It has been a l-o-n-g day, and not a lot has gone right. Z and I were up and on the road by 6:30 a.m., and we spent nearly 2 hours in heavy morning traffic before arriving at the hospital. Still, I was in a pretty good mood, because I was about to start a new treatment for Z, and was hopeful this would be ‘the one’. But, when I checked in at admissions, they told me I was supposed to have checked in last night, on Sunday. I explained that I was NEVER told Sunday. My daughter’s 9th birthday was on Saturday, and her best friend of 8 1/2 years turned 9 on Sunday, and we also had an additional party for some other really good friends on Sunday. So, I remember specifically asking for Monday or Tuesday, and the Dr.’s assistant said Monday would be perfect because the Dr. was getting ready to go to a conference, and Monday would be the last day that she could still be here for the entire treatment. Regardless, it really wasn’t that big of a deal to me, because I figured it would work out. That is, until someone called me at admissions and chewed me out for not getting there on Sunday. I was instantly defensive, because I was NEVER told Sunday, and her tone really pissed me off. Then she made it sound like they were going to turn us away because they no longer had a bed for Z. I explained that if there was a bed for us on Sunday night, and treatment was supposed to be several days long, shouldn’t that bed still be reserved for us on Monday morning. She started making up other B.S. and continued to berate me for not being there on Sunday. I was then told to wait and she’d see what she could do because she had to get the *new* date (of 12 hours later) re-approved with insurance. AAAARRRRGGGHHH. Then she mentioned that she did have a message from the Dr’s assistant on Friday explaining but that she wasn’t there on Friday. Uhm… so WHY are you berating me because YOU should have had someone covering for you on your day off.
So, we sat and waited. Me, Z in his stroller, the big ol’ diaper bag, a bag I’d packed with items I’d need for 4-5 days, my laptop bag, and another bag with all the other bottles, formula, diapers, etc. Baby Z was getting hungry, so I had to start prepping a bottle in the middle of the waiting area with all our stuff, when we should have been in our own room that was supposed to have been ready for us then, on MONDAY morning. We waited about an hour, and finally got into admissions for the paperwork and we were then escorted to our room.
Then, the real ‘fun’ began. I explained to the nurses that baby Z was a hard stick. But they must hear that a lot, because they didn’t seem to believe me. Even when I explained everything in detail, like the fact that when an IV was put in, you can’t draw blood from it or it would pull the whole thing out, or the fact that if they tried to stick him, they’d end up sticking all 4 extremities before getting the IV and blood. Or, the fact that he had to have an ultrasound in order to get an IV in at Texas Children’s. So, what happened? Well, they stuck him and didn’t get anything, so then they stuck him again and at least they got the IV in. At least they did listen about pulling blood from the IV, so they didn’t, but it did require another (3rd) stick to try to get blood. When they did, it quit flowing and they didn’t get much, but they decided to stop and see if the lab could make due, otherwise it would have required a 4th stick. UGH! (Which it later did because they didn’t have enough).
Once all the blood work was done, then baby Z had to get hooked up to all the EEG probes. He doesn’t particularly like having that done, but this tech must have had a lighter touch, because it wasn’t so bad. Or else baby Z was already exhausted from all the screaming during all the blood work. So, it took a while, but at least baby Z wasn’t screaming the whole time!
Once all that was done, we waited for the dietitian. Then we waited some more. Then we waited and waited and waited some more. The neurologist stopped in to see us, and we chatted a little bit, but nothing was really happening so I didn’t really have any questions. So, she left and we waited some more. Finally the dietitian came in to see us. Basically, she went over everything we had ALREADY discussed on Friday, and then she said she had to figure out the combination of regular formula to ketogenic formula. Uhm… I thought that’s what she was supposed to do Friday. But, okay. I thought it was going to just be a few minutes. But, we waited, and waited, and waited some more. Finally, around 6:30, she came back and had worked out the details. But, she said we were going to wait until the next day to start. What?!?! I questioned her philosophy, but she said it would be better to start in the morning. I guess I see her point, that he’s going to be woke up every 2 hours for blood sugar checks. BUT… that’s going to happen tomorrow night, so why not just start. It just felt like a waste of a day, and I don’t really want to be here on Friday just because she wanted to wait. So, I convinced her that we should get started, and baby Z got his first “dose” of his transitional recipe at 7:30 p.m., after the dietitian had left for the day.
The dietitian had given us an easy recipe of 4 ounces of regular formula to 2 ounces of ketogenic formula, for the first day, making a 6 ounce bottle. But, she had specifically told me that he could eat whatever he wanted on the ketogenic diet, as long as he stayed at the right ratio. I had explained that sometimes baby Z sleeps a lot one day and barely eats, then does the opposite the next day. So, he doesn’t have a typical 24-hour type of schedule. Anyway, she was gone, baby Z drank his entire 6 ounces really fast, and was still hungry. I knew he didn’t need another 6 ounces, so I started mixing 2 ounces of formula in our room, and walked to the refrigerator across from the nurses station to get 1 ounce of the ketogenic formula. But, then the nurses saw me and told me he couldn’t have any more formula (or anything) for 4 hours. WHAT?!?!? All the while, baby Z is in his room screaming, because he’s hungry and waiting on me to bring him more food. I explained what the dietitian had told me and I explained that he just need a couple more ounces. But, they wouldn’t let up. So, I had four nurses very adamantly telling me that I could not feed my baby because it was a very strict diet. I was getting angrier and angrier, because that is NOT how it was explained to me. If it had been, I would have been sure that the dietitian had formulated it so he could have 8 ounces, or feedings more often, or SOMETHING. But, they wouldn’t listen. Finally they offered to call up the dietitian. At that point I was pissed. (Remember, baby Z is down the hall screaming at this point). I told them that they better do that, then I stormed down the hall and I SLAMMED the door, and pulled the curtain. Then, instead of ripping the flipping video camera off the wall like I wanted to do, I took a deep breath, picked up my screaming baby, and tried to calm him. A few minutes later, two of the nurses walked in and pulled the curtain back and nicely told me that they were wrong and that I *could* feed my baby. AAARRRGGGHHH. You’d think they’d have experience with the ketogenic diet and would know this stuff. But, whatever. Even though they were in the wrong, I am completely embarrassed at my reaction. I guess it was the stress of the day and not being able to feed my hungry baby, when the whole point of being here was to feed him this stuff. But, I acted like a toddler, and it’s embarrassing. Luckily though, the nurses seemed to understand, and they commented that they understand and that they have babies too. Now it’s become kind of a running joke, because each time I walk out of the room, they ask how I’m doing and smile, and we all kind of laugh. That was not the ice-breaker I had in mind, but, hey, whatever works, right. HA!
I talked to my hubby, and we feel that all the ducks were definitely not in a row today, and that the hospital really needs to work on that. (That’s not exactly how our conversation went, but I’ll save you from some of our expletives! 😉 I’m just not sure how to proceed, or who to turn to. We definitely think they need some feedback so they can improve. But, how do you go about that when you may have a long-standing relationship with these people and you don’t want to offend them? How do you give diplomatic/creative criticism??? We need them on our side, to help baby Z. But, we also need them to have their ducks in a row, so we can feel confident in their abilities, and more importantly our little guy (and other little ones) in the best way possible!