Just Another Manic Monday

Good Morning,

Well, yesterday was busy and sad, to say the least. Bethany was in a lot of pain, and it has taken almost 24 hours to manage her pain, but I think it's going to be good. She finally got on a PCN (pain pump), and after a few hours of that not being enough meds, they added a button that she can push every 15 minutes for an extra boost of medication. This way, if she is sleeping, she won't get any, but if she really needs it, she will.
Bethany neck has hurt her tremendously, and it has been the source of constant pain. Her incision is almost healed and looks great. Her back, however, seems to hurt a lot, too. Most likely, from laying in a bed for so long. Bethany has worn the neck brace for the majority of the night, just for comfort, as it is not required.

Well, Bethany had a pretty good night, if I do say so myself. She was given a sleep aid (Ambien) at 9:00 pm, and that assisted her in sleeping, on and off, for a couple of hours. She was awake every 15-30 minutes, but at least she was able to get some sleep. She was given another Ambien at 3:00 am, so she is still groggy and not totally 'with it.' The transport team arrived at 8:00 am to take her for an MRI. My main concern is her pain management, light and sound. My goodness, people just do NOT know how to whisper, even when I constantly ask if they could please speak quietly to her and around her. She's not deaf, just in a lot of pain.

The monitors are constantly beeping; lights are constantly being turned on bright, and people are constantly (and inconsiderately, I may add) talking really, really loud in her room and around her. She is currently getting an MRI of her brain. She is also going to have a lumbar puncture sometime today to determine the extent of the meningitis. Dr. Healy said that he does not want the doctor to do the puncture at the base of Bethany's spine, rather he prefers that they do the puncture at the base of her neck. Hmmm. Hopefully, this will be less painful. We have been assured that they will keep her on her pain meds and will partially sedate her. I have definitely found that a parent advocate needs to attend every test to ensure that happens.

OK. I just had to leave for about 90 minutes. I'm back, and Bethany's MRI on her brain is complete. She's in pain, but not nearly as much as she has been. Following the MRI, she was taken for the lumbar puncture. She was very nervous, as she knows that this can be very painful. I assured her that I wasn't leaving and that I was her advocate for pain medications and sedation.

When the nurse arrived, she said that they would be performing a lower lumbar puncture. I repeatedly expressed concern over the fact that Dr. Healy had said that he didn't want a lower lumbar puncture, but rather a puncture near the top of her neck. The nurse assured me, at least three times, that the the resident had spoken with Dr. Healy, and Dr. Healy was OK with this. OK. I totally trust Dr. Healy, and if he's says it is OK, then it must be.

Ah....I'm learning that information is only as reliable as its source. Because.....when the doctor, who was going to perform her lumbar puncture, arrived, he explained that we wasn't going to do anything. He had spoken with Dr. Healy directly, and Dr. Healy was, and I quote, "emphatic about not performing a lower lumbar puncture." He proceeded to explain that he was not personally equipped to do such a puncture, and that he didn't want to cause Bethany any unncessary pain, thus the procedure was cancelled. He apologized for our wait and inconvenience. We told him that it wasn't any problem because we had just been down the hall having a MRI.

Whew! Thank God, Bethany was able to skirt having the lumbar puncture/spinal tap. Woo Hoo! I was not too happy about the miscommunication, but figured I should wait until another time to discuss it with the nurse. So, I held my tongue. I'm getting rather used to that.

When went back to the room, quickly changed the sheets on her bed, and transferred Bethany to the bed. Dr. Glick had ordered some Embed from the pharmacy because Bethany has been too nauseus to eat for the past few days. Before they give her any IV nutrition, they want to try this anti-nausea medication. It is typically given to chemotherapy patients, lasts 24 hours and is exceptionally strong. YES! So.....I then ordered her some oatmeal, brown sugar and milk. Hopefully, getting a little nutrition into her belly will help her.

She has been extremely upset because the Ambien (given over 7 hours ago) is still messing with her head. She's talking nonsense, and she hates it. I told her that I knew exactly how it felt, and that I hated it, too. Those of us Type A personality types, hate it when we are totally out of control. I told her it should only last about one more hour.

Prayer Requests:

•That Bethany be totally healed of the meningitis and that there isn't any long term effects;
•That Bethany's pain is kept managed and that she will be able to continue to rest comfortably, while still being able to sleep at nighttime;
•That Bethany will be able to actually eat something and keep it in her stomach;
•That Bethany's spirits are maintained and her vitals stay within normal limits.

Thank you so very much, again,

Love, Shari and Bethany Rose