Still Going Strong

Noah is still doing ok at home. We are done the antibiotics and off the oxegyen for the most part!!! Still needs O2 sometimes while he is sleeping! But not all the time!! Still is running a low grade temp but doctor isnt concerned as long as it doesnt get higher. Says with phemonias sometimes it takes a while for the temp to disappear completely.

Nursing is going ok. I think the new nurse is going to work out great!

Noah is doing well at school the past two days back he has stayed awake for the whole class!!! The first day he had a busy day because they did OT, PT, and speech all in the same day!!! He was a tired boy when he got home!!!

Home Sweet Home

Noah is home now. He came home on Thursday afternoon. Things have been going ok since being home. He is still running a small low grade temp on and off and still hooked up to 1 liter of O2. But is doing well... He was so happy to be home...As soon as I put him down on the couch to take his jacket off he started smiling and talking it was so good to see.

I have my 60 hrs of overnights for nursing approved finally. So I had a nurse thursday and friday night. Tonight is our night and then from now on I have Sunday - Friday nights covered. This should help out alot.

Noah has a follow up appt with his PCP on Monday and if all goes well will continue back to school on Tuesday!

We are moving around my house...it started yesterday. The living room is getting moved to the "old" dining room area...my kitchen table is being moved into the kitchen and the washer and dryer is eventually getting brought up into the room where the "old" living room was. We started working on this last night. The living room is moved and now its just getting the rest of it moved!!! What a project!!!!

Another Day at BBCH

Noah is still about the same as yesterday. He is still very sleepy, however has woke up for a few minutes with some expressions on his face & some interaction. Not much but some...
He had a rough night last night with breathing and needing nebulizers to help keep his O2 stats where they need to be. I didnt get a whole lot of sleep last night he kept me, the nurse and the respitory therapist on our toes.

After rounds today the doctors say we are here for another night at least. We are all in agreement that Noah needs to be a little more at baseline before we go home. Meaning he needs to be more awake. The oxegyen requirement doesnt bother me it is the fact that he wants to sleep all day. So hopefully we find out sooner or than later why he is sleeping so much.

7:15pm

So today Noah has seemed to be doing better. He was very constipated so we gave him an enema to help him be more comfortable. I tried to ease up on the tylenol and ibruprophen too to see if this helped him to wake more. He has woken a little more today. He only stays awake for 15-20 intervals at a time but its nice to see eyes and see "some" interactions..... His tempature has been in the 99's today which is still a small temp for Noah since his normal temp stays around 97-98.....but much better than 100's.
The neurologist is suppose to be in sometime tomorrow to see him and talk about what he thinks would be a good plan for Noah. He spoke about reducing the Clonazapam dose again to see if this would help decrease the sleepiness but I want to talk to him before I just agree to this change. He comes off the steriods after today and hopefully he continues to do ok and not have any problems with ketosis! Crossing fingers~~~ so far so good.

In BBCH

Noah has been moved up to Barbara Bush Childrens Hospital. He is doing better breathing wise and is only requiring 1/2liter of O2 to keep his stats up about 93%. He is very sleepy and we were very worried about this. While still in the PICU they ran a EEG to make sure he wasnt siezing continuously and the EEG came back fine. PHEW!!! So we are staying overnight for at least tonight to make sure he begins to wake up a little more before bringing him home.
He was still running a temp this morning so I think the tylenol and Ibruprophen could be playing into why he is so sleepy. They are leaning toward this being a viral episode versus a asperation or bacterial phemonia now....
He has been put on steriods to help with the infection but we have to also be careful with these because the steriods could mess with his sugar levels and cause him to come out of ketosis for his ketogenic diet. So they tested him blood levels today and said it looked ok and they will test again on thursday to make sure that this hasnt happened. Dr tonight said their objective is to try and only keep him on the steriods for 3 days and then take him off. Keep our fingers crossed that helping him with his respitory illness doesnt mess with his siezure and ketogenic diet.
Well thats it for now. They are keeping a close eye on him and we hope that he begins to be himself soon so that we can be home soon. But good news is we are one step closer because we are finally out of the PICU!

Another Visit To MMC

So Noah was admitted into the PICU (Pediatric Intensive Care Unit) in Maine Medical Center yesterday with phemonia! The poor little guy is so sick. Its that time of year again unfortunately. He gets so sick so qucikly too!!!
Saturday he was suppose to spend the night with Grammy & Grampa and when Erik & I went to bed something just didnt feel right to me. I went and hunted down my phone that I had forgot to bring upstairs and mom had called me twice. I called them and he had a stuffy nose and sounded all congested. I told them to bring him home.
At home I took temp and checked his O2 stats with his machine and he had no temp and his O2 was at 91%-93%...Sunday morning he was wheezing and I tryed everything to stop it and couldnt---still no temp. Took him to the doctors 2 hrs later and he had a temp of 100.5! And she said his lungs were both full of junk. Take him to MMC I was told.
Got him to MMC and he was seen and put in the Critical Care Rm in the ER. Temp had risen to 102.8 with tylenol!!! YIKES!!! Xrays showed phemonia and THEY GOT AN IV & BLOOD WORK without much hassle..... YAY!!! And we were off to PICU!
He is doing ok. Still working really hard to breathe. Makes me want to breath for him! :( On quite a bit of O2 and we just started him on Gtube antibiotics instead of the IV antibiotics he was on! The doctor says he will be in the PICU again tonight and we will review in the morning.... I really hate it when my boy is so sick but Im hanging in there. One day at a time! One day at a time!

1st Week of School

Noahs first week of school went well. We had a nurse and transportation and everything went very well. Its an adjustment though...Mommy had major withdrawals without Noah home all week. The house is to darn quiet when all the kids are in school. I kept myself busy cleaning the house, baking with the girls when they got home, and working on diapercakes for the business! About 3 pm everyday I thought "HE HASNT EVEN LEFT SCHOOL YET, HE STILL HAS 45 MINUTES BEFORE HE EVEN LEAVES!!!" LOL!!! I'm sure I'll get used to it but Im not sure how long its gonna take!

Noahs still having his siezure spells. Well unless you hook him to an EEG and then he will just not sieze. We took him for an EEG on Thursday this week and he just slept through the whole EEG. The doctor called yesterday and said the EEG still looked good. URG...how frustrating when you know something isnt right. But we are going to do some playing around with Meds and see if this helps. We can only hope!

Noahs Progress

Noah has had such an awesome summer. I love having months like these. He has been alert and happy and healthy. We went two whole months without seeing any siezures and he did so well at school this summer.

However all good things must come to an end sometimes. He is having spells again which I am convinced are siezures. I dont know for sure but I called the neurologist and he thinks that I could be right. We are going to schedule him to have a 24 hr EEG again to find out. Lately he sleeps most of his days and is having these twitching spells.... :( I am so disappointed. I hope that tweaking his meds again will help. The doctor is on Vacation this week and the receptionist says he is booking out into Nov/ Dec and Noah just cant wait till then. Gonna call when the DR is back from Vacation.

We took a trip to Waltham MA a couple of weeks ago to meet with the Ear Specialist again. Noah is scheduled for Ear Tube surgery on Sept 30th. We will be going for a pre-op appt on Sept 29th and staying over night for the surgery. Then Noah will be staying overnight at Boston Childrens Hospital for observation! I hope everything goes ok. Keep him in your prayers. While under anestesia in the OR they will be doing a hearing test as well just to re-check to make sure he can hear ok. Im pretty sure he will pass this test!

GOOD NEWS!!!!

Starting Tuesday Sept 6th Noah will be going to preschool 5 days a week at Morrison Developmental Center. He went 3 days last year and we got the opportunity to try 5 days this year. Which is exciting. He has improved so much since beginning school I think it will be really good for him. Yesterday was a bittersweet day because it was his last day with Home Health Visiting Nurses Physical Therapy and Occupational Therapy because he is going to get his services at school and start a new chapter in our lives.
Bittersweet because Lana Our PT has been with us since Noah was 6 months old.
There were tears and laughter remembering the good times....and she is gonna be greatly missed. but this again is going to be a promising opportunity. It means Mommy wont be able to cuddle him as much...and I have to let go a little more, but I know its for the best. I even have nursing and transportation this year set up as long as everything continues to go smoothly. So Ive been really trying hard to get my Diaper Cake business running. I put my ad in the local newspaper and got business cards and Ive been beginning to get calls and orders. Exciting. When Noah starts school I plan on making some diaper cakes up and bringing them to some stores who in the past said I could place a couple on their shelves but I just havent had the time to get some there. Check my webpage out www.mainelydiapercakes.com

Hurricane Irene was quite the storm for us hear in Lake Arrowhead. We lost power for 68 hours or so. It kept things interesting. The candle light flickering seemed to not help Noahs siezures at all. And I dont think he understood why we werent turning lights on so he would sleep. We borrowed a generator from a friend however the first one didnt work. Patti Reed (my friend since kindergarden) let us borrow her generator Tuesday night and it worked great and helped us out a GREAT deal! She was my hero this week.

Well I guess thats it for now. Hopefully now with internet( I lost it for a while) and with Power back, and with my afternoons free-er with Noah in school I will try to be better at keeping this updated.... I really will try Grampa & Grammy! We love you all.