Please say a prayer for my friends toddler...
Here is the web site that explains all that this little angel has been through. http://www.caringbridge.com/fl/makilyangel/
All positive thoughts and prayers are need, badly!
And here is their story....
[i]Journal
Saturday, June 10, 2006 9:39 AM CDT
Hello--this is Auntie Deb updating for Trish and Makily. Please keep Trish, Allen, and Makily in your prayers.
Makily woke Trish up fussing this morning about 3:15, Trish thought she was refluxing, so she gave her some Prevacid, and Makily seemed to be settling down. Trish was trying to go back to sleep when Makily made a noise. Trish turned on the light, and Makily was staring vacantly at the ceiling. Trish called her name, shook her, pinched her, and clapped her hands over her head, and she did not respond to her. She was, however, breathing. Trish went to get the phone, and that is when Makily began having the siezure. She called 911. It took the paramedics 15 minutes to get there, and Makily siezed the whole time. The Paramedics took one look at her, picked her up, and ran for the ambulance. Her oxygen level was in the 70's when they got her on the ambulance, so they gave her oxygen. They also gave her versed to try and stop the siezures. They tried to intubate her in the ambulance, and of course, couldn't do it.
When they got to Munroe, They intubated her, and put her on the ventilator, and did a chest x-ray, blood cultures, a lumbar puncture, and a CT scan of her brain. The CT scan came back showing that the ventricles in her brain are slightly enlarged. They were not sure if this is what caused the siezure, because she had a CT at Shands that basically said the same thing, and this is the first siezure Makily has had. Makily did not have a fever, so this could not be what caused it.
It looks like the siezure could have been caused by either the enlarged ventricles, a hypoxic episode (Makily has been having a lot of mucus and saliva lately due to teething and a cold. We were thinking maybe she got choked up on some of her secretions, didn't get enough oxygen, and started to sieze), or the fact that Allen's father was an epileptic. He started to have siezures when he was 2. They got them under control, and he never had major problems from them, but this is obviously not something Makily needs.
Trish and Makily are on their way to Arnold Palmer by ambulance right now. Makily is still on the vent, and when I was in the room with Trish and Makily, she was still having siezures occasionally. They had to give her ativan to stop them while I was back there. Allen just got back (he has been driving like a madman) from a run, and is trying to gather up some things to head up there as well. Pray for a safe drive for him, because he is going on no sleep.
I will update as I hear anything new, or Trish will if she can get to a computer while she is up there. Please keep them in your prayers!!!!!
***UPDATE 6-10-06 @ 3:45PM*** I got a call from Trish and this is the latest news. Makily made it safely to Arnold Palmer, and started to fight the nurses and doctors and let them all know how much she did not appreciate the ventilator and the breathing tube. She was trying to pull the tube out with her feet while they were holding down her arms. They tried to give her some sedatives, but they were not working, so they resorted to giving her a paralytic. They did not want to risk losing her airway. We are all breathing a sigh of relief; Trish was very concerned that the length of the siezure had caused brain damage, and to see her telling the doctors and nurses no way made her feel much better. Makily is resting quietly now.
She had her MRI. Trish said that halfway through the scan, the tech asked her if Makily had ever had a VP shunt before. Trish said no. She asked the tech did she think Makily needed one, and she would not answer her. Makily will have an EEG again today, and then the Neurologist will see them either today or tomorrow to discuss the results and their plan. We are all praying that she will not need a shunt. One of the doctors said that some people just have enlarged ventricles, so hopefully, that is the case with Makily.
They are going to put Makily's ear tubes in on Monday since she is sedated, it was scheduled for the 16th anyway, so they are just going to get it over with now, then they will try to get the breathing tube out later that day. They want to extubate her slowly because of her past history. The people at Arnold Palmer are so wonderful, and are taking good care of Makily.
More updates to come as I get phone calls.
***UPDATE 6-10-06 @6:20 PM*** The Resident and the Radiologist came in to see Trish and Allen. The MRI showed that there is extra fluid in the front portion of the brain, and they said that lots of kids walk around with this amount of fluid and never have a problem. They also found that the portion of the brain that controls fine motor skills, gross motor skills, and sensorimotor is smaller than it is supposed to be--it is not alarmingly smaller, but it is not the size it should be. They believe that the combination of the extra fluid, the genetic syndrome, and the smaller motor section is what caused the siezure, and it puts her at higher risk for a siezure disorder anyway. They said they do not think that Makily will need a shunt, but that the Neurologist was the one to ultimately make that decision. She will need to be on siezure medication. The Neurologist will decide which drug and adjust the doseage. They are concerned that due to the length and the severity of the siezure (it lasted about 30 minutes total and did not stop until they had a couple of doses of drugs on board) that she will need to continue to follow up with a Neurologist, and be on the meds. They are afraid that if she has too many more siezures like that, that she will suffer from brain damage.
Trish says she has noticed that Makily has had episodes where she will stare off into space for a few seconds, but then she is okay, and that is how this siezure started, so maybe she has been having them all along, and this was just the bad one?? Hopefully, we will have some more answers once the Neurologist sees her and talks to them.
Trish and Allen are staying at The Ronald McDonald House, and she wanted to thank everyone for their continued thoughts and prayers. I'll continue to update, or Trish will as we get more news.[/i]