I’m sure most of you are interested in an update about my Mom, so I thought I’d lead with that. She is doing well, but we still do not have an answer about what is going on with her. I don’t think she slept particularly well last night…she called me at 8:30, 10:30, 1:30, 5:30, and 8:30. Maya woke up again for the first time at 5:00 am, but she immediately fell back to sleep until 8:30. Micah woke up right at 9, and we raced around getting the children ready. Yesterday, we had the pest control specialist kill off the spiders in the house, so today, we asked Patricia, our cleaning lady, to meet me at the house at 10:00 to dust and vacuum and get rid of the spiders and cobwebs.
Because of this appointment, I did not get to Hopkins until 1:00. The nurse did a quick interview/exam of Maya, and then gave us permission to bring Maya back to Mom’s room for the day! When I arrived, there was a note from Elise that she had been by to visit, but Mom was getting an EEG. Sorry we missed you, Elise! I was able to meet with Dr. Holdhoff right when I arrived. He said that her MRI and CT scan both looked good, and he briefly discussed sending her back to Levindale tomorrow. I explained to him that it would not be in our interest for her to go back to Levindale for 24 hours, and he readily agreed. Instead, they will be keeping Mom at Hopkins at least until Friday.
Our biggest concern is that they have no explanation for why Mom is experiencing headaches, nausea and vomiting all of the sudden. They tried increasing her steroids…but there have been no improvements. We had hoped her symptoms would improve with the antibiotics to treat her UTI, but so far we’ve not seen any improvements. They did an EEG, but we had not heard the results by the time I left today. We have one possible theory left…they put Mom on an anti-anxiety medication almost two weeks ago, and it is possible that the nausea and vomiting are just simply side effects from that medication. I am a bit nervous for them to release her home without identifying the source of her new neurological symptoms.
Lately, Maya has become the queen of SUBs…and for those of you unfamiliar with this term, it was coined by our friends, Ellen and David, and it stands for shit up the back. It is the lovely situation that occurs in all babies when they manage to poop to such extremes that it explodes out the back of their diapers and completely covers their clothing. Naturally, Maya has been so kind as to SUB every day this week, at the most inconvenient times. Yesterday, it happened while we were in the emergency room (and I was so discombobulated that I had forgotten the diaper bag at home). I had to get diapers from the pediatric ER, but it was a mess…and I had no change of clothes for Maya. Even worse…she did it a second time, as I was leaving the hospital. While I was trying to convince a nurse that she was germ-free and safe to have back in the room visiting my mom. I had to take a paper towel, put it underneath her…and drive her home with a diaper oozing poop.
Of course, she decided to SUB again today…this time, I had the diaper bag, but no change of clothes. I had to creatively rinse out the poop from her outfit…and re-dress her in wet clothing. Lovely, right?
I truly hate moving – it was so much easier when everything I owned was portable and could fit into a minivan. We are so completely unprepared for this move. We have so much stuff, and we have completely failed to organize and weed through it. Nothing has a place, and I’d guess we should throw out half of the things we have here. Naturally, we’ll just end up moving the crap yet again.
Tonight, we also finally started packing. Actually, to be fair, we had the movers come tonight and spent a few hours packing, Megan packed up all of Micah’s toys during his nap, and Elliot spent the afternoon working with Leslie (our organizer) to get his office in order for the move. I’m not sure if we really made significant progress, but we did find the keys for the house today. They were exactly where I thought they were…but hidden under something. I swear I checked underneath there about a dozen times, but I guess I must have missed them. Doesn’t it always happen that way?
Tomorrow is the first day I will not see my mom since August 20. I have seen my mom every day for the past seventy-five days. I have driven to/from Baltimore for the past seventy-two days. It is at least 80 miles roundtrip, which means that I have driven over 5,760 miles in the past 2 1/2 months. My father has made the same trek, too, although a few days we have journeyed there and/or back together. Some days, Elliot has driven us. But each and every day, we’ve gone. But tomorrow, she will spend the day in the hospital without me there to check on her…to lay eyes on her, to knock any heads, to sort out any problems. I’m sure I’ll call her a million times tomorrow to check on her…but I won’t be able to see her with my own eyes. I keep trying to figure out if I can make it up there…but I know there is no possible way to move an entire house and drive there and back.
I’m definitely overwhelmed by how much stuff we still have to pack and move. It is going to require numerous trips back and forth, and I am definitely concerned about how I am going to coordinate the packing up at the Bethesda house (to make sure that the right things are packed in an organized fashion) and to simultaneously coordinate the unpacking on the other end at the Potomac house. I am worried about getting everything moved and put away in time to give the children a normal bed time/evening, and have everything sufficiently in place for my mother for Friday. I’m so used to relying on my mother when I move…she and I have the same sensibilities about where things belong. I can trust her to pack up any room, or unpack key rooms like the kitchen, because she would set it up exactly the same way I would. There is no one else that thinks the way we do, and this is the first time I have to move without the benefit of her assistance. That alone is going to make this my most difficult move yet.
On another note, my mom has been calling here on and off since 2:00 am. The nurse on duty tonight is refusing to put her on the commode…this is so frustrating! I already called and spoke to him, and I think he is reversing his opinion. I also sent a note to the doctor and hope he will address this issue in the morning.
But beyond that, I’m a bit worried about her – she was quite strange on the phone tonight. We were talking, but there was a lot of static and noise on the phone, and her voice was very garbled and difficult to understand. The last time I had this much difficulty talking to her on the phone was this summer, before we got her diagnosis. She kept telling me that it was because her phone was in her pocket. I asked her why she was putting the phone in her pocket while we were talking, and she insisted she wasn’t. She said it was there before the call, and she had forgotten to take it out. I told her that she could not have called me with the phone in her pocket, and she started to argue with me and tell me how I never believe her and how I must think she is stupid. No…I just know that in order to dial the phone, she has to take it out, press a button to activate the phone, and talk directly into the speaker. I also know that at one point during our call, she had it up to her ear, and I am concerned that she thinks it is normal to put a phone in her pocket mid-conversation. It is like she is forgetting we are on the phone and just putting it down mid-conversation. She has been doing that over the past two days, and it is striking me as another neurological symptom.
So, hopefully tomorrow things will improve with my mother. I’m definitely concerned…I know they keep telling me that everything is fine and that the tests look great…but something isn’t quite right, and I’m concerned that they cannot seem to figure out what is wrong. I’m also worried that I will not be seeing her in person tomorrow, and I have to rely on my father to communicate specific information with me – not his strong point. My brother will be heading over tomorrow evening, and I think Diane and Joey will be visiting as well. My mother will be alone all morning (probably until 12 or so). I hope she gets a few visitors, and I hope that they keep their promise and get her out of bed tomorrow. We’ve made far too much progress in her sitting stamina for her to spend all day in bed again.
Wish us luck with things! I hope it goes smoothly, and I hope that we can have everything moved over there and unpacked in a single day. I’m so worried about getting everything ready for Mom, and I have a sneaking suspicion that the kids will be a disaster tomorrow night in the new house, so finding the time to unpack is going to be a challenge.
Jessica