Wednesday, June 29, 2011

Hanging in there

Nafey magic had a purdy good day. He has eaten a good share of dry cereal through the day and started receiving pedialyte through his tube around lunchtime. They are going pretty slow with the feeds to make sure that he tolerates it well. They started at 5mls per hour (essentially a teaspoon of fluid in an hour) for 4 hours before moving to 10mls per hour and now he is at 15mls per hour. Since he is still going strong without any complaints, they are going to increase it to 30mls during the night. If all goes well, we'll start him on his formula sometime tomorrow. At this rate, we are looking at coming home hopefully on Friday.

The little guy was in some pain last night and didn't sleep all that great, so he was pretty cranky at various times, but he really perked up nicely tonight and was more of his good ole' self again. His IV infiltrated this afternoon, so they had to place a new one. Poor little guy was a hard stick today. He cried and cried but never once fought the nurses placing the IV. When they were finally successful in placing it, he looked through tear-filled eyes at one of the nurses and said "We all done now? I was a good boy". They all showered him with high fives and gifts and said that his highly uncharacteristic attitude and behavior for any kid, much less a 3 year old, amazed them. One of his other nurses from earlier in the week said, "Nathan is why I do pediatrics. For all the hard things we deal with here, every once in a while you get a kid like him and it makes it all worth it."

He's definitely not laid-back and friendly and good all of the time. He can be grumpy and refuse to talk to people at awful times. He can be ornery and hard to convince sometimes. But for the most part, he really does seem to be an extraordinarily special kid growing up in special circumstances. Alas, he's a mito kid...and due to the complexities of issues they all face, they are hands down some of the toughest kids around. Whatever they are lacking in energy production, they are totally making up for in strength of heart and spirit.

And if none of this makes sense, it is because I have had veeeeeery little sleep the past couple of nights. I think I'm going to curl up beside my precious little son and drift off to sleep soon.


Anonymous said...

praying for you guys Amber! hope you get some sleep. Love you bunches.

september on June 29, 2011 at 11:09 PM said...

God bless you both and prayers you all get good rest tonight.

Anonymous said...

Sweet boy! That made me cry.

Praising God it's going this well!

Amy, Molly's mom

Heidi on June 30, 2011 at 8:02 AM said...

Awww, poor kiddo. I hate hard sticks. So glad he is doing well with his feeds. I loved all your recent photos of little Nate and of course these beautiful ones of St. Marcos.

I remember the night before Jacks Gtube placement, I took many pics of his little tummy. I was sad, and hated the thought of anything ruining his sweet little belly...sigh. Seems like a 100 years ago now. HUgs to you, hoping for more rest soon, for you all!
Heidi & Jack.

Kyla on June 30, 2011 at 11:21 AM said...

Glad things are going well. It is so hard to get good sleep inpatient...K's alarms always go off like crazy at night.

Like Heidi, I took photos of K's unblemished belly before the tube placement....but since she has had it and it has been so wonderful for her health, I've never looked back. I love that little button!

Lok on June 30, 2011 at 12:30 PM said...

Praying for y'all every time I see a FB post or get an update from the blog. Love that little man so much!

erin f. on June 30, 2011 at 3:47 PM said...

Sweet precious little soul....

Dianne on July 1, 2011 at 7:48 AM said...

Amber, it's sad that these little kids' disease have made them so tough, but, I know from my GRANDsonZ struggles, God has given them amazing strength and resilience. I so LOVE Nate and I've never met him. I just recognize a spirit in him that I know kinship to. You're a blessed Mama in God's graces to you as you minister to Him thru Nate. Your little girls are adorable. Your family is prayed for whenever I talk to God.

Amanda on July 1, 2011 at 3:18 PM said...

Good to hear he is mending well. I hope you can get back home and get some sleep. :)

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