Two weeks have now gone by, to say that we both miss our old normal is very, very, much an understatement.
Yesterday we were able to be on a clear diet with a small twist. Austin has specific tastes and likes when it comes to food - textures, smells all come into play. His clear liquid diet consists of Apple Juice, Hot Tea, soup broth, Jell-O and Popsicles. In the home environment we've become accustomed to his likes/dislikes, and yes we cater to them to ensure he's eating. Breakfast is always a Grape Juicy Juice (in a specific glass) and a lightly toasted bagel with cream cheese. He will only drink Grape Juicy Juice - I've tried others but he just won't drink it, once we were close to running out and there wasn't any on the shelf at the store. I bought a different brand but put it in the Juicy Juice bottle when Austin wasn't looking - I couldn't fool him, he wouldn't drink it. Brought in Juice from home but now I think he doesn't like things in Styrofoam, always something :-).
From his clear liquid tray he only eats the Jell-O. I got permission yesterday late afternoon to give him Capri Suns and just a few pretzel rods.
A few days ago the repetitive speech was all love for mom, now its two things, "I'm hungry" and "Can I have a snack?" Boy does that get old fast but I'm taking that as a sign of improvement.
He's not feeling the love for mom lately, and believe me at times it's mutual. If he starts giving me a hard time I just leave the room for a little bit (a little time without mom is not a bad thing because he misses me). He was very grumpy to me this morning, getting agitated and at the time he didn't have much to be agitated about (shortly after he did). Nurse Assistant poked and poked him this morning, he didn't want me to talk, he didn't even want me there so I went for my morning Mocha, Mocha, and I let her poke away (bad Mama). When I return I find the nurse in our room trying to accomplish the blood draw, she did but of all times to forget to label the bottles it would have to happen today. So she had to redo the blood draw shortly afterwards.
The anti-nausea med just knocks him out, I think that creates some of his grumpiness lately, to me he was a much happier, cooperative kid before that med was added. I don't know anyone who is fun to be around when they are overly tired. He's not complaining about any pain, and when I touch him there are no whimpers, so we haven't given him any pain medication since last night (not sure if it's the right thing to do but he seems to be doing okay, we'll see how today goes, so difficult to judge). His medication cocktail of late is huge, before we entered the hospital he was only on one Abilify in the am and one Paxil in the pm. He takes six pills in the morning now. How much does anyone want to wager that Jerry, the engineer who has spreadsheets for everything (but doesn't know how to operate our new washer and dryer, who likes everything to be exact) is going to be miffed that all his budgeting for our medical flexible spending account was just a waste of effort? I can't wait to see what the co-pays are going to be, his Abilify alone is $50 a month, I'm so thankful we can manage, now that he's over 18 it comes out of his Social Security Income (SSI) funds and I'm so sad for many of the parents with children with special needs who have a difficult time managing. I know parents who have had to give up a job so they would qualify for assistance and Medicaid for their child because they couldn't afford the cost of medications (sad world we live in at times). Hoping by the time we leave the hospital our med cocktail will be reduced by a few meds.
Yesterday Jerry and I both took a break together, let's call it a date (even though it was very brief) went to Sala Thai in the Eastern Market Area. Wow! Did my mouth ever enjoy that wake-up, wonderful spices and tastes, it will make it easier today to deal with the limited choices for food at the hospital. Sad that they took the Little Caesars stand out of the main concourse (they only want "healthy" food) it would only have provided a little more variety for me.
Yesterday Austin was seriously freaking me out by how much and severely he was avoiding eye contact, weird, weird, and weird. He'd have his eyes way rolled back into his head or way off to the far right or left (I'd make him look at me and he briefly would but then he'd quickly avert his gaze). He was alert and would respond to all questions, all requests - just plain weird. I have seen him on occasion briefly do this before, very, very rare, but on Sunday it was pretty intense.
Genevieve made it home safely from Milwaukee. She came very close to getting Austin his five goals he told her to get the last time he saw her - 4 goals and 3 assists (I think on the assists, not sure if one of the assists was credited on the score sheet). In her last game she went into the boards hard, knee first. Same knee that she got carted off the ice on a stretcher once at the Suburban Ice Arena. She calls me from Milwaukee upset and I'm frustrated because all I can tell her is ice it, take Motrin and come home. I'm thinking it's just badly bruised again, if it's anything else I'm guessing that's going to have to be added to dad's plate since mom is a little busy here. And when I ask dad how it is, I'm told it's sore to touch, one day at a time, hoping Jerry will moderate it closely.
Have I told you lately how much I hate this kind of busy, always waiting, waiting for one test result or another, waiting for doctors to make rounds, never knowing the time, waiting, waiting, waiting. Thank goodness for technology, it's provided a distraction, otherwise I'm betting I would have easily read all eight or so books in my to-be-read pile.
Since its Monday I'm hoping we'll see our hematology doctor today, our hemoglobin count is pretty stable, 10.3 yesterday (day before it was 10.4 and I'm not worried about such a slight drop). I believe she'll dictate how long we'll be here.
Well the chapter that marks our two week anniversary is more than long enough. Happy thoughts folks, be good and do good, especially for others.
Hugs, Sally
Monday morning was a "he loves me, he loves me not" phase and I was feeling a lot more of the NOT. Stepped out of the room a few times in the morning because he was agitated towards me. Ah, the rewards I receive for my time spent with him, I'll just chalk it up to lack of sleep and too many med changes in a short period of time. I still don't have the specifics on what he had an allergic reaction to, I do know post-op they gave him Dilaudid, and shortly after that they gave him hydrocortisone after giving him his Dilaudid dose. Disappointed that no one discussed this with us.
The surgeon was by early in the morning, as of 3:50 pm still no sign of hematology. Last count went down a little, 9.6, much more of a tenth drop we saw the other day. Potassium very low but I convinced nursing staff to just order the pill form, I know it's big but he can swallow it with no problem, he will not drink any drinks if you put anything in it
They took away the anti-nausea med that completely wiped him out, very, very tired, may have been affecting his mood as well, in the am, he's been having Capri Suns and pretzel rods, and not a meal for a champion but it was staying down.
Difference in mood from morning to afternoon was huge, he's lucky he changed his tone or maybe I would have slept in my own bed Monday night. I had a backup plan in place, I would have left his room a couple of hours, just hung out in the waiting area, just enough time to experience life with mom or dad not by his side.
Feels like a long day, every day, because there are always numerous interruptions, heparin shots in the stomach every 8 hours, vitals every four, IV bags running out and needing to be changed, med schedule and it seems like nothing is synced up. Such is life....
They caught me quite by surprise at 5 pm today when they dropped discharge papers off, Nobody told me today he was going to be discharged, he still has an IV in for some reason I thought they'd give us a period with no IV. I thought they'd give me a heads up. YES we want to go home, YES we want to sleep in our own beds.
I insisted that I feed him first, he had one chicken tender and about four waffle fries, one chocolate milk. We made sure he ate slow, small bites and he really enjoyed his meal. Natalie and Dad were with us at the time so Natalie and I made a subway run and left him with Dad. Before we returned to the room Austin tossed his cookies just minutes after eating and I refused the discharge. It was rather nice to miss that episode, glad Dad got to experience a small part of Mom's life lately.
He'll go on the anti-nausea med again tonight and if they insist on discharge I'll do it early in the day, hoping the med will get his home with no problems (I love Austin bunches and bunches but I'd rather he didn't toss his cookies in my Flex :-)). I'm just hoping that somehow I'll sort out his food issues (at least at home I can have better selections available that I'll know he can eat, will eat, like kids yogurt). I'm just not comfortable with an evening discharge knowing there are things I need to take care of like all the new scripts being filled - what if the pharmacy doesn't have them in stock, I don't want to be under the gun knowing I've got to have them for first thing in the morning, I'll feel much better starting the re-introduction to home in the daylight, I'm not sure if we'll still be dealing with nighttime incontinence or vomiting but I want to be prepared to deal with it.
So, my many friends with children on the Autism/Fragile X Spectrum if you have a hospital stay, planned or on planned, from the start make sure you layout the discharge plan that will work best for you and your child
Hemoglobin count is staying in the high 9's low 10's, hematologist thinks we're okay on that level and we have our first hematology appointment scheduled for Monday, Dec 23, at 1 p.m. I think we'll have a follow-up with our internal med doc as well and we'll be on steroids for about 2-3 months.
Once discharged keep your fingers crossed all goes well and we don't end up back here.
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| This was bugging me, not the best picture but displays a little of what he was doing with his eyes, when he'd talk to me they'd be looking way up, avoiding eye contact at every opportunity. |
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