Instead of doing the fun day at the museum we had planned today, Cooper and I headed to the ER for extra fluids and albumin.  Thankfully, we didn't have to be admitted (but we heard from the Fellow that the nurses on 7B were excited Cooper was coming back...girls!  You have to cheer for us to stay HOME!  We'll come visit!).  Tomorrow we'll be starting an extra piggyback of fluids along with his TPN to make up for the fluids he is losing.  The good news is, Cooper is feeling pretty good.  We all had a great day at Aunt Nancy and Aunt Lizzy's house yesterday.  We lounged on the front porch and picked fruit from their trees and the kids got filthy from playing in the yard and Cooper walked around the house and sat outside with us...it was WONDERFUL!  Bubbi and Dzedo came in from TN to spend the day with us there and it was great to have a visit with all 4 kids present and NOT in the hospital.  Cooper never had a wet diaper while we were ther

Sorry for the lag in posts.  Things have been nice and stable since we came home from the hospital again last friday.  Cooper has been busy with labs and appointments and scopes, but he is doing pretty well.  The arganine we are adding to his TPN is helping to keep his CO2 up and his lactate, while still high, is better than it was last week.  His biopsies this week have looked good and that is a huge relief.  We are working on weaning his steroids a little bit because he is barely sleeping at night and is not napping well either.  He is tired and has major mood swings.  We like to say HULK MAAAADDDDD when he morphs into his evil side.  He is love love loving having "his kids" back at The Ronald with us - so am I!!  We did back to school shopping a little bit yesterday.   Everyone got new backpacks and lunch boxes and a couple of new outfits.  We didn't get a ton of stuff because no one has done a ton of growing.&

The Ronald is starting to feel more like home these days.  It is funny how just a couple of days of actually living here instead of just dropping belongings here has made this place seem more homey.  Cooper was able to be discharged from the hospital late this afternoon.  We had planned to leave yesterday.  In fact, I moved our stuff over and we got shipments of TPN to prepare.  However, Cooper's metabolic labs were all screwy - low CO2 and high lactate.  He was getting bicarb runs all week to try to fix the problem and the bicarb levels in his TPN were increased everyday, but none of that was helping.  The transplant team finally called the Mito team here and got some advise.  We started Cooper on IV argenine and he seems to be improving.  He didn't need any extra bicarb today and his lactate came down just a touch.  It's a start.  During the night last night, Cooper started to have severe belly pain and that has continued into

Things are coming along here.  Cooper has had 2 giant boluses of steroids and has started his recycle down from the mega doses.  He is a holy terror, but we are hoping we can get out of here tomorrow and finish the steroid hell at home.  He goes from being a happy boy to the devil in seconds flat, his blood pressure is super high, and he is chubbing up in the cheeks, but we'll go through whatever it takes to keep things working well.  He hasn't had any stoma output at all today...zero.  But I guess we are okay with that.  We are still waiting on antibody results before we can go home.  Please pray those are all fine with no antibody involvement in this rejection.  As long as things are okay and labs are stable, we'll go home tomorrow sometime and then come into to clinic and have biopsies again on Monday morning.  The big kids and my Mom are in NYC with my sister and her family for the next few days.  They are already having a great

Hello from room 724.

Today, we did our best to enjoy every moment and get out to see some of the wonderful museums in Pittsburgh.  Last night, I got a call from our Transplant Coordinator to tell me that Cooper's biopsies showed abnormal cells indicative of early stage rejection.  In an effort to let us have some time on the outside, the team increased Cooper's prograf and steroids way up to try to keep any rejection that might be trying to sneak in at bay.  We are scheduled for another scope and biopsy on Monday morning at 7:30, followed by a clinic appointment at 9am and I have to drop off more labs in the morning as well.  With that news in hand, I have decided to make the most of every second we have at home.  I cooked spaghetti last night for dinner using the tomatoes from my garden in Houston (mom canned them and brought them up for me).  Right after dinner, we threw Cooper in his stroller and walked down the street to a little ice cream shop for a treat.&nb

85 days...6 days shy of Cooper's 3 month transplant anniversary...we are HOME!  Okay, so home is a relative term at this point, but we are at the RMH and Cooper is sleeping in his own little bed.  The kids are tucked into their beds and I am sitting here surrounded by more stuff than I know what to do with.  We are still working on getting the smaller oxygen concentrator for Cooper...hopefully by the end of this week.  That will help with our space issues here.  There just isn't room for all of the equipment that comes with Cooper now.  We nearly had to stay for another night because Apria (idiots that they are) sent Cooper's enteral feeding supplies (pump, feeding bags, formula, etc.) to Houston.  The best part...they sent it from PITTSBURGH to Houston!  So now it is being shipped back and we'll get it tomorrow.  Our wonderful 7B nurses wasted no time sneaking us out with one of their med pumps so we wouldn't have to stay for a minute lo

Sorry for the lack of updates lately.  Things have been stable and steady here for the most part, so I decided to not bore everyone with the same story, different day updates.  Cooper has hung in there with the 5cc of feeds.  He is needing pain meds pretty regularly and is on scheduled zofran to try to keep his nausea at bay.  On Sunday, we took a chance and went from just pedialyte to half strength formula.  That change has been a rough one for Cooper.  His belly is just very slow to adapt to each little change.  George came in this morning (the Chief of Transplant) because he heard rumors that we are trying to get Cooper out of here this week.  He said that he thinks we can do this from home, but that we are literally going to be going up by one or two cc once a week until Cooper is at full feeds.  At some point, we'll make the switch to full strength formula and see how he does.  Even at full strength, he'll only be getting the fo

Things are going no where fast in room 731.  I asked Kyle today if he installed a time machine in Cooper when they did the surgery.  I wondered if he had turned back the clock to before the transplant because Cooper is acting exactly like he did before he had his new gut.  In fact, we discussed how Cooper is acting like he is pseudo-obstructed - the primary reason we did the transplant to begin with.  We tried to bump his feeds up on the pedialyte yesterday and he stopped having any ostomy output at all.  From noon until 4am, he had nothing at all come out and his belly got huge and hot.  An abdominal x-ray looked fine, but didn't explain the problems he is having.  Tomorrow morning, he is going to have an endoscopy along with his regular ileoscopy and biopsies.  They are looking for any signs of infection higher up in his gut that could be causing these issues.  In the meantime, feeds are on hold.  We'll start them up tomorrow eveni

So the good news of lowering CMV levels of last week has turned out to be not true and therefore, not good.  Cooper had another CMV level drawn this morning and by late afternoon, we had word that it had jumped by 10,000points from last week's HIGH of 13,000.  That means the very low 2600 we got on Thursday was a lab error.  Kyle went down and confirmed that this afternoon.  Coop's CMV level is now at 23,000.  The team is thinking on it overnight and will redraw in the morning for verify.  If the level is as high as we think it is, they are talking about completely taking away his prograf for a few days to see if his body will fight this infection once there is no immunosuppression left.  That scares the crap out of me and I really hope it doesn't come to that.  This also brings the upper endoscopy that we talked about last week back to the forefront.  They want to make sure that the infection is not hiding up higher in his small bowel th