Every day it seems like I've got to check my phone a couple of times before I remember what the day is and date. Makes me wonder why when staff does morning rounds they ask do you know what day it is - I'm healthy and I'm losing track of the days. And then there are the occasional walks through the hallways and often I have a difficult time telling if someone is just talking to themselves or on a Bluetooth device, then I find myself mumbling, lol, I'm fitting in too well.
Thanks to my sister and brother-in-law for sitting with Austin for a couple hours so I could go home, change clothes and shower. With Austin being here over a week, Gen heading to Milwaukee on Thursday for a hockey showcase (Austin said she should go, and said "Kick their butts girls!") Jerry needed to take care of some things on the home front. The Mikesell family has generously offered to take Gen with them and I know our team parents and coaches will take excellent care of her, no worries. I only want her to skate and play hard, have fun, and of course what Austin said "Kick their butts girls!"
Last night was very long, the IVIG treatment didn't finish up until almost 4 am, poor guy - mom just feels like she has a newborn again with the short periods of sleep.
The hemoglobin counts are doing what they always do, we were up to 5.9, this morning we're back down to 5.1, treatments for the Hemolytic Anemia bring it up a little but we always seem to fall back down. . He is once again on "NPO" nothing by mouth, they told me by 11 am they'll tell me if today will be the surgery day(spleen removal) or if I can get him lunch (It will most definitely be a hot dog day). We've got quite the assortment of things that Austin likes in our room or the floor fridge - he's giving hospital food a big thumbs down.
He was so excited this morning when we had a package delivered from Jessica and her family in Illinois. I've known Jessica for quite a few years through the FX support groups we're both involved in. Thank you Jessica for starting off his day with a big smile. He named his reindeer Austin (don't ask me why). (LOL – I want everyone to know later Austin corrected me, this is not a reindeer, it is a moose).
Hugs, Sally
And a later update in the day ...
Surgery will not be today. It will be either tomorrow or next week.
Hematology doctor will make the call, Internal Medicine doctor has the surgeon (Dr. Genaw) lined up who has the best ability to do this though a laparoscopic removal of the spleen. This week the surgeon is only available tomorrow, has Austin written in on his administrative day, if the Hematology doctor says we need to wait surgery may not happen until next week.
And even later in the day ...
We were both a little wiped out today, they've backed off on the numerous blood draws, just down to two a day now (if they get it right) just had to do a redraw for the evening test, don't have the latest numbers yet. If the hemoglobin is really low again they will give him another transfusion. Today we only have one IV in only one arm.
Early in the day, saw a few more smiles when he talked to his big brother Jon on the phone. We also called his classroom at Jo Brighton, he talked to Mr. Don and Jordan (I think). I had him on speaker and when Jordan asked him if he would see him tomorrow Austin said yes and I had to tell him "no" so then he asked about Friday (broke my heart I had to tell him "no" again).
He enjoyed his visit from big brother Jon, Dad and Genevieve, he's asked Gen to get five goals this weekend, :-). Missing Natalie a little but she had to work tonight.
Surgery, to remove his spleen, is scheduled for tomorrow, pre-op time is 10, surgery could be somewhere between noon and 1 pm. It could be about 2-3 hours long (because they are trying to do the Laparoscopic.) They will also do a Bone Marrow Test while he is under, there is something else they are seeing in the results, could be just from the Hemolytic Anemia) that they just want to make sure that there isn't another underlying cause besides the Hemolytic Anemia.
So this afternoon we had quite a few more doctors come in and visit and discuss the next step with us. Loved it when one doctor asked Jon if he was Austin's father, what can I say, the lights were out, I must look a little younger and Jon looks a lot older than his 33 years in the dark.
I won't be doing a morning update, and my update tomorrow might be a lot later than the surgery, we'll be busy getting him settled, we will be changing rooms, moving to the sixth floor, all rooms are private and they've told me I can continue to stay with him. Depending on which team I talk to (internal medicine or hematology) of course I don't have any solid dates for release if all goes well and the removal of the spleen corrects the hemolytic anemia. Our doctor from hematology I'm positive will error on the safer side, plenty of time to ensure that numbers are stable. I'm good with that, if we get home I want us to stay home for awhile and not have to rush back to the hospital.
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| This is what the afternoon looked like, so peaceful but he's so sick. If I tried to take away the tablet or change the TV channel (away from the History Channel) he'd open his eyes and tell me to put it back. |
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