So, I never posted the results of last weeks upper GI.  It was a mixed bag, really.  The wonderful news was that there were no blockages, kinks, or narrowings in the bowel.  That means Cooper didn't need surgery to fix the problems he is having.  On the flip side, the contrast that was injected into his j tube could very clearly be seen refluxing and filling up his stomach faster than it could move forward.  Some did go through to his ostomy, but you couldn't deny that there is some major backwards motility going on.  The Radiologist freaked me out by asking if the donor had any known motility issues.  Our surgeons were pretty ticked that he asked me that.  All of that is checked and rechecked before a donor is approved for small bowel.  And what an AMAZING blessing to have such a generous family who was so willing to give this gift to Cooper!  The issue is not the new organ, but Cooper.  Cooper never does anything the way anyon

Cooper and I have just been hanging out at The Ronald.  We have been spending lots of time with our friends, The Carlsons.  We all enjoy sitting outside in the evenings when it cools off and letting the kids play while we eat dinner and visit.  It is great to have such wonderful friends who are living the same life as we are right now.  We are hoping that our boys both get to go HOME home around the same time!  Please keep sweet Brady in your prayers!  He is making great strides following his second liver transplant.  Seeing him smile will melt your heart and make your day all at once!

Tonight, I am "nerbus," as Cooper likes to say.  My nerves are trying to get to me and I am trying to beat them back.  Cooper has had a few rough days in the pain department and he has milky bile draining from his stomach at this moment.  These are not things I like to report or like to see.  We increased his feeds to 9cc an hour after getting a great report from his biopsy on Tuesday.  We are so so HAPPY for no rejection and a wonderful looking bowel!  It doesn't get better than that!  We are going to space his scopes/biopsies out to every 2 weeks now and that is an amazing step in the right direction!  All of that is fantastic news, so why the nerves?  Well, it is the pain and the milk that is backwashing into his stomach.  Why is this still happening?  Why does a 1cc an hour increase in feeds make such an enormous difference for Cooper?  By all accounts, it shouldn't and yet here we are again.  I am so sca

In 4 days, Cooper will hit his 4 month transplant anniversary.  In many ways, I cannot believe it has been that long, but in so many others, it feels like we have been on this journery for much longer.  Cooper had his weekly clinic visit this morning.  The last time I brought up the question of when we may be able to go back to Houston, I was told to make plans for Christmas up here.  But Cooper has been doing well and I feel like what we are doing right now can all be done from home...TPN, increasing feeds very slowly, biweekly labs, weekly clinic visits, etc.  And so that is why today, I asked again.  I asked in a different way, though.  While talking to our coordinator before we saw the doctor, I simply asked what goals we need to meet to go home.  The obvious thing is that Cooper has to stay out of rejection.  That will always be the most important thing.  So, Sarah (our coordinator) said that Cooper has to get to a poi

 Last night, Cooper and I went out for a night on the town.  We were given tickets to a Pirates game and a nice dinner at the Lexus Club was included.   We had seats right behind home plate, but Cooper wasn't too impressed.  I think he would have had a good time if the weather had have cooperated.  It was raining off and on and Cooper does not enjoy being out in even the slightest drizzle.  We lasted about and inning and a half and then we called it quits.  However, we still had a fun time and it was very nice to get out of the hospital area act like regular people for a change.  We attempted to go to church with some friends this morning, but Cooper's belly didn't cooperate.  I didn't want him hurling exorcist style during the service, so we stayed behind.  We'll try that again next week.  Kevin is working hard to get the kids ready

Just a quick note to say that we are OUT of the hospital and back at The Ronald.  Cooper is chillin' in his recliner watching Backys while the last of his meds runs.  Then it is bedtime for both of us.  This place sure is quiet without the whole gang here!  But their artwork and love are all around us here.  Plus, Adam left his jacket and it smells like him, so I will be sleeping with that tonight!  Please keep the prayers comin' for Cooper.  He is AMAZING!

Cooper and I are just waiting around at the hospital for his labs to stabilize so we can head back to the RMH.  Right now, his prograf level and his gent levels are all over the place, making it impossible to give a definite dose for at home.  He is also having a lot of electrolyte issues that we are chasing.  We increased his feeds to 8cc an hour, and like clockwork, he is dumping a ton again.  His ostomy output never really got back to his baseline before we made the change, so he was already losing a lot to begin with.  Now it is just a bit worse.  He needed extra fluids today because of that.  We are monkeying with his TPN to get his electrolytes back to stable, so that is another thing we have to wait on.  We have to have definite TPN orders to be able to get out of here.  We are hoping for tomorrow, but it might not happen, depending on his morning labs.  His prograf level jumped back up to being too high tonight.  It is a

This morning, I tearfully hugged and kissed my 3 Houston-bound babies good-bye and waved to them as the pulled away from the hospital with Mei at the wheel.  I had to somehow squish every kiss I could into those last few...the good night kisses  and good morning kisses for the next 4 months, the going off to your first day of school kisses, the kisses that may be needed if someone gets hurt or scared or is just sad, the kisses I sneak into their rooms at night to give them before I go to sleep and sometimes in the middle of the night if I wake up and want to feel close to them, the kisses that come as the jump off the bus and into my arms at the end of the school day...everything I could think of that they might need from their Mom, I had to put into those last moments with Caroline, Adam, and Oliver.  I hope I managed to do it for them.  I pray their hearts do not feel like mine right now.  If you are amoung the lucky people who will see my kids in the

The great news of the day is, Cooper is on 7B and out of the PICU.  We were very happy to be able to make that move this afternoon.  The bad news of the day is that Cooper is growing 3 seperate bugs in his central line.  Apparently, translocating large amounts of bacteria post-scope is a common thing amongst small bowel transplant kids.  I had no idea and I am not happy to have found out this way!  I mean 3 different bugs?  REALLY?  He has  gram positive rods, gram positive cocci, and gram negative rods.  We don't know the names of the bugs or the drug sensitivities yet, but we will in the next couple of days.  It has been several hours since he last spiked a huge fever, so that tells us that something of the massive amounts of antibiotics and antifungals he is on are working.  That is good because he got so incredibly sick so so fast last night.  Our nurse tonight is working hard to get Cooper a little ahead of schedu

Tonight we are back inpatient.  Cooper has had good days despite the dumping he has been doing.  He had a great day today and even had PT and OT.  He was happily playing on the floor with his cars this evening and he suddenly started begging to go to bed.  I picked him up to take him to the room for bed and he started to shake.  He had violent chills as his fever spiked and I raced around getting his meds together and running him over to the ER.  He is finally getting a bit more stable and we may be able to stay out of the PICU.  They are wanting to stick us there over night because his heart rate and respirations are so high, but I think we can manage on the floor as long as we keep his temp down and his fluid levels up.  He was dehydrated when we got here...that is from all of the dumping from the last days and days.  His white count is very low so they think he has an infection in his line, but they'll likely scope him in the morning j