Sunday, July 24, 2016

BIRTHDAY GOOD - EVERYTHING ELSE, booooooo

And here's the rest of the story! Didn't want to be all wha-wha, gloom and doom in yesterday's blog. Wanted to focus on Colby, his birthday and the amazing young man he is becoming. Oh, and he IS amazing. I went in to check on him this morning. He was still sleeping, so I just stopped and looked at him for a couple of minutes. So sweet, so strong, my absolute everything. I'm truly blessed for each and every day I have with him, whether they're good or bad days.

So let's talk about some not-so-good things that are going on around here. I've been sick with a head cold/sinus infection for almost a week, and it has totally kicked my butt! I felt better Tues, then felt so-so Wed and Thurs, and Fri felt like crap on a cracker. Blah! Stupid, stubborn me kept thinking, I'll start feeling better anytime now. Well, I didn't. Yesterday I finally broke down and got some real drugs. Thank God for friends who are nurse practitioners! Thank you TO! Now I'm on an antibiotic and steroid pack. Already feeling some better. I love drugs, haha!

Friday was not a good day for me. It was Colby's birthday and I tried to stay really positive and focus on that. But sometimes everyday life comes along and gives you a thunder punch right in your throat. Originally Colby's bday party (keeping it simple this year, just cake and ice cream) was supposed to be today. So my sweet mama was over helping me get some housework done. I really struggled. I was sweating, wheezing, hacking my head off, miserable. I kept asking Mom and Nurse David, aren't you all hot? Aren't you burning up? They kept saying it was because I didn't feel well, and they were probably right. Mom left around 1:30. I kept watching the thermostat. Throughout the day it slowly started creeping up again. I got brave and felt the vents – no cold air coming out. So, three strikes and you're out. Our AC is officially done/broke/stick a fork in it/getting a new AC unit this week. Ugggggh! I had bought a portable AC to have as an emergency backup. It sat in the living room forever. Dad helped me take it upstairs just last week. So Nurse David, God love him, helped me drag it back downstairs and helped me get it running. Then my friend Mary brought over a window unit. So we're quite comfy around here really. And someone came out last night and charged the old unit one more time. We'll make it until the new unit is installed. Yep, home ownership woes. Just going to bite the bullet and do it. Have to. Kid, and this mama too, NEEDS air conditioning.

Then the nurse noticed Colby's pressurized air mattress wasn't working. Oh just fantastic. We took it off Colby's bed. We've looked for a tear, checked the hoses, etc. Can't find the problem. I have no idea if insurance will approve another one. So that's on my list of crap to get accomplished next week also. Actually we've had several weird phone calls lately. Apparently Colby's primary insurance is up to some shenanigans, and believe me, I'm NOT in the mood to deal with these a-holes. I get a call a couple weeks ago from Colby's DME that insurance is not longer approving Colby's backup vent. Uh, excuse me, WTH is that about?! Anyone who knows any single thing about trachs and vents knows you must have a backup at all times. What am I supposed to do if God forbid his vent goes out and we didn't have a backup? They are being complete jerkoff, moronic idiots. So I've been on the phone with the DME and Colby's pulmonologist trying to get that resolved. Then on Friday I get a call from Colby's pediatrician's office. They received “urgent” paperwork from Colby's feeding supplies company asking all these questions about his formula, current height and weight, just a bunch of BS questions they should already have the answer. And Colby's pediatrician doesn't even handle his feeding issues. That's his nutritionist here locally and in Cincy. Oh good Lord. She gave me the name and number of the dimwit who sent her the “urgent” paperwork, so I'll be calling her this week also. After that I just went into shutdown mode. AC broke. Pressure mattress broke. Equipment and supplies issues. And I felt like doo-doo. I was done. Just done. There was no way I was having Colby's bday party in a house without sufficient AC. Plus who wants a cupcake after I hacked all over it?! So I made phone calls and sent out text to postpone/reschedule Colby's party. Sorry kiddo, mama just couldn't make it happen this weekend.

We have a busy week coming up. Taking kid up to Cincy Children's tomorrow for a DEXA scan and sleep study. When we are discharged early Tues morning, Grandpa and I are taking Colby to the Newport Aquarium for his birthday. Wed Colby has a well check visit at the local pediatrician and I have to work. My list of phone calls seems to be growing by the minute. I'm just thankful I'm starting to feel better. I almost canceled Colby's sleep study. I thought there is no way I can do this when I feel the way I do. But I think I'll be ok. My meds have another day to do their magic and let's face it, I'm just a badass anyways. I will survive. I always do.

I'll blog again soon and hopefully I'll have something accomplished with these issues we're having with Colby's supplies and equipment. It NEVER ends. Dealing with idiots never, NEVER ends. Welcome to my world.

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