Monday, July 29, 2013

Last Week

So last week consisted of...a trip to the ER, a day at the pool with one of my best friends and her girls, two days of doing absolutely nothing except arguing with the doctors office over prescription refills, and a day spent at the pain clinic followed up with a wonderful date night at The Melting Pot.

Monday CJ's pain was through the roof for the better part of the day and then he couldn't feel his thighs or his arms which forced us to go to the ER. We were under the assumption that they would run a CT or MRI just to make sure nothing more serious was going on but they didn't. They did some blood work (which is a huge waste of time) and gave him two different pain meds & some anti-nausea meds and sent us on our merry way 4 hours after we arrived.

Tuesday we spent the afternoon at the pool with my best friend Tracy and her two girls. Tracy and I have been friends for the last 7 years. We both joined The Little Gym when our oldest kids were 18 months old. Deqlan and Gracie have been the best of friends since then. We both belong to the same pool and the kids have been on swim team together for the last 2 years and they both are in love with baseball/softball. Tracy's youngest is a year older than Hayden so they get along well which makes for fun times when we are all together.

Wednesday and Thursday were spent doing a whole bunch of nothing around the house. A few phone calls were made to find out why we hadn't received a Fed-Ex package with CJ's prescriptions (for narcotics that can't be called in) only to find out that the doctor was supposed to call us on Monday when we requested them to let us know that he was no longer filling CJ's prescriptions and we needed to take it up with the pain clinic who we had an appointment with on Friday. Cue frustration that everything thinks it is ok to keep a patient who is in a ton of pain every single day to wait for meds that really don't cure the pain but they help subdue it.

Friday morning was CJ's appointment at the Pain Clinic at 11:40. We live an hour away from all of his current doctors...yes it sucks but we go where insurance tells us and it is Duke so it's not all bad...in any event we arrived about 10 minutes early (we arrive early to every single appointment that we have advance notice of)...We were called back right at 11:40 and the nurse takes his vitals and updates his medication list and promptly sends us back to the waiting room telling us there is one patient ahead of us...40 minutes later we are still waiting to be called back when a nurse comes out to check who we are waiting for...Once she found out we already had vitals taken she couldn't believe I was upset we were still waiting...Umm really?? My appointment was at 11:40 it is now almost 12:30 and I have had to find someone to watch my kids for a few hours that is now turning into longer because you can't keep your schedule running on time?? Yes I'm upset!! They take us back to a room where we then proceeded to wait another 30 minutes before the doctor popped his head in to apologize and sent a resident to talk to us...Here is where my frustration gets even higher...CJ has a very rare and complicated disease...It is very frustrating to have to explain it over and over again to multiple people (reason number 1 I hate taking him to the ER)thankfully the resident spent a few minutes reading his chart and was pretty up to speed on everything...They took him off a few meds and added a new med that we unfortunately haven't been able to start because the pharmacy never received it...Hopefully we can get that taken care of today and get him started. This medicine could take away up to 30% of his pain which isn't a lot but it is better than nothing.

My parents offered to take the boys for the night Friday night so CJ and I headed to The Melting Pot for a much needed date night with no stress of doctor's visits or the boys acting out for his attention. We ended the night with some birthday shopping for Hayden who is going to be 4 in 3 short weeks!!

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Wednesday, July 10, 2013

Let the Stalking Begin!!

A few weeks ago I wrote a review about my Plum Paper Designs planner and stated I wouldn't be repurchasing the Erin Condren Life Planner. I lied :-) I ordered a new life planner while on vacation and it shipped yesterday!! I'm hoping to use it differently than in years past by using it for my classes...hopefully it works.

CJ will be getting another blood patch done in the next week or so as soon as the doctor has an opening. It is hard to watch him in so much pain each and every day, but, it is just as hard to watch him lie around and not do anything because he is in pain. There are so many days when I am so frustrated with him because he won't get up and do things. Or I'll ask him to do something while I go run an errand and he won't do it because he hurt too bad. I understand he is in pain, but there is still a house that needs to be cleaned and two boys who want their dad at their events (he missed last nights swim meet because of pain). It is so hard to not lose my patience with him on a regular basis!

Last nights swim meet started off disappointing. After last weeks meet where Deqlan had 4 main events and was swimming on both relays, we got to the meet last night to find out he was swimming all heats and no relays! But that changed pretty quickly! One of the 9-10 year old boys was there but had an ear infection so his parents told him he couldn't swim but never told the coach. So Deqlan swam on both relays with the 9-10 year olds. He only had a few minutes warning before the medley relay where he was going to be swimming the backstroke to start it off. Backstroke is definitely not his best stroke...unfortunately he hit the lane rope about 3/4 of the way down the pool which is an automatic DQ. The Freestyle Relay went a lot better! He swam the 2nd leg and caught them up. By the time the 3rd swimmer was in the pool we had a huge lead that we held on to and ended up winning :-) Deqlan was so excited! Overall we still lost the meet but we were down 50 pts going into the final relays and only lost by 29. One more meet next week and then we will have another swim season under our belts. And we will have a few weeks to relax before fall baseball starts!!

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Monday, July 8, 2013

5 for Five!!!

Time to get back on the ball with getting things done around this house. That is easier said than done with CJ not working right now but it is what it is!!

I'm linking up with Jessica & Jenn for 5 for Five this week!!

1. Cancel CJ's appointment at the pain clinic and make Hayden's well check appointment. And now get another blood patch scheduled asap. So we saw the pain clinic at Duke a few days before we left for vacation (they were able to squeeze us in) well no one had told us they had already made an appointment for July 12th. They were supposed to cancel it but guess what I got in the mail Friday, a whole packet of forms to fill out for his "new patient appointment" July 12th!! Hayden's birthday is rapidly approaching which means it is time for another well child checkup and I need to get that booked soon since his birthday falls right around the start of school. The doctor that does CJ's blood patches called yesterday (yes on a Sunday & this is why we love her!) to check on him. She is concerned the blood patch didn't hold or moved too much so she will be calling today to get us in for another patch ASAP. Hopefully this one won't end us up admitted in the hospital but if it works I really don't care if we do or not!

2. Find someone to help CJ mount our TVs. CJ's cousins bought us a TV for our living room when they were here in September (yes almost a year ago) and we still haven't opened it! We bought the wall mount a few months ago and now just need someone to help him put it up. We also bought a new TV for our bedroom for our anniversary this year and need to mount that one as well. I am tired of staring at the TV box & the box that the mounts came in!!

3. Start a school shopping list. Deqlan's school supply list is already on the school website and while he doesn't start school for another 7 weeks I don't want to buy everything at one time. We've already ordered his new bookbag which should be here early this week.

4. Figure out if I am going to take 4 online classes or only 2. My tuition is due Monday so I would prefer not to pay more than I am actually going to take. I am registered for 4 classes but think I will drop 2 since I am planning on working this year instead of just taking classes.

5. Come up with a cleaning schedule. If I am going back to work in September than I need to have a cleaning schedule in place! It will still only be part-time but it will be Monday-Friday from 9-12:30ish. I more than likely have a job working at Hayden's preschool :-) Photobucket

Sunday, July 7, 2013

I'm Back!

We've been back from vacation for a week now but this past week was a little hectic with an all day appointment at the hospital, swim meet, and lots of time with family and friends.

Our vacation away was wonderful. It didn't start off all that great. We had to take Deq to urgent care the morning we were leaving with swimmer's ear. His ear had been bothering him all day Friday but he waited until 10:30 Friday night to tell us. We got up to the mountains with no issues and hit the grocery store and produce stand. Sunday we spent the day at the water park and then ended up in the ER with CJ later that evening. His pain has been seriously out of control where NONE of his narcotic meds are touching the pain at all. After Sunday nights ER visit (where I had to tell the doctor what meds to give him) he took it easier & we were able to stay out of the ER for the rest of the week. We typically spent the days at the water park. Wednesday we did the tour of the new units that they are building and relaxed. We attempted to do the Kids Obstacle Course (Deqlan was dying to do it!) but there were storms in the area that prevented it. We ended up doing the bounce dome and playing a round of miniature golf. Thursday morning before we headed to the water park we took the boys back up the mountain to do the obstacle course and summer tubing. I ended up doing the Mega Zip Line with CJ which is HUGE for me! I do not do heights at all!!! Friday was our last day there. We of course spent the last day at the water park & started packing up to come home. We love our week up at Massanutten. It is absolutely beautiful. We had ducks outside our unit every day and even saw some deer in the yard too. We usually go every other year so it'll be 2 years before we are back and that makes me sad!

Monday morning we were at Duke all day for CJ's blood patch. We did not end up admitted in the hospital this time like in January but we are not seeing the improvements we saw after that one either. I have a feeling we will end up back at Duke sometime this week. His oncologist wrote him out of work for 4 weeks at the end of June (which we still have no explanation as to why specifically). He should hopefully be back at work July 29th.

I hope to start blogging more regularly again. Swim team ends in a week and a half so life won't be so crazy.

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