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, November 26, 2013

T+132 The only predictable thing about a BMT is that it is unpredictable!

Am I happy to be home, "yes" for many reasons, is it harder to be home "yes" for many reasons.

I find I am busier at home than I was in Minneapolis. Everything was "contained" in a 2 miles radius there and our nurse coordinator... well "coordinated" everything for us including pharmacy and other doctors appts. Here the hospital is 25 mins away on a good day/time and we have been there multiple times each week including this one.  The first week back wasn't too bad, we had our initial consultation with the BMT Dr.s at Phoenix Children's along with our normal lab work and then had to go back for his weekly echo and repeat labs since some of his numbers were low and we had medication adjustments.  Aggie was here that week with us so it was nice to have her along for those appointments.  The following week we again had our normal Monday morning labs and met with his assigned BMT Dr. but due to low magnesium had immediate IV infusion.  Low magnesium can cause seizures so we also started on overnight magnesium infusions.  I'm such a pro at hooking him up to his IV meds they didn't even need to show me how.  Then again another trip for an echo and repeat labs.  A trip like this is Minneapolis took me an hour tops whereas now it may take 3 - 4 hrs.  Repeat labs still showed low magnesium and now potassium so we added potassium to his nightly infusions.  And we had to follow up with repeat labs on Friday.  Friday's labs showed all his electrolytes were now in alignment (but we still are keeping the nightly infusions of magnesium) but all of his CBC numbers fell; his white blood cells, his red blood cells, his hemoglobin and his platelets.  Not much left in the blood but plasma.  So the Dr. ordered blood and for us to be prepared for infusion on Monday.  This past Monday we had labs, met with the BMT Dr., met with Cardiology for the ongoing pericardial effussion (fluid around his heart) and another echo.  The fluid is still there and maybe slightly increasing but we are done with the steroid treatment so he recommended an ibuprofen regimen along with an increase in Lasix (diurectic). The problem with Lasix is that it has an adverse effect on the kidneys since essentially its purpose is to dry the system out and it also has an adverse effect on the electrolytes.  So can't wait to see what that does to his lab work tomorrow. Actually it is tomorrow already as I did not get this posted yesterday so his numbers are even lower today and he is hooked up.  His blood type has officially switched to donor blood type.  
We will spend 6 hrs getting blood and IVIG, a white blood cell stimulator.   You wouldn't tell from the outside that he is running on such low "fumes" as he is happy and energetic and feisty as ever!  Scratch that, today his breathing is labored and he was restless all night.  He could use lots of prayers today!

 Oh, and I found out when I tried to get his refills at my local CVS, that they are all compounded meds so I have to go to a compounding pharmacy and it took them nearly 3 days to get them refilled, meanwhile he went without a couple of them for a day or so.

I find I miss my RMH family and just being able to talk to the other parents about my day and the challenges and finding comfort in the support that they and that house brings.  We text and keep up on facebook but it's not the same as being with each other in person.  Some of our friends are not doing so well and it's also hard not being there in person to comfort them.  
Paul and I went to the PCH RMH house yesterday to drop off some soda tabs and ask about volunteer needs.  It is much smaller and hotel-like.  Not the "homey" Minneapolis RMH that we were fortunate to stay in.  My Phoenix friends have done a great job at welcoming us home and supporting us here including a mini-welcome home party in our driveway with a sign and balloons, along with organizing a "Take them a Meal" plan, having Peyton over and just simply calling to check in.  Others have helped run errands like grocery shopping and picking up prescriptions, etc.  I don't know how I would do all of it on my own and am grateful for all the wonderful people in my life that continue to help us now that we are home.

Meanwhile, Peyton is having a hard time adjusting to life without 24/7 friends.  She is so social and loves her friends and loves to play (the RMH house was a dream palace for her.. it even had a 2 story indoor castle!) and is constantly asking to go over to friend's house.  The two weekends were pretty packed with Birthday parties including her own (she got roller skates) and visits fortunately but it slowed down this past weekend.  I did get her into a pre-school two mornings a week so that is helping but there are still 8 hrs in her day that she is not with friends.  She blended right in with the other kids at school though.  She had to grow up this past summer much like I had to when i was her age.  She talks about Bone Marrow Transplants, hospitals, X-rays, bones and shots like it is second nature.  She also talks about death and dying and asks what that means.  I learned that the hard way at her age and I hope to spare her the same.

Otherwise we are trying to get our house back in order, we've made to do lists and Paul is doing a good job this week knocking out his items, I am falling short on mine.  We also have lists for when my parents are here next which will keep my Dad busy and happy.  We got our X-mas tree out and up this past weekend and put on the Christmas music!  Normally I don't like to do this prior to Thanksgiving but we have 1 less week between the two holidays this year and it just felt like we could use that extra joy this year.

Lastly, two people close to me lost their own children in the past month (not from the RMH). One who's child went through a similar (but not the same) journey as Coleson and another very unexpectedly. My heart goes out to those parents and families and their loss hits me extremely hard.  I have tried to prepare myself for that possibility, repeatedly every time we face a new challenge, and it really is unimaginable.

This may seem like a somber post but actually I am doing OK.  Is it extremely difficult and tiring, Yes, but I am surrounded by lots of wonderful friends who continue to stand by my side and for that I am grateful.