Last night was no fun. Noah was fussy and up and down with his sats. Finally at 6:00 AM I turned him up to 1.5 liters and we called the Pulmonology clinic first thing this morning. He isn't running a fever, still eating well but just fussy. He has been fussy all day, the moment you put him down he cries and cries until he is picked up again. Plus he rubs his eyes and just wants to sleep but he is too fussy to sleep. We counted his respiratory rate and it was slightly high but we didn't notice any serious retractions that would tell us he is in respiratory distress.
When I first called the clinic they said maybe we should head to the ER. I told them he wasn't in any respiratory distress just for whatever reason, congestion, you name it, he was requiring the more oxygen. I got him to calm down around noon and got him back to 1 liter and even got him to rest on his chest for an hour at 3/4 liter. Right now he is at 3/4 liter with an occasional dip in the high 80's....mostly when he is mad. For some reason nights seem to be worse for him. He must sleep more deeply at night because I spent all last night waking up to his Pulsox or him crying.
Anyways, we made an appointment for first thing tomorrow in Fresno. We are already going for our high risk clinic follow up so the nurse agreed to get us in first thing to the Pulmonology clinic. I sure hope they can shed some light on what is best to do but Shane thinks they are just going to tell us that yup, he has a cold and just watch closely for signs of respiratory distress.
I keep hoping and praying this isn't going to be my life for the next several years, biting my nails and pulling out my hair hoping that Noah isn't coming down with pneumonia or something worse that will send him straight back to the hospital to be intubated and biting my nails and pulling my hair about possible issues with Jonah's shunt, delays, etc.
I miss the days when the unknown was spontaneous and fun instead of dreadful and terrifying.
I even packed for the hospital today because I didn't know if they'd rush us down and readmit Noah. Once I explained all his symptoms and what we were doing (extra Albuterol treatments, etc.) the nurse said I could come in first thing in the morning...of course with the disclaimer that if it gets ANY worse we are to immediately go to the ER. I am not stupid enough to march in to the ER around horribly sick people if I don't think Noah needs to be there so I pray he makes it through the night.
I guess this isn't the right time to bring up how much I hate the hospitals in this area, the only one I really feel comfortable with is the one a few minutes away from our home where the boys were born. Their NICU is so small that they'd send Noah off immediately to Memorial to their PICU, especially since Noah is no longer considered a neonate.
Today is a day I wish I could wave my "magic wand" and wish us closer to Fresno or better yet to Utah where family is close by and trusted children's hospitals are but a 20 minute drive away.
Ok, tomorrow I hope I'll have a happier post.....one that includes the specialist in Fresno telling us that Noah will be ok and just to keep an eye on him instead of Shane posting something to the blog saying Noah has been readmitted.