able to come down to the library for a few minutes.



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Tuesday, January 31st 2006

10:19 AM

Sean completed his last dose of chemo about an hour ago.  Other than a few episodes of vomiting, he sailed right through the treatments.

He will now have 2 days of 'rest', then the transplant will be on Friday!!!!!

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Tuesday, January 31st 2006

10:07 AM

testing, having trouble with the hospital isp

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Tuesday, January 24th 2006

3:41 PM

Sean started the Campath treatments Jan 12-15.  On the 15, just 1 hour before the treatment ended, he CODED.  They believe that he aspirated, that he was going to spit up, but he choked and it went down instead of up.  He was in the ICU for 3 days.  He recovered quickly and we were able to come home on Thursday. 
Tonight, he will be admitted into the bone marrow transplant unit.  He will be given platelets to prepare to have a new central line put in tomorrow.  Thursday, he will begin 5 days of chemo treatments.  The official transplant day is still Feb. 3.
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Friday, January 6th 2006

11:45 PM

On Tuesday, I took Sean in because his nose had been running and the skin around the entrance site of the central line was red and a little oozy.  They did a culture on the site and in his nose.  The nose swab started a nose bleed.  They sent us to the infusion center for platelets before releasing us to come home late that evening.
Wednesday was the Developmental Evaluation, he's normal.  hehe  Afterward was the monthly IVIG.  They do routine blood draws that showed his hemoglobin levels were very low.  Since we were scheduled to be admitted the next morning, they decided to admit early to give him packed red blood cells.
His central line got a hole in it Wednesday during a blood draw.  The type of line he had was very very tiny due to being an infant size double line.  Other patients have had trouble with the line being too fragile.  They had to stick him 3 times to get an IV started (the reason we have a central line!)
Thursday afternoon, they were able to get him into the OR to replace the broken line.  He now has a single line.  They will put in an additional singe line (so he'll have 2 singles) or replace the single with a double in a week or so.
Due to the hemoglobin levels, the redness around the line entrance, and replacing the original line, all of his transplant dates are now delayed one week.  We will go back on Thursday to start Campath, be home for 10 days, then check in for our long stay on Jan. 27...unless something else changes.
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Saturday, December 24th 2005

2:15 PM

Where to begin....well, the central line placement was moved up to Tuesday.  This sounded good as Stephanie's surgery would be on Wednesday.  Monday night, Sean had to fast after midnight.  He did very well through the night.  Started to get restless late morning while waiting for anesthesia.  The doc checked his blood counts while under and decided that his levels were too low to put in the central line.  They went ahead and did the bone marrow biopsy that was planned for Friday.
Afterward, he was admitted to the hematology floor.  The plan was to give him platelets and plasma over-night and do the central line placement the next morning.  However, they were unable to schedule the central line for Wednesday and we were discharged around 4:00 Tuesday evening.
Tuesday afternoon, my oldest daughter and I took the Central Line Care Class.  This is a new program offered at the hospital to teach family members how to flush out the tubes of a central line.  Since my daughter is with me more hours per day than my husband, it seemed practical to have her be my assistant.  It doesn't seem at all complicated, but I'm sure it's easier to do on a doll than on a wiggly 7 mo. old.
Because this is a new class, they are making a brochure.  The photographer took pictures while we were learning.  Don't know when the brochure will be completed, but it's exciting to think that Sean may be in it.
Sean was admitted on Thursday evening to begin transfusions in prep for his central line placement. 
One of the biggest things that I was thankful for was that they allowed Sean to sleep with me!!  That may not seem like that big of a deal, but he is used to going to bed in his crib and then snuggling in with me in the early morning hours...which are the hours he had to fast too. 
I don't know if it was the transfusions, a gift of God or both...well, technically a transfusion IS a gift of God too.  Anyway, Sean slept very soundly, even crashing within 5 min. of a blood draw at 4 a.m. when he should have been starving.  Since he has such difficult veins, the bone marrow coordinator had arranged for the transport team to do all his blood work.
The central line placement went smoothly and he was discharged by afternoon.  wwwwwoooooohhhhoooo, no more pokes!!!!!
Please continue to pray for our 2nd daughter.  She had her back surgery on Wednesday and still in a considerable amount of pain.
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Thursday, December 15th 2005

5:47 PM

On Dec. 6, we met with the hematology doc about the blood clot and stroke issues.  He said that it is very rare for a baby to have those type of problems.  He is going to run some test, but he also mentioned that preventive treatment isn't much of an option for a baby either.
We have our transplant dates!!!!  Sean will be admitted Jan 5-8 or 9th for daily IV infusions.  Then he'll be home for 10 days.  On Jan. 19th, he will be admitted for his long stay of 4-8 weeks. 
The official bone marrow transplant infusion will be on Jan. 27th.
His central line will be put in on Wednesday.  Fridayhe is scheduled to be sedated for a bone marrow biopsy and pulmonary test.  On Tuesday the 27th, Sean will have a kidney test & chest x-ray.  Jan 4th, they'll do a developmental evaluation and his IVIG infusion.  And of course, as I mentioned above, he'll be admitted on the 5th.
For those who know our family, our 2nd daughter will be having scoliosis surgery on Wednesday also.  My parents are being a real answer to prayer, we would not be able to manage all of this without them.
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Thursday, December 1st 2005

9:41 PM

Today, Sean had a hearing evaluation done in preparation for the bone marrow transplant.  Nursed him at 6:30 this morning, his last meal.  He was allowed clear liquids from 7-10, so we spoon fed him an apple juice snow cone and a bottle of warm sweet orange Kool-Aid at 9:45.  He took less than an once of each, but it was something in his little tummy.  I was concerned that he would get very fussy before sedation at 1:00.  However, he did fabulous!!!  He was smiling at the staff.  The medication was given at 12:52 and he was asleep before the blanket was wrapped around him.  The test took about an hour and he woke up about 5 min. after they finished...even with drugs he takes short naps.
Very thankful that today is done.  He will have to be sedated at least 1 other day still to be determined.  I'm not dreading it as much now that today went so well.  BTW, he has perfect hearing.
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Thursday, November 17th 2005

9:16 AM

They sent a lab slip home with me yesterday and will call if they want me to use it before the 3 week appointment.  Of course, I'm to call or take him in if i think it's getting worse.
Took FOREVER to pick up his med last night.  The base pharmacy didn't carry it.  Wal-mart didn't either.  However, Wal-Mart made calls and found it at a Walgreen's in a 3rd town.  I left at 4:20 and returned at 7:05, did nothing but drive and wait at pharmacies during all that time.
By the time I ate dinner (was starving!) and nursed Sean, I decided that it was too close to his bedtime to give him a dose.  Didn't like the idea of trying a new med right before sleep.  The first dose went down smoothly this morning, will keep an eye on him today to make sure there are no reactions.  By the way, the new medicine is called Amicar.
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