Thursday, 20 June 2013

Body Bags and Children Don't Mix

I'm not too sure how to write this post or rather how to start it I suppose.  It's been an interesting ride the past day and a half.

Home sweet Home
The short of it is that B is home, we came home yesterday.  He is doing 'okay' at home but it was a very rough day to say the least (more to come later).

The reason I didn't write a post last night is because something took my breath away yesterday and it's taken me this long to even start to recover.  I'm not sure why it has affected me so badly but I've been badly shaken and rocked emotionally.  

Yesterday afternoon I was just casually staring out of B's window (like every other day) overlooking the cafeteria and loading bays down below.  As I was staring into nothingness I started watching two men with a stretcher.  It is then that I should have stopped and walked away but it is like a bad car  s l o w  down to process was a body bag.  A child-sized body bag being taken from ACH and loaded into a van.  Now I'm not daft, I know people die in hospitals but people please, I just wrote about how positive a hospital experience can be.  I am not naïve, I know people that have lost their children but I was so shaken to my core to see that smaller body bag that I can't even find the words to describe it to you.  It was simply, purely horrific and devastating to see.  I've replayed it over in my mind repeatedly and each time I feel a punch in the gut knowing that there were parents in the hospital with us that are s-h-a-t-t-e-r-e-d, broken, never to be whole again.

I am aware that children die at ACH, of course they do.  We've been oh so very close to being those people ourselves with Mr.B but for some reason in my head and in my heart children should not be in body bag, never, just should not.  I know it might be a bit hard for some of you to understand why I would take this so hard and I wish there were words to describe it.  There is so much wrongness in a child dying to begin with that I've never stopped to think of all the other 'stuff', the other parts that play out.  I honestly wouldn't have been nearly as disturbed to have seen a coffin instead of a body bag...there just seems to be more safety and security to a coffin.  I don't know.  I've cried a great deal of tears in the past 24 hrs for a child that I most certainly never knew or their family for that matter but more for the injustices of life. 

That being said, I've also had a hard 24 hrs with Mr.B too which doesn't help with my already overloaded stress levels.

My afternoon didn't get much better yesterday when B's Nurse came in to tell me (with so much regret) that we were being moved out to the 'procedure room' because another child needed B's room. 

The 'procedure room' on the Unit is just that a small, windowless room that is very basic (no bathroom, storage, or a place for the parent) and used for simple procedures or last minute patient storage.  It certainly does have a door and therefore offers some sort of privacy but it is certainly not a 'happy' or comfortable room to be in (or quiet, it is next to the automatic doors) to the staff elevators).  My immediate thought (that I voiced out loud) is that we'd just go home then.  Allison (our Nurse) told me that she advocated for us and that I should think about it.

Heading home (thank you Student Nurse Kelly!)
I was already upset and feeling incredibly anxious after watching the happenings out of B's window that I just felt all of the sudden so overwhelmed with all of it...with life...with B's never-ending GI issues...with having the big boys there with me making noise (being kids) and driving me nuts (overstimulated).  I just started to cry, I tried so hard not too but I was d-o-n-e.  Ashley, bless her kind heart, noticed I was sliding downhill fast, grabbed the big boys and took them for a walk.  Unfortunately Torin noticed I was upset and repeatedly asked me why (my tears are very upsetting to him).  I placated him the best I could until Ashley left with them and then I went into the bathroom for a good, snot down the face, puffy eyed, shoulder shaking cry.

The frustrating part is that I had been wanting to take him home, fighting to take him home even and finally conceded defeat realizing that it was just easier to stay in a few days longer.  Dr.Volmiero and I had had many, many discussion earlier that day about the best course of action and plan of attack regarding B's feeding.  I was simply so far past frustrated with having finally come to a conclusion that we'd stay till Thursday and give the feeds a few more days and THEN they say we are being moved.

I realized at that point that I really was so far past my stress breaking point that taking B home was really the only option for me, for us, and for B.  (I didn't make a decision that wasn't backed by the Dr. by the way, it was always an option, I was just trying to do what was best at that time and stay)  So I started to pack.  I told Allison with much sadness that we'd just go home, it was easier and I'd feel better.  I had no desire to sit in a little windowless room for at least 8 hrs a day for the next few days and watch B be miserable.  There are no hard feelings at all in regards to the decision to move had to be done, they needed the space and B was the healthiest kid to executive decision, that's all.

Dr.Volmiero came rushing in (she'd been paged) apologizing, and took one look at me and I started to cry again.  (Keep in mind this is the Dr. that 'Coded' B so she and I have seen some rough times together but I don't know if she's ever really seen me cry)  I had to explain to her it wasn't really the move it was seeing the body bag and then the move on top of that.  She gave me the biggest hug and asked me many many times if I was sure about going, and assured me that we'd make it work. 

She was fine with my decision to go and fully supported it and we decided together that I would take him home on a 'pass' meaning that if anything were to happen I could simply come back 24/7 to Unit 2 and they'd have to house us.  You might have remembered we've been out on pass before, it is something really great that they can offer you if you need that 24 hrs to realize you can make it on your own.  Dr.V even said she'd come to us if we needed her.  I would never ask that of her (this is a woman that is constantly needed in 16 places at once and she's a damn fine Dr. through it all) but it was so very kind for her to even say it.  She assured me she'd call us (and she did) and that I could call and have her paged anytime.  Did I mention I love it when she's B's Dr. on Unit?

Off we went after much fandangling with all of our stuff, three hungry kids and a sad heart. 

Playing on Ry's bed
The positives of yesterday were that we got into Seating Clinic, (thank you Colleen for giving that email) and got Mr.B's high chair refurbished (again).  It was a matter or removing some of the supports that they'd added last time and making some new ones so that he's fully supported.  For those of you with kids that can sit on their own, unsupported, you'd be amazed at what is involved for those that can't sit.

We had also brought in our stroller to be assessed at the same time (it hadn't been done yet).  I kind of had the idea in mind already that we were going to have to look at other options for the stroller just knowing how unsupported it was.  I had actually discussed it with Colleen (our previous PT through Home Care) when she stopped by for a visit on Monday.  I has asked her about options and admitted that I was well aware that B may not walk for several more years to come.  We discussed wheel chairs but there are also 'stroller' options available as well.  It is essentially a very cool, supported seat that you can put on a stroller base or a chair base (of sorts) for therapy uses.  I won't post much more about it until we have our appointment to see the different styles and make our decision.  What I will say though is that the seat part is covered by ADL (gov't Disability funder) after we pay our $500 portion BUT the base(s) are not covered at all and run at least $1200 to start for each.  Ouch.  We might just be seeing a fundraiser in our future, I'll keep you posted with what we come up with.  Apparently some people have had much success with approaching corporations looking for donations but we thought we'd do something with a personal touch for B maybe...I'm really not sure, I'm having enough trouble formulating sentences at this point.

Which brings us to today...did you want to go get a snack??

Mr.B had a decent first night at home, I was only up with him 4 times (which is stellar in my home).  Michael started him on his new feeding schedule at 6 am and his first feed was a full feed run over two hours.  B woke about 7:30, was crabby but otherwise good.  He however was not cool about being put in his carseat to take the big boys to school.  I think he thought that he was going back to ACH maybe!

Ashley got rained out of her job at the Golf Course so CFS was SO SO SO very kind to let her assist me for the day and man, did I need assistance.  We ran B's second feed at 10 am and it was a small one of only 175 mls over an hour and 20 mins...he should have been able to handle that.  He was sleeping through the first hour of it and I went to lay down but didn't sleep as I heard him fussing with Ashley shortly after that.  I still laid in bed, knowing that he was in good hands, but knew I couldn't sleep.  I got up and Mr.B was snuggled into Ashley on the couch and she said she couldn't put him down, he was miserable.  She said he woke screaming and was refluxing through the last 20 mins of his feed.  I took him to vent him to see if I could get some relief for him and when I vented him he seemingly got worse, not better.  Twice over the past few days he's screamed and rolled onto his side into the fetal position when he's being vented....scary.  Mr.B also only cries tears when he's in actual pain, he had tears streaming down.  After taking out a whack of feed (not to bore you with numbers) I got a decent amount of air out and I tried to get the feed back in.  As soon as I would put any back in (same as yesterday too) he would scream again.  Feed out, fine...feed in, scream.  I finally gave up at trying to get the 90 mls in and asked Ash to run him a bath to try to soothe him.  His intestines are so very sensitive and he always is seemingly in some sort of pain or discomfort with them these days (months).

Ding Dong! A favourite toy
The bath certainly helped distract him since he'd not had a 'proper' bath with his bath seat in two weeks.  He got to kick and splash up a storm!  His joy (and ours).  He was somewhat better after his bath but was still 'off'.  I had called to page Dr.V since when I'd talked to her when she called in the morning, everything had been going well.  I got transferred through to our Nurse Practitioner instead (Dr.'s right hand if you will).  I explained the situation, about the venting and the inability to get the 90mls in (he only got 85mls of feed total).  She explained that when I vent I shouldn't be pulling out feed that he can't handle the volume when it goes back in....long story short, I've been venting this kid for a year and I know how it works for him, it may not be the 'taught' version but it's worked for him (which is all that counts).  I ended up being very frustrated and felt somewhat talked 'down' to so I ended our conversation in tears.  Of course I got asked 'why I was now teary' and I simply expressed my exhaustion/frustration.  (I'm not generally a crier so I've kind of thrown everyone off the past two days).  It's certainly not the case that the NP doesn't care, I know she does, we just generally have differing opinions on treatments and such.  She's very clinical and practical and I'm, well I'm the Mom and make decisions accordingly.  Anyhow (this is the short version??), I ended up simply being more frustrated with it all. 

Ashley and I plugged along, meaning I was a stressed out mess on the couch and she cleaned for me (I LOVE HER).  Thankfully my girlfriend extraordinaire Lorna showed up with a 'picnic' lunch for us of sorts and gave me a nice distraction. 

So as to not make this the longest post to date (and the power could go out at any time with this crazy rain/thunderstorm), I will simply say that after much discussion (both with Dr.V and the NP on speakerphone and then again with Dr.V tonight), we are staying put at home for now.  I still have the option to go back in if we need to and I will reassess with Dr.V in the morning again.  B's feeds have gone better tonight but certainly not great.  Keep in mind, if I have to run five feeds a day over two hours each and he is only up for 10's hard.  He does get his first and last feeds generally when he's asleep which makes life easier but there is still 6 hrs in his day when he, a toddler on the move, has to be strapped to a sucks.

My positive end is that we ARE home and it is pouring, simply pouring sheets of rain that are cleansing to my psyche and my mood.  I love Calgary weather (as long as I'm not changing a tire on the side of the road in it. Been there, done that).

Perhaps I should put your names in hat for a door prize if you were able to make it to the end of this post??  Really, thank you for slogging through it, you're a trooper!

The laugh for the day...this is what happens when Mom isn't around
much for two weeks (and I sent him to a b-day party)...."they aren't
wings Mom, they are cool 'fire feathes'"...I feel waaay better now!

From Our (Stressed Out) Home To Yours...