Day +57, 64 days in California, 32 days at RMH

I am exhausted and even took melatonin, and yet, here I am awake at 4:30am. This is the week that Aaron is gone; so, I sleep very little. By Thursday, I am running terribly behind on sleep and then when he arrives on Friday, I can finally crash.

On Wednesday, Naomi’s temps were a bit high-for-her, but not high enough to be concerned. Her temp usually runs around 97.2-98.2. She was, however, running more around 98.2-99.0. I am hoping that is a boost of WBC activity which would mean a boost of WBCs.

Naomi needs her catheter dressings changed twice each week. Typically, we do this on Tuesdays and Fridays. I changed it on Tuesday , but already on Wednesday, it needed changed, again. As I changed it for the second day in a row, I noticed a bit more redness there than the day before. I will have to ask the nurses take a look at it when we go to the clinic on Thursday. There was no broken skin, but it looked more irritated and dare I say, inflamed. Just two tiny dots of redness, but enough that I noticed.

I am very anxious for this appt. Did her counts go up since Monday? I would have to think they did…. She is less whining, more active, and generally happier. When her hemoglobin drops, I can tell because she is extremely irritable. I cannot remember a time she yelled at anyone on Wednesday. She was quite happy and pleasant. She even napped! She sleeps better when her hemoglobin starts to rise. When her hemoglobin drops, she gets more restless, both while sleeping and awake. Labs on Thursday will see if my preliminary assessment is right!

I realized tonight/this morning how many drafted posts I have saved that I wanted to share but have not. I will make sure to put “edit those posts” at the top of my “to do list” for this weekend, right after “catch up on sleep.” Note that just because it is on a to do list for the weekend does not mean I will get to it this weekend. At this phase of life, my to do lists are generally ignored.

There were many things about Wednesday that were definitely not a highlight. None of us wanted to leave bed, much less the house, but yet we all wished we could leave this house for home. It was a tough day emotionally and mentally. It is almost better on clinic days when we do not feel as though we are sitting around for no good reason and would much rather be home. Here all day, the kids tend to bicker more, find trouble more easily and there are the rules of the house that make life overwhelmingly difficult. With six children, and Naomi supposed to be in isolation avoiding the other guests here and the common indoor area as much as possible, it makes me crazy.

One of the rules is that I must have all children with me at all times. Well, it obviously is NOT gonna happen. There are times that I must run down to the kitchen for something in the pantry (another rule is that no food or beverage are permitted off the first floor), and have to haul more kids with me than is rational. There are times when I need little ones to nap, but cannot get them down to sleep because there is nowhere for the older children to go without me. I have been reprimanded for having children alone in the playroom right across the hall where I could hear them playing while I cleaned the bedroom. Then, there are times I just need to be alone…… And so I wake at 4:30am even though completely exhausted just to clear my head.

There have been countless times when Aaron or I received “reminders” about needing to be “with kids at all times.” So, it is difficult to navigate here because while we know the rules, we cannot reasonably follow them all of the time. Yet, those rules ARE always right there in our minds (as we break them) which causes us stress. It really makes being here a complete drag. I will not even get into the FACT that my home is so much cleaner, and, I feel, safer for Naomi to recover. I have been very willing to drive the 3-4 hours as many times a week as necessary if I can just sleep in my own bed and cook in my own kitchen. But the dr has not allowed it.

We continue to consider our options. I have looked for short term leases on rentals, considered the expense of moving back to an Extended Stay, and also contemplated going home and not telling anyone! Obviously, we are still here because of the cost factor. Who can beat $15 per night for a family of 8? But it is really tempting to have more privacy at an Extended Stay or even sleep on the floor or buy air mattresses if I can find a month-to-month rental that fits into the budget that our insurance will reimburse.

To be fair, there are some good moments here. Much of the staff is very kind to us, and show concern for Naomi, allowing her to eat in the room while under isolation orders. They have been helpful and patient with us while I got school curriculum delivered here in multiple shipments over the past two weeks. Also, many of the volunteers here will bring meals a few times a week, giving us a break from flooding the kitchen or waiting in line to cook.

The highlight of our day on Wednesday was when I was about to start making dinner and someone came with a donated meal for the night. I was so happy to not have to cook. I was ecstatic when I realized it was not just any food, it was Chipotle! Hard shells, burritos and tortilla chips with all the fixings you could imagine. It was quite a spread. All of the children had an instant appetite, even Naomi who ate a TON of good protein and a variety of food groups. Yeah, that kind of took away the sting of all the difficulties we had throughout the day. But we still miss home…… Well, the hall light just went on two hours early. Think I will go turn it back off since it shines right in our window on the door and onto our beds, directly into our faces while we sleep. It also wakes kids way too early.