It's been a good day. Just an awesome Saturday. I got up and went on a run. Reed and I hit the grocery store and came home to Beau and Gaines in a morning nap. Lunch out and then swimming. Both boys napped...AT THE SAME TIME. They actually fell asleep in the car so rather than risk getting them both in the house without anyone waking up we just rode around. Grilled hamburgers for dinner and everyone just getting along with no major issues. An awesome day.
Sorry for the lack of posting this week but its been a busy week. I gave myself Tuesday off because I had such a blah day on Monday. I seriously did nothing. Wednesday I straightened up and made a cake for the next day's company. Thursday we had some friends in town that spent the night with us. I served them a fabulous dinner of Pizza Hut but I did at least make a cake. Friday we planned to go to an outdoor symphony picnic event in town but it was thundering shortly before we planned to leave so we decided to just have our friends that we had planned to go with come over (and I know that is a crazy run on sentence). Its been a busy week but a good one.
Sorry...I got off track. I started that to tell you about the changes in the latest Gaines plan. I called Thursday to schedule Gaines' hernia surgery because, go figure, the urologist office hadn't called me like they were supposed to. The surgery is scheduled for September 13 but will probably be rescheduled if Gaines is not completely off oxygen by then. The urologist's nurse told me that anesthesia will not let them do an unnecessary surgery to a child on oxygen. Which, for those of you who cannot remember...IS EXACTLY WHAT I WAS SAYING.
Anyway, I called to let the pulmonologist know of this new development and find out what we can do to move forward with the oxygen/meds weaning. The new plan for that is to cut back on his diuretics from twice a day to once a day for two weeks. If that goes well, we'll cut them out all together. After two weeks of no diuretics, we can cut the oxygen to a quarter of a liter. That's as far as I've got right now but...the only thing to do after all of that, is to start with trials off oxygen. Please pray that this all goes well.
Also just a quick note because I know I sound a little jaded over all the doctor visits. I honestly, 100% appreciate each and every doctor and nurse that we see but I am just SO tired of the medical community as a whole. I mean every doctor tells you something different and you don't know who to listen to and doctors SPEAK TO EACH OTHER ON THE PHONE and then you go to schedule the surgery they discussed and...nope there was a miscommunication. And do not even get me started on billing and insurance issues. Do you know how many bills I would have paid that insurance covers if I hadn't been paying attention...or just given up on the negotiations between the insurance company and the billing department...because the two will not talk to each other. You have to be the mediator. Sorry for that rant...I'm just burned out on it all but certainly willing to do it. Have I mentioned how awesome Gaines is doing lately? He really is.
Man I'm using a lot of words tonight.
A quick note about Reed. He scraped his toe tonight and there was a little blood so we put a band aid on it for him. He immediately developed a limp.
Also...tonight he was in the tub and I heard him singing: "He drank up all the water, he ate up all the soap"...Who knows it?
Eener meener! Beau didn't know it and I couldn't remember much more of it so I had to look it up. Its been in my head all night.
I woke up Sunday morning
I looked up on the wall
The skeeters and the bed bugs
Were playing a game of ball
I'll let y'all look up the rest of the lyrics if you care.
One last thing. I had to take Reed to the doctor Friday...because we hadn't been in a week and we couldn't let a week get by without a trip to the doctor...but we learned that Reed had two ear infections. Awesome. Anyway, he and I were in the waiting room and we were looking at the letters of the word "pancake" that was on some kids' magazine. I was going over the letters of the word with him and got to the second A and asked him what it was...thinking that seeing the first A might trigger the correct response. He thought about it for a second and said, "Ummmm...Monday?" I guess we need to work on letters.
Alright...y'all have a good holiday weekend. Sorry for the most random post ever.
Love to all,