Tuesday, July 26, 2011

Update on My Little Hazelnut

Thank you to everyone who prayed yesterday and left me sweet comments telling me so. They encouraged me when I needed it. Everything went just fine. Little Hazelnut did wonderfully. She is used to getting IVs so she doesn't even cry anymore. She even tells them what vein she normally gets her IV in. Results will take about 2-4 weeks. In the mean time, she will have another set of tests run. To explain these tests, I should probably give you some background information on what happens to her.

Beginning around the age of 6 years old, Hazelnut has had episodes of ketosis. The first episode she had that I noticed was really severe-she woke up disoriented and didn't know who I was. I immediately smelt the ketones on her breath and off we went to the ER. If you are diabetic or know anyone that is, you probably are aware of ketones and their smell. You typically find this problem in diabetics. But Hazelnut isn't diabetic; they have searched and searched, and she doesn't have diabetes. I am very thankful for this. There are other disorders that can cause a person to go into ketosis, but sometimes they are harder to find. Especially hers, because the minute she goes into an episode, we head to Texas Children's, at the same pumping her full of food which helps pull her out of one. By the time we get there, they can't find enough information in her blood to diagnose her with anything. I have to feed her though, because too many ketones in her system makes her sick. That is the other thing with her; when she gets any type of illness, she goes into an episode. It is hard to pull her out of one if she can't keep anything down so IVs have to be given. Right now, I just check her sugar and ketone levels with a glucometer and keep her fed. She gets ice cream a lot now which she doesn't mind. I also am supposed to try to put some weight on her, but that isn't easy. She is naturally very small and thin. She just turned 10 and weighs 50 pounds. Basically, she is the size of a 7 year old.

The doctors are also looking into a reason why she is so tiny. She has been tested before, but they didn't find anything. She just might be small. Anyways, we are seeing some specialists at Texas Children's, and they think she is an interesting case-she is  mystery to them. They think that whatever she has is very mild. Again, I am thankful for this. They are trying to rule out all possible reasons, and if they do, she will get a diagnosis of ketotic hypoglycemia. She should outgrow this, but according to the medical field, she should have already outgrown it. One reason for the mystery of it all.

Her next set of tests will be an overnight visit where they will force her into an episode and immediately take blood to get readings at the exact time of the episode. Sounds kind of awful, but it is safer than waiting for it to happen naturally. They will hook her up to an IV and give her fluids to keep her hydrated, but she won't be allowed to have any form of glucose-basically she will be fasting until she goes into an episode. Again, she will be hydrated though. After the blood is drawn, she can start eating again. When her levels are good, we are free to go home. The biggest difficulty with this test is just them being so hungry. Hopefully, movies will entertain her enough. I'll keep you posted on when that will be so you can pray through that as well.

I will also update my results soon as well. I know I said I would do it yesterday, but life got in the way. Just to give you a sneak peak into the results-Judy Moody is mad and the Weeping Willow cried!


Lisa Maria said...

Hi Tami

I'm a little behind on my reading.. its been so busy around here, my time on the computer has been limited. I'm glad things went well and I hope and pray that 'Hazelnut' doesn't develop anything else. You sound so stoic and patient.. even if Judy Moody and Weepy Willow exist ;-)

Its hard to think about young ones having to go through things like this but they seem to come through it better than us adults.. they're so resilient. I bet it was harder on you to watch!

Praying for you and JM and WW and all in the nuthouse.

Love & Hugs

"Ima" said...

Lisa Maria-totally understand on the being behind thing-I'm completely behind on so many things, especially blogging. Thanks for the prayers. We could use them, especially me as you are right-it is harder to watch than on her. I just hate watching my kids sick and going through some things. Sometimes being a nurse is worse-there are things I wish I didn't know. And if I'm patient, it is only because of God. I wasn't so patient with the specialty department in the past. (and did I mention that I didn't want to work with one of the doctors in another department. I didn't like him so I requested another one) So any of my patience is from God, but then again anything good in me is from Him. I'll keep you posted.

Kara said...

Came back to check on ya...know we are praying. Any friend/family of Cheryl's is a friend of mine.
And I know that fear--fear for a child. The battle to place them back into His hands. To trust Him with their lives.
It's so hard.
Praying for you...and for clear answers.

My daily walk in His grace! said...

Hi Tami - Will continue praying for a good report, with answers and solutions and healing. And for you too and all the other 'nuts'
God bless

Debbie said...

Now I know exactly how to pray. I'll be praying that they are able to discover, between this and the other "forced" test, exactly what it is and are able to fix it.

I'm very glad to read that she is responding well this morning and that you are fine, albeit in a Judy Moody Weepy Willow way.

"Ima" said...

Kara-thank you for checking. That made me smile. So appreciate the prayers.

Tracy-thank you as well for your prayers. I can truly feel them. Thank you for being such a faithful prayer warrior. I always know that you will be praying.:)

Thank you Debbie. I am so enjoying your bloggy friendship and prayers. Right now everyone is doing great-even Judy Moody and Weeping Willow aren't around right now. And when they knock, I'm gonna try to not let them in:)

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