Is about the only thing I have been feeling lately. You know, I look back to the days of the NICU and you think for some reason when you leave there that things are going to be okay. Things will never be like they were there. But that is so wrong. I find myself more worried, more stressed and more confused now when A gets sick than I did way back then. It totally sucks. I mean for real. He is going to be four in June and yet the nightmare continues. The worrying every time that he gets sick. It is always in the back of my mind that something horrible is going to happen. That my absolute worst fear will come true. That I won’t have this smiling, adorable little guy here. No mother should have to think of this when her child gets sick. But it is just yet another crappy thing about being the mom of a preemie, the mom of a child with special needs, the mom of a child with many health issues. We are not oblivious to ANYTHING and know that ANYTHING can happen.
So A has been sick since the 16th of February. Februay 18th I was told that he had pneumonia. Last Wednesday he seemed much better. Same goes for Thursday. Thursday night however his nurse woke me up and told me that she thought he needed oxygen because his sats would not stay up. (She does not have an order for oxygen therefore has to wake me up in these circumstances.) He did fine on 1/2L.
Friday morning he is fine. Doesn’t even need the oxygen. Friday was a good day. He had three workers here and did great with all of them.
Friday night went to bed fine. (I did have him on 1/4L because it seemed that at nights was when he was needing that little bit of help.) Wow, what a crazy night. He was AWFUL. At 5am I really started to get nervous. He was not going above 80 and if he did it was not for long. I had him up to 2L and it was not doing ANYTHING. I held him and that didn’t help. Finally about 6:30am he settled back down and was satting 90ish on 2L.
By 8am I was in his room getting him up yet again freaking out.
Talked to my parents around 9am and thought I needed to take him to the hospital. I figured I might as well change his oxygen tank as I knew that it was getting low and wanted a full one for the trip. Shut off the tank and then went downstairs to get a new one.
Come up and he is satting in the 90s with NO oxygen.
Talked to my mom and told her that I wasn’t going to take him. Pretty sad when you hum and haw over taking your sick child to the emergency because you know pretty much how useless it is going to be!!!
Had an okay day yesterday. Only needing 1/4 or 1/2L to sat well.
That was until he wanted to sleep. I held him (he only cuddles when he is sick!) and he fell asleep. That lasted about ten minutes max. As soon as he goes to sleep the difficulty breathing and crappy sats start.
Stayed up for the rest of the day. Was good.
Last night he was exhausted and I put him to bed at 10pm. Was asleep within 15 minutes, on 1/2L with sats in the 90s.
I headed to bed as I could barely keep my eyes open. Daddy stayed up so that I could get at least some solid sleep.
3:30am I am up to the lovely sounds of the monitor. From 3:30-5:30am I did everything I could think of. Turned up the oxygen, gave him a breathing treatment, did nose drops, checked his temperature, did some deep suctioning. You name it I tried it. Sats would NOT come above 90. He was snorty, tired and just having a crappy time. I picked him up hoping it would be a bit better. He was good until of course he would fall off to sleep.
I just held him and cried my eyes out. I am sure that my pregnancy hormones do not help with this, but I friggin HATE what my poor guy has to go through. It just isn’t fair. It sucks and that is the bottom line. And it sucks even more when I am worried but yet scared at the same time to take him in. I mean really what are they going to do different for him? The only thought I had was that they would most likely vent him and because I know he is fine awake I am not okay with that. It freaks me out. I hope to God that I never ever have to see him vented again.
So ya, I just cried and cried. Told him how sorry I was. How angry I was that no one ever helps him. Sorry that he suffers way too much for being a three year old. How I felt like a shit ass mom for not being able to make him better.
Life really sucks sometimes.
But I try to remember the bright side. I have my son here with me. I can love him, cuddle him, kiss him.
And then he smiles.