Thursday, September 23, 2010


Since we are beginning our extended stay here, I'm so very pleased with the nurses that we have.

At first, we didn't have any primary nurses because we weren't going to be here all that long. Once Joshua started acting naughty and giving us all a scare, the plan of care changed and Joshie got some great primary nurses!

In just the few days since Joshua has had primary nurses, I feel so much more at ease leaving the hospital. He has the same consistent nurses day in and day out. These nurses know him- they know his mannerisms, his temperment, and when he is acting "odd" aka- having a seizure or turning blue.

Even better is that they seem to truly care about him. Not that the nurses didn't care about him before, but since he has the same ones over and over, they have developed a relationship with him. They nickname him Joshie, they love on him, and they really get to know him. I'm sure you will agree that there is nothing better than when someone else loves your child.

I'm extremely pleased with the care that we are receiving here as of this week. Our doctor is amazing, and the nurses have become more than just nurses, they have become my friends and my sanity. They cry with me, they encourage me, and they are straight forward with me. (I don't like sugar coating- tell me how it is!)

I'm so glad we are starting to get back to some sense of normalcy! It's good to be back at that place, even if going home is nowhere in sight.

In other news, Joshua has been stable today. He's now on anti seizure medication and has not had any seizure activity. He's been a bit grouchy, but I think it's because he's hungry. They have started giving him breast milk again, and are allowing him to take just 10ml's by mouth to help him continue to learn how to suck, swallow and breath. For today he is only allowed 15ml's per feeding. I'm hoping by next week some time we will have a goal to work torwards- either a goal weight, or a date for his next surgery (we could realistically be here until Halloween, if not longer. boooooo!!!!). Having a goal will help me keep my mind sane instead of just sitting here not knowing what the future may hold.

Joshua also gained weight last night. He was at 8.1 lbs and went up to 8.5 lbs. He lost just a little bit tonight, but nothing to be concerned about. Just looking at him today, I feel like he's bigger and the night nurse agreed. His head looks bigger.

Once again, I thank you so much for your continued support and willingness to encourage and love us. I am humbled and honored at the amount of emails I receive on a daily basis from people reaching out to me to encourage me. I do my best to respond to everyone, but it's been getting a bit overwhelming. If you email me/text me/facebook me or anything else, please know that I read EVERYTHING. I just may not get a chance to respond back for a day or two. Your emails/texts/messages give me so much strength to continue on. Thank you so much!

I'll update more tomorrow. Continue to pray for "boring" days without a lot of action! :o)


Anonymous said...

Boring days have been requested! Amen! Rainy

Jennifer Hood said...

Boring days are great! We'll pray for more slow, steady, boring days! :-)

leah said...

Love the news, loving your sharing every detail. Hang in there. Years from now when Joshua is standing dressed and ready for his 1st day of school, you can look back and wonder how the time FLEW by so quickly.

Anonymous said...

Praying for some boring days to come your way. Glad Joshua is stable and seizure-free. I hope you have a restful weekend.


Nikki said...

Awesome news! I hope you have a lifetime of boring days with little Joshie (I love the nickname!)

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