Ethan is doing great. He has been fabulous. Slowly but surely our room (the New NICU) is getting put together. Once it is presentable I will post a picture for those of you that don't believe me when I say it is a hospital room at home. But at least it is at HOME. We did have to run to the hospital at 10pm last night. His g-tube (feeding tube) was clogged. Our home health nurse that was there helping us get situated tried to unclog it for an hour. Then Greg and I tried. After he had already missed a whole feed and meds were due we had to go in. The heart unit is great. They just had us come up and they popped a NG tube in his nose, gave his meds, and started his feeds and we went home. Tomorrow we will see the doc and get the G-tube changed.
Someone asked me today what was easier. . . Hospital life or home life? So far hospital life. Every other night I got a least a solid block of sleep, and someone else (the nurses) would do his basic care if I was too tired! Ethans care is a 24/7 job. Greg is soooo helpful, but I miss the nurses :)
Hopefully life will be much easier after the next surgery. . . hopefully then they will take his trache out. That would eliminate a lot of his equipment and a lot of my stress. Not to mention I am dying to hear his voice. When ever I think I can't do it I just take a minute to look at that sweet baby and thank the Lord for him. He has taught me so much. I used to joke that I was waiting for Greg and I to have a major trial because life has been too good to us. I guess the Lord was listening and decided it was our time. Thanks to ALL of you who are getting us through this time. My gratitude cannot be expressed enough. Our support is immense.
Thank you-
Heidi
8 comments:
Oh Heidi! One of my best friends little girl has a trache. She is is 7 now and I watch Tiffany in such awe. It cant be easy, but I know Ethan is so lucky to have you as his mom. Here is to hoping you get a little sleep tonight. You are all in our prayers.
It is so intimidating to be home. Some would look at me like I was crazy when I said I missed the hospital, but it is true. No one but a heart parent or a parent of a sick child will ever understand the stress that comes with having to be responsible for all the medical care giving at home. All you want to do is bring your baby home, but once you are home, you wish you could have a nurse there with you to help calm your fears. It is SOOO much to take it at one time, but slowly and surely your life will settle into a routine...and it will get less and less scary and you will begin to trust yourself more and more. You will start to do things like a pro.
I am SO glad he is home with you now, it is nice,(even with the stress) to sleep in your own bed. One day at a time is how you take your steps now. That is how we have learned to live our lives. We never plan past tomorrow.
Sending our Heart Hugs and Blessing
Jenna and Lilyana
I have never seen the trach equipment. That is uncharted territory that we have not had the pleasure of experiencing.
It sounds like you have things under control at home. The first few months with Owen home (before surgery 2) was note asy. He slept through the night, but I was still up 3 or 4 times adding food to the feeding pump and checking his sats.
What am I saying.. I still do that?!
It gets easier. You'll find your routine. Ethan will find his routine. Have you checked into AZLTC? I don't know how early you can try to qualify. We're in the process right now because nobody told us about it. If qualified... not only do you get secondary insurance (we don't need it, but it's nice to have), but you also get respite care. A respite working comes out a certain number of hours a week to take the "load" off... so you can get something done with your others kids too.
Just a little tip.
Praying for you all. Can't wait to meet Ethan!
I am so happy Ethan is home!! I have been dying to see that little guy again. All my attempts to catch both of you at the hospital the last few times were in vain. Perhaps I can get brought up to speed and help with your little guy so you can rest/shower/what have you! Steal that rest when you can. Love, Wendy
Anytime you need me I'm there!! Can't wait to finally hold him!! Call me anytime! xoxo -Sandi
I am so happy you are getting settled! Honestly if you ever need- I did those blasted NG tubes for months in my sleep, so I could place one for him if you are ever in a lurch!
Take care, rest and BREATHE! Now just make sure no one sick is coming in the house!!!
I can hardly wait to see the photos! That must be difficult caring for 3 other kids and being a full-time nurse to Ethan! Stay strong! You can do it!!
Funny... I hadn't even seen your post yet today when I wrote my new post and named it "Chaos". Here's to functional chaos! So glad Ethan is home with you!
Post a Comment