Kevin called on his way home from work. He could tell I was distracted.
I hadn’t expected him home as I thought he was working a later shift but I had his schedule mixed up.
He asked if everything was ok.
I told him I couldn’t talk that Aiden was acting weird and something just wasn’t right.
He said he would be home soon and I hung up the phone.
I grabbed the hospital grade suction machine we have and used it on him and got nothing, even though he sounded terribly congested. I then put him in his bath seat.
Aiden loves baths, they are the magic fix all for him.
The CP causes him to be so tight all of the time takes quite a toll on him and relaxing in the warm water offers some relief from that.
He calmed down and seemed to be doing a little better.
I hadn’t made dinner it was already 8pm. I was swaddling Aiden and rocking him trying to figure out dinner with Noah at my feet, tugging at my shirt, “EAT! EAT!” doing the sign for eat over and over. He heard the door and ran from the kitchen. I heard the excited squeals from Noah, “PEEEEZZZZA!!! PEEEEZZZAAAAA!!! DADDDDYYYY PEEEEZZZZAAAA!!!”
Ok. One problem solved I thought.
Aiden was comfortable and relaxed after the bath, I dressed him and put him in his rocker right next to me while we ate dinner.
His breathing was calm, his hands folded together over his chest, totally relaxed and following the rise and fall of his chest.
I told Kevin, “keep an eye on him, something just isn’t quite right. He has had a funny cough that started up this evening and his retractions looked a little worse right before his bath.”
He looked him over and noted he was barely retracting at all and seemed peaceful.
We both did the mental, “whew, thank God,” sigh of relief.
But about 15 minutes later he awoke from that quiet sleep with the same peculiar cough I had heard earlier, but this time he couldn’t really get himself out of it.
I got out a stethoscope and listened to his lungs and while I am no doctor or nurse I knew something wasn’t right. One side sounded noticeably different.
We packed up the boys with the thought of heading to Urgent Care but realized it was a Sunday and they were closed.
Kevin called his mom who is a NP and asked if she could listen to him as she only lives a block away.
Aiden is a funny case, retractions are normal for him, noisy breathing is normal for him, but this was just a little worse. Having someone that knows Aiden is beyond helpful because taking Aiden in without knowing his baseline would land him in the ER. Something as simple as croup can sound terrifying when it comes to Aiden and we didn’t want to expose him to the ER unless we had to.
She listened to him and she confirmed our gut feeling. He needed to be seen.
We left the other two boys with his parents and rushed to the ER.
I sat in the back with Aiden, it was dark and I couldn’t see him well so I kept my hand over his chest to feel him breathing.
It was steady but he was stressed. I turned the light on and unzipped his outfit after I felt his rib pulling in a way I couldn’t believe. He started to have substernal retractions. It looked as if he had a golf ball on top of his sternum every time he took a breath in.
It looked as if his heart was literally trying to come out of his chest.
I told Kevin to just pull in front of the doors of the ER and I would get out and he could follow.
I got out of the car and Aiden looked at me and I pulled the blanket over his head to shield him from the wind.
I made probably 15 steps from the car to the doors.
I walked in and there was someone in front of us signing in. The nurses made eye contact with me and immediately stood up and I blurted out, “he is having trouble breathing, he 3 months premature, he has BPD.”
Just then I pulled him down off my shoulder and he wasn’t breathing.
I called out to him as the nurses surrounded me.
The nurses called for more help and gave directions to each other.
My voice sounded like it was coming from someone else.
I pushed on his chest and rubbed my knuckles against his sternum.
His arms fell at his side limp. For him and his CP that is near impossible for him, something was very wrong.
The nurses started moving us to the trauma room and after a few tries they finally heard breath sounds.
He began breathing again but was still not coming to.
They had me lay him on the bed. He looked so tiny.
I began to rattle through his symptoms and his medical history.
People filled the room.
So much of the time in that room was a blur.
He came to once they began sticking him with needles trying to get an IV and began deep suctioning him. What they were getting out they called “cement”. The amount they got out they could not even believe.
He fought through every second of them working on him.
He would hold his breath and his muscles would spasm and he would arch his back and his raspy voice whaling out in pain.
His body began to be covered in broken blood vessels, he was so stressed he wasn’t breathing, they kept having to blow in his face.
Kevin filled out the forms. I couldn’t.
I just kept watching the faces of the people working on him looking for answers.
They asked us to wait in another room and I refused to leave.
I was shaking, tears falling, flash backs from the NICU when he was going into organ failure were flooding my brain.
The alarms. All of the tubes. Blood gasses. Xrays. IVs.
It all was a nightmare.
They began to get cultures on him for everything they could think of to see what we were up against.
After what felt like an eternity people began leaving the room.
The doctor in charge of his care said that they needed to get him in my arms ASAP because she knew it would level out his stats.
They handed him to me and he was covered in blood.
They had stuck him so many times.
I held him close to my heart, kissed his sweaty forehead and breathed him in.
His stats began to normalize.
Another nurse came into the room to take over for the other and in their conversation with each other they said, “RSV positive”.
“Wait. RSV positive? He gets the shots….he isn’t held by anyone besides us, his grandparents and nurses and doctors….we stopped doing group speech for our toddler so we wouldn’t be bringing in the germs….I don’t get it.”
They apologized and said they had seen it a lot this year.
They wheeled me sitting on the bed holding Aiden up to the PICU.
Kevin stayed with Aiden while I left the room and called our families and gave them updates.
Aiden was so tired from fighting, he actually fell asleep.
It was nearing 4am and I pulled out the couch so Kevin could get some sleep before work the next day, he still was going to have to go home and get changed because he was still in his work clothes from the day before.
I fell asleep sometime after Kevin left in the morning for an hour.
I couldn’t let my mind rest. The familiar clammy plastic couch pull out bed. The sound of alarms breaking night. It felt like the nights where we weren’t sure he would make it through.
It all felt so surreal.
A nurse came in the room to tell me to not beat myself up, that it really was a phenomenal thing that this was his first hospital stay since leaving the NICU and that he was just needing basic supportive care.
We were there from Sunday through Wednesday.
He did really well with his stay. Everyone remarked how well he was doing and that he was such a strong fighter for everything he had been through.
He began having secondary issues the second night we were there. He started feeling well enough to realize he did not want to be at the hospital and was stressed about it.
His GI systems is so sensitive any change in diet or stress will be shown via his GI system.
He started dumping. He would have a bottle and make a diaper before he finished it with that bottle.
They were not adding rice cereal to his bottles to slow his food down and that with the stress created a very bad GI problem for him.
On Tuesday I barked up enough trees to get him his rice cereal and it helped but the stress was still overwhelming for him.
Any hospital stay is a stressful one. The shuffling around of Noah and Evan. The schedules arrangements. The exhausting job of being an advocate for a very unique little boy.
Having to retell every step of his history to every new nurse or doctor we came across.
Seeing your child stressed, in pain and exhausted.
Thankfully we have an amazing support system of friends and family that are there for us at a moment’s notice. Kevin could still go to work, we could still spend time with Noah and Evan who were very upset that Aiden wasn’t home. My mom took shifts being with Aiden after he was stable so we could not totally throw off Evan and Noah, it was so helpful to know what wonderful hands Aiden was in when we left to go see Noah and Evan….such wonderful hands he was rarely put down. It was so comforting to see him realize she was there, he has vision and hearing problems but when he smells her he lights up.
We had frustrating moments at the hospital. Like when a resident came in and asked us if he was struggling so much because of having Downs….which he does not have. That same resident also so tastefully stated that Aiden, “came out the hole with style” because his hair naturally turns up like a Mohawk.
But we had good moments like when a NICU nurse came by to visit (even though we missed her!) it is just nice to know how much she actually cares even all this time late and nurses that went above and beyond for Aiden and us and of course them being able to make the interventions they needed so he could stabilize.
Aiden has been at home for about 4 days now and has really been doing wonderful. That first night he was home was like night and day. He stopped dumping and spent a good chunk of the evening laughing and smiling. Putting him in his crib next to Evan, Evan kept pointing at Aiden and clapping and Aiden almost melted into his bed. The familiar smell and comfort was almost like medicine for him. We hooked up our monitor that tells us if he stops breathing or moving to give us some extra reassurance.
It is easy to lose my breath thinking about the evening that brought us to the hospital.
But that night we were in the exact place we needed to be at the exact moment we needed to be there.
I know that somehow we were blessed with that gut feeling to know something wasn’t right and to act on it.
And that is what has given Kevin and I peace. It is hard to erase the image of your child not breathing from your mind and all of the “what ifs” that go along with it.
But knowing that by some means we were blessed with that sense, that awareness and understanding is what has given us the chance to catch our breath.
And in catching our breath we can just be thankful.