Movin’ on up.

See what I did there??? With the title? It’s kind of a play on words. Cause, you know, Sherman Helmsley passing away and the Jeffersons theme song, and also cause we are hoping to “move on up” to a regular floor (not the PICU) and Kendall’s recovery is moving up…. you get it? no? you don’t? just me? {nervous laughter}…..

ok nevermind.

Anyways –

We should be getting transferred up to the floor (as opposed to the “unit”, PICU) relatively soon. Kendall is “stable and controlled” with regard to her issues and pain – but the team is still treading lightly, knowing that she is still needing a lot of medicinal support to keep her that way. She still has the PCA (morphine pump) turned on – but we are trying to add in more oral pain meds (meds into her tube – because that’s how we give pain meds at home) and see if we can wean down the use of that pump.

As a quick catch up for those of you who did not see all the facebook posts last nite – the surgery itself went great, he was successful at creating a tunnel for her bladder and preserving blood supply to the entire site, and feels confident that this will help to greatly alleviate her pain from the retention she was having. It will be about a month of recovery with the drains and extra skin buttons in place and for the scars to all heal over – but after that time she should be up and running like usual! So praise God for that!

After we came up to the PICU, she was still very conked out, until we tried to adjust all of her tubes and wires. She was absolutely through the roof with pain, and seeing how horrid her surgical site looked, I had no doubt that it was extremely painful for her to be moved a millimeter. They were SO awesomely responsive here in the PICU though – ordering extra meds, pushing them quickly, getting her comfortable again no matter what. And that’s not to say that we don’t get good care up on our regular floor, but i was AMAZED at the level of care and immediate response that came from the PICU team. Good thing too since about an hour after getting her settled from that first event, she started dropping her blood pressure, violently vomiting (which is quite a sight to see from a kid who has her stomach wrapped around her esophagus to prevent such a thing from happening), and in general having a really tough go at things. After one of these episodes we noticed that she was bleeding a lot from around one of the incisions, but the surgeon packed more gauze around it and proclaimed it still good. Still not a comforting site for a momma though. Finally at around 2 we were able to get back on top of the pain and vomiting and keep her blood pressure up at an acceptable level – and I crashed. I had planned on getting up every hour to check her and press her pain pump again – but the nurse set it to a bigger bolus and she took care of it til the morning team came on duty and i actually got 4 straight hours of SLEEP. which I NEVER get in the hospital because on the floor, the nurses are usually busy with 5-6 other patients all nite and I end up handling most of Kendall’s nite time care. It was such a nice thing to have it all under control all night long! All of the nurses here keep saying how shocked they are that the floor never sends her to them (on the unit) because her needs are pretty extensive for what they can handle – and I tell them that its because I end up doing most of it! (or ben when he has hospital duty! or my aunt who got roped into spending the nite one time!)

But i’ll tell you something – you ever need a hefty dose of perspective? come hang out in a Peds ICU sometime. It has given even ME some healthy perspective about Kendall’s care/situation. I am anxious to get out of this unit and onto a floor because I understand that the really sick kids are here on this unit. I want to get back to the regular sick kids place. where they make you wait for hours for a single dose of tylenol and no one ever has the right supplies your kid needs for her central line. where alarms aren’t flashing on 4 monitors for other kids who are coding in the room next to yours. where there aren’t machines covering every square inch of space in the little rooms. Where they are able to hide medical equipment in nice wood veneer cabinets and not have it looming large, handy and QUICKLY ACCESSIBLE by your child’s bedside in case the unthinkable goes down. It has been wonderful to have the support that Kendall needed when she needed it – but I am ready to get back to our little microcosm of “regular sick”.

Kendall is currently trying to take a nap – but its hard when there’s a TV screen that is movable to being literally 6 inches away from your face with Cinderella playing on it.  (if you look in the top pic, you’ll see the tv screen on a swivel arm in the top left corner of the pic – it moves. It is currently VERY close to her head.) I’m glad to see some of her personality peeking through the pain. We were able to get the bed a little elevated and give her some meds through her J-tube. These are all encouraging signs that she is moving in the right direction in her typical little soldier pressing forward way. There is some very hush-hush murmurs about her possibly being able to get out tomorrow nite IF we can keep her pain under control without the morphine pump. If not tomorrow then Saturday should be the day. It is going to be a crazy week at home. We are hopefully going to be very covered with nursing help as she will still have a lot of tubes and drains and lines coming out of both God-placed and man-made holes in her body.

FOR THOSE WHO HAVE ASKED: (you know I hate feeling like i’m asking for help ever…) But if you have asked – up here in milwaukee, I am craving a few specific things that I’m not even sure they have up here. I know some have asked on FB, some via text, some I don’t even remember! Do they have a buffalo wild wings up here? Chick Fil A yet? If you were one of the ones who volunteered to bring me food stuffs – text me please! 630.803.3189 (and if that doesn’t apply to you, then please don’t worry about it!) Our visitors are restricted while we are on the unit, but once we are up to the floor, I think we can open visitors back up (family that claims me as a relative –this means YOU!!!)

Once we come home – oh who knows? I do know that one thing we will be in need of is DIAPERS. And I know that this seems odd – but once her drains come out, she will be leaking into diapers. Any size, any kind. With all of these medicaid changes, she no longer qualifies for medical diapers until she turns 4. And lemme tell you – this kid goes through a LOT of diapers. I’ll spare you details – but with a non functional bladder and a non functional GI tract – it makes for some crazy messes. I’m not asking you to go buy us diapers – I’m only saying if you happen to be able to potty train your kid and still have like half a pack leftover, or if you go up to the next size and have some leftovers – we will gladly take any and all donations for the next couple of weeks! Aside from that I can’t think of much right now. You’re all so great all the time – I just value your friendship and support and random crazy texts!

Ok i’m starting to get one of those “i don’t think i’ve eaten all day” headaches so i’m going to go raid the vending machines.

I’ll try to update the FB page for the blog and/or do a blog update later once we are hopefully moved on up to the floor! I dare you to not have that song get stuck in your head now…

love you all – thank you SO much for the prayers all nite – I am quite sure that is why things calmed down enough for me to get sleep!

 

peace out party people –

 

T-crest.