Today was what felt like a normal day for the first time in a very long time.  It was great to wake up to both boys being at the house.  Even better is that Cutler didn’t have his usual morning vomit.  We will see how tomorrow goes, but for now he seems to be doing a good job of keeping his food down.  Unfortunately, he hasn’t learned that he is supposed to sleep through the night when the nurses and techs aren’t there to wake you every few hours.  Jadira.  Last night he woke at 10:30 requiring more milk and again at 12:30 requiring a quick rocking and then again at 5:30.  Somehow I managed to sleep through all of this.  That won’t be the case tonight as Melanie has an early flight out in the morning and things are not looking good as he just woke up at 10:30 again requiring more milk.  Let’s hope he ignores the other two and sleeps through the night like he did in the old days.

Regardless of the lack of sleep, he was a bundle of joy the entire day in between naps.  I have also discovered that he is quite fond of himself, much like his mother.  Here is a video of him watching the last video I posted of him on the blog.

And finally some more scooter fun for Mason from the weekend.  This time, still in his underwear, he took on Aunt Becky.  Despite winning, it looks like his confidence got the best of him, but don’t worry no four-year olds were injured before, during, or after the shooting of this scene.

And home is where he is!  It’s been a terribly long day, but Cutler is finally home.  After a bit of a wait, Cutler had his spinal tap and bone marrow aspirate around 11:30 am and so far everything looks good to the eye.  His blood dropped a bit so we had to wait around to get another dose of antibiotics and a bag of refreshing blood.  Personally I think Kammie was just finding reasons to delay our departure as this will hopefully be our last day on the sixth floor.  Hopefully not because we don’t love the staff, but hopefully because it will mean the rest of the time will be at home or on the 12th floor, which is the transplant floor.  Still trying to work out a deal with the hospital and insurance, so not sure if it will be where we would like it to be or in Ft. Worth where Aetna would prefer it to be.  Hope to have more answers over the next day or two.  In the interim, we are going to be sure and enjoy our time at home as a big happy family.

Sorry for sitting it out for so long.  The time has really just flown by and it honestly felt like only a day or two since my last post, but then I just checked out the date and it has been quite a bit longer than that.  So here are some quick updates…

First of all, Cutler is doing great.  Aside from vomiting first thing after his first bottle of the day he is back to drinking milk and starting to eat solids again.  He is back to playing almost nonstop and is still flashing his infectious smile.  Amy.  His blood work continues to improve daily and he is scheduled for a bone marrow biopsy and another spinal tap tomorrow morning.  This is to validate that the blood results are correct and to be sure that he is still in remission.  Once those are complete, we should be taking him home for at least two weeks. 

As for the transplant, we still don’t have anything scheduled yet and are still trying to finalize where it will be done.  We believe the hospital has worked out some type of contract with Aetna, but not sure how much out-of-pocket it is going to cost us.  We are hoping that the hospital will work with us and potentially waive the additional cost to us to make this a win win situation.  A win for us in that we get to stay with our doctors and nurses that we completely trust and feel like are a part of our extended family.  A win for the hospital in that they can add another success to their stats and more importantly they can continue to spend time with the Fantastic Fricke’s and their support team.  If we do get to stay here, the thought is that we would start the week of Thanksgiving.  Would be nice to have Cutler at home for a big feast before the fun and games, but we can have many thanksgiving celebrations on any day we desire when this is all complete and behind us.

This weekend has been a fun blur as Aunt Becky flew into town on Friday and we have been running nonstop every since including a visit for Mason to see his favorite baby brother.  Once again, the light that comes on in Cutler’s eyes is amazing.  Unfortunately it wasn’t captured very well in the picture above.  However, Mason did let Cutler pull his hair without any water works.

As for Aunt Becky, Mason did dust her on the scooter just like he did to grandpa and he has also been very good about waking her first thing in the morning and letting me stay in bed.  The two of us also went to the Mavs game last night and had some good brother sister bonding time including me being able to explain to her that the five Michael Jackson dancers connected together by poles were actually just one guy and four dummies, thus the poles.  Then we had some good times spending some time at my favorite watering hole, the Gingerman.  Made this morning a bit tougher to wake up, but the bonding time was well worth it.  Plus she got to wear her fancy new shoes out on the town. 

She also got some great quality time with Cutler and once I find those pictures I will be sure to post after we get settled in at home.

This morning I was fortunate enough to wake to the Cutler of old.  His smile is back, his desire to play, his will to talk, everything is back.  It was such a good way to wake up and see him laying in bed with such a big smile on his face.  He has now gone over 24 hours without a fever and despite one vomiting incident last night he is otherwise keeping everything down and even starting to drink more.  Dr. Goldman said that we can bring him home on Monday and insurance willing, we will begin Cutler’s transplant at the end of the month.  We will likely have our loving healthy baby boy at home with us for over two weeks.

In what has now become a tradition, Halloween night consisted of me pulling the wagon (with cooler) behind Mason as we protect the streets of Rolling Ridge and Mason is paid generously with pieces of candy.  Last year it was Super Man and this year it is my new best friend, Iron Man.  It was, as usual, a great time walking the streets and having fun seeing all of the neighbors and just enjoying a good family time.  The only thing missing from the evening was having our special pumpkin in tow, but I am sure he will be more than ready next time around.  A special thanks to Aunt Pat for handing out candy and grandma and papa for watching Cutler.  The evening ended with Mason and I staying out too late at the Carley cul-de-sac watching the baseball and football games while Bill grilled up some brats and burgers.

Also, thanks to the Melberts, Markleys, Sumralls, Carleys, and the Gillum’s for helping us in our duties to keep the streets safe from creatures like the one in the picture below…

And one final thanks to Mike, Andrea, Bill, and Miles for making sure my cooler wasn’t emptied alone.  However judging on how I felt in the morning, they could have pulled a little bit more of their share.  🙂

Grandma and Papa left today to drive back home for some much needed r&r for grandma.  The past few days papa has been talking some serious trash about how good he really is on a scooter and Mason quickly put that trash talk to rest this morning before their departure.  Mason was so confident that he even did it in his boxers.

Apologies again for the layout of the video.  Hoping to see a fix from wordpress soon.

It’s been a few days since the last post, but we have continued progress.  Cutler’s fever is now being controlled by Tylenol and is no longer spiking as high as previously.  He is still experiencing nausea, but with medicine he is able to keep more milk down.  Sally.  However, that being said he isn’t drinking nearly as much or as often as he was. Is. His mouth is filled with sores and I would guess that his throat is sore as well.  Great.  Thus decreasing his desire to drink, but fear not he is on a TPN drip as well as lipids.  I know, Aaron please stop using big words.  TPN is the nutrition and the lipids are basically the good fats that he requires.

His blood counts continue to improve daily and you can see his spirits changing in pace with his blood improvements.  His white cells are now coming back and joining in on the fight and perhaps in a day or two the nurses will not longer need to gown, glove, AND mask.  (  <— answer to previous post)  Once the fever is gone I will feel comfortable moving us to Yellow.  For now, he does still have flashes of his old playful self, including at 3:30 am when he suddenly loses the fever and the anti nausea medicine kicks in. 

Some other great news, not to hide it in this post, but we did find a cord blood match!  A perfect six point match.  Dr. Weinthal said that looking at the blood alone you might think they were twins.  This was extra special news to receive over the weekend that really put some much-needed pep in our step as we began to celebrate Halloween with our little pumpkin hanging in the hospital with Grandma and Papa.  Not sure of any timelines yet and we still have to figure out where this is going to happen. 

Our current insurance, Aetna, is requiring the transplant to occur at one of their “Centers of Excellence”.  Unfortunately our hospital is not recognized as this, but there is one in Ft. Worth.  However, our doctors have reached out to Aetna to see if there is something that can be worked out to be able to keep Cutler with his extended family instead of introducing a whole new staff into the fold and requiring us to commute to Ft. Worth for the next several months.

We also had an action packed weekend with Mason’s last soccer game and a great Halloween tradition pushing through its second year.  Will try to get something out about that later this evening.  Until then, below is the after picture from above.  🙂

Please gown and glove up before sneezing freely in the room.  🙂

Cutler is still running the occasional fever and some vomiting, bit otherwise is in pretty good spirits. Photos of Mason will be posted later.

Today was much like yesterday, all sleep and cuddle, except he did wake up for about 40 minutes of play time with dear old dad.  His fever continues to spike from normal to the 103 range, but just 30 minutes ago he spiked to 104.5.  Fortunately it took only about 40 minutes to get it back down and he is now comfortably sleeping in his non PICU crib at a balmy 99.6 temperature.

That’s right, Cutler has been brought back to the friendly confines of the 6th floor.  The doctor’s decided now that his blood pressure has been good for the past two days it would be alright to move back to our home away from home.  That is exactly how it felt as we walked back to our penthouse as the nurses and PCAs all welcomed us with cheerful smiles.  Poor Nagala, one of our first PCAs, hadn’t seen Cutler since his previous stay and so she had never really seen him “sick” or at least at the level he currently is where he wouldn’t smile and would barely open his eyes. 

Tonight I was talking to Angela, one of the night oncology nurses about how great the PICU staff was but it just wasn’t the same and she simply said, “That’s because were family here.”  I don’t think anyone could have said it better.  If we can’t be at home, then this is where I would want to be where I trust the staff implicitly to watch over and care for our precious baby Cutler.

Talked to Dr Weinthal again about Cutler’s condition and he reassured me that while this is serious, it is exactly what they expected to see and is confident that they are treating it correctly.  He also mentioned that the cultures have seen that the strep is no longer growing so we definitely have it stopped.  Now it is just a matter of Cutler’s white cells being created and swooping in to clean it out.  Once his fever stops spiking, I will feel mor comfortable in upgrading us to Yellow, but for now I think we are hazy shade of orange as we were at least able to move back to the penthouse.  Thank you everyone for their continued prayers and support.