Crap

Crap. Literally, crap. I’m so sick of crap I cannot see straight. My mother is once again in agony over…crap. It is 3:00 in the morning, and my father is now driving up to Hopkins to sit with my mother while the staff there tries to figure out what to do for my mother’s pain and discomfort. I’m so angry that they cannot get this problem resolved and that when I explained to them last night and today about not skipping any of her medication that they ignored me.

My father called me about 15 minutes ago to tell me that her nurse, Richard, had called and that mom was in agony. Dad asked me to give Richard a call on his cell phone to go over what she needs. Since my mother was in pain earlier today when we visited, I was sure what was happening with her. I called Richard and explained to him what medications to give her. Immediately, he copped an attitude with me, telling me he’d already given her a bunch of medications. He told me that she wasn’t having the pain I mentioned, so he had been pumping her full of stool softeners (great…she might end up with a different type of problem tomorrow). I explained to him that all day she has been having pain from irritation, and what she needed was a specific cream that was on order and tylenol. I could hear the pause as he realized he had not given her that medication (and she always ends up in pain when the miss a dosage). He said to me he knew what he was doing, and he’d given her that stuff already. I was certain that he had forgotten those medications (since he thought she was cramping and they haven’t gotten the orders for the different medications written properly yet).

I tried my best to turn Richard from an enemy into an ally. He was frustrated because he was unable to help other patients because my mom was taking up so much of his time. I explained to him that the transfer and the missed medications likely set this off, and I understood the frustration because we have been dealing with it for several weeks now. I again reminded him of our conversation last night when she arrived at Levindale, and said that while he thought I was being overprotective, I was afraid of this happening again. He said he understood now, that in all his years he had never seen anyone in so much pain, and he was now a believer that my mother had a serious problem. He also requested a GI consult and a scan for tomorrow, so perhaps they will now take my mother’s problem seriously.

I said I would be happy to talk to my mother and see if I could calm her down over the phone if he would help her answer her cell phone. Instead, he walked down to her room and called me back from her cell phone. It was on speaker, and I asked her a few questions about what she was feeling. As I suspected, she was not feeling backed up as Richard thought, but she was experiencing pain and irritation. I asked her if Richard had given her the medications that helped (Tylenol and a special pain suppository) and she said no, he had not. It was probably not a good idea to piss off Richard that way, but I knew if he heard our conversation I could get him to administer the medications she needed. I told her to request those two medications, and she did. It took Richard another 20-30 minutes before he came back with the medications (and I think he was grumbling because I hit the nail on the head) and gave the medications to her. I heard her put her earphones in and I told her to call back if she needed me. I guess we will see if this works.

Today has been…awful. And now it is pouring rain outside, and I’m worried about my father driving by himself in the middle of the night. I probably should have been the one to go up since I’m better with nighttime driving. I’ve called him a few times to check on him because I hate when he drives alone at night – he tends to get sleepy on the road during the day, so driving at this hour truly worries me.

I thought things were going smoothly when I woke up this morning. Maya and Micah both slept until after 8:15. I brought Maya into bed to nurse first, and Micah woke up shortly thereafter. Elliot brought Micah downstairs while I finished nursing Maya. Megan arrived at 9:00 and helped us with feeding and dressing the children.

I spoke to my father and he was driving up to see my mother. I told him that I was concerned that they had not given mom any of her medications for both her bowel issues and her steroid, so I asked him to check and make sure about both of those medications when he arrived. At 9:45, Micah and I left for our Kidville class – the Big Muscle Builders class! It was the first time this semester I was able to attend a class with him, and I think we both needed some bonding time. Micah was a bit reticent to join the class at first – it took him 10 minutes to warm up and participate. But when they brought out the blocks and the obstacle course, he was ready to play! Much to my surprise, he was playing well with the other children in the class. We ended class with two songs…”Tick tock cuckoo clock” and “Goodbye friends.” During both songs, Micah did the hand gestures and even sang a few of the words! He had a HUGE grin on his face while we sang.

After class, I was able to fit Micah in for a haircut (the woman at Kidville is wonderful…she has a fire engine seat and a dvd player with Elmo, so what more could Micah want from a haircut?) and he was more upset when the haircut ended that he had to stop watching Elmo. While he was getting his hair done, I signed the contract with Kidville for Micah’s second birthday party. Yes, it is a bit early to be planning for a December party, but we have a big discount that we needed to use that expires on September 30, and we decided it would be a fun place for Micah’s birthday party. I sure hope we are able to go ahead with our plans in December.

After we finished at Kidville, Micah and I ran across the street…to Georgetown Cupcake! For those of you who don’t already know it, Elliot and I are a little obsessed. We think their cupcakes are delicious, and we love some of their flavors in particular (I’m partial to the chocolate squared and we both love the chocolated salted caramel flavor). Perhaps our favorite thing about DC Cupcakes is their free flavor of the day. Yes, free. If you become a “fan” of their Facebook page, every morning they post their free flavor of the day. If you go to the store and request it, the cupcake is yours (while supplies last)! If you can get their before 11:30, they usually still have free cupcakes. Today’s flavor was DC Cupcakes milk chocolate squared, and I was able to secure 2 cupcakes today (it is only 1 per person, but they counted Micah, too). By the way…it was delicious, too!

After getting our cupcakes, Micah and I came home. Maya was napping, and I waited for her to wake up. I spent a bit more time with Micah, and spoke to my father. He told me that when he arrived at the facility, my mother had a headache. He checked at the desk, and he learned that I was right – they had failed to give mom her nighttime AND her morning dosage of steroids, and she had a headache because of brain swelling. He made sure they brought her the steroids, and we waited. I nursed Maya around 12 and talked to my father several more times, and mom was doing okay, but she was complaining that her stomach was bothering her again. I asked Dad to request a GI consult for her and an endocrinology consult (I’m not happy with how they changed her diabetes medications) and I suggested that he try to talk to the physician when he came to see mom.

They gave her the chemo medications on time (probably thanks to my father’s presence). Maya and I left for Hopkins around 12:30, and I managed to arrive at the radiation oncology appointment before my parents got there. They arrived exactly at 1:45, and my mother was cramping and in pain. We had her radiation nurse, Ron, assist her in the bathroom, and she immediately started feeling better. They took her for radiation right away, and we had a brief meeting with Dr. Kleinberg (I asked them about her missed dosage of steroids). Because my mother’s headache had resolved, they decided not to give her a supplemental dosage of steroids. Right at 2:15, my mother was able to head back out to meet the transport, and I stayed behind for another 15 minutes to nurse Maya.

I arrived at Levindale a little before 3:00. When I got up to my mom’s room, my parents were not back. I called my father to figure out where they were (and he answered and hung up on me telling me he was with mom). I called back to find out WHERE he was with mom – I thought perhaps they were somewhere in the building and I could get to them. He said he was in the ambulance with her and she was in excruciating pain again. When they got to the room, my mother was crying. It took us a while to transfer her to the bed, and even longer to get her nurse there with her medications.

Unfortunately, they had not been giving her any of her medications to manage her bowel issues. I was livid – there were orders from Hopkins about what to give, but apparently the physician’s assistant did not translate the orders appropriately. I am so frustrated that every time we are dealing with someone new, they seem to think we are kidding about my mother’s bowel problems. Pain management and consistency has been the key, and whenever they fall behind on the medications, things go to hell in a handbasket fast. It is also hard for the nurses to understand the urgency of the situation when my mother complains about pain. I finally had to throw a fit to get the nurse to come in and explained to her what medications my mother needed. When she finally realized my mother was crying and saw her writhing in pain, she moved a bit faster. It took another 20-30 minutes before she requested all of the meds from the pharmacy and had them delivered and administered. My father stepped out for a bit to meet with the woman from admissions and fill out some paperwork. When he returned, my mom was feeling much better, and my father left for the day.

I sat down with my mother’s nurse, Camille, and I went over all of the medications/issues with her. I apologized for how we first met, asked if we could start fresh now that things were calm. I re-introduced myself, and she got a copy of my mother’s medications. I gave Camille the background on my mother’s bowel issues, and explained that when there is any divergence from the protocol, my mother ends up in excruciating pain, and it becomes an emergency. I asked her if she could help make sure that the orders were all entered properly into the system so that everyone knows how to stay on top of things and prevent any more emergencies. She was quite kind, and we identified what other medications were not being given, and she did what she needed to get them on order from the pharmacy. We also discussed my concerns over Mom’s insulin dosage and I gave her the sheet from Hopkins.

Camille tried to get everything straightened out, and she was extremely responsive. My brother arrived in the afternoon, and the two of us sat with mom. The speech language pathologist came by to do her evaluation, and it seemed to go well. My mother was very subdued most of the afternoon – wanting to sleep after her exhausting trip to Hopkins and back. I also think the brain swelling from earlier in the day had her exhausted.

My mom’s dinner arrived around 5:15, and my brother and I helped her eat. The doctor finally came by, and we talked about my concerns. I asked him to make sure the orders were written properly for my mother’s medications, and we talked about the insulin discrepancy. He did not feel comfortable following the orders from Hopkins, but he realized her blood sugar is back out of control again. I asked him to set up an endocrinology consult, and he reluctantly agreed. I also requested a GI consult, but he seemed less concerned about that problem. The little hairs on the back of my neck stood up…kind of a warning sign that we would be having bowel issues before they got on board to help.

Jeremy had to leave a few minutes before 6, and my mother needed help sitting on the commode. We got the nursing aides to come help mom while I finished talking to the doctor. He then went in to examine her, and she also explained about her bowel issues. He assured us that they had it under control, and they were quite familiar with these types of issues. Astutely, my mother told him she’d heard that before.

While we were meeting with the doctor, the nurse coordinator came by to check on us. She was wonderful (and like everyone else, fell in love with Maya). I expressed my concerns again about the insulin changes and my concerns about the missed medications, and she assured me that things should be working smoothly now. I told her that Camille had been a wonderful help today, and that I was hopeful things would get easier. I finally left around 6:30 – my mother seemed to be resting comfortably. I checked with Camille, and she promised they would give my mother the rest of her medication tonight. I thanked her again, and I headed home.

Much thanks to my friend, Jennifer Berkeley, for her wonderful backroad directions – I managed to make it home from Baltimore in less than an hour in rush hour with her ingenious route. So, if anyone needs to travel up there (or back) from Montgomery County during rush hour, let me know and I will send you the directions! (Side note…it seems the man my father and I saw being attacked last night did eventually stumble into Sinai emergency – because Jen was brought in to consult on a case of a man matching my description who checked in shortly after we reported the attack). Unfortunately, Maya screamed the whole way…partially because she hates the car, but partially because I could not give her the reflux medication on time (Elliot inadvertently removed the medicine pouch from my purse and left me without her medication).

I made it home fairly early tonight and spent some time with Micah before his bedtime. We gave Maya her medicine, and she immediately returned to “happy baby” status. My cousin, Jodi, arrived around 8:45 for a visit (and brought us some dinner). It was so nice to sit and catch up with her – I miss seeing all of my friends and going out. Two more weeks, and hopefully when we have mom back down here my world can normalize again.

Great…just got another call from my father (it is now 3:45 am). Apparently, somehow he missed a road block on the highway, and he was picked up by the state police. He is not allowed to continue on the road to my mom because there is a one-hour backup due to an accident. Just our luck! I asked him if he explained the situation to them and whether they could help him get to her. As he started talking to me about what happened, all of the sudden he started yelling at me to be quiet (hello, I wasn’t the one talking!) because the state trooper was back, and he hung up on me. I decided to call Richard, my mother’s nurse, and ask him how my mother is doing. She is currently resting comfortably.

Can I just say how angry I am that all it took was giving her the medicine as prescribed to resolve the issue? I called my father back and told him to turn around and go home. He would have to go all the wack back to 495 and then up to 95, through the city and then out to 83 to get to her with this road closure – I don’t think he would be there before 5:00 am anyway, and she seems to be doing okay now.

Elliot and I tried relaxing after Jodi left, but Maya just would not cooperate. She kept waking up every time we put her down into the bassinet – she just wanted to sleep in my arms. We finally got her into her bassinet at 11:00. I took a nap for two hours, and then woke up when Elliot went to sleep. I had just started writing my blog when the phone rang.

So, I’m sitting here waiting to confirm that my father got home safely. I have spoken to him several times – at last check, he was about 15-20 minutes from home. I have a feeling he won’t call me when he gets back home, and I’m not sure if I should call him again – I don’t want to wake him if he is asleep. I hope that tomorrow my mother is feeling better and that we can get ahead of this pain and get her feeling better. What a day!