Happy & Healthy

So Noah is doing GREAT these last couple of weeks. We are now off from O2 and he is talking and smiling more and more. I love to see him this way. I think this new siezure drug is working wonderful. (knock on wood) I havent seen very many siezures since starting it....maybe one of his bigger siezures and one or two "smaller siezures." I love it. Life seems so much more relaxing when he isnt siezing all the time.
He is on a month break from school. Starts back up July 6th. Its been nice not to have to drive back and forth to Scarborough these past couple of weeks. But I will continue to do so if the state cant seem to get the transportation lined up. It is very beneficial to him.
Well Today is the girls last day of school. Come on Summer Break. This summer should be so much more fun with the kids. Im not working so I can bring them to the lake and etc.
Well life is good right now and I hope it stays like this for a while!

Noah is Home Again

Noah came home yesterday after a busy morning at Barbara Buch Childrens Hospital. He got to participate in celebrating Barabara Bush's 86th Birthday Celebration at the hospital yesterday. Barbara Bush came in and read to the children and then visited with all the children. She came over and sat with Noah and myself and let him pet her puppies.
I got loads of pictures for the scrapbook and it was such a special event to paricipate... She touched Noah's leg before she left us and said " I love you Noah." He is seen on Channel 13 and 6. Ive posted Channel 13 below.

WGME 13 Top Stories - Barbara Bush celebrates birthday at Maine Medical Center

After Barbara Bush visited we had a nice visit with the Portland Sea dogs too.





Noah is doing better. He is still having some issues breathing but is home and happy. Mommy is very happy to be home too. I hope that we stay home longer this time...

Now its time to finish getting him better and begin planning for his fundraiser dinner a little over a month to go.. so much to do! July 23rd Alfred Parish Church come join us for dinner to honor Noah!

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!