The last few weeks have been rough on our family. Two weeks ago Saturday I came home from work to find Hayden struggling to breath. He honestly scared me shitless. I must add that I don't scare easily or hardly ever panic, but this did it. The poor little guy was breathing 66 times a minute, grunting, retracting, and looked like life was being sucked out of him. I hurried and gave him a breathing treatment, had Brandon pack us a bag and off to the ER we went. I seriously drove 90 mph down I-69.
We got to the hospital and spent 4 very long hours in the emergency room until Hayden's room was ready in the PICU. Hayden improved quickly with steriods, breathing treatments, and oxygen. We stayed 3 days in the hospital and then went home on oxygen, breathing treatments, and steriods. I think I slept a total of three hours the whole time we were there. I was so proud of Hayden in the hospital. He was such a good boy and took everthing in stride.
Hayden was doing well and went back to school later that week. Friday evening I noticed that he was starting to cough and was a little short of breath. I gave him a breathing treatment and he improved. We went to bed. I got up in the morning for work and Hayden woke up coughing and short of breath again. He improved with his treatment and I left detailed instructions with Daddy and went to work. When I got home from work that evening Hayden's breathing was a whole lot worse. I put him on oxygen, gave him several treatments in a row and called and got him more steriods. He improved and we went to bed. He slept through the night so I thought that was a good sign. I checked his breathing and breath sounds before I went to work and he seemed to be doing okay. I called and checked on Hayden a few times that morning and called our peditrician to see if I could get him seen. My awesome co-workers sent me home at 10am.
I got home and took Hayden to the ER again. He now has a horrible cough, snoty nose, and is breathing in the 60's again. I suspected that he caught RSV while we were in the hospital and sure enough he tested postive. We waited 5 hours in the ER this time before our room in peds was ready.
Hayden's nurse had no buisness taking care of sick children. She didn't think that he was retracting and refused to call the respiratory therapist to give him a treatment when I asked for one. UGH....imagine my anger towards her!!! So being the smart Mommy that I am I packed Hayden's breathing medication and gave him a treatment. I guess she didn't get the memo that when a child has a chronic condition / special needs you listen to the Mom.
Life on peds sucked this time around!! We couldn't leave the room because we now were in isolation for RSV. I think 5 milllion people came in our room that night. When I finally fell asleep at 3am I was woke up at 3:15am by our nurse saying that we were getting a room mate. What???? I calmly made my point and they agreed to wait until morning to bring in our room mate.
Morning came and I talked to the charge nurse. I can't believe they were going to bring in another patient that's parents stunk like they just smoked a case of cigarettes. Let me tell you how great that would be for my autistic, asthmatic child that has RSV. I talked to the manager of peds and she told me it was okay because the beds are three feet apart and she understands how I feel. BITE ME!!! I have not been that angry in a long time, but this lady sure pushed my buttons. I was prepared to block the door way, becuase those people were not comming anywher near us. Luckily I was able to talk the dr into discharging us and that whole me blocking the door situation was avoided :)
Home again, home again, back on oxygen, around the clock every three hour breathing treatments, an oximeter, twice a day steriods, and an inhaler twice a day. That does even cover the 23 vitamins, probiotics, and digestive enzymes that Hayden gets a day and his hyperbaric oxygen therapy. I feel like all I did was give Hayden meds. I sure the heck did not sleep.
Hayden's behavior has horrible this week!!! He peed in my water cup, the dog bowl, the pretend cooking dishes, and in his sisters ride on toy. He colored all over the walls, table, himself, the dog, and his sister. He flooded the kitchen and poured a cup of water over his sisters head. He threw his sisters poop out of the tub and hit me in the head with it....I must say this was the icing on the cake. He was stimming left and right, poor eye contact, temper tantrums like you would not believe, and was not talking like he had been.
I admit I was scared that autism was pulling him back in. I can't even describe to you what it is like to watch your child back slide. All of the hard work we have done in the last year to pull him from the grasps of autism and it was sucking him back in. I knew that it was only temporary and he would return to his baseline, but man there was some doubt there.
I am happy to report that Hayden is much like himself today :) I sure hope Daddy can keep up with all his needs this weekend.
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