False Alarm

Today George woke up miserable. I spent an entire hour walking back and forth to keep him from screaming his tiny whisper scream (paralyzed vocal chords = no real scream). The problem with a kid like George is the more he cries the more congested he gets and the more yet again he cries, it's a vicious cycle. And like any special needs child every sickness leads a hundred different possibilities for the source of the discomfort. Is it a cold, is it his tummy, is it teething, is it his shunt, is his chiari malformation causing pressure on his brain that is making him no longer able to swallow!??!! He has been sick for three weeks now, what could be causing it?

Now I have gotten pretty good at the take the baby to the doctor or not take the baby to the doctor dance. I am proud to say every doctor's visit has had a purpose and half the time a hospital visit. (A very sad thing to be proud of I know but still it is the little things). With a child like George it is important to avoid the hospital/doctors office whenever possible. Especially since a trip to the pediatric wing of the hospital is worse then being at home because you have to wait for a nurse to give your son his medicine, start his feeding pump, change his oxygen etc., etc. When you're a mom who deals with feeding pumps, oxygen, suction machines, and apnea monitors at home being in the pediatric unit is like being treated like a child. So if you don't need a doctors opinion there is no reason to be in the hospital. After all I have a nurse at home, one that knows how to work George's equipment, knows what his little turtle dove noises mean, and isn't helping 6 other patients at the same time.

This morning though something was off. He just wasn't himself. George didn't want to sit, he wanted to be held or to lay on his boppy. He didn't want to be patted or rocked or bounced. He didn't smile or play. He just stared at you and stayed in one place and tried to breath through the snot in his throat. We plugged him into his oximeter and he was sitting at an O2 stat of 76 (for mom's who have no clue what I am talking about he should be above 92 or he is not getting enough oxygen). And then when I put the canula on his face to get him some oxygen and he didn't even fight it? I didn't even bother talking to a nurse, I scheduled a sick appointment immediately. Of course this meant waiting until 240 but I thought it was worth it. Manageable at home but something is off and needs to be checked out so doctor's office, no ER. George finally calmed down and I walked both my dogs. When I came back he was asleep with the nurse and I thought am I overreacting? So I called my husband and spoke with him he said to go. It's rare for him to give me any sort of opinion so I went with it.

When George woke up my desire to see the doctor's was renewed he didn't want to move. He wouldn't shake his head. He didn't want to be patted. I was thinking headache, oh no, shunt revision!!! And like that my mind went a million steps ahead. How to get the nurse home if I have to stay at the hospital. I want the neurosurgeons to shave his whole head this time, how do they expect me to deal with a little strip shaved off? What should I tell my husband to bring me at the hospital? And on and on and on as we packed up and left to make the hour and fifteen minute trek to the hospital.

In the car George fell asleep. When he awoke we were at the doctors. He was in a surprisingly good mood. As usual we were whisked back right away (I'm convinced this is one of the few perks of being in the child with special needs mom club) and we sat in our room with the dinosaur exam table. George starts to play! He is grinning from ear to ear, shaking his head no, sticking his tongue out. We sit him up and he is ready to play. I am flabbergasted! What happened to the miserable, congested, crying baby from home! The doctor comes in and asks what is going on and I list everything that had happened that morning and in the past couple days since our last appt. George continues to be a ham. He fusses for the doctor (apparently having a stethoscope on you is complete torture) and has a reading of 100 on the doctor's oximeter. I have been tricked. Almost to appease me, the doctor gives a prescription for a decongestant and pats my back in understanding of my frustration over the long drive for no reason.

To make things worse I went to the pet store to get food (super expensive so forget it) and then the toy store to get a nightlight (they have one and I have seen better ones at the dollar store). Neither place makes the trip worth it. I basically wasted a whole day for no reason. I can't even get the prescription filled because lo and behold we get home and George is back in a fowl mood, but now the nurse has left for the day. My husband is still at work for an outage now at 920 pm when he went to work at 4am so obviously he wasn't there when I was home around 5. I was stuck. So now I have an extremely upset and congested child with no help and no answers. I guess I should be thankful that it didn't end up in a hospital stay but the guessing is the most frustrating part of parenthood. It will be a celebrated day in this household when my child can actually tell me what is bothering him!