Yesterday, I spent all day a drs. appt. for Avery and one for Isaiah. Although Isaiah could not go because he started his retching spell and went home from school early. This was a really bad one. One of my newer nurses has not seen him like this and would not leave his side for a minute. She was totally depressed seeing him like this. He wretched (dry heaved) every 15 minutes for the entire day and needed Valium to knocked him out. This is typical for us and horrifying at the same time. But we are used to it, others new to this would be completely horrified by it. It is awful to see my man suffer like this. This was not even the worst part of the day.
Anyway, Avery was weighed twice yesterday and both revealed that he had lost almost 2 pounds in 3 weeks. The drs. all commented on how frail he looked. We met a new pediatrician yesterday and the poor guy was overwhelmed by Avery's history. I am sure he wanted to run for the hills. LOL! But he did give us good news, Avery was c-diff negative. Yay, we have been waiting for this so he could FINALLY get his cochlear implant, right...
Well not right. The other drs. that we saw later in the day all kept commenting on how he has been through so much lately and how he did not look well. The mito. dr. finally said that she just did not think it was a good idea for Avery to go forward with the implant at this time. I was devastated. I know what she is saying is true. He does not look well. He looks very weak and is very irritable and I know something else is going on. I know all of what she is saying is valid and the truth but my heart is totally broken. I just wanted to give him some normalcy with this implant. The ability to hear and communicate with this. But the fact of the matter is that Avery cannot even keep weight on him. He is just barely getting by. Things just really hit home for me yesterday. Again, the most basic things in life and my kids cannot even get that. I feel that when people look at my children that it is pity. Avery just looks so sick and I am trying everything in my power to keep him well. He just really needs a break.
I just need some serious strength right now. My heart is in pieces for these boys. I know once Isaiah is out of his spell he will be the happy little boy that he is but Avery has just not been happy in a long time. I feel like we have a newborn again.
My gosh, did this turn out to be a long vent or what. IF you have gotten this far, thanks for reading. It was just a hard day yesterday. Basically a reality check. BTW I did cancel the surgery for next week. We will work diligently to get some weight on Avery. I will keep you all posted on his progress. Love to all.
2 comments:
Hang in there. When other moms see you and your boys, they understand how it is to want to be able to fix everything for your kids and not be able to. It is so hard. You are good about seeing the up part of things, and your mom-love is the most important thing for your kids.
I just read your post and it brought tears to my eyes but you writing reflect that you are keeping your chin up high despite your little guys being so sick. This has got to be one of the most forthright posting I have seen that is smothered in motherly love. Your lil guys are in my thoughts and prayers.
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