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.

Thursday, August 29, 2013

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.

Tuesday, August 27, 2013

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.

Wednesday, August 21, 2013

T+23 - T+28 "Murse"

Though it's not a title I envisioned ever having, Murse (mom/nurse) is a title I proudly bear.  The time between my previous post and now is indicative of how busy life is being out-patient.  Let me just run through a "typical" (our days are anything but) day.  Warning, the below is not for the weak of stomachs.

Wake up before Coleson, give him first med (anti-nausea).  This entails stopping his G-tube feeding and then restarting it.
Hope he doesn't get sick, draw other meds (started with 13, now down to 8).  
Wait 30 mins.  Start to give more meds - the order changes on the day.  Start/stop G-tube.
Hope he doesn't get sick.  He wakes up.  He gets sick.
Examine vomit to Determine what meds he has thrown up and cause for vomit.
Decide whether any of the meds need to be re-given (possibly call BMT fellow for guidance)
Give more meds.  Hope he doesn't vomit.
Change diaper - analyze contents to determine how "loose" it is.
Unhook TPN feeding.  Flush and Hep lock his line.
Give remaining meds.  
Wash bedding
Go to clinic for blood draws, analysis for med/feeding changes/transfusions (fortunately only enzyme thus far - no blood or platelets needed yet).  Only needing to go twice last week and twice this week so far.
Repeat morning med routine in afternoon.  Inclusive of analyzing "output". Make decisions.o
Get TPN out of fridge to warm up.
Change out G-tube feeds.  Determine what rate to administer it.  He is at 20mls/hr during day and 10 Mls/ hr at night.  Needs to average 20 Mls/hr continuously to stop TPN which I really want to stop.
Repeat morning med routine in the evening.  Analyze output.  Make decisions.
Mix up his TPN.  This needs to be done in sterile environment and includes injecting vitamins into his prepared electrolyte bag and mixing in his lipids.  
Hook him up to TPN.  Take temp prior and 1 hr after.
Sleep a couple hours.  Determine why Coleson is restless. Do a number of things to prevent vomiting: Stop his G-tube feeds, vent his g-tube, drink water, Wait.  re-start G-tube, perhaps Slow down G-tube rate.  Wait.  Repeat stopping/venting/waiting sequence.  
Coughing starts and then vomits.    Clean us up, go back to sleep for a couple hours, repeat previous sequence.  Sleep a little longer and then repeat the day.

Thankfully, Rachel is here to help me with giving meds, taking care of him during days/evenings so I can sprinkle in work time and of course Paul is too.  He helps at night when he vomits.  Coleson developed the coughing/congestion that I have from the RMH and that is primarily the source of vomiting.  The drainage just runs down his throat to his stomach. 

And fortunately, my sisters took Peyton back to Michigan with them after their visit here this weekend.  It was a last minute decision and I hated to see her leave again, but it was the best decision for everyone.  She will have more fun with her cousins and we all need to focus on Taking care of Coleson right now.  I just hate that we are in this position where it his is the case.

Otherwise Coleson's numbers are great at last check and he is his playful, happy self most of the time.  We also got the engraftment results and he is 100% donor cells for the newest produced cells and 90% for the longer living cells - which mean 10% are still his but those will hopefully die off soon enough and be replaced with donor cells.  


Thursday, August 15, 2013

T+22 Farewell Room 4138!

Farewell Room 4138
You really did treat me great
32 days and nights
I gave it my best fight
I really can no longer stay
It's time for me to run and play
With Peyton, my big sis
It is her I truly miss
Thanks to all the nurses & assts., you all were great
For taking good care of me, I really do appreciate
All the diapers, meds, blood and tears
And for putting buttpaste on my rear
And to the PAs, Fellows and Docs
Let me simply say, you all Rock!
Dr.s Orchard, Lund and Miller
This BMT is really killer
Because of you, I am a new man
I promise to do the best I can
To get back in action fast
And to make this new marrow last
Don't forget my personality
Or my love for Umi Zoomi
Don't be sad to see my go
Just remember my warm greeting, "No, no, no"
Room 4138 it's time for me to say goodbye
It's bittersweet, I won't lie
It will be a little scary to go
But it's time to go make these cells grow!
Thank you University of Minnesota - Amplatz Children's staff!

Nurses:  Deb, Linda, Anna, Em, Katie C., Rachel, Tracey, Erin, Ashley, Gretchen (who gave me my donor marrow at 1:42am) to name just a few.  I didn't create a special Care team as you all were great.
Nursing Assts; Sarah, Danielle, Paige, Sartu and others for the baths, dressing changes and everything else you did to make my stay comfortable and safe.  Though you treated me well, I hope I don't see you again.
Chaplain LaDonna for blessing me.
PAs/Fellows/Pharmacists, Dieticians, Social Workers and the others that rounded every day; Sarah, Hillary, Luis, Marie, Maggie I am sure I'll be seeing some of you at the Journey Clinic over the next 78 days.

And of course to the amazing BMT Drs. that specialize in my rare condition, Hurlers; Dr.s Paul Orchard, Troy Lund and Wes Miller. 

Wednesday, August 14, 2013

T+20 Time flies when you are having fun!

And Coleson has been feeling pretty good (relatively speaking) for the past week so he's been out of his bed a lot during the days. To catch everyone up, his WBCs continued to climb to probably his "normal" level of 6.7 so they took him off the IVGH (or something like that) which is the drug to increase cell production. He was expected to fall back after that, which he did to about 4.7 which is still really good. He back up to the 5s now. The only thing really keeping us here is getting him stable on his G-Tube feeds in combo with his IV feeds. He is on the lowest dose of IV feeds (TPN) and is at 10mls/hr on G-Tube feeds. Eventually they want him up to 45mls/hr. I think he will eat regular food before then. He wants to drink water all the time but ends up throwing it back up if you give him more than 1oz at a time. They probably would have released us today but since he needs his enzyme replacement tomorrow and I need to get trained on how to become a nurse (not quite!) to administer all the drugs, TPN and G-Tube feeds. So that will all happen tomorrow and hopefully by tomorrow night we will get released to spend our remaining 80 days at the RMH. We will have come to clinic every day (labs, transfusions, etc.) so it really won't feel like we have been released.
Peyton has been having fun with her best friend at the RMH (A), but she was admitted for her BMT today so I think she will be really excited to have brother home with her. Although, he won't be able to be in the general public without a mask on and I don't know how much he will get out of the room. While the weather is still nice, I'm sure we'll take him out in the stroller.
We are looking forward to this weekend as my sisters and their families are coming for a visit. Peyton will be so glad to see her cousins again. Also we are looking forward to another Hurler family to arrive for their 2 year post BMT check ups. The mother has been a huge support system for me and it will be nice to meet her in person. We also will be saying goodbye to another Hurler family that has been here for the past 6 weeks for hip relocation surgery. I will miss them greatly as our boys are most alike. (And our girls are too from what I hear about her's). Hope the next post will be from the RMH...

Thursday, August 8, 2013

T+15 Out and About

WBC = 6.7
Neutrophils = 5.2

Coleson is progressing so well that he got to go out of room today (just into the hallways of the BMT ward). He actually got the OK yesterday but ended up sleeping most of the evening. He didn't like his green mask at first but his eyes were wide open as we cruised past all the nurses stations. He also continued to drink from his sippy cup (although gags most of the time) and walked, sat in his red chair and played basketball. He was smiling and trying to talk (but his voice is too raw yet). We lessoned his morphine again and they are changing his TPN (IV Nutrition) so that we can try to start G-Tube feeds tomorrow. I really hope we make it out of hear off of TPN, although most kids don't.
Peyton and Rachel went to a huge farm today with the RMH kids. Peyton sat on horses and donkeys and had a ball. Both Paul and Peyton were big winners at Bingo tonight too. I got some much needed work done and got a chance to speak with many of my employees today.
We did get some sad news that one of Peyton's best friends here who is awaiting a BMT, her donor backed out today. It is a risk I worried about constantly right up until the marrow was hung on Coleson's line. They will revert to using Cord blood instead but it is not as close of a match. Please pray for N & A tonight as they need your prayers more than Coleson at the moment. N is here alone with her daughter and I can't imagine not having my whole family here with me during this process.


Wednesday, August 7, 2013

T+14 Rock Star Coleson!

WBC = 3.3
Neutrophils = 2.4

It is a beautiful day here in Minneapolis. We had Thunderstorm and golf ball size hail last night. Coleson keeps impressing the docs with his counts. He is at the levels where he can leave his room with a green mask on and roam the halls of the BMT ward. He can't leave the ward yet but hey, he hasn't seen the outside of his room for 24 days so that is progress! He also has got his hearing aids today. He doesn't like his ears messed with so I'm sure it will be a challenge getting them on everyday but he will eventually get used to it. He only has mild hearing loss but it is the high-pitched sounds like "Shh" which used to calm him so much as an infant. I'm so glad he will hear this sound again. He also sat up in bed by himself and played with OT and speech therapy. PT came in late in the afternoon to play with him but he was bit tired and "feisty" by that point. He pointed today to his sippy cup and actually took a drink. He gagged a bit on it but the fact that he took a drink was impressive (since he's been on IV feeding for the last 2 weeks) and you might not have realized but before BMT he couldn't (or didn't) point with just his pointer finger. I think all the time he has spent watching Umi Zoomi on the IPAD has really paid off (along with the BMT of course!). He is learning how to use his pointer finger without the rest of his fingers. He is getting a transfusion of IVIG (infection fighting hemoglobin stuff) tonight as his levels are still a bit low and Paul now is on the z-pack as well since he woke up with sore throat yesterday and today. Peyton continues to have fun with friends, today was Disney day at the RMH

Tuesday, August 6, 2013

Day T+13 Coleson is a champ!

His WBCs are up to 2.0 already and is Neutrophils are up to 1.5 which means he is making marrow. All of his VOD indicating stats are down so I am no longer worried about this. His fever is down. His weight is down a little as well. We just decreased his morphine (they have to reduce this very slowly), so hopefully he will be more awake. He did have about 20 or so minutes of play time with the therapists but otherwise is still sleeping. The Dr. thinks he doesn't need the morphine for pain anymore so it is just making him sleepy at this point. The most worrisome part now is his mucositis and making sure his airway clears up. He is still breathing noisily but is Sats (Oxygen saturation level) are between 94% - 98% and his heart rate is down a little as well. Hopefully those WBCs will start taking care of his throat so he can breath quietly again.

In other news, both Peyton and I are on antibiotics for our coughs. The Dr. scared me with thinking I had whooping cough but no one else thinks so. Peyton's labs came back clean and my lung X-rays were clean as well but whatever is making me cough should be covered by the z-pack (unless I have another pacemaker lead that is intermittent). I hope to get my EKG results back by Thursday.

Your prayers are working so please continue to do so.  We can feel the love and support worldwide - literally we are getting letters & cards (and Stars) from friends and colleagues as far away as Singapore, China, Germany and India.  We have hung up each one in either Coleson's hospital room or our room at the RMH depending on where you sent them.  Our walls are covered making beautiful murals. 


Sunday, August 4, 2013

T+11 Growing Cells (and fevers)

Good news today. Coleson's WBC is at 0.6. Amazing jump up. We don't know for sure if these are the Donor cells or his own but we assume they are donor cells reproducing. We won't know for another 10 or so. His Neutrophils are at .4. These are the body's first line of defense in fighting infections. They destroy foreign bodies. Neutrophils have to be at 0.5 for 3 days in a row for him to come out of his room (with a mask of course).

On the flip side, his fever won't break. It's oscillating b/w 101 and 103. We have stopped giving him Tylenol for a while as he has been out it non-stop for 2 - 3 days. He doesn't appear to be in any pain and since fevers are normal reactions after BMTs, we are giving his body a break from at least 1 med. He is on a couple antibiotics including Vancom
ysin and his blood cultures haven't started growing anything. His blood pressure and heart rate are both up. So of course, he's on more BP meds. His Oxygen saturation level is between 95 - 99% so at least that's good.

My concern now is mostly around VOC (venous occlusive disease). This is where the liver gets small clots in it and can't filter them out. This can be very serious and has taken the lives of other Hurler BMT kiddos. The Drs. don't seem to be concerned yet about it but as a mother, I am watching all his stats closely, making sure he is peeing, and that he isn't turning yellow. They are giving him a second dose of Lacix (a diuretic) so he continues to pee. His Bilirubin is high at 2.5, platelets and RBC are low at 11 and 3.32 and hemoglobin is low at 9.0. His creatinine is low at .18 but not out of range yet. I know you might now understand all these numbers (and these are only a few of the daily stats I get) but am writing them down for historical purposes.

He is sleeping most of the time now and again doesn't appear to be in pain but I can see it in his eyes that he just wants to feel better. The WBCs will help so I pray they continue to climb and that his other VOC indicating parameters look better tomorrow. Please help me pray for him.

Friday, August 2, 2013

T+9 The Storm Hit

Right on schedule, the "storm" hit yesterday.  They said the roughest days are T+7  thru T+21 and as if on cue, the mucositis (chemo strips away the lining of mouth and GI track leaving sores and swelling), the drooling, the vomiting, the chills, fevers, shakes.  Yesterday was T+8 but technically, it was only 7 days after transplant considering his transplant got delayed until 1:42am.  His breathing is loud and labored.  He is retaining fluids a bit.  Not his best picture day today.  Good news is that is WBC count went from <0.1 two days ago to 0.1 yesterday and today.  He eventually needs to get into the double digits so you can see how far he has yet to go.  He's not able to do much at this point but cuddle and sleep and watch Umi Zoomi.  Despite all this, the Dr.s say he is doing very well.  It makes me feel for the families who have it worse than us and appreciative and proud of how strong he is. 

Peyton is off with Janna and her grandkids at Como Zoo. We are trying to keep her away from the hospital until brother looks and feels better.  She is having so much fun with the kids at the RMH that I don't think she wants to come anyway. We are planning on going to the Minnesota Zoo on Sunday with Dina.

I was very fortunate to have my 3 best friends from college (Michigan State) here for a quick visit.  The timing was perfect as it gave me a good bump of support right before the hardest part.  Not sure how much I will want to leave him over the next couple weeks.  Though Rachel (our nanny) has been a big help trading off watching Peyton and Coleson.  Paul of course is capable too but he does better at playing with him and right now he needs more cuddles than play time.  It's best to have him stay with Peyton.