Still at MMC

So Noah is still at MMC. He has spells where he is back to looking better and times where he still is miserable... He still is very junky in the lungs and still requires some oxegyen... They did another chest xray this morning and thought that the chest xray looked very similiar if not a little better than the one taken on Friday evening. So that was good news. They think that he probally has some viral infection and it just agrivates his airways, or they think he might have aspirated his ssecretions.
The neurologist while we were here decided to lower the dose of his clonazapam siezure med to try to help to make him more alert and see if this helps him be more aware of secretions. This is basically the reason we are here tonight...they want to make sure this change doesnt have an effect on his siezure control.

They feel that I have the equipment at home to care for him and the knowledge to know when things get to much and he needs to return to the hospital. So they doctor stated that he doesnt have to be "perfect health" to return home like some of the other children have to be. Mommy does a good job at home caring for Noah the doctor stated this morning during rounds....we are very well known on the floor. During the day Noah has nurses who are just passing by and see him back here and they stop to say Hi and find out why he is here... he is a popular boy.

Well keep your fingers crossed for tomorrow. Hopefully after the events we can go home tomorrow. Noah has the opportunity to be included in having Mrs Barbara Bush read a story to all the children tomorrow morning & then afterwards the Portland Sea Dogs are coming for a visit..... Then hopefull we will be in the car headed home...

Back to MMC

Its amazing how quickly Noah can change from being 100% healthy and happy to VERY VERY Sick.... Monday thru Thursday were the best days I have had with Noah in months... He was happy and smiling and babbling up a storm. Thursday night he went to bed the healthiest little boy Ive seen in months, and Friday morning woke up Congested and very fussy. Took him to the Dr's around 2:15 and he was diagnosed with left ear infection and right lung pneumonia. Sent home on antibiotics and xophenex Neb.... Got home around 4pm with daddy and he retched and his fevers skyrocketed. By 7pm he was at 103.8 and his heart rate was over 200. I had put him on O2 by this point and had him up to 5 liters and his O2 stats were then only registering 78%-87%. A call to 911 was needed. Took him to MMC were he was rushed to critical care and was put in the PICU. Pneumonia xray didn't look horrible but thought he may have aspirated his saliva. Did a spinal tap to look for Meningitis but that came back normal...Came very close to putting a breathing tube in but didnt have to it was a very stressful evening.

Tonight things are looking up a little...he has spells of wakefulness where he is his playful self. They did an EEG today and it still looked great. Which was good to hear.....We are still in the Pediatric ICU tonight but are in hopes they might move him upstairs tomorrow. We will wait and see. He is still having high amounts of congestion and wheezing spells. Poor little man!
They did a course of an antibiotic through 2 shots into the leg last night! :( because they had no luck with an IV. and tonight this will be repeated again tonight....I sure hope he feels better soon. I feel so helpless sometimes...

So much improved!

So it began last week with Noah being put on O2 Sunday night by the nurse. I took him to the doctors tuesday because I couldnt get him off the O2 and there was really no respitory reason for his need for O2.So I took Noah to MMC ER Wednesday morning because I felt that things needed to be looked at... he was sleeping most of his days and I had actually gone to bed in tears Tuesday night because I just didnt know what to think or do anymore with his siezures.... So wednesday I called the doctors office to get him in for an Emergency EEG...they could not get him into the office until Tuesday and I was not waiting for Tuesday so we took him to the ER. They did an EEG in the ER and Noah was having continuous siezures again.... Admitted they hooked him up to a 24 hr EEG and monitored him when given meds to stop the cycle... Things didnt improve with a snap of the fingers... I again was threatened that if the siezures didnt stop the next step was ICU and intubation. Let me just tell you I really hate this threat it really eats away at you until he is in the clear...I had alot of butterflies in my tummy and did alot of praying to keep him from this step... We started a new drug treatment called Clobazam on Friday. We can only get this drug from Canada and insurance doesnt cover it but I am willing to try it. It beats the other option of giving him a drug "that could mess with bone marrow and could be fatal...it hasnt happened yet in children but in some adult cases....Im all set...Things were not looking good until Saturday late afternoon. Up until Saturday afternoon he was still sleeping alot and siezuring off and on... He had the doctors and nurses all scratching there heads because he would be at 100% when on just a 1/4 liter of O2 but when he came off the O2 his stats would plummet into the low 80's high 70's..... Then Saturday came and daddy took him off O2... he was alert and talking and voila! he never went back on O2.... By sunday I hadnt seen a siezure in 2 days and he was talking and smiling and I have not seen him this good since December....
Its crazy how fast he can come down with something but even crazier that he can turn around for the better so quickly too. I had the neurologist on call in the room Saturday morning because he was sleeping all morning long and then he woke up and was 100% better and we had done no changes... he just amazes me....

Now he is so SO SO SO much better...It makes me so happy to see him this way. Its been so tough these past few months..I was unsure if we were ever gonna get him back to this state ever again... I was worried we were not and here we are now and I am so happy. I feel like a wieght has been lifted off my shoulders. He went to preschool yesterday and the teachers were all so excited he stayed awake and was vocal throughout all of school except 10 minutes or so... That is a HUGE improvement. I hope it stays this way for a while.

We have got an okay from Alfred Parish Church to do another Fundraiser Dinner for Noah. We have scheduled it for July 23rd 2011. Still have lots of planning to do on my part but I know I have family and friends support and help to make it successful like last time. And God knows we need it expecially now that we will be using it to pay for this new "miracle" med!!!!

I will try to keep you posted....life is super busy right now... with Noahs preschool schedule in which I still need to bring him because Nursing cannot seem to be set up and transportation is another fight....uhh...it really is frustrating...and Marissa is playing Softball again this year. She does really great with it too but the schedule for that is crazy as well....I have such a wonderful family and I can truthfully say that my life is full of adventures everyday!!! I love it!

Epilepsy Walk 2011

We will be participating in the Saco Maine 4th Annual Epilepsy Walk this year! We again have a Team Noah!!! This is a very important cause to our family. Noah struggles with siezures on a daily basis. Its a scary and stressful condition for those who suffer and the loved ones that care for those that struggle. There are a lot of days that I feel helpless for my son when we are struggling with siezures and this is one reason why this cause means so much to me-- it makes me feel like I can be helpful to my son and all of those struggling with siezures.... hopefully with the help of these walks and the funds raised they will find a cure to help with this condition!
Please help by sponsoring me and my family. Click on the link below and it will bring you to my page.... and if anyone would like to register to walk with us and be a part of our team we would love to have you.

Sunshine through the Clouds!

Well...Noah seems to be on the road to health again! We went yesterday for a follow-up since the phemonia and the doctor was happy with his progress... His lungs are clear again and he has no ear infection. Has some back molars coming in, this the reason why he is chewing on his poor fingers so much! But healthy and happy.

We also had a neurology appt yesterday and the doctor wants to try Noah on Keppra one last time. We were on this med a little while ago but at a much higher dose and I took him off from it because he was sleeping all the time. This time its at a much smaller dose and we are going to see if this helps with the siezures that we are still facing on a daily basis. He also increased his Adivan dosage for his emergency meds. And we went over the plan in place for siezures lasting longer that 3 minutes and the difference in meds and siezures we use which med for. Much more comfortable now and understand what Im doing now. Phew!

Noah went back to Preschool Monday with the nurse and my mom. The report I recieved when he returned home to me was very promising. He still had some sleepy times but the teachers were impressed with how well he did. He even did some babbling to the teachers that they werent getting before. I think that the diet ratio change has helped. He seems more happy and more alert! We have a nurse taking him to school now. She is working for one more week and then the nursing company says that they have another more permanent nurse all lined up. Now its a fight getting the transportation but we are working on this also. Right now my mom or myself has to transport the nurse and Noah to preschool and then we are still stuck in scarborough for 3 hrs but at least we can go off and do things now if we want too!

Well...I think this is it for now! He is doing much better! We did get word that we are going to be able to use the Alfred Parish Churchs facility again for another fundraiser for Noah. Which is exciting. Now we are in the process of picking out a few dates and soon we will be in the BIG planning process!

We all had a very nice Easter! Noah had a small easter egg hunt while the girls did there easter Egg hunt. Mom and dad came home from Florida in time to spend Easter Dinner with us. And my brother spent the day with us. It was very nice!

Noahs birthday party is this weekend and we are praying for nice weather and a good turnout like last year!

Smiles and Rasberries

Well..... I can officially tell you that Noah came off the O2 this morning. Keeping his stats above 90's and blowing rasberries and smiling like his usual personality. He seems to be feeling much better and its so good to see.
Saturday I had a voice mail from Boston's Children Hospital and Noah's lab results FINALLY found its way to them and they were okay with me lowering the ratio to his diet. With mixed emotions I found the old recipe and made his formula for the day.Mixed emotions because with the process of tapering down the ratio this could mean one of two things. Either 1.)Noah like we are hoping just needs a lower ratio and his siezure control will get better--- occasionally happens on the diet but is extremely rare.....which kinda makes it more apt to be true in Noah's case :) or 2.) the diet isnt going to help and we are back at the drawing board on how to control Noah's siezures....which leaves playing around to find the right drug remedy or possible surgery....either option a real stressful situation. Well..... we changed the diet Saturday and I can already see a difference. I cannot tell you if in fact it has to do with the diet ratio change 100% or if he just is feeling better. I really feel that its a combination of both. He is doing much better siezure wise...Yesterday I only remember seeing maybe 3 at the most....and he was having SO SO many a day. I hope this diet is our answer, I havent given up yet! He has so much more personality these past few days and I really think it has a lot to do with the diet change. Even before the change when he started feeling better I didnt see this much personality. I havent seen this "Noah" in a long time it seems like. Maybe our prayers are being answered.
It was so cute yesterday I had him chillin in his crib downstairs while I did some work on the computer. He has a Rock n Roll Elmo in his crib that I frequently turn on for him when he is in there. I turned it on for him a couple of times before sitting down at the computer. I had put Elmo next to Noah in the crib before I left! While sitting at the computer Elmo went on!!! NOAH HAD TURNED HIM ON ALL BY HIMSELF!!!! He did it three times, it was very exciting....I tried to video tape him accomplishing this but he would not preform for the camera...I was excited all the same!!!

Lots of things to start planning for that are coming up..... We have Noah's 4th birthday Party coming right up. I cannot believe my little boy is going to be 4!!! Already!!! Time flies by way to fast. We are doing an Elmo themed birthday and Im striving to make alot of his decorations for the party. Ive been really working on them the past couple of days.

The Epilepsy Walk is coming up. Im beginning to ask for donations for that. It is May 16th this year and for the 4th year in a row we are going to have a "Team Noah." This is a VERY important walk and event for us. Noah and the Family deals with Epilepsy on a daily basis. Its a very hard disease to go through and very stressful. Our participation helps to show others they are not alone and with the money raised it helps to get more researched accomplished to figure out new treatments, etc.

Im also in the very beginning stages of planning another benefit dinner for Noah. We are getting low on our funding with all the trips back and forth to boston, etc. We are in the process of needing to get some equipment for Noah that his insurance will not help us get. He needs another Special Car Seat so that he can go to and from to Preschool safely. Our car seat is so heavy and the safety restrains would make it very hard to take in and out of the van on a daily basis for school. Insurance covered the first one and will not cover another. We are also looking into getting Noah some supportive seating for in the house. Right now he uses his old carseat for a seat while in the house. And while it seems to work great for him, it doesnt give his back and hips the support needed. We have a adaptive stroller that works great for him that the insurance covered. However our house is much to smaill for the stroller to fit through the tight hallways, etc. So this is another area we need the finances for. Right now Im in the process of finding out if we can do the supper in the same location as last time...and as soon as I get the green light there I will begin reaching out to a team of family and friends to help with other details!!!

But good news being brought to everyone today. Noah is feeling better again!!!! He is off O2 while he is awake...still needing some O2 while asleep... He is more himself..... smiling and happy....and less siezures!!!
Hopefully we are traveling on a foward "happy" path for a while now!!!!

Two Steps Foward....three steps back!

GRAMPA HERE IS YOUR BLOG!!!!! LOL!!!!!

So not good news to start out with. Noah was brought by ambulance to MMC again this last Sunday. He had temps of 103.8 with tylenol and heart rates over 200. Chest xray revealed phemonia again. This time it was present throughout the lungs. Doctors feel that Noah probally developed a head cold and couldnt control the congestion and it developed into a phemonia. He was admitted over night for observation and given an antibiotic shot. We came home last night. He is doing somewhat better. His temp has gone down to between 99.4-99.8. He is on 3 liters of oxegyen and likes to play the game "if I pull this out how low will my stats drop on mommy" with me. Im not overly impressed. LOL! He is getting nebulizer treatments every 4-6 hrs round the clock.

His siezures are all over the place but its to be expected. Although before getting sick they really were not all that great anyway. We still have to find the happy medium between diet ratio and meds. I should be getting a call tomorrow from Boston. Talked over with the nurse about tappering him down on the diet ratio tonight and she is checking with the doctor tomorrow morning. His diet is causing him to metabolize his depekote to quickly and this med seems to be the med that helps us the most. When he was at a lower ratio on the diet he seemed to have better siezure control.

We are also in the process of getting a drug from Canada called Clobazam. Its a long process because it comes from Canada and I feel I would like to play around with the diet a little more before going more on the drug route but we are in the process to at least get it into our possesion if the diet plan doesnt seem helpful.

Right now its lots of undivided observation, lots of suctioning secretions, lots of placing the oxegyen back into Noah's nose- because he hates it there, and lots of cuddling and loving & of course stressing!

But at least he is home and for the most part comfortable!

I will try harder to keep everyone updated more often! Ok Grampa Im sure everyone is happy that you keep me on my toes about blogging! Luv you all! Thanks for supporting us! He is loved by many and expecially by his big family...I luv this photo of grammy and grampa giving him "luvs" in the hospital in Feb 2011!