After a quick road trip and a couple days isolation due to an ear infection, Cutler and I are back together again. I forget where Melanie left off, but things have been going pretty well so far. there was some concern about the area of the line due to some inflamation, but it looks like all is well there now. He is continuing to cough up and sneeze some blood tinged mucus and the mucus is now getting so thick it is causing some choking. Starting today he has had issues coughing up the mucus to the point he turns red and eventually vomits it up. We have also started to use the suction to help him out, but it is quite shocking to see it happen for the first time. I will be sleeping lightly in fear of him choking on it in his sleep. Hope to get better situated with the computer and pictures tomorrow where I can give a more thorough update as well as some stories of Mason from the weekend.

Unfortunately Cutler is still in a lot of pain from the mucisitis and cried out several times throughout the night to let me know.  On top of that pain, he is also having to endure the pain of having his dressing changed multiple times since yesterday as the blood is still not clotting.  They say that his platelets are alright, but he will be receiving more soon and he was also provided with a medicine called amicar that should help in the clotting process.  With the most recent dressing change they have applied some more surgiseal and gauze with pressure prior to applying the covering so we are hoping that with the pressure and new gauze it will finally clot.

Just watching him go through the pain he is makes me realize that there is no pain as great as that of your children.  It breaks my heart every time to watch him go through the dressing change especially when they clean the area and you can tell the alcohol wipes are burning him.  But amazingly enough, Cutler quickly recovers and reminds me that pain is only temporary.  Regardless, we are waiting on a pump to have a fentanyl drip set up so that we will have control, with the friendly button, on how often he receives the relief.  Below is a picture of Cutler showing his strength not ten minutes after one of his dressing changes.

On The Road Again

Cutler was discharged yesterday morning and it sure feels good to have the family home again.  As usual, I think  Cutler was most excited to see his big brother, who he hadn’t seen in 8 days.  It was also nice to have Mason cuddle with us both in the morning instead of just one of us.  Sorry for the delayed posting, just got caught up in the fun of having everyone home for once.  Will try to post pictures later.

Kammi got a kick, two stooges didn't

So apparently Cutler may be a good running back in the future as he pulled a quick one over on us today.  After both Melanie and I left Cutler this morning, things turned a bit and Cutler had a bit of a rough day.  He vomited twice and blood pressure was a bit high and then this evening before I left again, Cutler was running a mild temperature.  After the first vomit episode Cutler was given Benadryl, which usually works but then he vomited a second time and so they provided a stronger medicine that I can’t recall the name of at this time.  This appears to have worked as he has since sucked down quite a bit of milk and successfully retained it.  However, I just checked in with Melanie and the fever is gone, which the nurse Kammi believes was potentially a reaction to the chemo as a side effect is a temperature spike.  Now I am happy to report that he is back to his happy playful self.  Unfortunately Mason is now limping pretty bad, he says his leg “feels old”, so we are taking him to the doctor tomorrow morning.

One positive thing to come from today is that Kammi got a kick out of the effects of the vomit attacks.  Apparently he took turns making sure he blanketed Grandma and Aunt Pat and is apparently an equal opportunity vomiter.  He got them so good that they had to wear hospital robes while washing their clothes in the family laundry facility.  Apparently Kammi got quite a kick out of this, which may have knocked her down a few rungs on the old ladies’ ladder, but has boosted her significantly up mine.  (Attention our nurse friends, the competition is on 🙂 )  But to be clear, we love them all as they are all tremendous people who take extra special care of Cutler and our family, which deserves a separate posting all on its own.

But the story for me that was the funniest is that while Grandma is walking back from the laundry facility and the charge nurse asked Kammi why “that patient” was on this floor.  If you ask me, it would have been more of a question of why the orderlies weren’t chasing after the crazies breaking from the loony ward.  (no offense intended towards the old mentally inept)

Despite the negative and positives from today, I think what today did most was really open our eyes that not everything is going to be peaches and cream and that we are going to have far worse days ahead of us.  I think sometimes, at least for me, with all of the positive steps Cutler takes and the way that he continually acts healthy I forget how sick he really is and today provided an eye opener for me.  Today was a minor blip compared to what we have ahead, but we are strong and Cutler will beat this.

Cutler had yet another successful spinal tap.  Maybe 20 minutes after the start, Cutler was back in Melanie’s arms and ready to eat. 

These cords don't taste good, get me my bottle

Still awaiting the results, but the doctor did take the opportunity to inject a little more chemo for safe measure.  Dr Goldman, our original doctor, is now taking his turn on the floor and is still amazed at how good Cutler looks and acts.  He made mention that maybe in a few days when his immune system is up we could bring home for a few days.  While I welcome this as good news, I am so scared of infection that I think both Melanie and I would be on pins and needles every time he sneezes or coughs.  But it would be good to have a semi normal life for a few days.  We will see how it goes.

Big and Lil Bro

Can you tell I am running out of  witty titles?  I really enjoy typing up these posts, but I am really having trouble being creative as the number of posts grow.  Any way, Cutler still has no fever and so for now it looks like he has avoided an infection and his quick bout was more of a bacterial issue than anything else.  We still never heard on the culture results, or at least not that I am aware of, and so we will just go with the doctor’s assumption that it was indeed not infection but bacterial.  We’ll take whatever the doctor says so long as they keep proving themselves right.

Cutler continues to do well and his appetite continues to grow.  Unfortunately he does have another spinal tap scheduled for tomorrow morning at 9 am to test the fluid as well as to inject one more round of chemo to be safe.  I guess we are becoming so familiar with this now that my biggest concern is his crankiness to not being able to eat in the morning, especially now that his appetite has continued to grow at mass pace.

Check out this set!

Aside from a succesful bone marrow transplant, Cutler’s Christmas wish has already come true…his two front teeth are in!  If you look close enough, his two bottom teeth are right there and based on the amount of slobber he has many more quickly on the way.  Ironically we noticed the first one poking through on the dreaded Sept 11th when this whole madness started…also the same time that my watch stopped.  I am thinking I will just get a new watch, been wanting a new one for a while anyway.  🙂

The spinal tap went well.  This time around it actually occurred at 9 am and wasn’t delayed so we didn’t have to deal with his hunger pains.  He went right to sleep and continued to sleep for a little while after, which was long overdue.  I think this one finally caused some soreness in the back as he was consistently rolling to his side.  The doctor did come back and said that the initial look under the microscope was clean, but that we are still waiting for the test from the lab.  Apparently the initial look is done with just a sample of the fluid whereas the lab runs it through the centrifuge to push all of the cells together, so that is the real test, but he expects it to be clean.

Today was also Cutler’s last day of chemo for the initial round.  This is the time that he is most susceptible to infection, so we are doing our best to limit the visitors and are no longer giving him the number of kisses he deserves.  We had hoped that he might be able to come home for a few days before starting the next round of chemo, but the doctor believes that it would be best to just keep him in the hospital where he can be observed and treated quickly if an infection occurs and so we quickly agreed that if it is best for him there is no reason to take a chance and so he will be in the hospital at least through the next round as well.  Initial talks are that he will undergo two more rounds and that perhaps after the third round we will be ready for a transplant. 

Mason was able to pay a visit today and Cutler’s eyes really open up and smile when he sees Mason walk through the door.  As you can see from the pictures, he is already a very happy boy but it really does elevate when he sees big brother come bouncing through the door calling out his name.  He loves his robot and funky chicken dances and all of the silly faces he makes for him.  We really miss having both of the boys at home, but patience will help us win this battle.