It’s hard to believe an entire week has already come and gone. One minute we were in Rhode Island on a mini vacation, and the next we’re in the hospital. I lose all sense of time when we’re in the hospital with Madison. Sitting in the same chair EVERY SINGLE DAY is hard. Sleeping in a windowsill is hard. Trying to comfort your child while they’re hooked up to multiple machines is hard. It’s just all around hard, and the days sort of just blur together.
The first few days of a hospital admittance tend to be the scariest and most busy, because Madison is usually at the peak of her illness. There’s lots of bloodwork and follow ups involved as we diagnose exactly what’s going on, and figure out the best course of action. By day 4 I’d say, we’re usually pretty clear as to what’s going on & sorta just waiting things out, which is typically when I start losing my mind and going stir crazy lol.
By day 4, everything annoys me. Usually Madison is beginning to feel better, but is often super irritable as she becomes more aware of the fact that she’s sick, has wires attached to her, and tubes up her nose. Madison NEVER acts herself in the hospital which always leaves me feeling uneasy and anxious about how long we’ll be there, or if something else will go wrong. It really hit me during this stay how severe my PTSD is from her meningitis stay.
When Madison first got sick at 11 days old, I never in my wildest imagination thought we would be entering a 69 day hospital stay. I left my house scared knowing my new baby was not right, but didn’t walk back in until 69 days later. It’s hard to believe that I lived in a chair and slept in a windowsill for that long. Honestly, it blows my mind when I think about it.
But now when we go to the hospital for illnesses, or seizures I’m filled with such a fear that the same thing is going to happen. I’m always nervous Madison will spiral and we’ll be there forever. I’m nervous that we’ll be forced to watch her really fight for her life again. Or worst case, that we won’t have the same outcome in being able to bring her home. It’s such a gut wrenching feeling. And since Madison always acts more sleepy and irritable in the hospital, I feel like I can never just relax. I’m always on edge watching her every move making sure she doesn’t do anything weird or crazy. It’s hard enough to sleep when nurses and techs are constantly in and out of the room all night, but it’s even harder when I feel like I need my own eyes on Madison at all times, since I know her best and know what’s normal and not normal movements for her.
For the first time Madison also had an illness related seizure the night before we took her to the hospital which also terrified me. For kids with epilepsy, there are lots of things that can lower the seizure threshold and trigger them, and being sick is one of them. Because she had a weird more intense seizure than usual, I was SO anxious about her going into status like she did back in February. (A status seizure is one that is long & continuous and likely needs a rescue medication to stop it). Seeing her body go into status was one of the scariest moments on this journey for me so far. I had panic attacks after and was filled with so much fear and anxiety about it happening again. That hospital stay definitely tore me up, and caused a lot of anxiety going into this stay since I was nervous it would happen again. (Thankfully, it did not!)
It’s an awful thing to see your child so sick and struggling to breathe. And for kids like Madison, that’s exactly what the COMMON COLD will do. Imagine how scary the situation could be if God forbid she ever catches something more serious. (Hint hint: VACCINATE your kids people!!). Madison ironically also got rhinovirus in August of last year, and at that time we were in the hospital for a total of 10 days. This time around, she got over it in 7! We’re very happy to see she’s getting stronger and able to kick these sort of things more quickly. Since she has already been sick with rhino before we were also able to look back at her course of treatment last time and begin some of the things that worked, earlier this time around. We also brought Madison in as soon as we noticed her breathing was more labored, so I think we also caught it very early.
I also worked it out with our doctors to get an oxygen machine at home for the future. Now, this is not to try & avoid taking Madison to the hospital. She’s super complex and tends to need a more pressurized and intense support system early on. It’s absolutely not safe to provide that level of care with her at home. BUT, for instances when she’s breathing okay but has some congestion affecting her o2 levels, or for the tail end of things as we wean her oxygen support in the hospital, having some at home can shorten our stay.
Madison essentially weaned herself off oxygen this time around. While on the high flow system, she puked up a bunch of mucus one night, causing us to have to remove the nasal cannula to clean her up. While off, we noticed she was satting fine and made the decision to switch her back to regular oxygen support. We likely would have tried to wean her down to 2L of oxygen the following morning, but Madison expedited the process herself. A day later she ripped the tape that was holding the nasal cannula in place, and we woke up to her breathing on room air with no oxygen. Because she was still satting okay, we left her off oxygen beginning yesterday morning, and were able to get home today – a total of 24 hours without support is the rule.
The last time Madison got sick, it was a much longer process to wean her off oxygen totally. Because rhino is just a virus, there are no antibiotics that can help her feel better more quickly. We basically just need to ride it out until she’s able to be cared for at home. Now that we have our own oxygen, we can prevent her from catching anything else from the hospital by shortening her stay & making her more comfortable by continuing the wean from home if needed!
So now we’re home and hoping Madison starts to feel 100% better real soon. She obviously no longer needs any breathing support, but she’s definitely still congested. We’ll take it easy this week and cross our fingers we’re able to make it another year before a serious illness again. Thank you so much to everyone who has reached out in the past week! We truly appreciate all of the prayers and support and are very lucky that Madison is so deeply loved! Time to enjoy the little bit of summer that is left!