This morning we all woke up in the same house.  Very sweet.

Jodi and JT limped home Wednesday night and Jodi was in bad shape.  After some real sleep at home and some homemade food (thank you to those who have fed us recently!) she seems to be getting back onto her feet.  JT still has a nasty cough, esp. at night, and we nearly had a temperature situation this morning, but we're hoping to spend the weekend together for once.  We all need it.

Pre-school will have to wait until a later time.  We're disappointed because both boys were learning so much and enjoying the company of other kids but our doctor agreed wholeheartedly - it's simply too much risk at this point.  Spending so much time in the hospital is regress, not progress.  Hopefully we can try again in the spring after the cold/flu season; by that time, perhaps JT will be off the huge doses of ster ...

Brian here in Cincinnati.  Here's the scoop:

JT is a whole lot better than when I left here last Monday.  He's breathing okay and he's been fever-free for 48 hours so the doctor discontinued antibiotics this morning.  The allergic reaction he experienced yesterday (presumably from the IVIG infusion) has abated.   His white blood cell count jumped way up after the GCF infusion.  He's tolerating his feeds well but still experiencing D when he sits down on the toilet.  The next time he goes they want a culture.  His coughing fits are troubling and they're violent when he's in the midst of one.  The doctor told me today that the cough would linger after the other symptoms have subsided. 

Jodi has been feeling terrible.  She headed off to the Hannaford Suites last night after I arrived and I hoped that she would feel much better after a night ...

For the first time in several days JT woke me up by saying, "Good morning mommy."  He had gotten unhooked from the IV pole for the first time since he arrived and had come to sleep next to me on the pull out couch.  He hopped out of bed and acted a little crazy and was seeming his old self.  But a half hour later he started really complaining that his throat hurt him.  I gave him some tylenol and benedryl and he's a little more comfortable now.  He still has coughing fits about every half hour, which can't help his throat.

We just finished rounds with the team and the plan at this point is for a Sunday discharge.  Clinically Jacob's doing better, but his white blood count dropped to 1.0 this morning.  They are going to give him a drug to help stimulate his WBC count today.  His blood cultures remain negative so that is good.  He's tolerating his feeds as well.  Brian is comi ...

Sorry I didn't update yesterday, but the news would have changed today anyway.  Yesterday Jacob improved greatly.  We were up playing games, building blocks and watching shows.  He had been fever free and his cultures were still negative so they stopped the antibiotics and had us set to head home on Friday.

Well, last night that all changed.  At around 4am he woke me saying he was going to throw up.  When I felt him he was burning up with a fever of 38.7 c.  We immediately gave tylenol, redrew cultures and restarted the antibiotics.  No more discharge for us on Friday.

On top of all this I think I have what Jacob has.  The plan is for Brian to releive me tomorrow evening so I can head home for a day of rest.

Jacob is still sleeping.  He feels really crappy.  Please keep us in your prayers.  Thanks.

Well, shortly after my last blog update I talked to Brian again and Jacob had taken a turn for the worse.  His fever came back and his oxygen levels dropped again, requiring blow-by oxygen to be restarted.  Brian wanted to prepare me for what I would find when I got to Cicny and told me that this was the sickest he's seen our son since the actual transplant days.

When I arrived Jacob couldn't talk, only mouth words.  He had a piercing bark like cough and seemed to struggle with each breath he took.  His heart rate was racing at 150-160.  His oxygen level was still only 94%, despite the added oxygen.  His face winced with each cough and swallow.  It was a pathetic sight.  Brian had just found out that Jacob tested positive for the parainfluenza virus and that he had croup.  They had ordered a CAT scan of his lungs as well because they were concerned  ...

Just wanted to let everyone know that Brian and JT made it safely to Cincinnati last night.  It was a long night in the ER and then they finally got admitted to the BMT unit about 6am.  They drew all kinds of blood and did a chest x-ray, which came back clear.  Jacob had a fever through the night but is fever free this morning.  He's been sleeping ever since they got to the room.  His heart rate has been elevated, reflecting infection and his white blood cell count jumped from 3.5 last Thursday to 13.5 yesterday, which also reflects that he is fighting some type of infection.  We're not sure yet if it is bacterial or viral.  If it is viral it will take him a lot longer than a child with a working immune system to kick it.  Either way, Jacob is stable - not requiring oxygen- and for that we are thankful.  When I spoke with Brian the doctors had not yet rounded on Jacob so we don't know the plan yet.  Otherwise, J ...

Once again, sorry for not posting for so long.  Things have been moving right along with only a few minor bumps in the road until this weekend...

Last night around 2:30am Jacob got a fever.  Jacob, Justy and I were staying at Brian's parent's house.  I dutifully called and had the on-call BMT resident paged.  The resident hadn't returned the page for 10 minutes so the operator paged the on-call attending.  This just happend to be Jacob's primary doctor - Dr. Filipovich.  I was thankful for this because the resident would have had to advise me to take Jacob to the ER and have him admitted, blood cultures drawn and antibiotics started (that's protocol).  But since it was Dr. F, she and I talked and decided that since Jacob wasn't having any other symptoms I should just give him some tylenol and recheck his temp in 2 hours - hooray.  Jacob was so tired I really didn't want to drag him to the ER and go through the ...

Well, JT returned to preschool this week and I guess the kids received him back like the hero that he really is.  They had all made cards for him during his recent scare; it's cool to have other kids be a regular part of his life, finally. 

Justy picked up a rash from somewhere and his doctor said it looked like something viral when he took a look  Thursday afternoon so we tried to keep the boys separated until we saw how it was going to go.  You can probably imagine how successful a proposition that was.  Luckily, it hasn't worsened and we're inclined to think the rash was a reaction to the antibiotic he was on for his ear infection.

Otherwise, it's the same routine:  JT and Jodi in Cincinnati 3 days a week and 4-day weekends together.  Believe me, we'll take it.  The doctors said we'd be on this schedule for the foreseeable future, so Jodi will continue to crank out the highway m ...

Sorry for the late update.  Good news...no bacteria ever grew out of the blood cultures taken, so the doctors think the fever was related to a virus.  We were discharged from the hospital on Tuesday early evening and had to report back to the hospital at 7:30am the next morning for photophersis in the day hospital.  Everything went smoothly and then we headed to the zoo for a much needed break from the hospital.  Jacob loved it, but it was still a little too hot for him.  He overheated several times so we finally called it quits and decided we'd come back in a few weeks when it may be a tad bit cooler.

More good news...Dr. Filipovich decided to cut back Jacob's oral steroids to every other day.  We're hoping that things continue to look good with this latest change.  On the not so good side of things Jacob's white blood cell count and neutrophil count were extremely low on Thursday, which probably is a reflect ...