recap of this week...

So lets see...My Dad was diagnosed with lung cancer on Monday. This is the second time he has had lung cancer and it is in the same lung as before. Fourth time to have cancer all together (skin, lung, bladder and lung again). They took out part of his lung last time so this time they are going to take out just a wedge of it. He had a stress test today and did well. Next is a scan of his brain. I talked to him today and he sounded good. I feel bad being this far away...

I don't think I have written about it yet but my oldest son was diagnosed with a blood disorder, von willebrand disease. Today we spent from 8am to 4:30pm at the cancer/hematology center at Texas Children's Hospital so that he could do the DDAVP challenge. This is a medication and today was to see if it works for him. He got his first ever IV. They took his blood, gave him the meds and then took his blood again 1, 3 and 5 hours after the meds were administered. We weren't just at the cancer center but in the infusion area. There were lots of different kinds of kids there. Some for chemo, some for sickle cell stuff (blood transfusions) and some for other stuff. The kids all seemed okay. There were lots of games, movies, crafts and even a dance group came for entertainment. The parents (myself included I am sure) all looked so tired and worn out. You could see sadness in their eyes. Alot of the parents were either just sitting staring off into space or like myself reading and dozing off from time to time. Riley's blood disorder is not severe and I probably have it as well as it is genetic. I know my kids have their health issues...both of them now...but I am grateful today. Grateful that things are the way they are and are not worse, ya know? It has been stressful lately with the heart cath and then the seizure 2 wks later, the VWD diagnosis for Riley and now with my dad having cancer again...and yes, stressful is an understatement...but I am grateful for what I do have.

Another piece today that has kept things in perspective...please pray for the Dereksen family...Tommy lost his fight with CHD last night (and boy did he fight!). He was such an amazing boy and he will be missed.

Today was better!

We went to the pediatrician today. His trileptal levels were at 9. They were at 3 for his last seizure in May and after they increased his meds his levels were at 16.9. So then I am led to ask - is this a metabolic issue? Seems like he metabolizes the trileptal okay for a little while then too quickly? And doesn't metabolize the ativan at all. His liver is enlarged a bit which is concerning. We are going to do a liver panel, CBC and trileptal level in a few weeks. She said she will check the liver panel that the TCH ER did. We talked about the neuro consult that came to the ER and sent us home - neither one of us are fans of hers. She said that if they had called her (which they should have, she was on call all weekend) she would have surely not let them send us home. She is going to talk to our neuro and see if there are other options besides the diastat or ativan in an emergency.

The EMTs said that the max they can give an adult of the diastat is 10mg - 5mg each dose. Miles' one dose is 7.5mg and we were told that if that doesn't work in 3 minutes then to dose him again - that is 15mg! She agrees with me that he is possibly allergic to it - he had a rash all over his face in seconds and then his breathing became labored and sounded like he was snoring/gurgleing. His bpm went WAY down.

Oh and get this - when we got to the ER yesterday his bp was 169/96 - not kidding! His blood sugar was 111 - is that okay? I know seizing can raise your blood sugar and cause you to spill keytones over into your urine so that number may be only because of the seizure.

We do have an appointment with the TCH Neurology only because of continuity of care...I don't know if I should stay with Memorial Hermann or go to TCH for this...

I have no idea where the TCH ER put my child! He has not been himself - not even close! He won't pee, eat or drink. He has been inconsolable all day, screaming, talking in a very high pitched voice all day long, unsteady on his feet, drunk, babbling, talking about things that don't make sense or aren't possible. Right now he is taking off his clothes and turning over the footstool saying he doesn't want the top on it. He says he is thirsty but wont drink...I am going back to the ER to find my boy! (that was last night...)

So...we came in and he put on a real show for the docs! We were admitted for observation. He did pee at the ER which was good but he hasn't gone since. Their concerns were that his kidney's were not working because even though he hadn't gone potty, his bladder was not full, they are questioning whether or not he can metabolize ativan (supposed to be a pretty short lived med) and they looked at possible continuing seizure activity. He hasn't even really begun his normal postictal behavior. I did get him to eat a bit just a few minutes ago. This morning he poured his syrup for his breakfast all over his tray, put his french toast into his cereal, poured his water all over his tray and put his butter in the syrup container...but ate nothing. It has been pretty clear that there is something wrong with the boy. Hopefully we can get sprung today.

AND - some terrible person broke into my car and stole the DVD player. (pardon my language) grrr! AND then I still had to pay for parking!

...vacation all I ever wanted, vacation have to get away...

yet another seizure...

Just got back from the hospital with Miles. He had a seizure last night and that bought us another ambulance trip. Gave him the diastat and that didn't work so we called 911. He had 2 doses of ativan and one of cerebrex (phenobarbital) before it stopped. They were going to admit him but he woke up so they sent us home. I have not slept and am exhausted! He is a funny drunk! He keeps saying - I love you guys! He is slurring his words and he keeps saying he wants to do the weirdest stuff. Off to sleep for me...