Wednesday, September 17, 2008

Another Week!

We've been soaking up the last of these beautiful summer days and I managed to snap some pictures of the kids in the backyard last week.
Noah's long course of IV Ancef ended yesterday and I've been dreading this for a while, especially with his birthday coming up on Sunday. His line site is still draining crud and we've been silver nitrating it with no improvement. He's battling a cold, and yesterday was a particularly rough day of retching, secretions and worries about aspiration. (Not sure if this is cold related, or due to the small amount of Neocate we have started adding to his Tolerex formula. Time will tell...). Call it that "mommy instinct", but I've been worried about what will flare up once he is no longer covered with the Ancef. We are no longer in the "Noah's doing great" days, but rather in the "he's ok, but things aren't quite right" days. We met with ID yesterday, who wanted to stop the Ancef and have a team meeting down the road to discuss trying the ethanol locks. Not what I wanted to hear. I had been hoping that this would all be sorted out and ready to go. But the appointment was a bit of a jumble, since someone had cancelled it for some unknown reason, and no one was prepared to see Noah there.
Music therapy was a bright spot in the day though!

But it looks like we will be able to breathe for a few days longer and hopefully get through the weekend. Thank you, Doris, for once again being our advocate and buying us another week of antibiotics! We are going to restart him on Ancef this afternoon until next Wednesday. And hopefully by that time, we will have something sorted out with the ethanol locks.

Patience... a lesson I am continually being taught...

Another bizzare thing has cropped up. Noah has developed 2 very noticable brown mole-like spots that have literally appeared on his neck/chest overnight. ID was stumped as to what they might be and have suggested that for now we "watch and wait" to see if they change.

Placing all my cares in His hands...

12 comments:

Jamie said...

Those picture of the kids are so great - and your backyard looks so green and colourful! I'd love to see it sometime in the summer :)

I'll be checking in for updates as things go on. Those spots on Noah's neck ARE quite mysterious...

Christie Tuttosi said...

Keep on keeping on...

Anonymous said...

Loved all the pics, and are praying that he will get over this cold. Also praying for you. I know this is never easy for you, the what ifs, but thank God, you have him to hold on too. see you Sunday. Love mom

Grandma daisy said...

Your Dad has been busy combining at our place the last few days. Right now there are 3 combines in the field for a few hours and he's the only combine with a radio and giving directions to the truckers--Kevin and Trevor-
Those moles do seem strange.
May God continue to hold you up. Who would of thought three years ago that your life would be filled with medical machines etc.for Noah. Praying for you
Emmy

Ramona said...

Nichole, you and Brad encourage me and "inspire" me to keep trusting in the One we can rely on. Little Noah's life is a miracle and he is such a gift and has brought you and so many people such joy. I am praying for you to keep grasping out to the One who holds you as you struggle with new things and as you try to enjoy the sunny days at home without worrying about the tomorrows...
I am still here, reading your blog and praying (even if I don't comment as often as I should...). I can't wait to see pictures of his 3rd birthday being celebrated in your yard! his third birthday- praise God for that!!
Ramona

Kim said...

Hey Bean - I thought you were supposed to stay out of trouble! Praying that you stay healthy for your big party...3 years old! You are truly worth celebrating!! Love you!

Anonymous said...

I just wanted to wish Noah a very very happy birthday. You have such a beautiful family, and I think about you all the time, and check in to see your progress. It is always such a joy to see the pictures you post of your great times together, and to see that you focus so much on the good. You are a very strong woman. Take care Nichole.

April (buttercup)

Anonymous said...

Happy Birthday, Noah
We wish you a happy day. We are always praying for you.
Wayne, Erica, Jordan, Adam & Mark

Anonymous said...

I love those pictures. You have a beautiful family Nichole and Brad. I pray for continuous health for Noah.

Love, hugs, and kisses

~Rissa

Jamie said...
This comment has been removed by the author.
Jamie said...

Happy Birthday Noah! Can't wait to hear all about it!!

(BTW - that was me who deleted the last comment :)

Anonymous said...

Happy Birthday Noah Bean! I hope you had a very blessed and wonderful day!

~Rissa and family