Well....I am exhausted. Friday was a long night with checking Haven's stats on the O2 monitor. Then last night I did a check at 9pm, 10pm, 11pm, 12am, 1am and then finally fell asleep to have some crazy weird dreams. Woke up at 3am and checked her readings again. Heart rate was around 110 and oxygen at 94. Then Haven got me up at 4:30am because the alarm was going off on the machine. At that point I realized I never heard the alarm which is a good test and means if there is an emergency I won't hear the alarm.
So we're gonna have to work on that tonight. I believe it alarmed because I'm trying to spare the use of the bands. We only got 5 with the machine so I have to find out how I'm supposed to get more. I really wish someone would've explained something to us about the machine and who we call for supplies.
This week should be a calm week. Haven will be in Oncology on Friday. We'll be discussing Chicago and our thoughts and feelings regarding that. We're still discussing how we feel about it and are still not sure what we want to do. There is a lot of work to do with insurance. I spoke with our case worker on Friday and there are a lot of hoops to jump through to find out if it's even a consideration. That will be discovered throughout the week.
We hope everyone had a wonderful weekend. Love to all.
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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