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!

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".

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!

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!

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.

T+36 New Room - Different View

Coleson was re-admitted to the hospital yesterday as the Doctors were concerned about his Oxygen Saturation level and that he still hasn't fought off this cold. They took X-Rays on Monday and the left lung was clear but the right lung was cloudy, indicating infection. They sent us home on a new antibiotic (Levaquin) with which I had to stop his G-Tube feeds for 2 hrs twice a day so the antibiotic wouldn't bind with the contents. I actually thought he and acted better than he has in the past week yesterday. And he hadn't vomited the past 2 nights and not at all during the day yesterday. However, I also thought it would be a welcome break from "Murse" responsibilities as well and some flow by Oxygen might give his lungs a much needed boost. So we settled into our room - seems a bit bare from his original room.. No big banner on the wall, no pictures on the door, no stars decorating his walls. However, I don't intend to stay long enough to make it homey. This room is on the west side of the ward so I get to overlook downtown Minneapolis. I have a good view of the metrodome where the Vikings are playing their first game tonight. The nurse suctioned out his nose and he sats looked good the rest of the day. He had to have more cultures done and a CT scan done. The CT scan showed basically the same thing as the X-Ray on Monday, which is an infection in the right middle lung (bacterial Pneumonia). They have him on a stronger antibiotic now that can only be given in the hospital so not sure how long we will have to stay. I was hoping it would only be a night but his Ox. Sats were awful last night. The nurse had to come in several times to readjust the flow by cup. He was dropping below 92%... he needs to be registering 97% - 100% to release him. They also are starting albuterol treatments and another antibiotic (the docs just rounded so made this change). So I have a feeling we will be here a couple more nights. I just hope we get home by Sunday when Peyton and Grandma return.

Thanks for letting me have my pity party and for all the words of encouragement.  I am doing much better today as I have to be for Coleson's sake.  It also helped to Skype with Peyton a couple times this week.  She gets a little sad when we Skype as she wants to be with us so we didn't see/talk to her the first week she was gone.

Today is also our 5 year wedding anniversary. I never thought I would spend it in the hospital. Paul has been a rock throughout this process, I don't know how he does it. He has a much more positive attitude than I do. It took me a while to find the right one but going through times like this really makes me appreciate him all the more. He is actually flying back form Arizona today, hopefully he can make it back at through all the traffic that is expected in downtown Minneapolis as the Twins, the Vikings and Gophers all have home games and the State Fair is going on just 5 miles away.

T+29 - T+33 Time for a pity party!

Again it's taken me a while to post.   It's hard to keep writing about the ups and downs of this process.  This past week has been a lot of "downs". Coleson can't get rid of his upper respitory infection leading to constant nasal congestion, coughing and vomiting.  He has been put on more meds and we are doing several hot shower "sauna" treatments along with a lot of nasal spray.  He was put on Levaquin yesterday which has it's own side affects and we have to stop g-tube feeds 1 hr. prior and after giving it to him, twice a day.  In addition, his CSA level has dropped which is what fights off GVHD (graft vs. host disease) where the donor cells attack Coleson's immune system, and is horrible to treat and sometimes can't be....

On top of his health, many of our friends have left the RMH to go home.  This is good for them, but sad for us as we are confined to this place pretty much and we rely on the companionship of others to get us through.  With Peyton still in Michigan it made for a quite and lonely weekend.  Paul, Coleson and I took a drive around the surrounding river front neighborhood on Saturday.  I imagined myself living in any one of the Tudor style homes, drinking tea, not having a care in the world.  Then Coleson got sick and it brought me back to reality.  And reality bites!  (Isn't that the name of a movie?  I do my best to stay strong and all your texts, emails, calls, cards, etc. help.  But there are days that I feel sorry for myself and for Paul and for Peyton and most of all for Coleson.  Sunday was one of those days and was the first time I let done my guard to cry since we've been here.  It helps momentarily but not in the long run.  I question and doubt if there is a higher being.  If there is, i wonder why kids and families have to deal with crap like this.  I ask "why me" and "haven't I sacrificed enough."  My mom got cancer before I was 1 and was gone by the time I was 4.  The 3 years in between I barely saw her as she spent most of her days in the hospital.  By age six, my father started dating my step-mom who had a daughter (my step-sister) who has muscular dystrophy and I had a lot of resentment due to how that impacted my life.  (I got over this by the time I left for college).  Then when I was 33 I was diagnosed with complete heart block and now rely on a pacemaker to keep me alive.  And now this.  I feel a little picked on by the big guy.  I know others have had it worse off then my but there are also a lot of people who have not had to deal with shit I've dealt with too!  One of my best friends who also is a special mommy had someone tell her that she will have a nice place in heaven.  It's comforting to think this but at the same time I say screw the afterlife, what about my present life!  I just don't enjoy normal activities like shopping and my time on facebook is mostly spent reading up on other Hurler and BMT families.  And so I found a nice bench to sit on and had myself a pity party.  The party didn't last long as there is not a lot of "free time" in my days and I have to be super mom again.  

Paul left on Monday to go back to AZ for some meetings and I am actually a little jealous.  Not that he has any time to enjoy it, but at least he gets to escape all of the fun here.  It's just been Rachel, Coleson and I.  Now I used to think everything happened for a reason (yet to figure the reason behind Coleson's disease.). But there was a reason why Rachel came to nanny for us when Coleson was born.  She loves my kids and they love her and not many people would disrupt their own life for 4  months and live in the same RMH room without all of us going crazy! she has been a big help and has gotten puked on just as much as I have.  

I hope Coleson's congestion and cough gets better by the time Peyton gets here on Sunday.  He brightens up when we Skype with her and so do I.  It will be good to have her back with us again.    And I hope my pity party ends.   I usually take things in stride but this is a pretty big stride, even for me.  Your support is what agents me through this.