Great news today…Jacob remains 100% donor cells!!!

We had a rough night though again last night.  Jacob had trouble sleeping and just couldn’t get comfortable. He vomited several times, but didn’t have any diarrhea.   Good news is he ...

Jacob continues with 6-8 episodes each of vomiting and diarrhea.  The doctors are unsure if this is being caused by the rotavirus or the feeds or a combination of them both. Despite these things the team wanted to discharge us today, but it ended up we had to stay in order to see Dr. Lucky, Jacob’s dermatologist. She has been following Jacob throughout all his skin issues.  It takes months to get an appointment with her, so I was grateful that she would make room in her busy schedule to come see us with only a days notice.  Jacob developed two little red spots on his lower belly that I was concerned looked a little like how that rare fungal infection first presented.

It is with a heavy heart and tear filled eyes that I write the blog tonight.  One of our NEMO friends, Jack Hagelin, earned his angel wings last night.  I hated that expression the first time I ever heard it, mainly because it’s so painful to hear and seems so wrong to be said about a child.  But after seeing these kids fight so hard and suffer so much, I understand it better.< ...

Another decent day here in the hospital-no vomiting or diarrhea episodes.  Yeah. Jacob’s NJ feeds just got turned up to 25ml per hour.  He seems a little fussier to me, but overall is tolerating them so far.  We’ll increase them by 5ml every eight hours until the target goal of 45ml is reached.

We had a much better night with no vomiting or diarrhea-yeah!  Jacob had a couple episodes of the dry heaves during the day, but much better than yesterday.  He was also able to keep down several sips of water today.  We had a slow start to the morning with Jacob feeling pretty lethargic, but his energy level picked up a little throughout the day.  He even got out of bed twice and played on the mat.  He’s really unsteady with his wobbly little legs, but he was determined to climb up on top of the couch to look out the window.

We had a rough night last night.  Jacob was up six or seven times with vomiting and diarrhea.  His little bum is sore so changing his diaper has become a very unpleasant thing for him.  He was so restless all night, calling out to me and just not able to get comfortable.  They gave him some special medication for nausea but it didn’t seem to help that much.

The BMT doctors by-passed Jacob and Brian’s room this morning for rounds because my two guys were still sleeping at 11:30am.  No wonder…they didn’t get into a room until after 3:30am last evening and then finally got to go to sleep at

Well, less than 28 hours after we were discharged from the hospital we had to take Jacob back to the Emergency Room.  Since we've been home he's had increased episodes of diarrhea and vomiting and then tonight around 8:30pm he developed a fever and the shakes.  After several conversations with our faithful Fellow, Dr. Marsh, it was decided that Jacob should be seen in the ER.  It's after 1:00am and I just got home.  Jacob is going to be admitted, and this time to the Hem/Onc Floor (across the hall from BMT).  Brian, being the incredible husband that he is, insisted that he endure the long ER visit and then stay the night in the hospital so I could get some rest before he leaves tomorrow.  Before I left they had already drawn blood cultures and labs and started Jacob on an IV antibiotic and fluids.  We should know more tomorrow.

From a parental diagnostic standpoint, Brian and I both ...

Well, less than 28 hours after we were discharged from the hospital we had to take Jacob back to the Emergency Room.  Since we've been home he's had increased episodes of diarrhea and vomiting and then tonight around 8:30pm he developed a fever and the shakes.  After several conversations with our faithful Fellow, Dr. Marsh, it was decided that Jacob should be seen in the ER.  It's after 1:00am and I just got home.  Jacob is going to be admitted, and this time to the Hem/Onc Floor (across the hall from BMT).  Brian, being the incredible husband that he is, insisted that he endure the long ER visit and then stay the night in the hospital so I could get some rest before he leaves tomorrow.  Before I left they had already drawn blood cultures and labs and started Jacob on an IV antibiotic and fluids.  We should know more tomorrow.

From a parental diagnostic standpoint, Brian and I both ...

Busy, busy, busy.  The team recommended that we take JT home tonight, so we did.  It’s overwhelming.  Home health has already been out this evening to educate Jodi and me on the new routine.  It seems hard to believe, but there’s actually more medical care required now than there ever has been before.  He’s on NJ tube feeds around the clock, IV medications twice a day, and IV fluids 12 hours a day.  In addition, we have to give him oral meds through his NJ tube all day long to make sure that we get them all in ...