I should probably stop saying that I'm hoping that "this" is my last tube placement. LOL It just doesn't seem to be going the way that I'm thinking it will - though the end is in sight!!!
Roger woke me this morning to tell me that Eliana's tube was out ... again! It came out sometime between 3am and 6am. It was a fresh tape job too. Hmmm ... I'm not sure how she does it sometimes, but she is good at it and fast to boot. She does rub her face a lot, even in her sleep. I know that we will all be glad when she doesn't have to have any more tape on her face!
Her poor little face was very red. Having her tube pulled 3 times in less than 24 hours can be rough on the skin. I decided to wait a little bit on reinserting it. I gave her a bottle and she took a little more than an ounce. Later in the morning when my friend Lea came to visit, she held Eliana while I put it back in. She was here for the very first one that I had to place at home - and now this one (but I'm not going to say what I'm hoping). This time was very smooth. Eliana hardly fussed at all. It didn't get "stuck" on her gag reflex at all this time which was sooo nice! This was #39.
Now, I'm really hoping I'm done! I have no more tubes. If she pulls it, I have to put one back in as she needs to be hydrated for surgery. I'm guessing that I could go through the surgical staff or cardiology to get one on a Monday. I'm really hoping we won't need to do that. I guess I won't be putting a tube in her scrapbook after all, huh?
This is typically when I do our week at a glance. I really don't know much about our upcoming week. I can write what I do know.
Tomorrow I need to make a couple of phone calls. The first is to find out when Eliana's surgery is scheduled. We are thinking it will be early morning and that is what I'm hoping for as well. I'll post when I know for sure. I know when they scheduled her heart surgery we were in doing pre-op the day this decision was made and it occurred about mid-morning. I'll probably try then.
I also feel that I need to call the medical supply company. Sending the wrong sized tubes was surely a mistake - but one that should not have happened twice. I had a very lengthy discussion with them after the first wrong shipment. I also think it was wrong that nobody called back to offer any other solutions when I was told that they would. I am thankful that I had other options. I am thankful that our pediatrician was here on the day that we needed her. A great solution was found, but I want to make sure that I follow-up on this problem too. I also don't want our insurance to pay for the 2 shipments of the wrong items that were sent to us. This isn't something I really want to do, but I do feel like it is the right thing to do.
Tomorrow I need to prepare for another trip to the hospital. Packing items that we might need for an overnight - or a couple of nights? - stay. I don't think I'll take much as we live close and I can always get what I've forgotten. I haven't even made a list yet. Yes, as usual I'm waiting until the very last moment. I also need to adjust her feeding schedule in order to get in a last feeding 6 hours before we are to show up at the hospital. In preparation for an early surgical time we are bumping up her feedings one hour tomorrow. I'm going to need to be very diligent about staying on a schedule so that she can get as much fluid and nutrients as possible. We will also be able to give her clear liquids 2 hours before surgery.
My parents are coming tomorrow. They will be staying with the rest of the children while we are with Eliana. I'm so glad that they are willing to come. I'm thankful that they offered to come without even being asked. I am very thankful for my parents. My children are so excited about seeing them! We'll need to spend some of the day doing some cleaning up.
I also just want to spend some time having fun - reading books or playing games. A nap would be lovely as well. I tried to take one today, but the timing of Eliana's nap and feeding just didn't work. Oh well. Soon it will be time to turn in.
Tuesday will be surgery. I don't know any more details other than it should take less than an hour once the surgery begins. I'm not sure how long the prep and post-op will be. I don't know how long we will be allowed to stay with her either. It's alright though. We'll find out when we need to know.
Here are some things I would love to for ya'll to pray for.
- Please pray that Eliana remains healthy.
- Eliana's skin is looking pretty red from having the tube pulled 3 times in less than 24 hours. Please pray for healing of her skin and that she wouldn't get infected there.
- Please pray that she is well hydrated and that they are able to get the lines in for IV, etc without having to result in more drastic measures (as they did with her heart surgery).
- Please pray for her surgical team - for the health, emotional well-being and skill.
- Her surgeon is Dr Rice. Please pray for wisdom and successful surgery.
- Please pray that we wake up in time and that we don't sleep through the alarm (like we did for her heart surgery - waking up just in time to quickly grab our things and go!).
- Please pray that the surgery is a success. Reading the "possible" things that could happen on the release form that has to be read, discussed and signed is hard. I am hopeful that none of those things will happen to our sweet girl.
- Please pray for her recovery.
- Please pray that this G-tube would be the beginning of the road to successful eating for Eliana. This has been a long road thus far and we would love to see more successes!
- Please pray for our children at home and my parents who will be with them.
- Please pray that we would see and know God's hand, presence and peace through all of this.
Anything else you feel led to pray for would be greatly appreciated
I will update a time for her surgery as I'm able to. I will also try to update from the hospital. Thank you for your faithful prayers for Eliana, me and the rest of our family.