This weekend was our church camping weekend. We had a great time...they are my family, and we love to spend time together....I stayed over on Friday night with Faith and Pete came home with the other 3 girls for some Saturday plans we already had made.
Then on Saturday evening Pete and the girls headed out to the campground. We had our talent show, which is like no other...we are a unique bunch of people:-)
After the show we were enjoying sundaes when Faith was brought to me in the kitchen. She was having a focal seizure. So we just laid her on the counter and watched her, her breathing, her colour, the seizure activity. I stayed calm!! I called for Pete to come over with her ativan, because we were approaching 5 minutes...and we gave her 1 (.5mg) and waited. She still would not come out of the seizure, so we decided we would head to the hospital in the little town we were in.
We left the kitchen and then went back in to ask for prayer first. We were surrounded!! Faith finally came out of the seizure after about 10 minutes altogether, and we headed out to the hospital anyways.
We were almost there when she vomited all over herself and the car seat, and I did my best to clean her up...when we got there, I stripped her down and brought her in without her shirt on...she was so tired...we were pushed through other people in triage and registration, then headed to the waiting room.
We were talking with the other people in the area (because in a small town everyone talks to everyone) and then Faith sat up and started vomiting again...I, being the awesome mom I am, cupped my hand, so not to get it on the floor...yuck!!
I held Faith over the garbage pail and just let her keep going...they gave us a kidney basin, but let me tell you...projectile would never have made it in at all!!
That is when they decided to get us into a room right away:-) (if you are looking for quick rooms in a hospital...bodily fluids are a great way to speed it up!!)
She was pretty cranky and then finally zonked out...and we waited.
We have learned that hospitals can be a great source of entertainment. While waiting to be seen, we heard all the new cases coming in...a college guy with paper towel on his eye and in his nose...apparently the deck still looks ok, drinking? Obviously...
The guy who comes in and says "I was here last night, and the doc gave me a prescription but they never filled it. I need a new one". And when questioned started cussing and left the hospital...but stayed outside the door...security was involved to escort him off the property.
Then there was the ambulance call that came in...The man was obviously drunk, and when asked in triage why he was there, loudly stated that he had no idea!! They continued questioning him and he had some very interesting responses...but the most memorable response was "Are you on any medication right now" He replies "Beer", then they said "anything other then beer?" he responded "Vodka". They also asked him how long he had been drinking (meaning that day) and he said "about 8 years"...we were killing ourselves laughing!!
Anyhow, they finally came in and asked about Faiths protocols and was it necessary that we go to the hospital. I think that while we are trying to figure out what is going on with her, any seizure that lasts 10 minutes and takes that long to respond to the PRN should be documented somehow...I wanted the bloodwork done to help determine potential reasons for the seizure...it is like we are putting together the puzzle of her brain and we need to find all the trigger factors...
They used this numbing cream, Emla, on her arms and let it sit to take effect. Then they came and drew her blood and the results came back that she was showing very mild signs of dehydration. Her creatinine levels, and something else were low, and her sodium level was at 138 (which is the lowest it should be)...these apparently show the dehydration. But it was minor and we just bought some gatorade on the way back to the campsite to help bring her levels back up.
Anyways, all is well, she was cranky and not really herself today. I guess that is the recovery from the ativan. We are still learning to deal with this, and are getting better at handling it all:-)
Now, to my question...it is a hard one and I want honest, hit me, answers...I don't care what side you are on, I just want to make the right decision...
We are planning a family vacation. 1 week of camping, and we were thinking maybe at Algonquin or Temagami, not sure yet where. After this weekend, and the hospital trip (which was 4 hours btw) we are feeling like our other kids are getting the raw end of the deal...this was more eye opening then anything.
We are so thankful to have had friends there to watch our other 3 kids, they enjoyed the fire and marshmallows, they enjoyed playing with their friends, the friends helped get our kids into bed (oh, and the dog) and gave up their time for us.
It is nice to have that peace of mind, but it is bittersweet...we didn't get to enjoy the fire and marshmallows with them, we didn't get to watch them enjoying their friend time, we didn't get to get them ready for bed...or deal with our dog...we missed it all. Our kids missed that too.
And Cutie Pie has some anxiety issues that she needs to learn to work with, and was very concerned, kept talking about it and then was quiet as well.
I know this is part of their life, and they are going to just need to learn to live through it together. However, I really want to be able to take a "normal" (for lack of a better word) vacation for them...where they are not worrying about if Faith will be ok, or if our plans will change. Will both of us be at the site with them or will we lose one parent along with Faith to the hospital?
I am really struggling with this decision...On one hand, she is part of our family, and what memories are we making without her? and on the other hand, the other 4 kids are having to give up their time more often then desired...I don't want to miss them and lose them in the process either....?
So, what is your opinion, anyone who deals with this kind of issue I would love an opinion...to help me work through what would work right for us, our kids and Faith...
Hi Ruth
ReplyDeleteI am a friend of Shash's and have followed your blog for awhile now but have never commented. We have gone through a similiar journey with our daughter, as she is now 7 years old and was diagnosed at the age of 2 with moderate to severe autism. We had to fight with the doctors to push for a referral for her as the doctors thought she was too young, mothers instinct told me they were wrong.I was right and now wished I was more forceful then I was at the time, and not itimidated by the fact they were doctors. I mention that b/c you have mentioned similiar feelings in other posts.
Anyways to the question at hand, in the first 2-3 years this was a huge issue that we had to deal with as my daughters tantrums were so severe that anytime we went anywhere or to anyone's house, she would be severely tantruming within 15 minutes of us arriving. When I mean tantruming, I'm talking, screaming, kicking and banging her head on the floor. She would become so overstimulated that we could not calm her down, needless to say we would end up leaving. The other thing that became a problem was that she had no fear and no awareness of danger that I would be following her around anywhere we went because she was such a danger to herself. We eventually stopped going to peoples house's for visits, bbq's etc. and things like camping was no even a reality. We pretty much stopped going out for about a year or two.I have to say too, that we did everything at that point to try to make it work. Finally I realized that that was not going to be healthy or a viable solution to not go anywhere. ALL my children's needs needed to be met. The fact was, at that time in our life she was receiving daily therapy sessions, much of the focus was on her, so to give the other 2 a day out where they could have mommy's full attention was not only important but vital. For us at that season in our life, there were times that in order to give my other children a much needed day opportunity to visit their friends at a friends bbq, or a day at the zoo, my daughter was babysat by grandparents. Now this was not all the time, we would still try to do most things as a family. The fact was,I knew that my daughter was happier in a calmer safe enviroment.
Now I will say, you need to do what works best for your family and what you are comfortable with. Pray about it. I know that we were totally judged even by friends, but I still believe it was the right decision for that time in our life, and the people who judged have not had to make those hard decisions.
Today my daughter is doing amazing, and can go anywhere and that is not an issue anymore.
Every family is different and what works for one family may not work for another. All our journey's are all so different and we need to not judge another families decisions but rather support families especially those that have children with disabilities.
I am now working with the Autism Services Program in my community as a Behavior Interventionist and now have the priviledge of working with these amazing children. I see and meet lots of families, and Ruth from what I have read from your blog, you are an amazing mom to this this precious little gift God has given you. Don't doubt yourself and trust your instincts. No matter what decision you make in this matter or other issues to come, you will make the right one.
Take care, sorry for the long post.
Sincerely,
Tricia