Is this just part of the gig?

I am pretty frustrated right now to say the least but I am wondering if I am justified or not. I might not be. Miles goes to daycare at our church - First Christian Church of Houston (First Christian School). They are a little freaked out by him to say the least. At first they were just a little nervous, as is everyone at first I guess. When the epilepsy diagnosis came they were okay at first. After the big seizure at Christmas they have become increasingly more nervous about him being there. When we sent the Diastat to school they freaked and called a lawyer - saying that administering this medication is invasive and against state law. They don't want to be held liable for sticking something in his butt. I told them, "If you let him die then you will be much more liable than if you stick something in his behind that I asked you to put there". They requested to be trained on how to administer the meds. I searched and searched and finally an angel said she would do it. I paid her $100 and she trained the whole school on how to administer this very self explanitory medication. Either Sean or myself have always gone along on the field trips because we want to be a part of everything. Today there is a field trip to go bowling. When Sean arrived to drop him off they said Miles can't go unless one of us goes along - that it is required for one of us to accompany him on the field trip. Required? Are there any other parents that are required to accompany their child on a field trip? Why do we not have this in writing? Speaking of in writing - they sent me a legal agreement about the medication. It says:
"Rebecca L. Conway-Suggs and Sean Suggs agree to indemnify and hold harmless First Christian Church/First Christian School and their officers, employees, agents or instrumentalities (the "Indemnified Parties"), from any and all claims, liabilities, demands, suits, causes of actions or proceedings of any kind or nature, losses or damages including attorneys' fees and costs of defense, which the indemnified parties may incur arising out of the negligence, error, omission, intentional acts, or other cause arising out of or resulting from the administration of any medication or medical procedure by the Indemnified Parties for or for the benefit of Miles Suggs. The obligation to indemnify and hold harmless specifically includes claims, liabilities, demands, suits, causes of actions or proceedings arising from the negligent acts or omissions of the Indemnified Parties."

I have not signed it and just cannot agree to ANY medication or medical procedure! I am thinking of editing it and saying "...the administration of Diastat as prescribed for a grand mal seizure lasting five minutes or more..." What do you think? If they were to accidentally give him some other child's meds they wouldn't be liable according to that agreement! Should I add something about the school being trained on how to administer it?

Also, I think that the teacher treats Miles differently than the other kids. At his birthday party the kids were very 'careful' with Miles and concerned about him while they were playing. There was lots of hugging and "Oh, Miles!" from some of the kids. I think his teacher may have given the impression to the class that Miles is fragile. I SO don't want that for him!

So here is where I am wondering if I am justified or not in being upset...

Is his health really that fragile? Do I underestimate the situation? I know that he has had several seizures of all different types and we don't really know what triggers them. I know his heart is a big deal. But am I expecting too much from the daycare? From my point of view - they are a daycare - they know that not all children have picture perfect health - they expect to have to give medication sometimes. There are lots of kids with health issues - is Miles' health more of a big deal than a normal kid? (btw, he is such a normal kid!) Is this just part of the gig and I have to get over it and realize that his health will freak people out - and they will be nervous so I will forever have to make concessions?

I know when we first were looking for a daycare people were so freaked out by him and his health. We had one place that looked at me like they were terrified and said "So, he could ACTUALLY turn BLUE?" (I thanked them for their time and left) Have you other heart moms experienced anything like this? Am I totally downplaying his health? Is it expecting too much to expect the daycare to treat him as any other kid?

update...

All is well. Miles is doing great. Riley finishes kindergarten next week! Can you believe it!? I have started the process to have Miles evaluated for Pre-K (PPCD). (only a year late!)

The latest from the docs is that Miles' spleen is enlarged again - about 50% larger than it should be. We are looking at his blood to see what might be going on. He looks and acts JUST fine! He did puke at the movies yesterday - right out in front of the box office! Oh well, such is life. I am so used to puke and people staring at me and the big puddle of puke at my feet. Who cares :)

No big plans this holiday weekend. I am actually at the office making up some time from yesterday - Riley left school sick with a painful tummy. Seemed to be just fine when we got home. He said he wanted to go outside and play. I told him that if that is the case I will take him back to school so that he can participate in field day. He changed his mind and plopped down on the sofa.

I forgot! Miles cath will be July 14th to close the fenestration. (The schedule hasn't been confirmed yet)

I hope you all have a good holiday weekend...

another seizure...

I was woken up this morning by Sean saying there was something wrong with Miles. It was 5:28 (I overslept a little). When he went in to check on the boys whenever he got up Miles was face down in a bunch of vomit and had peed the bed. He was rigid and non responsive - staring off. When I got up he was certainly seizing. I called the pediatricians office first - after I went to the car to get the diastat - which I couldn't find. When the guy picked up i said I think I need to call 911. So we did. I had to go wait in the parking lot for them - this complex is sooo big! The guys that showed up seemed competent but for some reason they called another crew to come in. That is when things went south! They took a bit to asses him and get him out to the ambulance. Then they couldn't figure out how much diazepam to give him - I'm not used to working with kids he kept saying. He got on the radio and asked for a supervisor - no supervisor to be found. He tells me that he is relatively new and is used to riding with someone and that the 'basic' that was with us is from another station so they don't know each other very well. His heart rate is about 189 or so and his pulse ox was hovering in the 80's. They put him on oxygen and got an IV started. (still no decision on the dosage) He called someone to get help for what the dosage should be. That guy came back with 1.4ml and he didn't agree! Meanwhile Miles' seizure is getting worse - in full convulsions now - pulse ox down to about 71%. I say - his seizure is getting worse if you are interested! He peed on himself again and then vomited into the oxygen mask. It took at LEAST 45 minutes to leave the parking lot of my complex. THEN the 'basic' goes the wrong way! Anyone from Houston can tell you that from 290 you take 610 to 59 to get to the hospital, right? So this guy takes a side street, 43rd street about 4miles east to I-45, south to loop 610 west - around to where my street hits the freeway! then 610 to 59 to 288 to MacGregor to the hospital - - this took an extra 30 minutes AT LEAST! We called them at 5:35 or so in the morning and pulled into TCH at 7am! Then the 'basic' pulls in the wrong way into the ambulance bay and the guy with me in the back tells him to pull out and re park - I tell them - it doesn't matter, lets just go in! So when we got there the hospital was GREAT! We had Kenya as our nurse who we have had before and she was so great with him. He stopped seizing on his own after lets say 2hrs or so - he never had any meds cause the guy never figured out the dosage! When they asked for vitals he said - Oh, I left them in the truck. He had written them on his glove and then when Miles puked he threw his gloves away!! He had put nothing down on paper - well on the back of the EKG read out he took some notes. I got the to call and complain. He was SO not ready to be out on his own! This is the first time I have had issues with HFD EMS - they were great the last time we had them. The lack of confidence on his part was astounding!

So, to conclude...Miles was observed for a bit, took a chest x-ray to make sure he didn't aspirate, and checked his trileptal levels. All was good - they said it was just a 'break through' seizure. So we are upping his meds again! He is at 4mls now and will go to 4.5 this week and up to 6mls next week. His pulse ox hovered around 90% without oxygen which is low for him but okay. His heart rate never came below 130 which is a bit high, he is usually about 117 or so. He is resting sweetly in my bed and we will follow up with our doc in 2 or 3 days.

I guess he won't be sleeping alone anymore! I would rather he puke on my head than drown in his own vomit!

overdue update...

man, I am bad at keeping this up to date...

Neurology definitley says epilepsy and they have upped Miles' dose of trileptal once again - from 1ml to 4ml since Christmas. He is doing well on it although he has had a few epidodes of puking from a deep sleep and then going right back to sleep and twitching. We are keeping an eye on this to make sure we don't need to increase it once again.

Cardiology said the seizures are not caused by his heart (yea!). However, the regurgitation in his pulmonary valve has gone from severe to worse and his fenestration isn't doing its job anymore so we are headed to the cath lab to close the hole. His surgery will be in July so we still have a while. His base pulse ox now is about 93% where it used to be 97% or higher. We are looking forward to having the hole closed. Strange right? looking forward to surgery? But it is pretty minor compared to some of the other options and what he has been through already. His conduit is slightly narrowed but not so much that they will need to do anything to it during the cath. Dr. Justino thinks the conduit will last another year - then we can stent it - then we won't need an open heart for a while! He thinks maybe 8yrs since his first one! That would be another 4 years! Sweet!

What else...Oh! Riley is a friggin GENIUS! He took the Stanford test and scored in the 99.9th percentile of ALL kindergarteners in the country...well all that take the Stanford. His average grade score is about 3rd grade! He won a reading comprehension deal at his school and will be going to the city competition in May. He also has passed all of his Accelerated Reader testing and will have his picture on the wall at school. This is a big deal because it is unheard of for a kindergartener to do this. Even first grade is a big deal. Guys - Riley is just so smart it is wild! The other day he was making this whine noise and I told him to stop. He said - but I like to make that noise. I again told him not to make it. He said - But it's my mouth. Oh man am I in for it with that additude :) (I welcome it freely! Bring it on mister!) I need to teach him not to be flippant to his mommy!

Tax Season is kicking my butt so I am off...

no post since thanksgiving?

What is wrong with me? Well, things have been freaking insane here to put it mildly :) Lets see...the abbreviated version or the super duper long version??

How about the highlights...

Me and the boys went to Kentucky for Christmas - which was awesome until Miles had a really bad seizure that lasted a little over an hour. He had to be in the hospital for 4 days. They had to intubate him after his airway collapsed from all the drugs they gave him to get the seizure to stop. Then they paralyzed him because he was still seizing and fighting the vent. Then we were flown by helicopter to the children's hospital in Louisville. We will see the neurologist in Houston on Jan 29th and Cardiology wants to see him on Feb 5th. During the seizure he was a deep blue color but breathing just fine - well, until the meds collapsed his airway - but until then he was breathing well. his hr went up over 200, pulse ox was barely 80% on 3liters of oxygen and his bp was super low (very scary!) The current super scary thought is that maybe his heart triggered the seizure. yikes!

I will have to post cool pics of the snow we saw!

We ended up flying home and leaving our car there and my mom is graciously driving it down here this weekend.

Also, me and my husband have decided to divorce. We have to file still but it is certainly going to happen. We are working together very amicably to do what is best for our kiddos. I think we actually will keep the house we rent and then rent an apartment. The kids will stay in the house and mom and dad will switch out when it is our week. Does that make sense? Pretty strange I know but it feels like a good way to keep it stable for the kids and to 'ease' into the divorce. It has been hard coming to this decision but it is what is best for everybody.

Other than that, we are great! (can you hear the sarcasm?) Really, we are okay. We are both looking forward to moving on and starting over. It is pretty strange how okay we both are with it but it is good.

Later everybody...I will try to not stay away so long next time!