I just thought I was going to get some rest now that we are back home. But James had other plans. He woke up early Thursday morning around 1:30 am and came in to our room burning up with temperature and complaining of a headache. He had a 102.4 temperature. I took him into see Dr. Honey Thursday afternoon and we got him on a prescription, but while we were there she noticed that he has a bit of a concave chest and did an EKG on him. We pretended he was a robot and he took it all in stride.
Yesterday afternoon he started complaining of not only a headache but also a tummy ache.
He rallied one more time before bedtime and was able to eek out a little more playing then crashed and went to bed. This morning he woke up bright and sunshiny happy to report he feels great!
Back to Katy Jane. I spoke to Dr. Brown's nurse yesterday to ask my questions. His official diagnosis is that he thinks it is the Sandifer's Syndrome, not neurological. He is going to send it to an epileptologist for a second opinion, just to be sure. I guess all of that is reassuring. I would rather deal with Sandifer's than something neurological.
When we were at the hospital and the tech was putting all of the leads on Katy Jane's head for the EEG, she was very upset about it and cried and fought it. She has some sensory issues and the tech had to scrub her head with an abrasive, gritty gel before gluing on the leads. This completely unnerved her and she was hysterical. Because she was so upset and fighting so hard, she was sweaty and the leads wouldn't stick to her wet little head. So the tech then used medical grade superglue to attach them. She screamed louder, as if in pain, but I still just assumed it was because of her sensory issues and tried to comfort her as best I could. Wednesday when a different tech came into remove the leads I saw that she had had a reaction to the glue, it had burned her skin, and she had sores on her sweet little head. As he was pulling the leads off he pulled out a lot of her hair as well as some of her scalp. THEN...he proceeded to pour acetone on her scalp to remove the superglue causing her agonizing, burning pain. She became frantically agitated and started jerking in a strange way. Then I smelled the acetone and realized what he was using to remove the glue. I immediately stopped him and stripped her down and put her in the tub to rinse her sweet little head off to try to stop the burning. She went completely limp in the bathtub. No one seemed to have any idea how to get the glue out of her hair and off her scalp so I asked for our discharge papers, dressed her and got out of there as fast as I could. At that point she was so very distraught that I just wanted to get her home and comfortable. She had about 7 open sores on her head and her scalp was red, angry and inflamed.
After we got home later that afternoon, her sweet Daddy took care of her. He was very distraught over the condition of her scalp and head. He patiently worked on getting some of the glue out of her hair as gently as possible using baby oil and Vaseline. He had to leave the glue that was still on her scalp alone so as not to cause anymore trauma.
Yesterday I spoke to a manager at the hospital about the incident and emailed her the pictures. Later, when I was giving Katy a bath she became very upset and frightened when I was washing her hair. So glad we now have yet another neurosis to deal with from a hospital stay.
As horrible as all of that was, I have to say that the nurses at the hospital we were at (excluding 1 cranky one) were absolutely precious and kind. The best nurses we've ever had...and we've had a lot of hospital experiences with a lot of different nurses. One little nurse tech was so upset about Katy's head and went out of her way to help me. I made sure to convey this to the manager I spoke to yesterday. I didn't want to get the EEG tech in trouble, I just don't want this to happen to anyone else and wanted them to know not to pour acetone on open sores.
Settling back in at home is nice. The boys missed their sissy and she is so happy to have them back as well.
Katy Jane's head is healing and Brad was able to get the last of the glue off her scalp yesterday.
Before I left town, Penny brought me a book to read during the long hours at the hospital. It was a life-changing book. It is called Psalm 91 for Mothers. It breaks down this Psalm and explains it's meaning and the power of this covenant.
I read, highlighted, underlined, starred, and claimed those promises for my children and family. The Lord's word always brings such peace and comfort but this particular Psalm promises the Lord's protection, and we sure need that. It brought me so much peace during those 3 long days in the hospital and again as I claimed those promises over James when he woke up so sick early Thursday morning.
When we were at the hospital and the tech was putting all of the leads on Katy Jane's head for the EEG, she was very upset about it and cried and fought it. She has some sensory issues and the tech had to scrub her head with an abrasive, gritty gel before gluing on the leads. This completely unnerved her and she was hysterical. Because she was so upset and fighting so hard, she was sweaty and the leads wouldn't stick to her wet little head. So the tech then used medical grade superglue to attach them. She screamed louder, as if in pain, but I still just assumed it was because of her sensory issues and tried to comfort her as best I could. Wednesday when a different tech came into remove the leads I saw that she had had a reaction to the glue, it had burned her skin, and she had sores on her sweet little head. As he was pulling the leads off he pulled out a lot of her hair as well as some of her scalp. THEN...he proceeded to pour acetone on her scalp to remove the superglue causing her agonizing, burning pain. She became frantically agitated and started jerking in a strange way. Then I smelled the acetone and realized what he was using to remove the glue. I immediately stopped him and stripped her down and put her in the tub to rinse her sweet little head off to try to stop the burning. She went completely limp in the bathtub. No one seemed to have any idea how to get the glue out of her hair and off her scalp so I asked for our discharge papers, dressed her and got out of there as fast as I could. At that point she was so very distraught that I just wanted to get her home and comfortable. She had about 7 open sores on her head and her scalp was red, angry and inflamed.
As horrible as all of that was, I have to say that the nurses at the hospital we were at (excluding 1 cranky one) were absolutely precious and kind. The best nurses we've ever had...and we've had a lot of hospital experiences with a lot of different nurses. One little nurse tech was so upset about Katy's head and went out of her way to help me. I made sure to convey this to the manager I spoke to yesterday. I didn't want to get the EEG tech in trouble, I just don't want this to happen to anyone else and wanted them to know not to pour acetone on open sores.
Settling back in at home is nice. The boys missed their sissy and she is so happy to have them back as well.
Psalm 91:1-Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
2 I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
my God, in whom I trust.”
3 Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
9 If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”
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We will keep praying for you all!