Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, September 24, 2013

T+60 Starting to Count Down

Well we finally are past the half way mark and we are now starting to count down the days until we leave.  As Peyton would say, 40 is less than 50, and 50 is less than 60, and 60 is less than 100!  With the help of the steroids, Coleson's sats are back up into the high 90s.  Though already just 1 day off he is starting to get congested again.  While on steroids he improved every day and was eating like a little linebacker!  We were totally off his G-tube feeds for a few days, however his appetite has slowed down today already so we will probably hook him back up.  As far as the BMT goes, he is doing remarkably well.  He has not had to have any transfusions and is staying in normal ranges.  He is starting to grow the furry hair all over his body...Not even sure he will need the monkey costume I got him for Halloween!  He has been a spitfire on the steroids and talking up a storm.

Peyton has the flu which makes life in this 1 bedroom living area a bit challenging.  I am doing laundry non-stop and spraying Lysol everywhere. Even on Rachel and myself when necessary!  Paul had to go back to Phoenix this week so he is fortunately missing all the fun!  Although he is having his own fun fixing everything that has broken over the course of the last 3 months.  Dead batteries in the car and tractor, broken well, leaking landscape water pipe...   

Peyton continues to crack everyone up around here.  We have had a pretty exciting week. First Rachel's friends Brian and Jenna came for a visit then Grandma and her 3 sisters came and then my friend Christina and her daughter came.  She went to the Mall of America to ride rides 3 days in a row!  She got a bit worried when we put her carseat in Grandmas car.  I had to reassure her that she was not going to grandma's house!  The Timberwolves held a press conference At the RMH announcing ths signing of Ronny Turiaf and we have video of He and Peyton playing ball.  She is enjoying going to gymnastics again though I am afraid we'll have to miss tonight due to her flu.  My co-worker, Dina, has her son In the same class.  We also took Peyton to her first college football game.  The colors were maroon and gold but it wasn't ASU...I can't believe her first game was the golden gophers!  She has said a couple amazing things lately.  First she was telling someone that her brother's curls were all gone.  I thought she meant his hair, though it wasn't curly.  A couple days later she was talking in the car and i realized she was saying "curlers" and what she meant was "hurlers".  It's the first time I've heard her refer to Coleson's "owies" by name.  It's hard for her to understand that he's been in the hospital for so long and isn't all better...for me too.  She also was talking about getting a haircut-yes yet another, her 3rd since the end of July.  She said she wanted to get her hair cut short so Coleson's could come back.  I wish it was that simple.  She is a good big sister!

I have been very busy as always trying to maintain my job, Coleson's schedule, Special time with Peyton and my sanity! Paul and I did get a date night when grandma and aunts were in town.  Though Paul was a bit sick so it wasn't great timing.  I am starting to go stir crazy in this little place and started packing on Sunday.  It's amazing what you accumulate here! And we have been blessed with lots of care packages, cards, stars, etc. along the way.  Good thing we are flying home and Paul is driving home as we will need the extra room in the Xterra for everything.  We hope to be home the first week of November!  Get those flu shots so we can hang out!

Friday, September 13, 2013

T+50 part II Never would have thought...

My mother earned her angel wings 33 years ago after a 3 year battle with cancer.  I never would have thought that on this same day 33 years later, I would be sitting in a hospital room, discussing with doctors and specialists what to do for my son in order to raise his oxygen levels.  Nor would I have thought that any other disease would be even more devastating to me than cancer.   I never would have thought that I would rather be at MRR with the rest of my colleagues as opposed to being here.  
Paul and I were interviewed tonight by the RMH for their yearly promotional video about our journey and staying at the RMH house... I couldn't do it without getting choked up..nor could he!  I did however hold it together to say that fellow Honeywellers were  going to be providing dinner for the RMH on Coleson's birthday, October 4th.  Thanks Janna for organizing.  Please keep RMH in mind when you are considering charitable donations. As I described it, the RMH is "priceless".

Thursday, September 12, 2013

T+50 Still not holding Oxygen

Well, We were back in clinic today and Coleson's Oxygen level is in the 80s...and that's even when he is awake.  They were contemplating whether to re-admit him, just so they can keep a closer eye on him, give him blow by oxygen as needed, etc. They called in a pulmonary specialist to assess him.  He suggested to put him back on steroids for 10 days and Cypro -  some pretty hardcore antibiotics.  I have to stop his g-tube feeds for 3 hrs.  at each dose as it interferes.   They hope by Sunday, he will turn the corner.  If he worsens, they are going to go down his bronchial and clean out his lungs.  I am hoping they won't have to do this as it sounds pretty serious and of course another sedation that in itself is so risky.  Please send us your thoughts, prayers, love or whatever you got!

Monday, September 9, 2013

T+47 Home at last

Well it was a long 12 days but we are finally back home!  On a good note, It did give me a chance to catch up some chic flics!  Peyton and Grandma arrived last Sunday and brought some much needed smiles.  Coleson just lights up when she's around.  Over the past week we were just waiting for Coleson to turn the corner.  He continued to get aerosol treatments and suction isn't ever 4 hrs. Round the clock.  We thought we'd be going home by Friday but he just wasn't holding his oxygen overnight (dropping into the low 80s) relying on blow by air.  They needed to ensure he could hold his own before releasing him.  Finally last night he did.  He dropped this morning but was able to bring it back up on his own.  So now we have 3xs daily nebulizer treatments added to our repertoire!  However we did come off TPN last week so that is a good trade.  His G-Tube rate is 35mls/hr x24 hrs.  He has also eaten a few things over the past few days like French fries, apple slices and juice.  
I think Coleson knows he has to wear his mask now as he didn't fight it all all today or yesterday when we went down for X-rays.  

Peyton and I had some much needed mommy/daughter time this past weekend.  We went to my friend Nicole's cabin in Wisconsin on Saturday and went to a Hopekids carnival at U of Minn on Sunday.  All the gopher athletes worked the event.  Peyton bounced on all different bounce houses, rode ponies, raced cars and met "Goldy the Gopher".  She is glad to be back at Old McDonalds! We started Gymnastics tonight.  Something "Normal" for a change.  

We are over half way done with our stay (hopefully).  We are looking forward to some visitors over the next few weeks.  Rachel's friends are coming next week, grandma and her sisters are coming as well.  Also one of me best friends, Christina, and her daughter are coming late next week.  We also will be saying goodbye to our next door neighbors and their Hurler daughter.  We will be the only Hurler family at the RMH house.

It is the start of flu season so we have to be even more careful.  Anyone who plans on seeing Coleson on thene t year has to get a flu shot.  It's doctors orders.   Another Hurler family who was here in the spring unfortunately did not get to bring their daughter home with them as she caught the flu and could not fight it.   My "Murse" duties call..he's gotten sick 5 times since being home already!

Sunday, September 1, 2013

T+39 Slowly getting better

Well we are still in the hospital although day by day he is getting better. He is getting an albuterol/pulmicort/ativant (Steroids) nebulizer cocktail 4 times a day since Friday. It seems to be opening up the lungs. He also gets deep suctioned after every treatment down the nose and into the back of the throat. I'm amazed at all the sticky goop he regenerates every 4 hrs. As you can imagine neither one of these treatments he enjoys... (who would?!) so we have to hold him down. They tried putting a warm mist high flow nasal cannula on last night but he really wanted nothing to do with it so it came back off. His sats are back up on room air thought we still have the blow by on and near him in case it drops (which is does periodically, especially at night). None of the cultures came b...ack positive for various viruses so they think it is just the common cold, which just proves how fragile BMT kiddos are. A common cold could be life threatening. The fight against the cold led to his lungs getting weak and even more compromised and the capillaries started to close like an asthmatic type of response.
On the positive side, since his vomiting has decreased (only once yesterday morning) I have been upping his g-Tube feeds and I hope we will be able to go home without TPN. Although I still think they rate is way to high. He is gaining weight and getting a bit bloated. I'm hoping the dietician realizes that he never ate this much pre-BMT muck less will eat that much post.
And Peyton comes back today. We could all use a little sunshine in our lives right about now. Coleson especially.