Holding Out Hope For Home

"How's Mr.B" is on everyone's mind and I'm sorry for such a long time between posts (again), especially when he's in hospital.  Both of the big boys are sick right now, Rylan with Scarlet Fever (again) and Torin with Bronchitis so this Momma is spread even more thin and even more tired!

Braeden made my heart sing last night when he found the

energy to pull himself up on his knees in the crib.  I was so proud of him because he did it completely out of mischievousness!  He was desperate to reach (and play with) the IV pole with all of the buttons.  It was SO great to see our boy up to his old 'tricks' that I started to laugh (and snap pictures) and he just laughed and laughed simply because he was overjoyed to be himself.  The Nurses on Unit 4 are starting to see (and fall for) Mr.B in a new light, they are pleasantly surprised to finally 'meet' Mr.B.

Mr.B's now on his full feeds, running on a continuous loop.  He will be starting his bolus feeds tomorrow with the hope of getting him to the point in which we can have a bit of time at home before being back for surgery on the 13th.  You will note in the pictures that he does still have an IV in as well and they will keep it in as long as it holds on.  We are giving him extra calories to try to help with the deficit that he had for almost two weeks.  He's gaining weight (finally) and starting to look more like himself.

It was a full week last week though and certainly not all roses. 

I came into B's room on Tuesday morning to find them

Finally able to squeeze a real bath in between IV's!

prepping him for a poke (an new IV) since he'd blown his line.  B's poor arm/hand were swollen more then twice the size.  We are so very thankful that they did catch it early enough that he didn't get a 'burn' from the TPN but it was certainly painful enough for him without it.  I was NOT impressed to walk in on an attempted poke without being notified that it had blown for one but even more so to what the 'protocol' is for B to even get poked.  Braeden is not an easy poke, not a simple in and out...ever really.  I always ask for the Transport team (in the very least) since they seemingly have better luck with poking him.  I would request the NICU Nurses each time if I could!!  I stopped the Nurses then and there and told them I wanted to discuss with the Dr first.

Dr.Stockdale came in and I again inquired if he had to be poked again if we should just bite the bullet and do the PICC line?  We chatted about the pros and cons and since he only needed the IV for a few days then it would make more sense to run another IV.  I asked for Anesthesiology then to come up and place the line since it needed to be a really good line in order to run the TPN for another few days. 

We waited for Anesthesiology but since they were so busy they put a call into Transport and sent them up.  I generally give a 'two poke max' to people now for Mr.B, it just gets to be too much, too stressful for all involved.  One good poke, she was in but the line blew...two more pokes (the third, after getting my approval for another poke, was more like another 5 pokes!!)...so no line.  Anesthesiology did find space to come up, right after B fell asleep for his nap.  I knew that if we didn't get the line in then and there who knew when they could come back.  They too took three pokes but we did get a line in (and I knew I had no one else to call).  It's another great line, it has held on now five days (and counting).  I tried so hard to avoid B's 'thumb sucking' hand but alas, it was the only poke left.  He's so busy chewing on his sleepers these days that he doesn't seem that put out by it (thank goodness!).

The awesome news was that we had a new IV AND we were running a very slow trickle through his g-tube (with success) so we could get rid of the NJ Tube!  Yay!  Justine and I both did a happy dance!  We tried out hardest to protect his little face but unfortunately his poor cheek was a mess when we got all of the taping off.  (It has since gotten much better).  It was a 'good riddance' to the NJ!

A sore cheek for sure!

I had been doing some research online trying to find a new g-tube for Mr.B and we found one that both Dr.B and I love.  I still don't have it but we do have people trying to help out so that is great!  (If anyone wants to help we are trying to buy a new AMT Mini One NON-balloon, 14F, 1.5cm tube) I did find out this week that Dr.B can 'jump in' on B's eye surgery and put the new tube in for us if I can get it here in time.  Did I mention how much I love this Dr?  She wasn't scheduled for surgery that day but still found the time to book herself in for his little procedure...amazing (and I am never annoyed when one of our appointments get changed since I know she does what she can for 'her kids').

The g-tube is holding out, it is sore, it is leaking but it is working.  He does certainly have some tenderness around the top of the port where the 'burst' was and there is some swelling there as well in the scar tissue.  Dr.B had a look at it and we are keeping a close eye on it.  Dr.B figured that with it still healing that it would be par for the course for now.  The good news is that it's not gotten any worse...sore we can live with.

Being a stinker...

We were able to get him up on his full calorie of feeds by Friday while running them continuous so he's FINALLY had a few days of his full caloric needs (more actually with the TPN still running).  He's gone back over the 10kg mark too, which is reassuring to see...let's hope that this time he won't ever dip down below it again!

We are still on Unit 4 and we are still hoping to get downstairs to our 'home' Unit 2 but I can't see that happening after more then two weeks up here now.  We are missing our Unit 2 Nurses desperately.  We've had some lovely ones up here on Unit 4 but the ones that 'get' our needs are seemingly few are far between.  Unit 2 is by no way perfect (oh we've had our issues) but they at least are around more frequently and anyone will offer a hand when one is needed.

We received a beautiful gift in the mail last week as well.  Danny Wright (Pianist and Composer) sent us his "Dream a Little Dream" CD and we love it!  It is a beautiful collection of songs you'd know as well as some of his own compositions.  Mr.B loves it (it's been playing 24/7 in his room) and I am so very thankful for the kindness and the generosity of Danny!  Click HERE for his website!


What's this Momma?



I love it! :)

Window chin ups!

The other great news of the week is that our wonderful Dr.V is now Mr.B's primary physician for when he's in hospital.  This means that each time we are admitted Dr.V will find out and be able to weigh in somewhat to his care.  I'm so very happy with this news.  I had asked her awhile back who B's primary was (since the complex kids are supposed to have one) but she didn't know.  When she asked she was told he didn't have one so she agreed to take him on (with her already very full load!).  For this we are SO thankful!

We are still on the Blue Team as well but this time with a Dr that's never known B.  She seems (as I've still not met her) on board with my plan (with a few changes) on how to get his feeds up.  I am still concerned about pushing him too far with his g-tube surgery (switch out) less then two weeks away.  If the current one shows us any major issues (which we won't know until he is up and moving more) that could be a big back step for us.  I've laid out a plan to get him home by Saturday, fingers crossed it will work AND our house will be healthy by then.

Mr.B did get swabbed for Strep tonight just to be on the 'safe side' since he's got a (wee) bit of a rash on his back (no other real symptoms).  I wouldn't otherwise be concerned but with Rylan's crazy face/chest/stomach/lower back rash I'm a little nervous.  I had to tell him this was in no way a 'challenge' for him to rise to the occasion for.

I can't believe that we are now into December.  People keep asking me when we are coming home and my only goal is to have all three kids home (for the entire day, selfish I know) for Christmas day. 

THAT Mr.B IS a challenge for YOU!! :)

From Our Home (Unit 4) To Yours...

The Season Of Giving BACK...who's in??

December??  Really??  I guess after being in hospital for both the majority of October, home for a week and then the majority of November then it's no big surprise how December stood up to say hello this morning!

The big boys are getting so excited for Christmas already, which is wonderful, but this is certainly not my favourite time of year.  Don't get me wrong, I love spending Christmas morning with my kids (although we've yet to have one with all THREE kids, B's third Christmas will hopefully be the one!).  I guess the best way to describe my feelings are that there is such a huge build up to one day.  So much stress for those that can't afford it, so much stress for those that feel the need for it to be 'perfect', so much stress for those who feel pressured into fulfilling a 'tradition' or are pitied for spending it alone.  My wish for this Christmas?  Take a moment to spread kindness...pay it forward people.  What better gift could you give then paying it forward (or donating blood!)?


I see struggle around me, I see people that need a hand, not money (although I see some that need that too).  Just keep in mind that if you can spend hours shopping in a mall then maybe you could spend 10 mins shoveling a neighbours walk?
I can't help but stop and think of how some of my wonderful friends are going to be spending their first Christmas without all of the one's they love.  Having to find the 'cheer' through their sadness, through their loss.  It breaks my heart.On top of the struggle I do see kindness, I do see goodness.  I know so many of you go out of your way to donate time and money at this time of year (good on you!!!).  I just wish there could be a way that we could change Christmas into the 'season of giving BACK' instead of just the 'season of giving'...

Such a sick baby

My goal for this Christmas is to give back to the NICU here at Alberta Children's Hospital.  I've not decided on all of the actual nitty gritty details but I know that I need to do something.  B's first Christmas was so terribly stressful (he was still dealing with the agony of his Sepsis/Meningitis, recovering from heart surgery and being a preemie on top of everything else) and we had no idea what our future would bring.  I never imagined that Christmas that we'd still have another six months in hospital before he could come home for the first time.  This hospital never closes it's doors, just because it is Christmas doesn't mean that the hospital isn't still full to capacity.

Last Christmas B had been getting progressively more ill in 

Christmas morning before running into ACH for
admission

the days leading up to it.  I'd had him into Emerge the 23rd of December to which they told me he had 'fluff' on his xray (pneumonia) but they let me take him home after getting a blood sample.  B had a really rough night on Christmas Eve and any other night I probably would have taken him in but I didn't.  I got a call on Christmas morning from the ACH Emergency Room, B's blood sample from the 23rd had come back as having bacteria...Sepsis two Christmases in the a row?  Really??  As it turned out it was a 'bad' sample but B was still admitted for the Pneumonia and Mike and the boys had a non-traditional Christmas dinner to say the least.

The Staff here make Christmas as wonderful as they possibly can, make no mistake, but it's still not the same as being home all together.

So, what's my plan?  I'm thinking along the lines of gas cards, grocery cards, Market Mall gift cards (it's right across the street from ACH)...I'm not too sure what else.  There are always presents for the children (of course there should be) but I'm hoping to support the parents, to make their day even a touch brighter.  I'm trying to think what could have made it less stressful for us and I can't really formulate an answer. 

Why the NICU?  Well I'd love to do something for the whole hospital but I'm only one Momma (who is already spread really thin).   If anyone would like to donate items or time to help me (please don't feel in any way you need to!) then please send me a message at lialousier@gmail.com or message me on Braeden's Facebook page or just send them to us directly at:
Lia (Braeden) Lousier
5628-4 St NW
PO Box 64174 Thorncliffe PO
Calgary, AB
T2K 6J1

So here it is folks, the 'SEASON OF GIVING BACK'...lets start a revolution! Let's make the world a better place, one act of kindness at a time!

From Our Home (Unit 4) To Yours...

Blankie Stories VII - Amber Wagemakers

Yep, I love it!

The special Blankie came to us from Amber who first saw Mr.B's story on CTV news National coverage of one of our blood drives.  Amber has two wonderful little girls and her youngest is only a few months older then B.   She's always been available to offer words of kindness and support. 

Peek-a-boo!

Here are her words to Mr.B:

Dear Mr.B,

Hello!  You and I have never met but that hasn't stopped me from feeling I know you.  Your mother has done a fantastic job of sharing your story and tales of your triumphs, joy and passion for life.  It's unfortunate that so much of your success stems from over coming the many medical challenges you face.

I want you to know that in following your story, you and your family have given me much strength in over coming challenges of my own.  I am grateful to all of you for that.  I was very happy to find out I could do something for you to bring you comfort during your struggles. 

It also gives me a chance to pay back the strength I feel I've gotten from your story.

I had taken up crocheting in an effort to bring healing to myself so I'm happy to pass a healing gift onto you.   I hope you like it.  I tried to leave some open spaces for you to stick your fingers through.  I've seen pictures of you doing this and hoped this is something you enjoy in a blankie.

Much love to you and your family Braeden.

Love,
Amber

A huge thank you to Amber, it is a beautiful Blankie! 

I had to laugh, I was opening the package it came and Mr.B was sitting in his tumble form chair watching me.  I pulled the Blankie out and B literally put his thumb in his mouth and reached his hand out to grab it.  "Yeah, that's for me Momma."  You can see that he certainly loves it!

From Our Home (Unit 4) To Yours...

 

A Change In Plans...Big Surprise

I had plans to post another "Blankie Story" tonight but I am just too keyed up and annoyed.

It's been a long day.  Long story short B doesn't have his PICC line in, it got cancelled.

Hanging out

The longer version is that Dr.Stockdale cancelled it with the hopes of starting to use the g-tube today and building up to his full (continuous) feeds over the course of three days.  The 'hope' is that his regular IV holds out until that time to continue to run the TPN (to compensate for calories).  I get it, I see her side and where she is coming from and even agree somewhat BUT when you have a 'plan' and it changes dramatically it is hard.

I have to respect her decision (yes I would have fought it if I didn't think it was slightly possible) but it is hard when I know Dr.V so well and she knows B so well.  Dr.Stockdale did say that she might be eating her words in two days....it might come sooner then that.

B's g-tube has been doing okay all day, not too much 'leakage' (he's only getting 5mls an hour) and he did have some personality again.  He is STILL not moving, he has no energy and he is STILL losing weight.  It breaks my heart to hold him and be able to trace every bone in his body with my fingers...awful.

The 'eating of the words' might be coming tomorrow if I am right (which I think I am and is why I am so annoyed).  I came in tonight and took a look at his g-tube site and it is red above it.  It is turning RED where it all started, in the scar tissue over his g-tube.  All of this started with the scar tissue turning red, then swollen, then bursting.  It isn't very swollen yet but it is red and to an 'untrained eye' (who hasn't been here for the past 10 days) it wouldn't look like much.  Which is what his Nurse said to me tonight when I pointed it out.  I asked to speak to the Resident and got told she'd talk to the Charge Nurse...which is fine, there are 'protocols' after all.  His Nurse (who hasn't had him before) asked me to show here 'exactly' what I was seeing.  I showed her the redness again and got looked at like I was imagining things.  She's not been unkind at all, the opposite actually but she doesn't believe me and that sucks.

The annoying part is that the Charge Nurse didn't even come in, I got completely brushed off.  I was told that there is nothing that the Resident would do for the night and that I would have to wait until morning and they would re-evaluate it then.  I HATE being brushed off.  I know what I am seeing and I know what is right and what is not on my child.  B is rubbing at his tube (which is what he did when all of this started) and he is flinching when I go near it again.  It hurts.

I got offered calmoceptine lotion to put on it, which would do nothing, and tried to explain (yet again) that the pain is on the inside...sigh.  I am torn now, do I stop the feed and be 'The Paranoid Mother' OR do I let it go overnight and risk it being more painful for him in the morning (but then at least it might be more 'noticeable')??  I don't know.  Damned if I do and damned if I don't tonight I think.  I hate to cause him any discomfort but I also need them to know that it is real and it is happening.

Could I be wrong?  Sure, of course and if I am then I'll eat my own words but if I'm not then we've lost yet another day of healing AND he'll still need the PICC line put in.  Can you see my frustration?  My son is shrinking before my eyes and it is so hard to see him not moving.  He's got no extra energy and it is awful.  I feel like I am helping him starve...it sounds harsh because it is.

Who knows what tomorrow will bring...maybe a PICC line or maybe just a paranoid mother admitting she's wrong.

The 'good' news is that I think I may have found a g-tube (that is only available in the US) that might work for him and the attachments that are available in Canada fit it too.  I would have to pay out of pocket for the device but it will be well worth it if it works!  I met a new friend tonight who ordered one for her son through a medical exchange and has loved it.  She was so kind to chat with me and to take the time to talk about their own journey with the g-tubes.  There is nothing like meeting a fellow parent with things in common that only another parent with a child like ours could possibly understand!

So, as always there are positives to the day but I'm still in an annoyed mood.  It could also have to do with the fact that it is 11:30 and B is wide awake.

 

From Our Home (Unit 4) To Yours...



Blankie Stories VI - Kaela and Lauchlin

I've been behind on our 'Blankie Stories' and for those of you that have sent us blankets, Thank you!!!

This is a special blanket from a special lady who also knows the ins and outs of a NICU.  Kaela and Lauchlin are relations on my husband's side of the family and we were pregnant at the same time.  I can remember my Mother-in-law telling me when Lauchlin was born and how worried she was for all of them.  I remember thinking, wow, this Momma's got a big fight ahead of her!  Kaela has her own NICU miracle little man, Lauchlin who was a whopping 1 lb 15 oz when he was born at 25 weeks. 


Kaela's words:

We were both actually pregnant at the same time...little did we know at that time that dramatic turn our lives would take.

Lauchlin was born at 25 weeks very unexpectantly (I was actually at work 2 hours before he was delivered and drove myself to the hospital hahaha. So stubborn). Upon delivery of our 1lb 15oz boy, he was rushed into NICU for them to do their magic. He stayed at the NICU for just over 3 months and managed to only need 1 surgery (laser eye). He was scheduled for more but always seemed to heal himself just in the nick of time. He ended up having a vp shunt put in his head at 5 mos old because he has hydrocephalus (excess fluid in the brain) but came out of that with flying colours. He's had one surgery since and will need more as he grows but that's to be expected. He's a happy healthy boy and has recently just hit the growth charts for his actual age! We're super proud of him and know he'll do great things with his life...

An amazing family and a story that can certainly be seen as inspirational.

B loves his green and white blankie, it is different from any others that he has.  He loves the different textures in it and that he can get those fingers in there between the threads!

Thank you Kaela and thank you Lauchlin, we sure hope to meet you one day soon!

From Our (Unit 4) Home To Yours...

Going Nowhere Fast

So the hope is that after two days of running a blend of 1 part formula and 3 parts Pedialyte that B should be perking up a bit....or not.



Not too impressed with the world around him

Mr.B at least had a decent night last night since we reintroduced the Ketorolac (pain med) around the clock.  He hadn't been in as much pain, he wasn't himself, but not in as much pain at least.



Hi Grandma

Auntie Lorna came in for snuggles this morning since the big boys were off school so I got to the hospital around lunch time.  Mr.B was the same as yesterday, not any better,  but not any worse.  He has certainly gone from not wanting to be touched to needing to be on Momma 24/7 though.  I had planned to go get groceries and leave Grandma at the hospital but I just could get around to leaving today.  My gut was getting louder as the day went on and B didn't want to move.  I had to change his bedding at one point and his was so uncomfortable when I had to move him.  By this afternoon at 3 I thought enough is enough and called in the Dr.

I explained what I was seeing (or lack thereof) and again expressed my concern that his pain levels had been increasing since the NJ went in.  I again voiced that my biggest fear was that he'd been perforated upon NJ insertion.  He was just so unsettled (didn't nap yesterday or today really) and so uncomfortable that I asked to stop the feeds.  I knew he wasn't getting dramatically worse but he was certainly not showing any signs of improvement either.  She agreed with me that maybe we should take a look at the bowels and ordered an abdominal xray.

Once again we trouped down to DI and Mr.B was a such an amazing superstar considering this is the third time in as many days as he's been strapped to 'the board'.  We got back upstairs and within a short time the Dr. came in.  She said, "the good news is that he doesn't have a perforated bowel....not so good news is that there is an Ileus there"...again.

That would explain the increasing pain.  Dr.Brindle just happened to be at the desk when she was reviewing the xray and so she could weigh in on it as well.  They decided to try to keep running a 1/4 formula blend nice and slow to try to push through the Ileus.  I was fine with trialing it, it made sense.  He's SO in need of calories.  He went without ANY calories for five days and has only been getting a slight amount of calories for the past two days.  His body has burned through what tiny amount of stores he had and he's even gone back a size in diapers.  So that is why I agreed to try running some calories.

Our friend Peter playing the Kalimba for Mr.B trying to perk him up a bit

He was just desperate to be held tonight and I couldn't move let alone put him down.  I knew he was still uncomfortable but it was mildly improved from earlier in the day.  I finally shut it down at 7pm tonight and called for the Resident.  He was thrashing in my arms and I couldn't calm him down.  I'm not a Mom to ever hit the Nurse's button but it got hit three times in an hour tonight so she could see what was going on.  By the time the Resident was able to come to us (an hour and a bit later) he'd actually been settled for a bit in my lap and was just chilling when she came in.

She was able to examine him pretty decently and he was fairly calm while she touched him.  He only got really uncomfortable once she got to the lower abdomen.  I was hesitant but still open to trying just Pedialyte at a rate of 20mls/hr (a dribble) so that he'd at least still get a few calories over night.

We've taken to having 10 min catnaps

The Nurse came in, hooked him up and let me know she was going on break.  He lasted a total of about THREE minutes before he started writhing in my arms again.  DONE.  Shut it off, we're done.

It was all I could do to get him to settle down tonight (not in my arms) and I crept out quietly as he was drifting off feeling confident he'd be down for the night.  Apparently not.  SIGH.  I called to tell his Nurse that I'd left for a bit since she wasn't around and she told me that no, he was wide awake and upset (which is what every Mom wants to hear).  She said she had to change his dressing on his IV (argh) and we woke up...uh, yeah.  So I'm here at home feeling guilty as hell but exhausted as well.

Nope, not sleeping

I also asked if she'd informed the Resident that I'd 'shut down' his feed and she said yes but that the Resident wanted to try it just one more time to see what happens.  WHAT?!!  How can a Mother telling you he's writhing in her arms not be enough of a 'trial'???  I told the Nurse in no uncertain terms that I said NO, he is NOT to get anymore feed or Pedialyte tonight and to put it in the file as such.  So now I'm not only feeling guilty but mad to boot.  The thing is that Mike has to work in the morning, it's already midnight, I'm tired (yet wired on stress)....and on and on goes my mind.

I am just simply hoping that it is only (!) and Ileus causing all of this distress and that maybe just maybe I might get to see a small glimpse of Mr.B tomorrow coming through.  It has been a week since Mr.B has been Mr.B and it is so hard to see.  It is also so very hard to make anyone that doesn't know him understand just how 'bad' he's feeling.  I'm sure you can tell my frustrations are running high.

I'm hoping that between Dr.V and Dr.B tomorrow we can formulate a plan that will include feeding my son and getting him stronger while also giving him the rest and support he needs.

Tomorrow is a new day...a chance at a better day (let's go with that).

From Our Home (Unit 4 still) To Yours...

My Heart Is Heavy And Sore

It's been a 'defeated' kind of day, a hide my head under the covers or burst into tears at any bizarre thing kind of day...now before you all get concerned, it will pass.  I bounce back, I always do but sometimes you just need to give in to a rotten day.  I gave the shortened version on Facebook earlier but this is the longer, more frustrating version if you feel up to it.

The good news is that B now has his NJ tube in and is getting a steady stream of Pedialyte.  He has actually pretty much left it alone thus far (aside from rubbing his nose) which is good because if he rips it out he's not getting another one.  I'm refusing (which I don't do often) anymore attempts at NJ insertion.  It might sound like an over reaction but when you read how our morning went you might agree.

First off let's go back to another story when Braeden was having an NJ inserted, the post Code Blue, I think this is a good start to realize how my anxiety level was this morning.

I pushed to have B's NJ inserted in Radiology for this reason because I stressed I wanted someone to have a good deal of practice doing complex kids.  I'm not discrediting the Nurses here on Unit 4, they've been quite lovely, but if he had to be x-rayed I figured we might as well kill two birds with one stone and do it down in DI.  Did I mention that I stressed that I wanted someone experienced (am thinking I might start questioning people for a CV before they lay hands on this kid!)?

Our 'before' shot with the lovely Dana

We got the call to go down at 10:30am and Justine had another appointment so the wonderful Dana offered to come down with us.  Off we trouped, B curious about where he was headed and me trying to control my breathing.  Unfortunately it was all too soon that B realized he was headed right back down to DI (we were there yesterday as well).  We did have the same great Nurse as yesterday though so she made sure he had a nice warm blanket and made him as comfy as possible whilst strapping him to the board.  I got the joyful Parent job of holding his hands over his head and singing in his ear. 



The 'board'

A small idea of what happens on an NJ insertion is:
1) a yellow tube (end covered in jelly) is inserted through the nose
2) it's then fed down the back of the throat (while my child gags non-stops, screams and chokes)
3) the tricky (and dangerous) part comes when trying to feed it through his fundoplication (stomach wrap)
4) Once in the stomach a 'wire' is fed into the tube to make it easier to guide (and hopefully not perforate anything)
5) down through the stomach and (fingers crossed) you hit the pylorus on the other end
6) after that it should 'rest' in the jejunum (small bowel) and the wire is removed
This is all done while the x-ray is running so that the technician knows when they've hit the right spot.

I wasn't watching the x-ray screen at all since I was 100% focused on B and watching his face for reactions.  I knew she was struggling somewhat but I just kept singing (and crying) and watching him since choking can equal aspiration in a child like Mr.B.  I had to actually stop her at one point and flip B onto his side since he was choking/gagging so much.  She finally got to the point to put the wire in and I kept telling B that we we're almost done...okay now we're almost done...okay, NOW we're almost done...now??  It was then that the Radiologist turned to me and asked "Had he had any gastric surgeries?"....WHAT???  I actually asked her to repeat herself since I honestly wasn't sure if I'd heard her correctly...."Any gastric surgeries?".

"YES HE'S HAD GASTRIC SURGERIES!  He's a Ladd's kid!  It would be in HIS CHART!"  Her answer? "Oh, that makes sense now."  We had a Technician that hadn't READ his chart???  I can't stress enough how complex Braeden is, he is nothing like a 'typical' kid and no procedure with him should be entered lightly or INEXPERIENCED!  I'm sure my blood pressure was in dangerous territory.  I'm pretty sure I was cursing under my breath at this point just to keep from completely tearing a strip off her while my poor child lay screaming beneath me.

To top it off the Dr wanted to pink tape the tube to B's little sweet cheeks until we got upstairs to tape it properly.  Pink tape is the equivalent to putting duct tape on your skin (I know, I had it all over my belly when we were in the Maternity ICU) and then needing to pull it back off right away.  Dana (bless her) and I finally gave up on letting them tape him at all because the white tape wasn't sticking and they didn't have the proper supplies.

It would have been funny if we'd not had such a stressful experience but Dana and I did a shuffle sidestep walk all the way back up the four floors to Unit 4.  Dana had her finger at his nostril the whole time trying to keep the tube in place and navigated the IV pole while I carried him.  I'm sure we looked a bit odd to say the least.

It took a team of 5 of us to get a tape job that was somewhat satisfactory (after having one attempt ripped off and started again).  He's taped within an inch of his life so that he can't rip it out but at the same time looks as though he's been through a train wreck.  It was during the taping that I was certainly missing our Unit 2 crew and their dealings with children like B and B's size.

My sweet, precious child

It took a long time for Braeden to settle afterwards, he was exhausted but couldn't relax enough to go into a deep sleep.  I just lay with my hands and face on him trying to give him some reassurance and tried to soothe the guilt from my heart about the whole experience.  (Yes, I am aware it's not my fault but you have to realize how damaging it is on a Mother's heart and soul to have to repeatedly hold your child down while others do things to their bodies.  It is a horrible experience in the best of circumstances and I've had to do it more times then I would ever care to count in the past two years.)

Mr.B did manage to perk up a wee bit this afternoon but for the most part was just pretty low-key.  I left to go get the big boys from school and get them sorted out.  When I got back tonight just after 5pm B did not want to be touched at all.  He did permit me a small kiss but otherwise he made it very clear he wanted hands off.  He had a Nurse in here with him when I got here and she said she'd tried to cuddle with him and he wanted nothing to do with it.

The major concerning factor for me is that I've now been right here beside him for 5 hours and he's not moved.  He's been in the same spot in bed (aside from me changing his bum) and doesn't want to play, doesn't want to interact and doesn't want to be touched.  He's not upset but he's certainly not happy and he's most certainly not himself.  He's had one large dark green jello stool (you're welcome) but no fever.  I've consulted with the Pediatrician and expressed my concern and she's agreed that things aren't 'right'.  I know he's still sore (his g-tube site is nicely bruised up) but it's more then that.  I am hoping desperately that I'm wrong but it would seem as though he's fighting something, that we've moved on to something new...(tear rolls down cheek).

It is so hard to see my active, crazy, playful little guy just laying in one spot.  I'm not concerned with anything Neurological, he's attentive to what he's stimming on (crinkly ears of toys) and there is no fever but he's not at all acting B-like.

My mellow lil dude

So urine sample bag on, stool sample waiting to be taken and blood work was just drawn (yes, I'm that concerned that I let them poke him even after his day today).  Tomorrow we'll see what all of this or any of this tell us.

My heart is heavy and sore for my little duck and it was by far a rough Momma day today.  The good news is that my lovely Mother is flying into town tomorrow (the big boys will be very surprised and happy) so I'll have an extra pair of hands around which are much needed these days.  I know my limitations and after this many admissions back to back I need help, I'm done.

The other good news (yes, there is always something to be thankful for) is that they are still pushing to have us moved back to our Purple Team now that the surgery is behind us or in the very least Blue (less complex kids but at least not a 'teaching' team).  Fingers crossed that we'll be able to be 'home' again on our Team and with those that know B.

On a side note I also have a lot of thank you cards to write (which might be awhile) for all of the thoughtful and lovely gifts Mr.B received for his Birthday AND I'm behind by three 'Blankie Stories' so I do apologize for that (I know you understand but it still needed to be said). 

I also owe (yet another) huge thank you to one of the best friends a girl can have, Lorna Z for the dinner in my oven and the groceries in my cupboard (she divided up her own groceries and shared with me!), Love you girl!

Tonight my hope is that B will finally get a good rest and gain some strength back.  I am aching to see that smile and hear his amazing B laughter again as it's been far too long. 

A hard day but tomorrow is a new day. 

From Our Home (Unit 4) To Yours...