Well the latest

We have the date for the muscle and skin biopsy for Finnian its on the 9th of Feb the time of the procedure we will find out the night before. You know we will either get answers which would be great of be left hanging and not known what way to go next. We can only treat the symptoms as they show but if they are not related sometimes what you give for one thing will set 2 other things off. So finding the perfect balance is what we aim for our Finnian.

No changes on his meds yet we are going to be scheduled for an EEG admission but knowing Finnian he will be on his best behaviour and nothing will get captured.

We go to the GI doc on Monday and we will see what he thinks about the Nissen or see if he is game maybe to a J-Tube well we will see what he thinks on Monday.

Sorry but I am very tired have had a head ache for the better part of 2 days so I am going to go to bed.

Night everyone

Sunday seizures

Well he didn't have very many seizures on Sunday. Well we didn't have the episodes that we had on Friday and Saturday. He did how ever throw up 2 times so instead of giving him formula we switched him to diet ginger ale for his feeds. You know he hasn't thrown up like this since he was in the hospital in November so having a break form the pucking was a blessing he finally put some weight on.

Later on today we will be going to the neuro's office for his appointment and we will see what she has to say about the latest episodes and where we will go as far as his meds. I have a whole load of scripts to get for him so if she changes something its easy. We have to get these latest "episodes" straightened out as we don't want to add a heart condition to the list of his issues.

Will update later with the latest gossip on his appointment.

Sunday

Well today started out with me having to bounce Finnian down 4 flights of stairs as the lift was stuck on the 3rd floor. Thankfully it was easy as I had him squished in to his jogger buggy. Off to Mass we went as it was a Mass for our Finnian. Nanny has a Mass said for him every year for his birthday. Got home to discover that the lift was working again so didn't have to bounce him back up 4 flights. Got in and the door closed and up to the first floor working fine then at the first floor it got stuck again but we got it working so up we went. Got in and called the Mammy to let her know that the lift wasn't working too well so she offered to have Finnian's party at her house. At least her lift was working.

While they were gone to Costco's Finnian decided that he didn't want to keep his breakfast down and threw up all over the couch, his clothes and his pillow. So I am very happy that the party is over at Nanny's house otherwise the lick and promise cleaning I did on the couch wouldn't have been enough. Not to worry the covers will be in the washer tomorrow morning early. Oh how I love my Ikea couch that I can strip it naked and wash the covers.

Dinner was lovely we had ham, chicken, spuds, Irish peas and carrots. For afters we had a choice of apple pie, Sherry trifle ( yummy) and jelly. There was supposed to be green pie but don't know what happened to it as it didn't set. Finnian got really nice outfits for the summer. Lovely plaid shorts with matching tee shirts. Yup that stuff is out in the shops already. Other than having a few dirty nappies at Nanny's he was well behaved well other than kicking Nanny's slice of apple pie out of her hand all over her pants and on the rug while she was talking to him.

Friday and Saturday

Friday morning around 2am Finnian threw up in his sleep and then his heart rate went up pretty high but in about 5 minutes it was back down in normal high ranges. So that wasn't too bad but then later on about 12 noon his heart rate goes back up and you can see he is having seizures. We gave him some klonopin to see if that would calm the seizures down. It kinda did but around 2:30pm they were back in full force again so we gave him some diastat. After about 15 mins everything was back to more normal with him. So lesson learned on Friday when he starts have seizures and high heart rate the med of choice to give him is diastat.

Saturday started out pretty normal and Nanny took Eoghan and Maura to Irish classes and boy am I thankful Finnian had a repeat performance of Friday. I was not about to let it get our of control so I gave him diastat and in about 20 mins of giving it his heart rate had come back down to more normal ranges still on the higher end but nothing like what it had been. The seizures had also stopped. I guess its time to do a med adjustment we go on Monday to see the neuro and I know I am not increasing the keppra cause if we do I know we will see more seizures and he doesn't need that.

Finnian's Birthday

Maura had more fun building a snow man
Long walk back up the hill
I want a go
Not too happy here as I wouldn't let him have a go on the sled
Eoghan getting ready to go down the hill.

We had a lot of snow and the kids were off from school on Finnian's Birthday. He was in fine form and was even off the oxygen so we decided to go sledding. So we packed up all his bits and pieces rescue meds, O2 and those things he might need. So get everyone dressed and off we went. It was pretty crowded as all the schools were closed so I didn't think it would be too safe to send him down the hill on a sled . He got a bit peed off and kept telling me "go" and "more" so when I told him there was too many people on sleds he he might get hurt and I wasn't putting him on the sled he ignored me and every time I would talk to him he would turn his head the other way. On the way home we stopped and got him Happy Birthday balloons he wasn't too impressed with them. So over all it was a good day seizure wise and even better we didn't have to put him on O2.

Happy Birthday Finnian

Happy 6th Birthday Finnian.

My Dear little man its hard to believe that you are 6 years old. You have come along way and we have had many a bumpy road to get here. But we made it.

Love and hugs to you on this special day your 6th birthday Finny

Will he become dependent on it?

You know the biggest thing is you always wonder if by using something all the time is that you will be come dependent on it. Well we are at the place now with Finnian he seems to need to be on the oxygen more and more. I called the medical supply company to see if we could get a humidifier hooked up to his concentrator as his poor nose is so dry. They told me all I need is a script and it will be taken care of. I call the pulmo's office and the social worked called back and said she would take care of it so now we just have to wait and see when we will get it. Finnian's need for oxygen is not because of a lung issue but a brain issue. I know its hard to believe but your brain controls all of your bodies basic needs. So Finnian is having some problems in the area that controls his oxygen levels hence the need to give extra oxygen.

Another example of a bodies dependency is Finnian seems to need Klonopin. Now that was a drug I didn't want to use because of long term dependency. But we was put on it to get him over the hump of coming off another drug and it did seem to help his seizures. But now nearly 4 years later his body needs the drug and it doesn't seem to do a lot for his seizures. To prevent withdrawal symptoms which could cause a whole load of seizures we have left him on it. We had tried to increase the dose to help the seizures but it was causing side effects so we pulled back on it. He is on what they like to maintenance. We can use an extra dose of Klonopin when his seizures are acting up but the effect is short lived but usually stops the seizures.

So what is your crutch? Mine is coffee

Sunday, Sunday

At 12:01 am on Sunday morning I was questioning myself if I should wait or should I just pack a bag and go to the hospital. He was still out of it and needed to be on O2 just to clear 92% and it would keep dipping down in to the 80's. By 5am he was holding goos and his alarm wasn't going off so I felt comfortable enough to get some shut eye. Well that lasted for almost 1 hour. Then I was up again because he was beeping up a storm. Got him positioned good again and he was doing good but I couldn't go back to sleep. I went to Costco and did some shopping and when I came back I was so tired to be honest I felt like I would pop off at any minute. Finnian had seemed to be out of what ever was going on with him but still on some O2. I went and had a nap for 4 hours. I tell you I felt like a new person. Well when you only sleep about 6 hours in 3 days a 4 hour nap is a dream come true.

There is another storm coming in so we will see what will happen. We are going to the doc's on Wednesday and there will probably be a medication adjustment but we will wait and see. Finnian will be 6 years old on Thursday can you believe it?

Oh Saturday what a day

Got up and got everyone ready and out we went to Scoil Gailge( Irish language classes). Got the bus no argument today as I pushed him on (yeah). Finnian was on O2 as he had not been keeping his stats up on his own and the cold air will always make them drop. Thankfully he was on the O2 as he had another one of his "shout" seizures while the kids were in class.No panic it was a short one and he came out of it on his own. Then he decided to have another different seizure but again he came out on his own. Mind you this was in less than an hour 2 different seizures. Got the bus home came in and you kinda knew he wasn't really himself but got him all settled in his "man" chair next thing the alarm is going off on his pulse ox his heart rate is at 213 and his O2 is flashing 79 on 1.5 liters of O2. There he is face twisted, ghostly white and his limbs are like frozen then he started to arch and basically contort himself in all weird movements. I grabbed the phone and the diastat. Gave him the diastat and had the phone on the ready to call emergency services just in case he really crashed on me. At this stage I can see his O2 levels are coming up and finally his heart rate started to come down. He is ok but you can still tell that he is not really back to his normal self. He is still on 2 liters of O2 and still dropping down at times. Checked his temp and it was 99.1 and checked it again about 1/2 hour later and it was 97.4 and that was with out giving him any thing for his temp. He isn't really fighting the nasal cannula so in one way its good but that kinda tell you he is not himself. If need be I can give him another dose of diastat I just hope he snaps out of it cause I don't want to bring him to a germ infested ER. It looks like its going to be a long night

Seizures

We thought since he was on the mend from the ruptured ear drum that the seizures would lighten off but alas we were wrong. The other night he had 2 different types of seizures within an hour and then as the night turned to day he was having a lot of myoclonics and staring spells with lip smacking. Should I have given him a rescue medication to put a halt to the lot? I didn't because they were spread out enough through out the day that they didn't fall under rescue med need. Another reason is I am a bit leery of giving him rescue meds while he is on oxygen because they make his oxygen levels go down and we didn't need them to go down any lower.

Since the increase in Keppra we have seen an increase in his seizures and again we have the "shout" seizures. Coincidence? no its something I have noticed in the past but you know you are always hoping that its not true.

Well all the paper work is gone in for the skin and muscle biopsies so now we are just waiting for the date. The reason they are putting him forward for these now is to rule out a metabolic condition. You might be wondering why now? Well now since he has oxygen issues, heart rate issues they think maybe something in the metabolic area. May be it is but then again may be it isn't. I will wait for the results to see if anything popped up but you know I won't be counting down the days for the results as sometimes the ignorances of the not knowing is the best.

Saturday

Well Finnian finally went to sleep at about 3.30am this morning a bit earlier than yesterday. Got up and had to get the kids to their Irish classes. Eoghan didn't want to go but we changed his mind. When they came out I asked "well how was it?" "We had a great time" from both of them. Well at least that's a great start. Its not bad its an hour on a Saturday morning for 10 weeks. At least this way we will get up and out early and not be lolly gagging around the house. They have to pratice the words for next week. Its not that far from the house we just hop on the bus and it only takes about 15 mins. I just love wheeling Finnian on the bus and putting his 1/2 fare card in for him. Yup I bring my little lad on public transportation. THe drivers aren't too happy as they have to get up and hook the tie downs.

ENT follow up

Well we went back to the ENT for the follow up on Finnian's right ear. Last week we were shocked to find blood coming out of it. Well he checked it out and decided to clean the gunk out of it. Now I don't know if too many has had this done but first he put what looked like a crochet hook in and pulled out a lump of blood and gunk. Then he suctioned the ear out and finally he got the blown ear tube out. There was some granulation tissue holding the tube so the little hook thingy took care of that. Boy was Finnian mad but I cannot blame him. They kinda looked at us because I am the one to hold him down for everything and then when its all done his nurse Bonnie cuddles him. I know normally its the other way around but that's what works for us. His ear looks so much better and he is back to doing all his normal things. His hearing is great and that's how I want to keep it. He loves music and has his own favourites some find that hard to believe. He has his own Ipod with a wide variety of music on it. He will let you know what he likes as he will sign "more" like the song " I've got a feeling" by the Black Eyed Peas and "Raggle Taggle Gypsy","Heartland" by Celtic Thunder. But at the same time he will croon in his own way to " The Prayer" sung by Andrea Boccelli and Celine Dion. Its and unusual mix for and almost 6 year old but there is always music on in our house.

My Vampire

Well it seems that my little lad has his days and nights mixed up. He doesn't go to sleep until 3 or 4 am and well then sleeps all day. I cannot complain too much as I have been enjoying our special times together until the alarm wakes me up at 6:45am.

I do alot of reading at night oh yeah trashy novels and since I got my nook colour forget it I am reading constantly. I was glad the other night I was reading our lad had a seizure that required diastat. If I had been asleep I would have never heard him as it was a silent seizure but one that could have had....... but he is fine. We have been having low oxygen issues so he seems to have be hooked up to the O2 alot. Went out the other day with some oxygen and when he needed to be hooked up I couldn't crank the canister opened. Thankfully one of the guys in the corner paper shop was able to open it for me. So note to myself make sure you can open the canisters before I go out. Guess what we have another broken regulator thats the 3rd one so until we get the new one Finnian is housed hopefully we will get it tomorrow.

The snow is coming again so I would like to be able to take the kids out all of them to have some fun sledding.

Happy New Year Everyone

I have been a bit slow on the updating here. Christmas was lovely and the kids enjoyed the snow. Finnian had a blast on the sled and kept signing more and making his squeals of delight every time he fell off. Finnian's big Christmas prezzie will be here next week. He is getting a big boy recliner in chocolate brown. I just have to rearrange my living room to make room for it so we can have "Finnian's Place" in the room with all gear around him.

Seizures have been off the wall since the New Year came in. We had a bit of an emergency the other day he had blood coming out of his ear. Thankfully his ENT had office hours and saw us right away. He gave him ear drops and we have to go back next week to get it checked out again and we were give instructions if it started bleeding again we were to take him straight to the ER just in case it was more than a ruptured ear drum. He has started to have issues with his oxygen again so we are having to have him on O2 a bit more than normal.

The kids are back at school and we are getting back into our normal routine what ever that is. Had more snow here today the kids had an early day from school and they were hoping that the snow would stay so they could go sledding again but it didn't stay so no sledding tomorrow.