I hope all of my fellow Moms have had a great day.  Cooper and I have had an okay day.

Kevin kissed Cooper and I goodbye at 5:30 this morning and headed to the airport with his Aunts.  The first flight was full because of a prior cancellation, but he got on the second flight out this morning and landed safely in Houston at 11:45am TX time.  Cooper and I have had a quiet and restful day.  We started pretty early.  Mornings are tough because he has to get his prograf at 8am and that usually means I have to wake him up to take it.  There is no choice on this one...no flexibility in the schedule.  He takes the medication at 8am and 8pm everyday with a blood draw at 6am to check his levels.  This is the drug that is non-negotiable and he is not too happy about it.  He takes it, but he grumbles about it the entire time.  Shortly after getting him all settled back down from his wake up call, we had a visit from the weekend OT.  Now, I like our OT girl during the week, but I must say that this girl was way better versed i

Cooper is having a great day today.  He walked from his room all the way down the hall to the toy room and then back to his room.  He needs a lot of help, but everyday he is getting stronger.  He was pretty good for his OT today as well.  She had his take cloths pins off of a string and then put them on her shirt and take them back off again.  As the mommy who has pushed Cooper through therapy for so long, it made my heart hurt a little bit to see him struggle so much with a task that not even 2 weeks ago would have been easy.  It is the same with walking.  His legs just shake and he can't stand up straight.  It makes me sad, but at the same time, I am certain that he will regain all of his strength and be running the halls in no time.  That is just how Cooper operates!  He never ceases to amaze me!  Cooper has continued to have a ton of bile drainage today.  We are clamping him for short intervals of time when he has to ge

Today has been a good day.  We had some setbacks last night that had us stuck in the PICU for one more night and most of the day, but we got moved to the Transplant floor around 6 this evening.  Cooper now resides in room 738.  This mom is refusing to say I live in the hospital, so I am just visiting from my apartment in the RMH!  HAHAHA!  Tonight, I started moving stuff over to the hospital.  I plan to use our apartment as storage for most of our stuff so we can keep the clutter down to a dull roar in the room here.  I will also be doing our laundry over there because it is free AND they have lots of washers and dryers.  Plus, I'll keep most of my food there so that I don't take up the entire parent fridge and freezer on 7b.  Oh, and that is also where we'll get mail.  That makes life easier for all of us!  I just can't only live in the hospital in a city so far from home!  I have to have a "house" for Cooper and

Today has been filled with highs and lows.  This morning, Cooper stood up twice with his new PT friend Matt.  He wasn't happy about it and he needed a lot of help and support, but he did it.  That was super exciting for us because he is so weak and we are very ready to get him up and going.  He also slept through the night last night for the first time since we took away his sedation meds.  That was a huge deal.  He needs to rest to get better!  When the team rounded this morning, they upped his feeds from 5cc an hour to 10cc an hour.  Kevin and I were definitely doing the happy dance over that one!  And finally on the awesome side, Cooper had his cathetar removed and has been peeing a pretty good amount on his own!  Oh, and we now only have 1 IV pole filled up instead of 2...so it has been a good day!  On the flip side of the coin, today has been the worst day by far for pain for Cooper.  His heart rate has been sky high a

Today has been a big day for Cooper.  It marks the 1 week anniversary of his transplant.  That is really astounding if you think about it.  It has been only one week but in that time Cooper has accomplished so much!  This morning he had his first ileoscopy and biopsy at the bedside.  This will happen twice a week for the foreseeable future.  Kevin and I got to watch and see what the scope was seeing.  To our eyes, his graft looks amazing...pink and perfect!  They took 2 itty bitty pieces of tissue and that was that.  We'll have pathology results tomorrow, but I don't anticipate any issues.  They are looking for rejection of the organs.  The other big news of the day is that Cooper is being fed through his stomach!  He is currently at 5cc an hour of peptamin jr.  Earlier today, we had some major fluid issues that we have now taken care of with a couple of fluid boluses.  He was extremely thirsty and begging for wat

Cooper is having a bit of a rough day today.  He is doing extremely well, but he is not a happy boy.  For the past week, we have been doing everything we can to get extra fluids out of his with lasix, diarell, and restricting fluids.  All of this was being done because it was assumed that Coopers elevated blood pressure was being caused by fluid retention.  For a couple of days there, I think that it was definitely making things worse.  However, today Cooper is extremely deydrated - to the point that his eyes are sunken in and his lips are cracked.  He is getting his TPN at a rate of 55 now instead of the 75 that he was getting pre-transplant.  That is baseline maintenance fluids for Cooper's size.  But Cooper's body is used to having a major fluid overload to function.  His daily fluids ran for a total of 105cc an hour.  He is having trouble adjusting to what a normal person should be fine getting.  Add to that that today they

First of all, surgery went well.  Cooper was able to be closed all of the way, muscle and all.  That is wonderful wonderful news!  And now for the best news - COOPER IS AWAKE!!!  I am not saying he is happy about it.  We're ecstatic, though!  It is pretty sad, actually.  He is very upset to have the breathing tube in still.  He is chewing the heck out of it and spent the first 30 minutes he was awake trying with all of his might to spit it out.  He only succeeded in pushing out a whole lot of spit, though.  They turned off his paralytic just before 7 and he was waking up within 20 minutes.  He is giving the nurse a hard time...shaking his head no everytime he says he is going to do something.  Right now, he has a pretty good fever  - the doctors think it is just a post-op fever, but if it persists, they'll get more cultures.  For now, we are throwing every pain med at him we can to keep him calm.  His vent se

We are sitting up here with Cooper, waiting on the anesthesia team to come and get him for his surgery this morning.  It was supposed to be by 8, but that is hospital time, so it could be anytime now.  Please please pray that Cooper handles this next step well and that he comes back strong and ready to begin waking up a little bit.  After this surgery, our next goal is to get him off the vent as soon as he can tolerate it.  I'll update again when we are back from surgery!