For those of you who think I am so strong, that I am handling all this so well, I’m here to tell you if you were a fly on my wall this weekend, you might think differently.
I pretty much lost it both Saturday and Sunday.
A lot of it is I’m just tired. We are getting up every 4 hours to administer meds and refill formula. But my formerly perfect 12-13 hour a night sleeper’s world has been turned upside down and he’s having trouble falling asleep and staying asleep. The last two nights he’s woken up in the middle of the night screaming- I’ve changed his diaper and he’s gone back to sleep, but he’s restless. And I am too.
The stress has built up as well.
Saturday morning, Grayson pulled his tube out. We called the pediatrician’s office, because they have Saturday hours, but several practices in the Katy area rotate locations. Of course our pediatrician wasn’t on call and we had to call another office. They absolutely refused to put the tube back in, and the receptionist was extremely rude to both Ryan and me on the phone. Ryan actually talked to the doctor on the phone who said he couldn’t do it because we would need a chest x-ray (which ended up being completely untrue). We called several urgent care clinics, because at the hospital they told us an urgent care could put it back in. Nope. So our only other option was to go to the ER, at the tune of $350.
I asked the doctor and nurses in the ER (who were absolutely wonderful) to show me how to insert the tube if it happens again on the weekend. They had me do it, and it was awful. Awful, awful, awful. G was screaming, and I gave him a nosebleed as the tube went down. I pray I never have to do it again, and especially not on my own.
Sunday morning (stupid daylight savings) G woke up at 3:30 am and I just couldn’t get him to stop crying as I changed his diaper. I calmly handed him to Ryan and went and buried myself under the covers. Thankfully, I knew I had reached my limit and avoided losing my temper with my child. I got a few more hours of sleep, but woke up still in a funk. And then Izzy snatched part of my breakfast from my hand and I just lost it. Threw her outside, slammed a few doors, and was just half screaming, half sobbing.
So I’ve now officially had my breakdown. Moving on.
I took G to a new GI doctor this afternoon. I was impressed. A med student and resident listened to my whole story and the doctor asked lots of questions about his medical history, hospitalization, and eating. His plan is we should continue the continuous feeds from the tube for another month, possibly upping the rate on the pump and giving G a 2 hour “break” each day, but feeding him at the end of the break to see if he has any appetite. His opinion is that the gastroparesis (delayed gastric emptying) is probably caused by neurological issues- proving further that everything ties together. We will see him again the week after Thanksgiving to monitor weight gain and eating progress. When I asked about the G-tube surgery, he told me to “slow down”- take this one week at a time and remain optimistic that G will not need it. Although he did think 50/50 chance that he will need it is probably accurate.
So I feel like I’m just surviving day by day right now. I’m equally horrified that G may need surgery and grateful that there is that option if he is unable to get the nourishment he needs through his mouth. I’m excited and nervous about seeing the geneticist next week- excited for answers (but also nervous for answers). I’m terrified G is going to pull the tube out again and I’ll have to put it back in and will put it in wrong and it will go in his lung (yes, this could happen). We bought G a backpack yesterday to hold his pump and tube so we can get out and do things now, which helps. I have incredible friends who have literally saved my sanity the last few weeks. And I know this will get easier. But for now, I just need some SLEEP!