Alarms beeping.........

This morning at 5:03am Finnian's alarm went off. I hadn't even gone to bed I was in the bathroom so I ran and when I got in to the room Joe was trying to get the O2 hooked up on Finnian. Joe was in a bit of a panic as he could see Finny's O2 drop lower and lower and his heart rate go up,up. So as usual I snapped "move I'll do it" then my own heart did a flip as I looked at the pulse ox O2 was only 62 and going down so I cranked on the oxygen and had to put it to 4 liters just to get him up in to the high 80's. Normally 2-3 liters work on him but he was in a seizure. So between watching his machine and the time then second guessing should I have given him diastat right away. But at the 5 minute mark his seizure stopped and everything went back to normal so I started to wean him off the 4 liters of O2.

He is still not himself and he was lip smacking, rubbing his nose and gagging like he was going to throw up we gave him a diastat. He is just lying there now not even able to suck his thumb we even have tried to get him to suck a soother but he cannot. He is just so wiped out seizures SUCK, SUCK, SUCK big time. We all wish it was as easy as "take these pills and don't worry". We are shoving so much into him to give him his normal and its not enough. It just breaks my heart to see him loose functions as simple as sucking his thumb. If he looses that what else has he lost ability to do?????? I don't even want to think about it right now I just want my Finny to get over this hump hopefully at home

Can I get it undone?????????

6 weeks ago Finnian had the nissen fundo done and also had a hernia repaired. Well guess what? he is starting to throw up again. I am so pissed its not fair that he has to go through this crap. At least before when he would puke it would just come flying out of his mouth and nose and it would be over and done with. Now....... we watch him gag and heave, his heart rate goes through the roof and his O2 drops. you should see his poor tummy every muscle pops and you can see the ripples/waves as he tries his best to get the crap out. Yes I do vent his g-tube when he is throwing up but all we usually get out is air sometime his gastric juice's will come out but not always.

So now I feel like taking him back to the surgeon and having him undo the nissen fundo on his tummy so he can go back to throwing up the old way. My only fear now is he seems to gagging and heaving much more strongly now than before I hope he doesn't undo the hernia repair.

I just feel so helpless

Packing

Eoghan came out at like 7am this morning with 2 shirts on hangers and presented them to me. I want to take these with me. OK . So I sent him in to try on his jeans. He has grown a bit and also put some weight on so out of the 5 pairs of jeans he had only one that fits. Well guess what I am not going shopping for jeans the one pair will just have to do him along with the 2 pairs of wind pants. I know the weather is cooler in Ireland but anything is better than the last few days we have had. So he said he will be fine with his shorts and a sweatshirt if its cool.

Next thing he comes out with his socks and boxers and says "here's more to put in my case". He is so excited and every now and again he is asking "should I bring this with me?" I guess if I let him he would bring everything he has with him. I keep telling him "look they have washing machines in Ireland you don't have to take everything you have with you cause I know some of it you will never wear". You know we all do it when we pack we pack extra's that never leave the case. I don't want to over pack because he is the one that will be hauling the suitcase around.

Oh well I better get back to packing. You should see Maurs just came out with 2 shirts saying "you know he has to bring these with him" Yup she has his Galway jersey and his Mayo jersey in her hands.

Tuesday update

Well I started out the day by doing laundry,laundry, laundry and more laundry. That will teach me to do it more than once a week. Yeah right until next week I will be saying the same thing.

Finnian's PT was in today and he was working with him and asked did they change any of him meds? Why? we asked " His tone is different he is not as tight" They increased his Dystonia meds and while we have only gone up 1mg he could see the difference. I have seen a change in his hand movements and he isn't sticking his foot out to trip people either. The PT also go him to sit up on his own for over 30 seconds. Now to most that might not sound like a huge time but if you saw our Finnian last week as soon as you would sit him up he would arch and tip himself backwards. So 30 pulse seconds is huge for him.

Eoghan is getting on really good at summer school. He did very well on his tests with fractions. He even go 100 on one test. He now is so excited about going to Ireland with my Mom on Sunday. He was even saying to her today. Monday we won't have to worry about the heat cause we will be in Ireland. It will be his first trip with out me going with him but he is in great hands he is with Nanny.

Hopefully the last Doctors appointment for a while

Well we finished our marathon of doctors appointments today. Hopefully Finnian will behave himself and we can avoid doctors for at least 2-3 weeks.Well wishful thinking anyway. So we went back to see his neuro to touch base on what had been going on with all the appointments. Well his seizures have been running on a kinda normal schedule of little ones and big ones. The one thing everyone questions is his drop in O2 and his high and low heart rates. Well the doctor is now thinking that may be he is having seizures from deep in his brain that is affection his heart rate and O2 function. The bummer about these is they don't show up on an EEG as they never seem to make it to the brain surface where the EEG electrodes would pick them up. We cannot relate them to medications as we were not monitering him 24/7. Now we are but we cannot wean him off meds just to find out if its a medication that is doing it. We used to only moniter him with the pulse ox during a bad seizure.

We go back to the neuro 2 weeks after we get the VNS put in so they can turn it on. Hopefully we don't have any emergencies until then.

Finally an update

You know we have had a lot going on with Finnian well we had basically a week of appointments for him. Eoghan also had a big appointment as well. So I will just start with Finny. On the 8th we went to see the doctor about the VNS for him. He is a good candidate for the surgery and it basically came down to "did we want him to go for it". Well you know it is a surgery but if it will help his seizures and his quality of life we are going for it. Don't have the date yet but it will be in the next few weeks. Tuesday we went to the ENT and he said he looked good but to watch his right ear and if he started showing signs of having an ear infection to just start back on the drops and come back in a few months. Well on Wednesday morning there was blood pouring out of his left ear yup his ear drum popped. We had to take Finny down to the hospital for an MRI so I explained the ear drum problem cause I wasn't sure if they would do the MRI but they did and when it was all over we went back to see the ENT and he couldn't believe that his left ear drum had popped so the next time Finny is having anything done under anesthesia he is going to put a new tube in his right ear as he doesn't want him popping another ear drum. Thursday we went to the school district for Finnian's IEP what a mess they are basically starting from scratch again this year since his kindergarten year was totally messed up as there were papers missing from his file important ones that with out them there was basically nothing we could do so he didn't go to kindergarten. We have to go back for another meeting to see what is going to happen well at least if they say he has to go to school I hope they put him into an English speaking class cause we aren't bilingual they way they think we are. Friday we went to see the movement disorder doctor for Finnian and at the same time Eoghan was having his GI scope with biopsy done to check out his autoimmune disorder. Well since I couldn't split myself Nanny came to the rescue and stayed with Eoghan so I could go to Finny's appointment. Well we know his Dystonia has gotten worse and knew his meds for it would have to be increased so it was a new doctor we saw and she gave him a good check up and agreed that his meds needed to be tweaked. So we came away with a new script for his meds and another appointment in October.

Eoghan did good but because of his weight and height he is now getting adult doses of anesthesia so he wasn't feeling the best as he was tired and his tummy was a bit upset.

Monday we have another appointment for Finnian and then hopefully we will get a break for a few weeks. Its just a follow up appointment with the Neuro to touch base after all the important ones we just had. Hopefully the MRI report will be there if not I guess we will have to go back.

Eoghan will be finished with Summer school on Friday he is doing really well he has a 91% average in his math in summer school. Then on Sunday he gets on a plane to Ireland. He is getting so excited about his trip with Nanny.

Happy 4th of July

Well I went and did the 10k. Oh boy was it tough. It was a cross country trail. So you can just imagine mucky, slippy track. Oh boy were the worms out at one stage the ground was moving with all the worms. But so sorry by the time I passed there were a few less wriggling. The first few uphills were ok but there was part of the route all I was thinking not another ********* hill. I was never so glad to see the flat stretch to the finish line. My time all considerate was not too bad for my first cross country 10k was 2 hours and 1 min. There is a huge difference between pavement pounding and cross country trail. I am tired and my knee and ankle are letting me know that I did push my self. Once I put my clogs on the ankle was feeling better but I will have to figure out how to tape my knee cap. The taping on my ankle worked great so I will have to invest in more rock tape.

We went to City Island for a late lunch early dinner and everyone came back with some colour on them including Finnian. Johnny's Reef is a great place to go to eat. Maura loved the fried clams and yes she is my picky eater.

When we got back Joe decided to take the kids to the park as the new playground is opened. Finny and myself stayed at home which turned out good as he had a tonic seizure his heart rate went over 200 and his O2 dropped down to 79 and he screamed the whole time he was having it. You know 1 and 1/2 mins seems like forever when he is screaming and it stopped like the plug got pulled. Then after he was scrubbing his poor little nose and was a bit out of it for another minute or so. We both had a nap I am still a bit stiff but if all goes well I will do the next 10k on Labor Day at least I will know what I am in for.

The latest gossip from us

Well on Saturday I took the kids to the beach all by myself. Eoghan and Maura had a blast and spent most of the time in the water. Finnian spent his time in his jogger under the beach brolly. He did end up on O2 but otherwise he was in fine form. I got major colour I guess I should have been a bit better at putting the sun screen on me.

Sunday was a not so nice day. It started out with thunder and rain in the morning and the rain kinda lingered on through out the day. I did see a few small seizures from our little lad but nothing that required rescue meds.

Later today I am going to be doing a 10k. My goal is to walk it in 1 hour 30 mins. No I do not run or jog I just walk. Well lets put it like this I have to lose a few more pounds before I would attempt to run a 10k and there is no way I would jog I can walk faster than jog. Will be very honest with my time. Let you know later how I do.