Sunday, 6 January 2013

Season of Love, Hope and Hospitals

Our Three Mistle "Toes" of the Season!

November was a month of celebration and fun with having the Sister's all visit and Mr.B turn one. It was seemingly a busy month but was nothing in comparison to December!

Rotary Flames House Weekend

STARS Helicopter
We started December out with our first official 'sleep over' at the Rotary Flames House. The plan was to check B in on a Friday and I would spend the night with him and Michael and the boys would join us on Sat and stay that night. I checked B in and got all set up, the family room was simply beautiful and well geared to our needs. I picked the boys up from school and asked if they wanted to go on an adventure. Torin has been going on and on about Ronald MacDonald House in Edmonton ever since we stayed there so I knew how happy he'd be to be able to explore RFH. Both boys were very disappointed when I drove them to ACH as they thought B was once again in the hospital. I explained that we weren't going to the 'actual' hospital and pulled out outside RFH (which is across from the hospital). They were instantly excited! Torin was beyond excited to learn about the fact that there was an elevator, two Panasonic microwaves in the kitchen and, most of all, a Panasonic microwave actually in our Family Suite (not to mention two bathrooms)! Rylan was enamoured by the fact that the toy room and the game room were his and his alone to explore. He had his options of toys, Wii and XBox galore! Our room looked out over the hospital Emergency door as well as the STARS helicopter pad. What do you know but STARS came in with a patient while we were first there so the boys got to see it land and then take off once their patient was transferred.

T's personal Panasonic Microwave
Braeden seemed to be at home with the Nursing staff and they did a great job of trying to make me comfortable with everything. They bring the kids (patients) out to the main nursing area so that they are all there together for the social and ease of the Nurses. One is never alone. Michael met us there for dinner and I had already explained to the boys that it would just be B and I there for the first night. We had dinner made for us by the chef in the kitchen (they provided three meals a day for families) and it was great having a hot meal that I didn't have to prep or make! Two of my closest friends, Lorna and Kiran (who was visiting from BC), stopped by for dessert and tea (which was homemade banana cream pie) so it was nice to be able to share our experience with them. I had already decided long before (and even packed just in case) that the boys could stay with me both nights. Michael went home for some much needed sleep in a nice quiet house and the boys and I prepped for our 'sleep over'. The Family Suite is made up of three main rooms. First is the 'patient' room, which is like a comfy hospital room and that is attached to a main room with a pull-out double couch, TV and mini kitchen area. Attached to that is a large bathroom area and the master bedroom which was equipped with a king sized bed. The boys were set up on the pull-out couch for the night and I in the bedroom, only steps and two doors away from B. It was a HUGE experience in patience and letting go of control for me. The patience came into play with two little boys that were way to excited and hyped up to go to sleep, not to mention they never share a bed so it was "he's touching me" kind of night. After the final threat that I would call Daddy and they could go home for the night they settled in and finally slept at 11pm. I had a huge exercise in letting go of control because I had to be able to walk away from Braeden. The whole reason for the Respite is for me to have a break but to give up that control (especially to Nurses I just met) was difficult. They really did ask me several times what worked best for me and were all VERY accommodating.

I found myself sitting and staring out at the snowy figure of the Hospital as the boys slept and I wept for the first time in a long time. I wept for all of the families that have used the RFH and especially for those that had to leave without their children. I felt so lost while sitting there, all of my boys within reach and yet not. I couldn't begin to imagine the day that we might have to come to the house for palliative care for B and that we would all have leave without him. Mostly my tears were for the families of others, there are far too many of us that lose our children far before their (our?) time. The best way I can describe our stay is that it was "horrifically wonderful". It was wonderful in every single sense other than my own feelings and emotions that got away from me in the darkness of night.

Ry just Clowning around!
Michael came back Saturday and we spent the day at the RFH as a family which was wonderful. It was still very odd to not have to feed or look after B and even more odd to play downstairs with the boys while B was upstairs playing with the staff but we all survived. Braeden did get a bit upset a few times when he heard my voice and I did feel the need for more than a few snuggles and cuddles. Rylan discovered the dress-up box as Mike and I were finishing up lunch and I had such a good laugh, it was SO perfect to see T and Ry so incredibly happy and relaxed. We even ventured out to Market Mall (just down the hill) for some pre-Christmas shopping. The boys had a blast playing "Rockstar" on the Wii and I think that we've got our future boy band! That night went a bit smoother with the boys going to bed a tiny bit earlier but it was still another late night. I once again found myself sitting in the stillness of the room listening too all three boys snoring gently while I thought about the future and what it could possibly hold. We left Sunday (admist many tears from T and Ry, "can't we just live here" and "we could get jobs here"), just before noon and we actually made the decision to leave B behind for an extra night so that I could have some time cleaning, organizing and getting prepped for Christmas. We figured we should utilize the service offered to us since it is a large process to pack up all of B's stuff for a few nights. It was odd leaving him behind but I did go back and rock him to sleep that night and was able to get a few things accomplished that I wouldn't have been able to otherwise.

The RFH takes a huge weight off our shoulders in terms of having somewhere we can place B into care under fairly short notice. It is fully medically staffed 24/7 so there is never the concern that he wouldn't be cared for properly or if something should arise they could effectively handle it. I'm not too sure how much we will utilize the service as it is also a huge source of guilt for me to overcome. The only other thing is that B is used to being more 'mobile' with going out and about with me everywhere so I think he found it a bit 'boring' to be in a crib for most of the time. It's not that he wasn't interacted with, he certainly was, he's just not used to spending time in crib other than to sleep at home.

Michael's Birthday was on the 13th so we had a small gathering of family and friends for dinner and cake.  How we ended up together with birthdays both in December is beyond me, what a pain we are!

We got to spend another lovely family Christmas at the Family Unitech Christmas Party (Michael's employer).  It was held at Tommy K Place this year and it was certainly a huge hit!  The boys (and adults) got to run and play and just have a blast.  Santa came and spent a short amount of time handing each child a special gift in homemade wrapping.  It was very special to all three boys (as it is every year).

The month of December seems to come faster each year as I get older and the month
itself goes by faster. As soon as the month hit the boys excitement of the pending holiday jumped significantly! We were very blessed this holiday season, I received a phone call from ACH in the end of October to ask if we would like to be 'sponsered' for Christmas this year as the staff of the NICU had nominated us. We were very touched and flattered and later found out that the Diagnostic Imagining group had chosen us. They were very wonderful and organized and two of the staff, Cristal and Jen, came to the house on the 14th to deliver the "goods" from Santa and his helpers. To say I was overwhelmed was an understatement. The DI group had not only bought presents for the boys off their 'lists' they had also done a food drive so they showed up with three boxes of food goods as well. We got the boys preoccupied downstairs as we unloaded the car and it filled up my queen sized bed! So many wonderful gifts. clothes and toys for the boys with huge Costco sized box of diapers and wipes for Mr.B.  There have been so many times over the past year and I bit that I have been overwhelmed by people's generosity and this is by far one of those times.  This again is a time where "thank you" is not quite big enough.  I find Christmas a time of sadness and loss, I miss my family and I feel an accute loss for those family members and friends that are no longer with me.  It is often a difficult time of year for both Michael and I as we both have our birthdays in the month of December so there is a lot of 'reflection' to be had.  Having the kids does add that 'sparkle' and excitement to the month but it is still hard.  To have a group of people the don't really know us (although they certainly know who B is!) go out of their way to make our holiday easier, and extra special is just so thoughtful, selfless and amazing!  Thank you NICU for nominating us and Thank you to the DI group at ACH for all of your generosity!!
We were also able to attend the Christmas Party at RFH which gave us an opportunity to meet other families that also utilize the RFH.  It was a very nice night and makes me realize just how many people, Mom's and Families that there are out there with circumstances that are far off the beaten path like ours.  RFH also arranged a day to come by and pick out a gift for each of the kids and wrap it there to assist families in there holiday stress.  Like I said, kindness and love everwhere!  I look forward to the new year when I/we can participate in the Family Nights at RFH and get to know a few more families in the region.
Onwards to the Christmas Concerts at Rosemont for the boys, chocolates and love to the teachers and staff and finally we were on our Christmas Holidays!  Michael informed us that he would be off for 11 days over the holidays, 11 DAYS!!!  That is the most time that we've ever spent as a family and it was all a bit exciting!  The boys weren't too sure what to make of it, I don't think they really understood until they got to see Dad every morning when they woke up.  What a Christmas Gift to all of us!
My greatest wish for Christmas this year was simply to have us all home under one roof.  Braeden was challenging that wish when I had to finally take him into Emerge on the 23rd as he'd been running a fever for three solid days and was just out of sorts.  I tried so hard to ride it out at home but just knew that whatever was spiking the fever was not going away.  So into Emerge we went.  We were taken in right away and didn't have a long wait to see a Dr.  The Dr we got was new to us so I went through some of B's background and let him know that I was pretty sure we were dealing with another UTI.  Dr agreed that was probably the case due to his history and I asked that no other testing be done till the urine came back to which he agreed.  I was trying to avoid having B poked again (possibly uneccesarily) and tried to forgo yet another chest x-ray.  The Dr came back a short while later to let me know that the urine looked good, it was clear on the 'dip'.  There was still a small chance that it could still have been a UTI but to 'grow' results wouldn't be back for a day.  So now what?  Blood work and a chest x-ray...sigh.  Down to x-ray we trouped, little Mr.B and I and into the 'holding cage of torture' (the best way and easiest way to x-ray little ones is to sit them in a device that is clear plastic tube of sorts with their arms raised above their little heads, locked tight).  It's not like the techs keep him in there any longer than necessary (they are all fabulous) and it really is the easiest way to do it, it just SUCKS to watch him have to endure it again and again each time.  Back to the Emerge and onto the poking.  The first Nurse to give it a go had bedside manner that was sorely lacking (not our reg Nurse of the day) and she gave up after two pokes.  A new set of Nurses in for the next three and they got a very small sample before it clotted.  Fingers crossed we sent that one off for a 'micro' with the hope it would be viable.  The chest x-ray came back with some new 'fluff' (pneumonia) for B so that was most likely the cause of the fever.  Huh.  No coughing, no shortness of breath, sigh.  The Dr let me decide to take B home and I said I absolutely wanted to as I know by now what to watch for and am comfortable in realizing when a situation is turning dire. We were sent home with a high dose of Antibiotics with the hope that the pneumonia was bacterial.  Home we went and so started my watch (not that I don't watch him extremely closely anyhow).
Lightsabers from Grandma and Pappa
 (and a list of rules!)
Mr.B had a rough couple of days/nights and on Christmas Eve night I sat and watched him breathe in and out, knowing he was working harder.  If it were any other night I would have most likely taken him in but I dug in my heels and chose to watch him hourly instead.  Christmas morning came (as it invaribly does each year) and they boys were only up at 2am, 5am and finally begging to get up at 7am (which is the house rule, no leaving your room till 7am).  Mr.B had a rough night so we let him sleep and the boys got to go to town on the living room.  They had a wonderful and special morning sorting through and opening up presents as far as the eye could see.  Braeden finally woke up sometime around 10am long after the boys had completed their 'openings'.  The morning was faster then normal as Michael and I skipped Christmas for one another this year which in many ways made it more enjoyable getting to concentrate on just the boys opening their gifts.

The phone rang close to 11am and I looked at the call display, 403-955....ACH.  I answered and the Dr introduced himself as being an ER Dr and then laughed and said, "sorry, Merry Christmas".  He asked how B was doing and I explained that he'd had a rough night and his colour wasn't stellar this morning.  I explained that I was very torn about whether or not to take him and the Dr informed me that he was calling to tip my hand.  B's blood work had come back positive for Staph bacteria in his blood.  My stomach clenched, "Sepsis?".  Yes, quite possibly Sepsis (Blood poisoning, the one and the same that almost took B's life last Christmas), if it is a true sample.  Trying not to completely lose it I agreed that I would bring him in sooner rather than later.  Out went my Bailey's laced coffee and I started packing.  Oddly (?) enough there wasn't much packing to do because I had done it the night before in case we had an urgent trip in.  I guess having just Sepsis this Christmas as opposed to Sepsis/Meningitis last Christmas was a step up.  Off to ACH B and I went, me with a a heavy heart that this could have the possibility of being very bad, and leaving Mike and the boys at home on Christmas Day.
We got to Emerge and the Admitting Nurse said, "Oh, we've been expecting you!" (which is never good) and we went straight into a room.  The main goal was to get another blood sample and to test it fully again.  The full extent of the blood test for Sepsis wasn't going to be completed until after 3pm that day so they would draw another sample and do another 48 hr 'grow test'.  It wasn't all bad, we did have Jill, one of the Nurses we'd had on Unit 2 for part of the day so it is always
nicer having a familiar face (not that I'm not getting to know the Emerge Nurses well).  The Dr's came back in with the thought that it might have just been a tainted sample, not actual Sepsis (it happens when bacteria off the skin is introduced into the sample).  That was certainly a relief to hear but we had to still stick it out.  The Senior Res came down from Unit 2 to check B out herself and remarked that he certainly looked well enough to her.  I had to explain, yet again, that Braeden is mostly asymptomatic, he doesn't present with many symptoms if any until he gets very, very ill.  I explained how he'd been not feeling well for over 5 days now with a fever and she wasn't overly concerned.  So we waited, and waited and waited.  It was confirmed that yes, the sample was most likely tainted but they still wanted to go ahead with the next 48 hr test to be certain as he'd been ill.  Then we waited and waited.  I guess the Res had a major dilemma about whether or not she wanted to admit him.  She finally came back down to talk to me again and I explained that I would have brought him in, if not that day then certainly the next as he'd not been well.  We weren't just there because of the Emerge phone call, B was/is sick.  I got to be the one to make the call to admit him, I chose to do it simply on the fact that we'd been there over 8 hrs by that point, I knew he was ill (even if it was just the pneumonia) and that he should be watched for at least 24 hrs since I was feeling the need to watch him hourly at home.  Done, admitted and upstairs we went.
It was well after 9pm by this time so I stayed long enough to get him settled in, put up his mobile for him and kissed him goodnight.  I got home sometime after 11pm to have a chance to sit down with Mike and talk for the last hour of Christmas.
Boxing Day was spent in ACH with B while the boys got to spend it at home with Dad while Dad built and built and built the Lego!  I sat and looked out B's second floor window and was touched when I saw the Snow Angels in the snow bank.  It was just such a lovely thing to see!  We got mixed reviews if he would be sent home after 24 hrs but they decided to keep him for the full 48 hrs till the second blood sample came back.  He was released the evening of the 27th so we had our turkey dinner on the 28th and Mr.B 'opened' his presents up sometime around the 30th.
All in all I did get my wish, we were all home for Christmas, I just forgot to specify that I meant the whole 24 hours worth!!
Christmas Morning Smooches (before the phone call)
Braeden also turned 1 for his second time on December 30th as it was his 'age adjusted' Birthday.  As it was also my Birthday we had a nice celebration the night before and cake the day of.
We have now turned the corner into 2013 and I am looking forward to what this year brings.  I'm not much of a spiritual person or one that believes in 'luck' but what I do know is that 13 is my favourite number, Michael and I are now in our 13th year together and it is 2013.  How can that not pan out well??  :)
A very late Merry Christmas (Happy Holidays to those of you that do not celebrate) and  much love and happiness to everyone for the upcoming year.  It is going to be a BIG one, mark my words!