This is what his rash looks like

This was taken Sunday night His back

You can see it on his legs too

All the way down on his butt

Monday night on his face

Look at what his belly looks like now

Up close of his face

THis is what his back looks like now he is totally covered and RED

Well he has thrown us for a loop again

On Sunday I did the shopping and then decided to tackle the kids room back in to order again. So I was pretty busy going through the closet and checking out what can go and what needs to stay. Joe got dinner ready which meant just heating up the chicken and putting on some stove top stuffing and some rice.
Later that night when it was only Finnian and I up he decided to have a dirty nappy so when I went to change him I saw a rash on his belly.So I gave him a closer look over and it was from his head all down his back and belly in his diaper and on the top part of his legs. So marched in and woke Joe up and asked if he had seen the rash? He said he had but thought it was only from the very wet nappy Finnian had.
Well it got worse the rash so off to the doctor we went yesterday(Monday) and they aren't sure what it is. So they have done blood work, strep culture, so now its wait and see what shows up. The rash has now spread to his face and all the way down to his toes. So we will know on Wednesday morning what and if anything showed in his blood work. He also had 2 seizures in the doctors office that brought doctors and nurses running. The one was the silent "shout" and the arse fell out of his O2 but we had the o2 so we just hooked him up and then he had another one in which his heart rate took a small plunge and his O2 took a dive as well. So we left the doc's office as they know we are much more capable of looking after him than they are. So home we came and wouldn't you know the little fart had another silent "shout" and to look at him you would think he had a stroke but we know this one came form the left side of his brain as he wasn't moving the right side of his mouth. He would smile but only one side of his mouth moved. That paralysis was over in about 10mins so we hope it was just Todd's paralysis from the seizure. His O2 is still a bit off and we have to give his some oxygen from time to time to keep his stats up.
This morning his rash is much worse and nearly his whole face is covered. So roll on tomorrow morning until we can find out what you have.

Please Say A Prayer

Ryan Holman is in need of a few prayers right now. He got rushed into surgery. So please keep him and his family in your prayers

Thanksgiving

Thanksgiving was nice. It was Siobhan's turn to cook ( we take turns) so we had a table full of food and deserts. Maura was a bit under the weather even though she had been fine when we got there. She was tired and her head hurt so we just let her take a nap. Finnian had loads of dirty nappies but you know they were easier to clean up than if he was throwing up. Eoghan had fun playing Wii with Aidan and as usual he got to borrow one of Aidan's games.It was rainy and cool but still an nice day.
On our way home we passed by a Toys R Us and the parking lot was full and they had someone directing traffic around the store and that was like 9:30pm. Everyone was there to get the bargins.
Today was a lazy day for me and the kids Eoghan was the only one that got dressed as he went with Nanny to get the Irish papers and his Irish dinner. Maura still is a bit under the weather and now she said her throat hurts. I hope its not strep again because if it is she will be going to the ENT.
It depends on how Maura feels but we had planed on going to the Botanical Gardens to see the Christmas Train event. But you know there is always next weekend..

Tuesday

Well Finnian met his teacher last night and what a good boy he was. He counted for her well I should say with her as she said the numbers. He was really engaged with her.
Then today was an off morning for him. He woke up long enough to have his bath and then went back to sleep until about 1:30. When he woke up he was a bit jumpy and we watched him as he had not peed in a long time even though he had gotten fed while he was asleep. We were really watching him and we noticed that his twitches were getting closer together. So by the time they hit the 5 min mark we were figuring out what would be the best med to give him and how much. Finnian is a little weird as for different seizures we give him different meds and different amounts. So we ended up giving him 5 mg of diastat and we waited. Guess what he did? He finally peed and boy did he go the seizure had stopped. So he got all nice again and we moved him out to the living room as his teacher was coming again. So he was all set up and his nurse said keep an eye on him until I rinse off his toy. She wasn't even in the kitchen when his alarm went off. Yup his heart rate had dropped to 46. We got it back up and all his nurse said thank God we only gave him 5mgs of diastat. We just have to be careful with the amount of rescue meds we give him now as it does seem to affect his heart rate or was it something that would have happened even if we didn't give him the diastat. Well later on he had 3 more low dips in his heart rate and it was way after the 4 hour life of the diastat.
His teacher was impressed with him as she was asking him if F was for Finnian and there he was signing yes for her. She was so happy that he at least recognises some letters. She was trying to get him to do soft and hard but he wasn't getting it so I asked him which one is nice and he picked the soft one. He did this a few times so we started to ask him which one was soft and he was getting it so that is something I will have to work on as well as his letters.
Roll on tomorrow I hope we won't have to use rescue meds

He is home

Well he got his walking papers from the hospital today and its great to be home. I have to follow up with all of his doctors and hopefully they will all be on the same page.
They gave him an enema in the hospital well even though he can go 2-3 times a day he never seems to empty his pipes out they probably thought that was the reason he was throwing up. But I can tell you its not the reason we have in the past cleaned him out and he will still have issues. For a little boy on a controlled diet he sure does put alot of crap out.
There are times you feel that his seizures are triggering other things in him but the EEG takes time to prove it well I should say show what we mean.
Look at his low O2 rate and the low heart rate. They say that his seizures are not causing the issue but then when you go to the specialists and they cannot find or see what would cause the issues it gets written up as a neuro issue. But then neuro cannot see anything they will tell you go to see the doctors.
Seizures are a vicious cycle that can disrupt any body function but you need proof to prove it. That is what we don't have the brain waves to show that yes it does cause the disruptions.

He's back in the hospital

We took Finnian to the ER on Monday as he wasn't holding his O2 levels even on 2 liters of oxygen. When we got there they said he has autonomic dysfunction but they wanted him to be admitted as even in the ER they had to have him on oxygen. Got admitted under peds to the 6th floor which is neruo/cardiolgy. EEG hooked up halter moniter as well as respiration and another probe on his nose. He is still having some O2 destats but nothing like at home.
Last night he started vomitting and they have confirmed that 2 episodes he has seizures prior to him throwing up. So now GI is involved as well as pulmo and the sleep crew.
X-ray today didn't show any blockages in his digestive system so he is allowed back on tube feeds. They want him to have the nissian fundo done. They are wondering if his O2 destats are related to aspiration so he will probably have to have a PH probe put in to check that out again.
So finally we are getting answers.

School

Well ye all know that I ddin't send Finnian to school in September its a long story so I won't repeat it. But when we were in the hospital last month the movement Doc said Finnian should not be going to school so he signed all the papers so he could get a teacher to come to the house. About 2 weeks ago someone from the school district called and asked about Finnian and I just told her that one of his doctors said that due to what was happening to him he should not be going to school. I get a call on Friday evening its his teacher asking if she can come in on Monday to get Finnian all set up with home instruction. Wow.
Had to call Dr. H as we needed a new script on his Artane and she said "Has the School District gotten in touch with you? they called and asked why he was unable to go to school and she just told them one diagnoses and they said thats fine he will be getting home instruction.
Now we just have to get his therapies set up at home.

Oh what a Saturday

It seemed like when ever I went to do something today Finnian's alarm went off. So I had to go and check to see which one was going off. So we ended up using 2 M6 tanks of O2 so instead of cranking another one I just hooked him up to the the big boy. Finnian was doing great with the nasal cannual on he wasn't pulling it off it was like he now knows that he needs the extra O2.
At one stage today I hear the alarm going off and Maura chimes in " the bottom number is 50" my heart starts beating a mile a minute. I'm in the bathroom so I quickly take care of my nature call and run in to the room. Maura is in the bed with Finnian and she tells me "Mammy I just did what you do, I banged on his chest and his numbers came back up again". I was so proud of her she is only 7 years old and today she went above and beyond to help her little brother.

Student of the week

Our Maura is student of the week. So she gets to dress down on Friday at school. She is over the moon and is trying to decide what she will wear.

Well done Maura.

Roll on appointments

We are now just waiting for all of his appointments to happen. Right now its his cardiology and pulmo appointment that I wait for. The thing is we will probably get the all clear from both and we will be back as square one again. Something is causing his heart rate issues and his O2 issues and if its not anything structural then it has to be a neuro cause. Again yesterday he had scary dips in his heart rate and in his O2. One of them happened when he was kicking and having fun so you know his heart rate should have been on the high side but it dipped down to 54. I put my hand on his chest and you could feel the beat slow. I know I should have tried to get his blood pressure to see what that was but my first thing was to get his heart beating at a better rate.
Once I got his heart rate up I didn't even remember to take his blood pressure. A short while later his heart rate was good and his O2 fell. That was easier to get back up with a bit of oxygen.
I must get a better rolling cart for his equipment and supplies so when we move him from one room to another we just have to bring the cart with everything. May be some shelving near his bed for other supplies too.

I'm selfish?????????????

I know I have been called alot of things but selfish? That's a new one. All right I don't go very many places unless my side kick can go. But who wants to take on the responsiblility of a child that can crash as quick as you can snap your fingers. I have loads of people that will take Eoghan and Maura so thats not a problem but everyone is afraid of Finnian and to be honest there have been times he has scared the crap out of me so I understand when I get told no to Finnian.
I'm selfish because I leave the 3 kids with their Daddy while I go and do shopping on a Sunday well hello they are his kids too.
I'm selfish because on Saturday night I go to bed and leave my hubby up watching Finnian. Well hello I sleep about 2-3 hours a night during the week because I am up watching Finnian because I am so afraid I won't hear his alarm and I don't sleep during the day because I have too much to do.
Where we go and what we do all depends on how Finnian's day is going. That only happens on the weekends because during the week his nurse is here. So yeah sometimes on Saturdays we don't even leave the house.
So yeah may be I am selfish that I put Finnian's needs before everyone else. But you cannot judge me as you have not walked in my shoes. You are only an outsider looking in and you don't see the whole picture.

Epilepsy Conference

Well today we went to the 7th annual Epilepsy Awareness Day. It was funny when we walked in all I hear is "Finnian!!". The wonderful NP's from the Comprenshive Epilepsy Unit were there. We went in and I got a coffee and Finny got hooked up to his breakfast then the lectures started.
We saw Dr.A and she asked how our Fin man was doing so I told her that we were keping an eye on him and he was having quiet a few heart rates increases and scary decreases as well as O2 issues. She said she would like to get an EEG done on him but I will be able to take him home with it on. She wants to see how his brain is reacting to the changes. We have a cardiology appointment set up for him and we also see the pulmo. We just have to figure out these issues with him.
I am wrecked tired I guess I just have to train myself to sleep when the nurse is here during the day with him. Catching a few zzz's between 4 am and 6 am is just not cutting it. I also have a nap when Joe comes home from work which ranges from 1-2 hours. I am just so afraid I won't hear his alarm during the night so I just stay up until Joe gets up.
My other 2 kids are great and they will keep an eye on him for me when his alarm goes off the shout out the numbers. THey now know the numbers that are the "bad" numbers.
Oh well an extra hour of sleep tonight as the clocks go back.

Friday

Well I woke up this morning to Finnian's pulse ox beeping. His O2 was only at 74 so he got hooked up to oxygen. His heart rate was good he was sound out asleep. He only swatted at me a few times as I put the nasal cannual on. His O2 levels came back up so I was happy. There was no physical seizure involvment so we cannot even say it is a seizure. But then the question is What causes either his heart rate to go low or his O2 levels to go low? Since last week he has had the pulse ox on him at all times except when he is in the bath tub.
Had his ortho follow up today and he said that his pins in his hips and legs are ready to come out but due to the issues he is having now with his heart rate drops and O2 drops they can stay in for now. We have to go back in 4 mths and take it from there.
Hopefully we can figure all of this out I am getting very sleep deprived.

Books

Over the past number of years I have read many books to do with specific diagnoses that my Finnian has. Some times they can have your gut churning with details and then others skip over what things you really want to know more about.
But there are 2 books that I have found comfort in. Chicken Soup for the Soul Children with Special Needs ( Stories of Love and Understanding for Those Who Care for Children with Disabilities) and A Special Kind of Love (Focus on the Family For those who love children with Special Needs).
Its stories about children and their families on their own journey.

Halloween

The kids were mad to go out trick or treat so we finally went out around 4 pm. First stop was Nanny's house and then we hit Bainbridge Ave/204th St. We also got the kids picture taken in the photo shop. Every year the run a special $1.99 for a 4x6 but they always have a great background. Finnian was a big hit in his doctors gear. They got a good amount of candy. When they got home after stopping over at a neighbours party they sat down and went thought everything. They are already wondering what they will dress up as next year.