It’s been a very long day. Long story short I spoke with both our pediatrician and neurologist’s nurses (can I say again how blessed we are to have great doctors with wonderful nurses!) and we are now giving all Ryan’s meds through the j tube and nothing at all into his stomach. The problem we discovered is that within 15 minutes of giving meds, he starts retching again. It didn’t happen this afternoon but tonight when we gave his meds into his small intestine, he had problems. Travis’s cousin I mentioned earlier came to the rescue and we talked on the phone four times today. She has been an absolute blessing and gave us lots of very useful information since she’s been through all this. From her expereinces and advice, we are going to try giving Robitussin four times a day through his tube and see if that helps cut down on the dry heaving. It worked for her little boy so it’s worth a shot. Anything to keep him comfortable and out of the hospital. The poor little guy is so tired and has slept nearly all day. I would guess he has been awake for maybe five hours since he got out of bed at 8 am this morning. He’s so worn out and has exhausted both Travis and me today as well. This is so frustrating and stressful and I never imagined what a pain in the rear all this stomach stuff is. It makes the seizures seem easy in comparison but that’s what we’ve known for years. All this gastrointestinal stuff is new to us and having him hooked up to tubes and all that is not in our comfort zone at all. Yet. I know with time this will all become very familiar and get much easier but right now, we are not enjoying it one bit. It’s kind of depressing to see that after a month since his brain surgery, we are worse off than when we started. Don’t get me wrong; the surgery was a complete success and there was no way to know this would happen. And who knows if it’s temporary or our new normal. We’ve never had a diagnosis so we have no idea if this is some random unfortunate event or if it’s a progression of all the brain damage from seizures Ryan has endured. Not that it really matters, because it’s not going to change the fact that this is hard. Travis slept on Ryan’s floor last night and tonight they are sleeping on the couch together. I have to work Saturday and Sunday nights so who knows when we’ll get to finally sleep in the same bed. There’s something so comforting about sleeping next to your spouse. We’ve been married for nearly 18 yrs and with everything we’ve been through, we’ve never gone this long like this. I know it’s going to take time to adjust and I hate to complain. I’m not trying to and I certainly don’t want anyone feeling sorry for us. I’m just trying to keep you all in the loop so you know how to pray. I know so many of you care and walk this road with us by choice, not because we ask anything of you. We appreciate the support you give us with your kind words, prayers, the food and cards and help with groceries, gas and food. I am so humbled right now and feel like a charity case which I hate. But someone very wisely told me last week, and I have to believe it’s true, that maybe God is allowing all this to happen to us at not because he wants us to learn to be good receivers (I’d much rather be on the giving side) but because God wants to teach others something through their giving. I have to believe something good is coming from all this somewhere. I know I’d much rather be in a very boring place right now and be able to honestly say nothing is new and I don’t have a thing to talk about. Then again, when do I ever not have something to say?! Everyone knows I’m the talker in the family. I just wish I had something else to talk about!
2 thoughts on “long day”
You have no idea how your words touch all of us who are following you posts. Realizing how exhausted you must be and yet you take the time to share from your heart makes it all the more special, as this is what draws us into your situation and shows us how to pray. It also opens our hearts and spirits to be on the alert to what God would have each of us do to somehow come along side of your family to help in practical ways. You are being prayed for every Sunday morning as we meet from 9-10 a.m., as well as daily by all of us as we lift your family to the only One who can give you peace and comfort and joy in the midst of such a stressful time.
Hugs to you, Sweet Friend!!!!! We, too, are now on the receiving end and it truly is so hard. I will never tell you I know exactly what you are going through but I can understand a bit what you are talking about and feeling. We have sent e mails a few times, so you may still have my address. Please feel free to write to vent, cry, laugh and just share!
I will find yours and write you a note sometime. My love and prayers are with you and your Precious Family! In Him,Dorine