Grandma, my mom, is now bed ridden with a disc issue.  Her leg has been bothering her for quite some time and apparently got worse when she was out stalking Dr Ghisoli walking Tau a few weeks ago.  Last night the pain was so bad that she couldn’t sleep and so she finally went in to see the doctor.  She needs to have more tests run, but the doctor thinks it could be a collapsed disk.  For now she is flying high and snoring away thanks to some good pain meds.  Hopefully dad remembers to check on her to make she is breathing every few hours.

Early this morning Cutler started to run a fever and was still crying out in pain.  He was immediately started on antibiotics as well as given pain meds.  By 3 am I was able to lay him back to sleep in his bed where he slept until around 8 am.  His fever has gotten as high as 102, but fortunately has stayed pretty low throughout the day.  Blood has been drawn and multiple tests are being run to detect any potential infections as well as a chest xray was run.  The doctor did say that the fever could be from the inflammation as he continues to receive tons of fluids including more and more blood.  I tease the nurses that they should just draw the blood for the tests from the bags that they hang as it seems like they pull out as much as they put in.

For the pain, Cutler has been put back on the constant drip where he receives a dose of fentanyl hourly and the button is always there when I need a sleep/potty break he is showing pain.  He is also getting a diuretic to help with the fluid retention.  He did spend the majority of the day napping in our arms, but I did get a full hour of play time with him this evening when I relieved Nana.  For now he is fast asleep, hopefully for the night and we will just pray and wait for the test results.

This picture was taken on Wednesday, Dec. 9 and as you can see, he was very happy.  Cutler had another good day today, however, around 7:00 Grandma noticed the area around his central line was a little swollen.  The doctor stopped the TPN (steak & potatoes in a bag) and started more fluids.  We’re hopeful the swelling goes away tonight, and that the central line isn’t leaking.  The last thing the little guy needs is to have another operation on his central line!!  I’m happy to report that he is sleeping soundly.

Mason and I had a special day – I picked him up early from school and we spent about 3.5 hours at NorthPark mall.  We saw 2 puppet shows, toured the train display, tried to have our picture taken with Santa (along with thousands of other like-minded families), and shared ice cream.  He has been such a good boy lately I felt he deserved some one-on-one time.  Poor little guy fell asleep in the car on the ride home!  Will post pictures tomorrow.

Aaron is taking the red-eye home from Seattle…which will put him in a fantastic mood, I’m sure.  We all look forward to having him home!

If Aaron had left the “thingy” at the hospital, I could have downloaded some great pictures from the camera to the laptop to the blog…  I’ll get some up tomorrow or the next day.  So far so good this Day +6 (transplant day + 6 days).  The doctors and nurses have been telling us that most kids are very sick at this point, with mucisitis or bad diaper rash, but not Cutler!  Superbaby has spit up some mucus the last couple of days, but once he does, he’s ready to play some more!

Thank you to the nurses and doctors at Medical City who are taking such wonderful care of Cutler.  A sincere thank you to my mom and Aaron’s mom who have been working shifts at the hospital to give me time to rest and time to hang out with Mason while Aaron is out of town.  And I can’t forget Aaron’s dad, who is doing me a tremendous favor by keeping the refrigerator uncluttered of leftovers!  And of course Mason, who continues to be a sweet and understanding little boy – most of the time 🙂  The biggest praise goes to God, who is keeping a watchful eye over Cutler and laying His healing hand on my precious little baby.

I hope everyone is feeling the blessings of this holiday season!

Cutler provided an incredible send off for me today.  He woke around 8 am and was in the best mood that I have seen him in for quite some time.  He had an incredible amount of energy and just wanted to play all day long.  His usual smile was almost constantly on his face.  This is the best I have seen him since we started the prep for the transplant and I think if we had the exersaucer there he would have been jumping the entire day.  He even drank 2 oz of pedialyte for me.  I believe this was his way of reassuring me that it would be alright to leave town for a few days.  What an incredibly strong and loving baby we have.  We are extremely blessed.

Oh and I have been meaning to reply to a question from the “comment hog”, Aunt Linda, his transplant date is considered to be his new birthday here as well.  So going forward we will have two birthdays to celebrate for Cutler.  3/14 and 12/3.

As soon as I finished typing up the last post Cutler looked over at me from his bed and flashed his smile.  Looks like we need to turn up the meds after all for a good night of sleep.  🙂

Looks like, for now, we have the bleeding and the pain under control.  Since the last changing of the dressing yesterday morning, we haven’t had to make another change and judging based on the color of the gauze the bleeding has stopped. 

It also looks like the fentanyl drip is working.  The drip sends the meds to him every hour, but we also have the option to press the magic button every 30 minutes to send more, but so far we haven’t had to press the button.  Even better is that despite the constant flow of pain meds, he is not overly tired and sleeping all of the time.  He is back to his happy and playful self, just without showing any interest in eating.  As the mucasitis continues we may have to start suctioning him a bit to help with the discharge and I can hear it in his nose already, but at least he is comfortable.

Unfortunately I have to fly to Seattle on Tuesday morning and not get back until early Friday morning, so I am going to spend a little extra time with him tomorrow.  I keep praying and telling Cutler that if an infection is going to happen, he has to hold off until Friday when I can be here for him.  It’s funny, when I was sick I didn’t get to see him for longer than I will be in Seattle, but the thought of being away for so long makes it more difficult to handle.  However, I am not going to complain as my company has been ridiculously accomodating and understanding about everything we are going through, so a few days away won’t hurt us.

Below are a few pictures of Cutler playing.  I will do my best to show Melanie how to get the photos off the camera so we can keep providing them while I am away.

At least it was for dad and I. Not so much for this guy. Four point game and he is soooo excited.

Sorry for taking so long to get the update to yesterday’s version, but I was without the photos until now.  The transplant went smoothly and so far Cutler is showing zero side effects.  We were told we could expect to experience some chills and/or fever, but so far it is looking good.  He is having some pain issues with the sores in his mouth, but this is from the chemo that he had to endure leading up to the transplant. 

Also, as he had to have a new central line put in, we are experiencing some excessive bleeding from the site and have had to change the dressings twice today.  When I came in this evening it looked like it was still bleeding, but they nurses assured me that what I was seeing is the clotting in action.  Apparently they applied a type of wrap that helps create a fiber sheethe to encourage the clotting and effectively create an artificial scab.  Because his platelets are so low, he received a transfusion today, he needs help getting the bleeding to stop.  I am praying that tomorrow morning when we wake it will be all clotted up and we can focus on the other major tasks at hand, like avoiding an infection.

The transplant itself, was rather anticlimatic.  It was pretty much a blood transfusion as you can see from the pictures below.  Not even a doctor to be seen for the process.  It was just mom, dad, Cutler, and the amazing nurse Cari.  It lasted maybe a bit more than an hour and Cutler slept through the majority of it.

Now everything is in the hands of God as we tread across some pretty thin ice in waiting to see if the stem cells are accepted and begin to work.  In the interim Cutler has zero ability to fight off infections as well as experiencing graft verse host disease (gvhd).  He is taking medicine to help his lack of immune system as well as to deter the gvhd.  We should hopefully see some productivity from the new cells within three weeks time.  Would make for an incredible Christmas present to know that they are indeed working and to see some progress with his white cells.

Below are just some random pictures from the transfusion, including Cari modeling the latest in cord blood.  Thank you again for everyone’s continued thoughts and prayers.  Cutler is strong and God is great!  With the two of them combined and everyone’s continued support we will beat this for good!

The transplant is now under way and as you can see from the photos it is rather anticlimatic. It is much like a blood transfusion and the stem cells are like homing pigeons, but cleaner. They just simply know where to go. Cutler is so excited that after giving the thumbs up he went to sleep. 🙂 Will post more later when I can get to the computer. Thank you everyone for your continued support and prayers!