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!|
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!|
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 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!|
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...