There are so many days where I feel like the whole world is working against me--like all of my efforts are getting me nowhere at all.
Yesterday, Brandt was scheduled for his MRIs. They called me the day before (Wednesday) to go over all of the pre-op do's and do not's, and they prepared me for the seven hours that I should expect to spend there. I carefully wrote down each instruction they gave me and prepared myself for what would lie ahead on Thursday. Still, I knew Thursday would never happen....
Monday at school, Brandt's eating was not good and his teachers seemed to think he was starting to come down with something. Tuesday morning, I left for work after telling my husband to call and schedule him an appointment with the doctor. He reluctantly called, but Brandt's pediatrician and ENT were both booked. I told him to take Brandt to the Pediatric Walk-in office, but he was concerned that they would not know how to treat Brandt (with everything else he has going on). Furthermore, he said that Brandt seemed to be fine and didn't need to see a doctor. Tuesday night, a belly bug reeked havoc on my baby's sensitive belly, and he woke up Wednesday morning covered from head to toe in diarrhea. Still, I had too much going on at work and sent him to school. Around 3:30pm, Brandt's school called me to pick up Brandt. He still had an upset belly, and his fever was 101. I tried to hydrate him, but he refused everything I offered. By Thursday, his fever was souring past 102, and the anesthesiologist said they would not sedate him while he was sick. So, no MRIs.
I was mad, frustrated, annoyed. I was outraged that maybe this could have been prevented if he had been taken to the doctor when it was first starting, Monday. I was mad at the world, but the only one able to take my frustration was my husband. Poor guy took the brunt of my moment of weakness, and I took the brunt of his. This is such a difficult thing for us to go through, and the process is definitely taking its toll on us. Part of me, in the heat of the moment, thought that he was relieved that Brandt was sick because he was against the MRIs. Of course, I know this is not true because already paid the hospital fees. But, in that moment, I just felt like to whole world was working against us.
And then came the rescheduling. Brandt is always sick. He has pretty much had one infection after another since the end of February. And they schedule MRIs a month out, so he now we are looking at mid-June. And, heaven forbid that he is sick then--so then we would reschedule for July? Aug? Never? Like, I am not trying to be so pessimistic, but it is a fact that he is ALWAYS sick. So, believe me--that week in June--Brandt is not going to school. He is going to live in a bubble!
Bound not to let the day go to waste, we took Brandt to the ENT and got him an antibiotic. We then drove over to the hospital to get a copy of his newborn screening--which the geneticist was hoping might give us some insight into his abnormal labs performed by the neurologist, showing elevated levels of acylocarnitine. The newborn screening offered not one drop of insight. It was the most vague lab report I had ever seen. It did not give values, but, rather, stated "in normal range." I wanted to know the specific value just to see if it was on the higher side of the normal range, but apparently life is just not that simple.
The rest of the day consisted of a lot of Brandt crying, screaming, souring fevers, and refusal to eat or drink. My husband actually had to give Brandt pedialite out of a medicine dropper so that he got some fluid. The night was rough, and it was past 1:00AM before he was sleeping soundly. Poor baby.
The good news is that his fever did finally break, so I am hoping that he will be feeling better for his party tomorrow. All we can do is give him his medicine and continue the fluids. Prayers for my sanity please because I am at a point where I just feel like my back is against the wall and there is just no more moving forward.
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