Sunday, 1 December 2013

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!!) 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...

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