So..... we found our way to the hospital again. :( Matthew still is not tolerating his NG tube very well. Friday, we ended up pulling his tube and giving him a break for the day. Sunday night, he vomited in the middle of the night and his tube came out with it. It was a bit of a panicky moment, because when I woke up (thank goodness he was in my room) he was gagging. His tube was still dripping formula out but it was in his mouth (sorry if that was TMI- I'm a nurse remember--not much grosses me out). I pulled the tube out as fast as I could. Praise Jesus that the tube went in his mouth when he vomited and not his lungs. That would've been VERY bad. I had talked to his pediatrician Friday and Sunday, and she felt it was necessary for us to go to the hospital. She had talked to Children's on Friday and they felt it was better to wait till Sunday night. When the pediatrician called Children's Sunday night, they thought it would be better to come up Monday morning around 7 am.
We arrived and were admitted. After all the doctors and nurses poked and prodded, they decided it was necessary to do a CT scan since his head measurement was up 1 cm in a month and to consult neurosurgery. I was a bit peeved about that, due to the fact that I know there is nothing wrong with his shunt and that's not why we're here anyway. So we did the CT (which was normal for Matthew) and the neurosurgery resident came to see us. I told him I wasn't concerned about his shunt and he definitely agreed. {Okay, I'm gonna vent a second-sorry} I don't understand why every time we go in to the doctor or hospital for something, they assume something is wrong with his shunt. Seriously, it's frustrating. That's the first thing they go for. I seriously think he could come in with a broken bone and they'd worry about his shunt first. At least our neurosurgeons don't feel that way.
Next they wanted to catheterize him and get a urine sample. WHAT??? WHY?? Matthew has kidney reflux and since we're here, they thought we might as well check it out to see. Okay, he doesn't have a temperature, he's not irritable, he doesn't cry when he urinates, nothing. So, I told them, no thank you! I said they could put a bag on to get a urine sample, but no catheter. Seriously, we're here for a G-button, nothing else! I get very frustrated that I always have to be on the defense. I swear they'd just poke and prod all day if I'd let them.
Matthew's slept all day. Literally awake for a couple of hours. Consequently, he's been not interested in eating. So, I've been trying to coax him to eat, but he hasn't been eating well. No eating equals not peeing. So they talked about an IV, but I asked if we could just give him a feeding in his NG tube; which they were okay with. I don't know quite why he is sleeping today. We did just increase his Keppra last week, which could be causing it, but I'm not sure. Maybe he thinks if he sleeps, they'll leave him alone!
They've planned to do an upper GI ( a test to see if he's refluxing his feedings) tomorrow and then hopefully we'll see the pediatric surgeon tomorrow. (He wasn't in today) It seems a pretty wasted day. They won't schedule surgery until they have the upper GI test done. I just like to get things done. I have other places to be and things to do. It's not that Matthew isn't worth it, because he is; but I wish that they would do things a little more timely. I'm just not one to sit around and wait.
If they don't think they can get surgery scheduled in a timely manner (in my book that would be tomorrow evening or Wednesday) I'm going to ask if we can just go home and then come back on the day of surgery.
Please pray for Matthew's upper GI tomorrow. Pray that he is not refluxing his feedings, because that would mean an additional surgery that they will want to do, and I do not want that additional surgery. It means for a longer recovery and more risk for complications.
I will update tomorrow when I know something.
5 comments:
My "money" is on your nurse and mommy instincts. You're doing a good job not letting those doctors just poke and prod. I am praying Matthew doesn't need that extra surgery and the G-tube simplifies things for you.
*hugs*
Jill-
I am so sorry. Poor little Matthew.
You are a wonderful mother. And as I have said before, you are so fortunate to be a nurse and really understand everything. I admit when I am at the hospital with Lizzy I just let them run all the tests that they want because I feel that I don't know enough to tell them what or what not to do. So good for you :) Matthew is lucky to have you, and you ar lucky to have him. A perfect mother/son combo.
I'll keep checking back for updates :)
Jill,
I'll be praying for you & little
Matthew. Its great that your a nurse & can head some of these dr.s off at the pass. I never understood the need for extra pokes & tests.
Oh, sounds like another frustrating situation. Way to stand up to the nurses/doctors! Mommy does know best :) Keep us updated. We'll be praying for as little medical intervention as possible!
I know what you mean about going to the shunt first. Owen was a year past his shunt placement with no symptoms of a shunt failure - we head to the doc with a temp of 103. She wants to tap the shunt! It was roseola. Enough to drive you right up a tree.
We will be thinking of Matthew and you in the upcoming days. You're a great Mom!
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