While I have so many reasons to be thankful and not just b/c it's Thanksgiving but year round, I am still sad. This admission has been tough in terms of alot of decisions. After the rough summer that Avery had and losing some kids in the mito community and knowing the reality of where Avery is at, it was time. Time to make some firm decisions of what is best for Avery and our family. At this point, if Avery is going to the hospital it is b/c he is very sick and will likely end up in the ICU. With that being said, Rick and I made some firm decisions about his code status. We have decided that Avery is a limited code. Meaning we will intubate him and ventilate but will not trach him or use any cardiac rescutation measures. It was tough to finally verbalize it and get it in his chart but it had to be done. We also made a Comfort Care form for the home. This would be in case he passed in our home or anywhere outside the hospital. We would not be obligated to call the ambulance. Avery has such a good quality life at home and we will continue to do that as much as we can. So while it was hard to final make these very grown up decisions, I feel good about them. As it is best to make these decisions while things are good.
Also, Avery will be spending his first ever Thanksgiving in the hospital. The plan is for us to stay home with the family for the day and it's what is best. Nonetheless, it's still very difficult. You just never know if it will be his last Thanksgiving. I do have great comfort knowing that Avery is in good hands with people that love him. It is his home away from home after all. Plus it's best that he is not around a bunch of kids b/c he could be at risk to catch something else.
The third reason why I am sad it b/c Avery lost his first tooth at only 4yrs. old. :( He is no longer a baby but a big boy. I just wish I could stop time and have him stay a 2-3 yr old. He is such an awesome kid.
Hopefully, Avery will be home by Friday so that he can see the rest of the family. Thanks all for reading and we are wishing you all a very HAPPY THANKSGIVING
4 comments:
Sending my prayers!
Sorry you had to make these tough decisions, but like you said, it's easier now than later, and you can always change them too if need be. When I saw the word "awesome Kid", the song imediately came to me: Our God is an awesome God, he reigns from heaven above. If & when the times comes, you may not have to make the decision, God will!
Love you guys! Hope Avery can come home soon with you!
Elaine
Hugs Nicky...to you, your family and litte Avery.
That's so sad to read. What heart breaking decisions to have to make. I applaud you being able to face up to the challenge, and make them. Can't imagine how sad that must make you.
God Bless.
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