Rare Disease Day

Please Raise Your Hand and help

The Weekend

Well Friday was a crappy day with rain and Finnian basically slept the whole day. We were also watching him because he wasn't peeing. Even though he was getting plenty of fluids he still wasn't going. He was even told if he didn't go he would have to get the tube put in. Of course he was out cold when we were telling him that. He did finally go and honestly he could have floated the Arc for Noah. It was only when the rain stopped in the evening he woke up and he was in fine form. Saturday was a really nice day took the kids to Irish class and I decided to so a bit of walking while they were in class. Well I guess I am really out of shape but then again I walked on the toughest streets the ones with all the hills. Not really thinking that Finnys chair is like 40 lbs and he now weighs 40lbs so there I am first day walking and pushing him up and then pulling back on the way down man my legs and shoulders were sore. I took the easy route back on flat ground. Saturday night Joe stayed up with him so I got a good nights sleep. Sunday started out good he got his meds and his feed and he was singing along to his music when we heard the tell tale cough of course he started throwing up. He looked like a clown at one stage his face covered with his formula and then he decided to start singing along with one of his favourite voices. That was so typical Finnian finish throwing up and go back to what I was doing before it happened. He has been fine since. Lets see what tomorrow brings

Tests, tests and more tests

You know part of me wants to say "fuck everything" but then again part of me says "follow though and see". We have gone for more testing because some say its necessary that he has the nissen fundo done but after meeting with the Surgeon and talking at length with him its not something that is the most important thing to have done for Finnian if the tests show he is not refluxing enough for it to be done. Dr. Bob said that if Finnian's throwing up is a result of reflux then the nissen would be the right thing to do for him, but if his throwing up is neurological then its not going to work to stop him from throwing up. My gut tells me its neuro based his vomiting is not reflux so I cannot see putting him though something that is not going to benefit him.

I will live with doing all the laundry from him throwing up over putting him under anesthesia and doing a surgery that will not benefit him.

Wednesday

Well thankfully the kids are back at school today. Yesterday was really tough on me as I was nursing a bad headache. It didn't seem to matter what I took it was still there. THe kids were nit picking on each other all day and they were loud at times which really grated on my nerves all because of my head. At least I did the laundry now I just have to finish putting it away today. I guess maybe the lack of sleep is catching up with me or may be I am coming down with something I have been sneezing like crazy. I just thought it was allergies may be it is and may be its not I guess I will find out in a few days.

Later today Finnian will be going to see the surgeon and we will be finding out when he will be having his surgery on his tummy. They will be doing the nissen which will hopefull stop him from throwing up. We will probably have to wait to see which type of surgery, traditional or keyhole and we will have to see if they have to change the position of his g-tube site.

Finnian was beeping off and on all night with low O2 rates but of course every time I would get the nasal cannula out to put on him his numbers would would go back up. I guess playing tag all night really has not helped my poor noggin.

Will let you know what the surgeon says later today

Monday morning

Well its almost 5am on Monday morning and boy wonder is sucking back oxygen again. He did ok over the weekend no O2 but threw up a whole lot yesterday afternoon/evening. I was catching up on my beauty rest(haha). You know I was counting up the hours I have slept this past week from Sunday to Saturday and it was a whopping 23 hours. I guess the coffee and the milk duds keep me going. I made up for it yesterday I had 2 naps its sad to think I am 40 years old and I have naps on Sunday. Between the 2 I would say I slept probably 5-6 hours. Wow thats like 2 night normal sleep. I also got a little over a half an hour last night but the beeping of Finny's alarm got me up out of that one.

Maura just got up and she is so excited it snowed out. ******** snow again we got a small taste of spring 2 days last week and then on Saturday it was cold and we had wind gusts up to 50mph and ********snow flurries. No wonder Finnian is off the weather cannot make its mind up and it is really messing with his system. I just made her go back to bed its too early to be listening to her chatter now I am tired. I think I will bunk down with Finny and see if I can get 40 or 80 winks. If I could get 2 hours now I would be a really happy lady.

Wow what a beautiful day

Today was a really beautiful day. Nearly all the dirty snow is all gone. White snow is nice but when you see big dirty grey/black blobs sitting on the edge of the footpaths thats what you call dirty snow. It was so nice today I even broke out the capri pants. I know,I know I am crazy and its not even March yet. But the weather today was a nice treat from the freezing cold that we have been having. Tomorrow is supposed to be even nicer so we will more than likely go to the Botanical Gardens. We haven't been there in a while well not since the train show. The footpaths have been covered and getting Finnian there has been challenge. The kids are off from school for a few days so I will take them there tomorrow and hopefully they will be tired after their adventure there. I told Finnian's nurse to make sure she has her walking shoes on tomorrow as we are all going. I have a membership and I get a few free passes so we might as well enjoy it. Come to think I also have a load of parking passes that we never use its just as easy to walk there this way I don't have to make Joe take the train to work and then when we would come back having to drive around looking for parking what a nightmare. Its the joys of living in the Bronx.

Must do something about my cell phone the ringer doesn't always work well since it went through the washing machine it has been a bit dodgy. Oh well that's it

Tuesday

Not a lot to tell about Tuesday. Finnian had been throwing up until about 3 am and then it was like a you flicked a switch he was back to his normal self. Oxygen has been fine, heart rate in bloody fantastic numbers he isn't throwing up any more. He wants to listen to his music and sing.

I had to make a library run today for more trashy novels. I read when I am up with Finnian at night. I have a Nook colour but I have read a whole load of books on that but when I can go to the library and read for free I will. Its sad when you walk in to the library and the clerk at the counter tell you "We got in some more books that you like". I walked out with 9 books and I hope that will get me through the weekend otherwise I will have to make another run on Saturday. They are just small books like 130-160pages long so I can read one of them in about 2 hours so some nights I will read 2-3 books. I am a bit challenged with technology so I haven't figured out how to get the books from the library on my nook yet. You should have seen me trying to figure out itunes that was a laugh and a half.

Wednesday is supposed to be a nice day temperature wise so we will see.

Music

You know they say music is good for the soul. Some times when you come into my house you would need a pair or ear plugs because you would never know what kind of music you would hear. If Eoghan had his choice all you would hear is Bon Jovi, if Maura had her choice all you would hear is Justin Beiber, Mylie Cyrus, Miranda Cosgrove, Victora somebody and all the other teeny boppers, if Finnian had his choice Sarah Brightman, Andrea Boccelli and a few more would be only played. Now my choice depends on my mood you could hear anything from The Cranberries, Garth Brooks, Annie Lenox, The Pretenders, Reba to Rod Stewart. There is always music on to calm the body and mind.

We have found that through music Finnian is more receptive and expressive. He can tell you what he likes and dislikes. Its really nice to see when you tell him " this is your song Finny sing to me" and he will respond with a sound that will sound like he is singing along. Not bad for a child that is non verbal. We have found that if we play his music when the teacher is here he will do a lot of work with her. Its like in the hospital the other day he was crying and of course the first thing " maybe he needs some more pain meds" I just pulled out his ipod and tuned him in to his music and right away he calmed down. It was a bit too quiet there so I guess he just needed his music to make him happy.

So what's your choice in music?

We have discovered that not only is it the music but the voices he loves. How we know this is another artist was singing one of Finnian's favourites and he kept telling me no so I played it with the voice he knew with the song and I got a yes response. So to the wonderful voices that my Finnian loves please keep singing.

The little bugger nearly gave me a heart attack

Just around 5am this morning my little man Finnian nearly gave me a heart attack. He gotten over the seizure and the low oxygen and we were doing pretty good then all of a sudden the bloody alarm went off again so I look at it and of course it doesn't register at first what I was seeing. So I got up and went over and looked at the pulse ox again............................. the heart rate said 26 and it was going down. So of course I blink and look again his HR said 17 and then his O2 starts dropping. I just grabbed him by his hands and ankles and popped him right down on the floor and grabbed the finger pulse ox to make sure it wasn't the probe on the other one. Well it wasn't the finger pulse ox said his HR was 22 and his O2 was 67. So did 5 quick chest compressions and watched his HR climb back up 39, 43, 57,68 ok thats looking better then his O2 started to climb back up. He gets back up to better looking numbers then then it hits me I was bloody lucky that I was awake when that happened you know I don't even want to think about what if I was asleep and didn't hear the alarm.

I needed a good stiff drink so I went in to the kitchen and put the kettle on and made myself a cuppa of coffee and finished off the milk duds. He is still off and oxygen but he is looking much better than what he did just after 5 ish this morning. You know I went to 4 shops today looking for Milk Duds and no one has them. So I picked up a few roll of Rolo's then will do in a pinch but I prefer Mild Duds. May be I will pop the Rolo's in the freezer and pretend they are milk duds. Fingers crossed that tonight will not be a repeat of last night.

Beep,beep,beep,beep

Its 4:44 am on Sunday morning and every few minutes all you hear is beep,beebeep,beebeep from the pulse ox letting us know his O2 is low. He is on oxygen but sometimes it still goes low. I cannot turn it up with out a doctors order even though when we were in the ER in November the doctor told us we could crank it up to 5 liters. His reason is his mouth is open most of the time and the extra will just escape via his mouth. I guess we will just have to see maybe about getting the bipap or the c-pap back again. I will just call tomorrow and see about getting an appointment with the pulmo again.

He is having some slight seizures with physical involvment only God knows whats going on in his little head. If this keeps up we will just have to give him some resuce meds and hopefully stop those puppies. I hate to have to give him rescue meds we seem to be giving more and more. You see he is already at the max with most of his meds the one we can go up is not one I really like as we have to suction him like every 15mins so he won't aspirate on his own secreations. Right now he is on his side and his pillow is soaking wet from his drool. I just have to wait another 10 mins or so and I will just have to give him the diastat. Fingers crossed he won't crash on me. Will up date later and let you know what happened

Tube feeding awareness week

Its true I love a tubie. My son has had a feeding tube since October '07 and in many ways it has been a life saver. Before we got the tubie Finnian was sick all the time and we were shoving so many medications in to him. We had a running joke at the ped's office to schedule me for the following week with Finnian. More often than not we were there just because he was all caught in his chest. Took him to the pulmo doc and the one thing he wanted was a feeding tube. We were told that due to his aspiration he would have his lungs totally messed up. It was the one thing I didn't want to get done as it would be in a way I had failed. We got the surgery done and it was the best thing we have ever done for him. He is not sick like he used to be he has put weight on and he is growing like a weed. We have had only one bout of aspiration pneumonia since tube placement and that was caused by seizures. We are basically off all asthma meds and he doesn't seem to get colds like he used to either.

So yes I love my little tubie kid

Now we wait!!!!!!!!!!!

Well we walked down to the OR today just after 9am. I carried Finnian in and laid him on the table and waited while they gave him the smell gas to put him out once he was asleep I left and went to the waiting room to wait. Called home and told he was in the OR and I would update them when I heard more. Got back upstairs after grabbing a large coffee and a cranberry scone and next thing I knew Dr.A came out and said he was doing great and that she was finished with the Lumbar Puncture and Dr. F was now doing the biopsies. About 30mins later he came out and said everything had gone great and he had removed what they needed for testing. He went just below the scar he has on his left leg from the hip/femur surgery. The stitches will dissolve on their own and the steri strips should start to fall off in about 3 day but we are not to pull them off.

I had to sign 3 consent forms, one for the LP, one for the biopsies and one for the Amino Acid tests. So everything is signed and all the samples are done. Some results will be back today and more next week but the biopsies will take the longest and can take up to 8 weeks to get the full report. So now we wait but I am not holding my breath and walking on egg shell for the results. We will worry about that when the answers are in if we get some. Remember we live for today with Finnian and we don't think about tomorrow.

The best is we got to come home we were home about 1:40pm. I was happy as Finnian curled up in his "man chair" and had a great nap and he woke up in great form.

The only thing is I should have taken his wheelchair its a lot easier taking him on the bus as I can just wheel him on. We had the Maclaren SP buggy and boy did I get a work out hiking him up and down the subway stairs. You know I am not getting any younger and he is getting heavier. I was carrying at least 60lbs between Finnian, his buggy, his backpack with all of his crap, my pocket book and lets not forget the O2 canister. I didn't want to wait and hang out for Joe to finish work and I will not just hail a cab on the street and if I called for a cab it always takes a long time so we use public transport.

Got the call, well I got 2 calls

Got the call first form the doctors office letting me know that the biopsy and lumbar puncture is scheduled for 10.30am. So that's great all I am thinking I don't have to worry about getting anyone to take the other 2 to school. I would have time to drop them off and take Finnian.

Then I get a call from the surgical unit telling me I have to be there at 7am. Excuse me 7am for a 10.30 OR slot I don't think so. So I got told his OR slot is for 9am so I guess we got bumped up. It will depends on who the anesthesiologist is he will have the final say if we get to come home or not. Some like to keep him in over night just for observation. Yes I can understand their reason but knock on wood he has done fine in the past with anesthesia. Its the pain meds we have had issues with.

So right now Finnian is all done with his meds and feeds for the night and he cannot have anything else. So hopefully everything will go smooth and we will be able to come home but if not I am going with everything that we need. THe kids stuff is ready too for them it just means some one has to come over and pick up the bag for them.

I have to get my own

Yup I just have to, I hate that I have to keep skipping over songs just to find something I like to listen to. Oh sorry I mean I really need to get my own ipod. Right now I share with Finnian and its getting to the point now he likes to listen to his own type of music and his ipod is loaded with what he likes and some of what I like to listen to. You know I can only take so much Andrea Bocelli, Sarah Brightman and Michael Crawford. Now I don't mind what he likes but I just have to be in that mood you know to listen to them.

Its just when I stick headphones on I like something that is a little more up beat. Now mind you I have a very wide taste in music and you would never know what would come out of the speakers in the kitchen. Thats another thing that has to be replaced is the disc player in the kitchen its now starting to mess up the discs just like the last one. I hate when you go to play the disc and it skips half of the song or get stuck. I have ruined so many CD's and even a few of Finnians have scratches in them. The more music and pictures I put on my computer the next thing I will have to up grade that too. Oh wow soon everything will have to be up graded the next thing the hubby might what to upgrade to a newer model wife if I don't stop complaining.

Saturday

Well today started out fine the usual Saturday morning panic getting ready and out the door. Of course we missed the bus nothing new there. Got to Scoil Gailge just 5 mins late not too bad. Today I was the helper for the small ones and it was fun. Finnian was sitting in his chair and just taking it all in and you know it was good for him. Got home and got everyone settled for the afternoon. Finnian was chillin on the couch and then the next thing ........... yup he threw up all over the couch, his pillow, himself and it even got the rug on the floor. All I can say thankfully he was on his belly because if he had been on his back he would have aspirated and that would have been a whole other story. He was mad enough when I went to clean his face off he would have gone totally ape if I had to suction him. He is still a bit off and the dirty nappies lets put it this way no matter where you are in the house when he goes you can smell him. Yup its that bad, Maurs is going around spraying air freshner and you know if you spray too much of that it smells bad too.

I feel great I had a nap its my night to have a good night sleep but the nap has really up skittled that. Joe is on duty tonight and watch Finnian will the best little man for his Daddy it never fails.

Whats new today

Well the sun came out and melted some of the snow and ice away just in time for the next storm that is supposed to come in over the weekend. They are also saying that there will be another storm sometime during the week. Watch it will probably dump on Wednesday never fails when we have something to do with Finnian.

I know some are asking why at this stage are we going through with a muscle biopsy we should be just happy with the way he is. Well we are happy with him and love him for who he is but like anyone he is entitled to the best quality of life. We might get answers and then again we might not. Some think that not knowing is better well that might be but if taking a pill or a shot will halt the progression of what he has then I am all for it.

You know he isn't "poor Finnian" the child with this,that and the other. He is Finnian the child brings smiles to our faces and makes his Mammy proud when he accomplishes the simplest of tasks. He is the child that from before he was born had baffled doctors with things he can do because he shouldn't be able to do them. He's the child that dislodged a breathing tube while he was supposed to be sedated and he got rolled out of ICU with out a trachea when they said it was the only way he would ever go home was with one.

You know its not easy when you know that your child might go to bed and not wake up, he might crash with seizures and everything I or the doctors do might not be enough but the best thing about our Finnian is he is the most lovable, interesting, smarter than we give him credit for and most of all he is My Son.

Measles outbreak on Long Island

Back in November when Finnian came out in the rash they all looked at me like I was crazy when I asked in the peds office that they check him for measles. Well he didn't have measles but like any childhood disease just because he got all of his shots it doesn't stop him from getting the disease especially if he came in contact with some one with the virus. He might just get a mild form of it. I know as a child we got all of our shots and it didn't stop us from getting the measles, German measles, mumps, chicken pox.

There is now a confirmed case of Measles on Long Island. The child had travelled outside of the USA with the parents. The age of the child is between 9-12 mths which would make them too young to get the MMR vaccine.

Getting your child/children vaccinated is important but there are some cases when the shots are delayed because of medical reasons and sometimes a personal choice of parents not to get the children vaccinated. It is your choice for your child.

Yearly check up at the Ped's office

Finnian had his yearly check up to day at the ped's office. The only thing they did was draw bloods and give him his PPD test. He is up to date on all of his shots and he doesn't have to get anymore boosters until he is 10 other than getting the flu shot every year. The best is he has put on weight for the last 4 years Finnian has problems putting weight on and keeping it on. He now weighs 39.8lbs well done Finny.

Next week the boys have to go to the GI doctor. Finnian might be having the Nissen Fundoplication surgery done this will hopefully prevent him from aspirating his tummy content when he throws up. In some cases the child will not be able to throw up anything from the tummy. Another item was may be him getting a j-tube. Its the same idea of a g-tube but it goes into the jejunum which is the second part of the small bowels. This would mean that the food would be delivered directly to his intestines and not have to sit in his tummy and would prevent the throwing up business. So we have much to discuss with the GI on Monday. On Wednesday Finnian will have his biopsy so next week is going to be busy.