As per usual we are crazy busy. A couple of months ago I couldn't imagine being any busier...but we are. Well this week consisted of diarrhea and a couple of call to the hospital on call pediatric surgeon for our big guy. Long story short we are still dealing with the g tube and the rip as well as him having diarrhea for a couple of days from the antibiotic and blood appearing in his g tube. We went to the hospital once since the last post and our Pedi looked at the tube and swabbed it for any other little "germs". Good news is now that it came back negative. Bad news is that we now have some skin growth or granulation tissue. Yes it has all been hard and I hate to see Wysdom cry. He is one tough boy. Right now I still like the g tube better than the ng, but it hasn't been the easiest either.
Wysdom has been a real trooper. He takes it like a big boy. He so wants to get into everything and play and all we are trying to do is keep him still so the g tube area can heal. We did have a nurse come in today and she said to let him do what he wants to do and we will see what happens in the morning. Of course Wysdom had to go full force. I can definitely say that Wysdom has learned some new tricks this week. Since we knew he was in pain, we never let him cry really. We picked him up and cuddled him and try to reposition him. Now that he is feeling a bit better, guess what we are seening? Crying and whining and then when we pick him up....you guessed it! A big smile and no more whines. He wants up all the time now. I just told Julian that we are in big trouble now!!! He is so catered too, especially because we don't want him to activate his strong reflux abilities and throw up everywhere.
This last couple of weeks he has become so much more vocal. Often people wonder who is making all that noise in the background when I am on the phone. Nope it's not Blyss, it's Wysdom. Blyss is handling this all in her own way. She has her own doll with it's own g tube and a doctors kit. She also is awesome at distracting her brother while he is getting things done to his tube that he may not like.
In general we are just staying on top of things. The house is a mess and meals, well let's just say they aren't the greatest these days. Any spare second that I get I try to head over to my moms. My sister and I have been trying to make her healthy food to eat to help get her strength up. We make juices( beet, carrot, celery to name a few). We are also looking into a lot and I mean a lot of alternative options for her care. So at night when I feed Wysdom I would normally blog, but now instead I focus on alternative cancer information. All I can say is that we take it one day at a time. We have my Aunts who are awesome and are helping out a lot with my mom's care. My mom is trying her hardest and so are we to do all that we can for her. When I do have a second to breath, I am totally overwhelmed some times. Thankfully, Julian has been awesome and so supportive. I usually leave him with Blyss and Wysdom for several hours a day. He definitely is letting me have more sleep and trying to keep me upbeat.
Thanks everyone again for your prayers and comments. I am always amazed and overjoyed at having such an awesome blogging community to be connected to and get support from. Even though I don't get on all of your blogs as much, I do think about all of you and miss blogging.
Well this week is going to be a crazy one. We have an:
appointment for the g tube, (out of town)
appointment for his forehead, (out of town)
appointment for his PT,
doctor appointment for mom,
feeding team appointment for Wysdom
and case management meeting for mom
Isn't it crazy how the brain works. I can remember all of the above appointments and dates and times all in my head, but can barely remember how old I am.(got it wrong today when someone asked at the bank). Mmmmm I think I just figured out why I can't remember my age:)
I will try to post some fun photo's soon.