Wednesday 1/31

Well, apparently Gideon had a bit of a fussy night last night. He is pretty unpredictable with his moods, either he is completely chill and pretty sleepy or he can be a crank pot and you just never know when he will be which way.

The occupational therapist came in to work with Bo this morning on binkie training again and set Gideon up with 10 ml of food which he promptly ate in it’s entirety. He is training well with the binkie and getting much better at the suck/swallow/breathe reflex and not coughing as much up into his nose as he did before which is great. If he continues to do well today, they may try to bottle train him tomorrow. They will cut back on his NG tube feeds as he increases to get more amd more by mouth which is great as well. They are playing a very delicate balancing game with weaning the Milrinone (the cardiac drug we have to get off of to get out of Intensive Care), adding the Captopril (different cardiac drug they are using to wean him from the Milrinone) and balancing his fluid intake, output and Lasix doses while also monitoring his kidney function which is greatly affected by all of this. His kidney function is declining with all of this but not to critical levels yet so they are just teetering trying to keep his kidneys going while his heart improves. It will probably take 4-5 more days to wean off the Milrinone if all goes perfectly then he has to maintain a bit before we are cleared to get out of Intenstive Care and onto “the floor.” I can’t believe he ate 10 ml on his own though, just last week he couldn’t even choke down 1 ml because he didn’t know how to do it so he is making great progress which is encouraging.

Of course, eating  huge meal like that is exhausting and he promptly went right back to sleep. Hopefully he is getting chubby & strong while he’s doing all this eating and sleeping. Apparently he didn’t get a bath last night so maybe he will sleep a bit better tonight if Bo helps them give him a bath when night shift comes on before his night time snuggles so he can eat, poop, have a bath, have some snuggles and settle in to rest for the night. And look a bit cleaner, he looks like quite a filthy mess with dry skin and milk all over his face. LOL.

When he came back from his surgery, he had a dedicated nurse who basically just posted up in our room 24/7. He has since graduated needing that level of care and his nurse is now split with the room next door so they sit right outside our door in a nook looking into the window of both our room and the little boy next door. Sadly, the little boy next door is not quite as stable and requires quite a bit much more care than Gideon does, Gideon is fairly stable and his alarms don’t bing and bong as often and when they do, it’s usually because he moved and something came lose and it will go back in range in a few seconds if he settles or scoots or something so the nurses usually only come in for their vitals checks, IV flushes, medication administration, monitor swaps, stuff like that so he can actually be left alone completely for an hour or 2 at a time if he’s resting now which is nice.  Some of the nurses really seem to care for the patient, for how he looks and what I want and others seem to just want to check off the boxes on their checklist and do the required vitals checks and nothing more so I like the nurses who actually treat him and work with me to take care of him the way I want them to.  Like giving him a bath. It is a 2-3 person job because he still has so many leads and wires and IV’s that he has stuff hanging off of him everywhere that can’t get wet so if we have 2 nurses, 1 of them holds him up, 1 has water with a washcloth and I’ll soap and scrub him up.  if it’s just 2 of us, usually I hold him up while they scrub him down with a soapy washcloth because they are far more comfortable with scrubbing off all the peeling skin than I am. Some of the nurses look at his skin and say how he needs lotion and they will order lotion for him (I have lotion that I add Frankincense oil to and usually just use that, I just have to get permission first just in case) but it’s so nice for them to actually look at him as a little person and see the goop in his eyes and want to clean it out for him or the crusty milk all over his face and want to wipe it off rather than just look at him like a lump of nothing that needs a arm & leg blood pressure taken and an o2 sat monitor swapped and new leads swapped out, check it off the list and head out of the room. Of course, that’s all stuff that Bo and I should do for him as well but if it’s been a few hours and we haven’t done that or Bo doesn’t see it because he doesn’t know about all of that stuff, it’s nice for the nurse to either do it or bring it up so we can do it just to make him more comfortable.

As for the big boys and I, we are doing good today. We are detoxying from electronics today and haven’t had any video game or Ipad time today. We played Uno, built a fort, played hide and seek, did a little school stuff, colored, played chase, cleaned up and have just had a nice, chill day inside. I woke them all up super early in hopes of getting them off to their first day of school but changed my mind and decided to keep them home instead. I’m too nervous about exposing them to all the germs out in the world that we just can not have in our house right now so we are keeping our germs to ourselves and avoiding germs from others for now. I certainly can’t get sick again because we can’t risk anything with Gideon. I just put on a quick show for them to sit down and write this and make them lunch before we all lay down for naps in a bit. They really need hair cuts and love bath time but we’ll see just how motivated I am tonight if we do any of that stuff. :) A neighbor is bringing us all dinner so I don’t have to worry about that. Last night we had Costco pre-made chicken tortilla soup, that was SPICY! I’m shocked the kids at it! But they did, good thing for me I had a salad to eat because it was too hot for me.

Prayer requests:
– Improved kidney function & cardiac output for Gideon
– Continued improvement with feedings & attempt at bottle training tomorrow (how sad is it that I’ll miss my babies first ever bottle? *sob* hahaha) :)
– Another successful night of decreasing the Milrinone
– Good rest & healing for all 6 of us. I know Gideon didn’t sleep that great last night which means Bo didn’t sleep that great, we all need rest and healing!
– An AWESOME night nurse who wants to care for him well and will do a bath and help Bo feed him and help them snuggle, etc.

We can’t thank you enouhg for the continued prayers, support & encouragement! Much love & many blessings!