This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
This one gets into some areas that might make some of you uncomfortable. First up is a CaringBridge post about vaccines, followed by a blog post about the environment.
These days with Samantha, no news is good news. I will try to update daily, but I can’t always promise there will be something new to report.
Weekends are pretty quiet around here, so there isn’t much new. However, there are a couple of changes on the horizon for prayers. The first is that we are attempting to up her feeds again from 60 to 75 cc’s. The nurse suggested that we increase the amount every-other feed to start, so that is what we are doing. Hopefully we won’t run into any more vomiting episodes in the meantime.
The second is that tomorrow Samantha will be getting her 2 month vaccines. It should have happened last week but this is one of those advocating issues, where the medical staff overlooked it (not that I blame them – that’s a pediatricians job to keep track of, not a hospital) and I honestly forgot to ask about it until Friday. It’s hard to read through the literature on the different diseases these vaccines will protect her against and not wish that there had been one for Group B Strep that could have been given at birth. But we can’t change what has happened, only move forward.
Speaking of moving forward, the third thing on the horizon is that Samantha will probably be coming off of all monitoring very soon. Today’s nurse thinks it will happen tomorrow, but it is up to the doctors so we will see what they say. Truth be told, while the monitor helps us sleep slightly better, she’s been doing so well that when the alarm does sound, we automatically assume it’s a problem with the lead connected to her rather than an actual issue with her. Why? Because that’s what has happened each time for a week now! It’s so good to see her healthy. Her color is good, and she gets mad at diaper changes and people coming in to take her blood pressure and temperature. All regular baby stuff instead of the illness that has consumed her body.
We are still anxious about what the future holds, but we are going to be meeting with the social worker here next week to formulate a plan for Samantha’s ongoing needs once she leaves here, including applying for Early Childhood Intervention, lining up PT, OT, and medical appointments, and figuring out what other services are currently available to us and her. Please keep lifting all of this up in prayer – your prayers have certainly been heard so far!
From my blog, a post titled “It’s not easy being green”:
I’m not a tree-hugger by any stretch, but I do consider myself to be a conservationist. I hate the idea of being unnecessarily wasteful. I try to recycle as much as I can within reason. At the same time, I still use plastic bags instead of those tote bags for groceries (who wants to put raw meat into a cloth bag anyway?) and I have no problem with Styrofoam cups and plates. Here is something I’ve realized in the last few weeks, though: you cannot be an environmentalist at the hospital.
Hospitals have to be obsessed with preventing the spread of germs. They have to because hospitals are germy places, and germs get spread there despite their best efforts. So very little is reusable. The cafeteria at the hospital was entirely made up of throw-away containers, no washable plates or anything. I’m sure some of that is also to save money on dishwashing staff. They do use real plates and silverware for the trays that go to patient rooms. And we know from asking the techs that the wires used for EEGs are reusable. Towels and sheets and blankets all get washed, albeit with lots of hot water and bleach I’m sure. But we also learned that if anything is brought into a patient room like bandages, diapers, bottles, or anything else that’s considered disposable, even if it is unused, the hospital has to throw it away when the patient leaves. And speaking of bottles, each one and the nipple had to be thrown away after using them – the packages even say “single use” on them. I can’t begin to imagine the volume of garbage that the Houston medical center must create every day. I understand the thinking behind it all, but my goodness, there is no way that someone can be “green” while in the hospital.
For example, the staff has to weigh all of Samantha’s diapers to keep track of her ins and outs. I’m not sure that would work if we were doing cloth diapers. Plus how would we ever wash them? Ok, I never really considered cloth diapers anyway, but when we go home we’re not planning to throw every bottle away and buy new – we’ll wash them. I just find it amazing how much trash gets involved when you’re trying to keep everything as clean as possible. And in all of this musing, I’m not even touching on the medical waste that has to be disposed of in special ways (which I don’t even understand).
Despite all of this, I am so thankful that Samantha is mostly out of danger from this disease so that instead of worrying constantly about her I can think about silly things like hospital garbage.
Next post coming tomorrow.