When You Can't Be There...

Cyrus was hospitalized for the very first time when he was two weeks old. He had a case of infant mastitis – which was bizarre but not really life threatening. He was only hospitalized because he need to get antibiotics through an IV because he was too young to take them orally. 

He probably spent three total days in the nursery with all the premies, where he looked huge in comparison. We called him the King of the Babies! During this time, I did not leave his side. It didn’t matter that I was exhausted and still recovering from a c-section surgery. And honestly, I don’t know if he needed me to be there, but I needed to be there.

There were so many tiny babies that had no one with them. And that just made me sad. I didn’t know their stories. I didn’t know if they had been there for a day or three months. I didn’t know if their families had to work, were taking care of a twin, were physically incapable of being there, or simply needed an emotional break. But I remember being grateful that I could be there. That he didn’t have to sit in the hospital alone. 

And when he was hospitalized again at four months, and then again, at six months, it was the same. I was always there! And more experiences in the hospital emphasized that this was a good thing in my mind. Because nurses are in and out because they are taking care of more than one patient. They aren’t going to catch every seizure, they don’t notice a change in behavior that indicates something, and if you’re not there you don’t get to participate (as effectively) when care decisions are made. Like if you miss the moment when the team does rounds, you won’t get to participate in making the care plan. And it may take you hours for the resident to come back and tell you want the plan even is (though nurses usually know what is going on, they don’t always).

But when Cyrus went it for surgery last July, I was exhausted. I knew at that point that I was pregnant. I had my own doctor’s appointments to go to while he was admitted. And I also knew that hanging out at a hospital meant I was more likely to get sick, which was more dangerous for me, and for my soon to be daughter, in my physical condition.

I simply couldn’t be there are often as I wanted to be, and I let myself go home to my own bed to sleep. (Probably a good decision). I have to say it is an absolute luxury to be able to walk away and know that the nurse caring for your son knows how to handle g-tubes and seizures, and has a whole friggin’ team at their back if something should go even slightly awry. 

I remember arriving though one morning around ten, and Cyrus’s was completely alone in his cage like crib, and the television was on playing the movie, Cars, loudly with the speaker at his head. His arms were thrashing around in agitation, while he “yelled” out his displeasure, and his leads were pulling at him in every direction. 

And it was just so sad. I had no idea how long he had been this upset, or if anyone could have recognized him as upset in the first place (his upset is pretty mild compared to most children). And I know that I told the night nurse the day before that he was nonverbal and cognitively more like an infant, but I have no idea if that message got passed along to the day nurse with all the medical things that need to be shared in a limited amount of time. They may not have realized that the movie blaring into his ear would definitelynot hold his attention, and could from a sensory perspective, irritate him immensely. 

I held no ill will towards the nurse. I just felt so bad for not being there sooner. Because hanging out in a hospital room by yourself sucks. Especially, when the people who do occasionally visit you, don’t know you or your preferences at all. 

Cold on Monday

Cyrus caught a cold last Monday. And Monday night things got worse with high fever and rapid breathing. But by Tuesday morning he seemed to be doing way better. We took him to the pediatrician anyway. His O2 levels were a little low and he was definitely congested, but his lungs were clear and his fever had broken. We were sent home with standard “drink plenty of fluids and watch for these things.”

But over the next two days, he really didn’t seem to get any better. He slept a lot, and would wake up only around 4 or 5 pm after sleeping all night and all day. During that time, he did seem active and engaged – irritated and fussy. Just enough, that I would assume he might be getting better, but then the next day would be the same.

On Thursday, we took him back to the pediatrician. He was looking pale and his O2 levels had fallen down to 84. (Generally, you want them to be like 97+, and when you’re sick and congested going down to 92 is considered acceptable. 84 is low). She gave him an albuterol breathing treatment that initially seemed to help, but once the treatment was over, his levels fell right back down.

So off to the ER we went! He was put on oxygen and got more breathing treatments. His levels came up again, but as soon as the support was removed he would crash. So, they admitted him. And Cyrus is in the hospital once again. 

Pediatrician on Thursday

He showed remarkable improvement over the first two days, but then on Saturday suffered a setback as he appears to have developed a secondary infection and his cold has now turned into pneumonia, and was elevated to ICU care. He has since improved again, but it looks like he’s going to remain in the hospital for much of this week.

And as of Tuesday, I will no longer be able to visit him at all.

And though the reasons for that are exciting – we all finally get to meet Cyrus’s sister! – it still kills me. It has been incredibly hard for me to accept. Especially because some of these breathing treatments seem rather traumatic for him. (The cough assist is no joke! It forces air in and gives him puffed up cheeks, and then pulls it back out so hard it makes his tongue stick out).

I am very aware that it’s only been Cyrus for the last four years, and that now we will have to readjust and find a new balance with our growing family. And if we’re being thrown into the deep end in having to figure that out, well, it certainly isn’t the first time.

I am also aware that I am not the only person in Cyrus’s life that cares about him. And I am so grateful that both friends and family have volunteered to come visit Cyrus while I am unable to do so. And that my husband will be able to split his presence to some extent.

Perhaps, it is the vanity of a mother to think that no one can be there for him as well as she can. And perhaps, this is an exercise in learning to let go, to trust others because I need to find a better balance. I need be better at building in actual respite in my life to keep doing all this. 

But when you can’t be there… it still emotionally sucks! 

ER on Thursday

Dinosaur Nebulizer. Be jealous of how cool I am!

Feeling a bit better!

And Being Cute

General Update:

You read the post! Cyrus has pneumonia and is in the hospital. But is much improved and is currently stable. He’s been very sleepy today, but has also had short periods of alert wakefulness. He’s even smiled and laughed a few times. Seizures have been way lower during this week (probably because he’s sleeping so much), but you have to appreciate those small wins.

Sleep time! 

The cat has been on insulin for almost two weeks and she is doing way better as well. Her blood sugar levels have cut in half, and she’s been so much more active! She was even playful yesterday evening. I haven’t seen this behavior from her in months! I guess I thought she was just getting old, but apparently, she was just an untreated diabetic.

Our home is like 95% prepared for a new infant. Cribs, diaper bags, and carseats have been prepared. Floor space has been created. And the fact that all of this happened with everything going on is a small miracle (I blame c. difficile). Thanks c. difficile. I still don’t like you! 

And I’m headed to the hospital on Tuesday for a planned C-section. Will likely be there for the following four days, but will hopefully be able to post a birth announcement soon! It may be awhile before all four of us can be together though for a full family picture. But it will definitely happen! 

Cool vibrating vest thing. He seems to like this one.  Not a fan of the  nebulizer and HATES the cough assist.

The other upside to illness is that when he's finally feeling better, he just loves everything!