Tuesday, August 7, 2012

Gut instincts and difficult choices

Yesterday was the first day of 2nd grade for Rylan, full of excitement and wonder I took him to school to enjoy.

Come 130 I went and picked him up. He was doing great! We got home and his nurse was there waiting. It seemed like a typical evening.

However I have REALLY bad paranoia when it comes to Rylan and his exposure to germs. As crazy as it sounds my gut always seems to tell me something is wrong with him. Way before it even starts to show.

Sure enough this time my gut didn't let me down. 5:00 pm comes around and it is time for his favorite nurse to leave, at this exact moment he begins to growl. No Not on purpose, but he proceeds to hold saliva in the back of his throat and keep it there. It is by far the most aggravating sound, you just want to cough it up for him. His nurse stays for about 30 mins working on clearing him up before she takes off.

After she leaves Rylan falls asleep. It was early, but it didn't bother me because he only got 5 hours of sleep the night before and had a busy day.

I sat beside him and watched tv while he slept.......He sounded like crap. I tried not to stress to bad about it because he still had a 6:00 treatment, and most of the time it does its job on clearing him out.

So I set him up and give him the treatment and he fails to wake up at all.  30 mins after the treatment I notice his respiratory rate is faster then normal.  So I grab the pulse ox. He is at 93 asleep. Not terrible, but not ideal. He still sounds like garbage.

Now you might be thinking...."wow she sounds kinda nuts". In a way I am. My anxiety for Rylan's breathing is stemmed from the many times I have sat in a hospital room praying his lungs will gain some strength. I also have become a worrier. Not only do I worry about Rylan, Steven as well. Earlier that evening Steven called me letting me know his phone was broke. So I had no way to contact him.

Come 1130ish I woke up.  Steven is normally home at this time, and he wasn't. So yes Miss Anxiety reared her ugly head. Especially since I had no way to call and see if he was ok.  Well since I was up I went ahead and checked on Rylan. The pulse Ox we have always takes a couple mins to get an accurate reading.

So I gave it about 10 mins and checked on him again. Oxygen is down to 92, still breathing fast, and a high heart rate. Im pretty confident now something is wrong.  I go look to see if Steven is home yet. Nope.

Come midnight our "bangbus" (as we call it), pulls into the drive and I hear the welcoming sound of the garage door open. So I went out to meet him.

I fill him in on whats been going on with Rylan and he comes to take a look and give his opinion, he agrees there is something off but he is ok and encourages my spazzing butt to go to bed.

After he does his winding down Steven comes to bed, and tells me something I NEVER thought he would have considered. We should home school Rylan. Its been one day and he is already sick, this doesn't give him warm fuzzes about cold and flu season.

This breaks my heart a little because school gives him so much joy.  No mom wants to take away one of the few things their child looks forward too. But it looks like there really isnt much of a choice.

We went to bed with the intention of seeing how he was in the morning. Come 4am I hear Rylan grunting alot, but he was laughing. I check his stats to see how he was doing 87% oxygen now. REALLY?

Well since I know I can be overly paranoid about Rylan, I asked Steven for his opinion.  Rylan was needing to be seen.  The only problem is we both have had 3 hours of sleep and were in no condition to drive all the way to TMC.  So we pulled out the concentrator and threw some oxygen on him. I know this sounds horrible but we have been told this is ok.  He seemed to be fine on 2 liters, any higher we would have taken him in right then.

So back to bed we went and got up about 3 hours later, to take Rylan in. Steven started to have his reservations because Rylan was laughing and happy. I still wanted to go to the ER because he was still breathing fast and needing oxygen.

I called his pulmonologist asking for their opinion, after about an hour of not hearing from them, we were en route to the hospital.

I know it seems strange that we would have Rylan obviously not doing good and take our time going to get help. Fear not we both know what we are doing and have Everything we need to keep his O2 up at home.  He didn't seem distressed so we weren't stressing.

As soon as we got on the freeway the pulmonologist calls me and lets me know our choice is good. Go to the hospital.  We get to the ER and they start to triage him right away.

As soon as the nurse puts the pulse ox his heart rate his beeping loud alerting its too high. Yet his O2 went up to 98. Steven and I were a little flabbergasted, then it dropped, we were not disappointed. The nurse also mentioned it started to feel like he was running a fever. Awesome.

So we sit and wait, they have him on 2 liters of oxygen, and gave him stuff for pain. 3 hours later the doc shows up. She goes over his history and bolts, Rylan then gets an x-ray and we wait. A nurse comes in and lets us know they are going to turn his oxygen off and see how he does on room air, he does fine. Going on hour 6 in the room I go out and ask if they know what is going on.  Thats when we were finally informed he was being admitted.

The doctor from the floor came in to talk with us filling us in on the x-ray results and getting info for the floor. As he is talking to us Rylan decides to drop to 70% oxygen (he likes to keep us on our toes). 

 as always, we were brought to our room and told the game plan. Basically they are going to treat Rylan for his chronic pulmonary problems, a possible asthma exacerbation, or a pneumonia.

So I sit here now in his hospital room listening to beeping of machines, the gently whisper of oxygen, and spongebob on the tv.