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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