I have an appointment with Dr Buescher tomorrow, and my On-Q pain catheters will be pulled, as the pain ball is empty-boo. Not sure if my drains will get pulled yet or not, as I still have about 80cc total output in a 24 hour period. I don't really have pain, as much as soreness. Sore like after a really kick ass chest, arms and back work-out where you can't lift your arms up afterwards! The muscles in my chest and under my arms around to my back will spasm terrible, and when it does that it hurts to even breathe normally. I end up doing my yoga deep breathing to get through it. And pop a Valium if it doesn't pass. I'm down to only a few pain pills a day and 2 Valium-one to sleep and one to get up and get ready with. I can't take any aspirin or ibuprofen or NSAIDs yet because of the increased risk of bleeding, so I pop an occasional Tylenol during the day to help.
I'm moving around really well, and being able to shower makes it so much better! I got to shower when I got home Saturday night and try to wash all the hospital funk and stickiness off me-thanks to my friend Jody. She brought me home, picked up my scripts, made me take my meds, and made me laugh. It helps she's a nurse, as she undressed and re-dressed my drain sites after my shower, and helped put the bald kid in bed. It's quite an ordeal getting both of us in bed right now, I'm so glad she was here to help.
We have been having a host of issues with Ethan's feeds, as his j port is clogged, again! We started feeding him through his gastric port last week, and trying to advance to his nutritional needs during waking hours. It's been tough, and slow. We have to be very careful to monitor his respiratory status, as he was switched to j feeds because he used to aspirate on his g feeds. Kind of scary putting him in bed after a feed in his tummy and hoping he doesn't aspirate. I end up asking Brian to go check on him a dozen times since I can't just jump out of bed right now. Tomorrow we are headed to GI to get his GJ switched out for a regular MicKey gastrostomy tube and hopefully just be done with J feeds all together!
Monday Brian took him to his first OT Vital Stim appointment to work on swallowing. This is where they place electrodes on the neck and increase electrical impulses to initiate a swallow. As we work on oral feeds with him, he has to have a better, more consistent swallow, or he could aspirate. He did awesome, and his OT is the Aunt of one of Hailey's best friends! He was on the machine for 32 minutes-which she said was awesome for his first time. He ate frozen applesauce and lemon juice. I'm going to stock up on some gummy bears, sour patch kids, hot tamales and other strong flavored foods to take to work on with him.
Ethan also got to get back in the Therapy pool today! We were so excited and nervous, as his past experiences with warm water have ended up with him in the ER due to episodes of not breathing. I got very anxious as Brian lifted him out, but he did just fine. Won't means I won't hold my breath every time. At least we are super close to the ER if needed....
E also got his new glasses and hearing aides this week. He looks so sharp! And it's funny to see him look around with his glasses on-he was really, really nearsighted! And he's been talking like a crazy man since he's had his new aides. I'm sure he will get tired of hearing my voice loud and clear real quick!
Parker ran his best 200M at his track meet on Monday-2 seconds faster! He shaved a little time off his 100M and threw a foot and half farther than his longest discus throw! We are so proud of him. Now if we can just get him to do his homework and turn it in, the world would be perfect.
Hailey had a great time at Jonny's Prom in Wichita-thank you everyone who made it possible-Dad and Teresa for getting her to Emporia and Jonny's parents for getting her back to KC Sunday. She wouldn't have been able to go without all of your help! She has one more volleyball tourney, Regionals, not this weekend, but next. Fortunately it's local.
I may need some driving help next week. Definitely some lifting help with the bald kid. Brian is back to work this weekend, and E has a few appts next week. I can't lift him at all yet and will need someone to accompany me to get him from school and take him to his OT and PT appointments. One is up North at CMH, and one is downtown. If anyone can help-shoot Brian or I a message or text. Thanks so much for everyone's help and for the dinners! Tonight was chicken and rice from Kathi Clapp-and it was delish! Not a morsel left!
Off to sleep for a few hours before appointments!
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