Things Looking Up Again

Noah is doing ok. He is still on 02 but he is his happy smiling self and besides a few small siezures here and there he is doing good. PCP is even talking about sending him back to school at a reduced amount of days than he had been going but still returning to school maybe tomorrow. We still have times during the day in which he is filling up with salivia and needs to be suctioned but only small amounts of time. PCP thinks it just might be last weeks heat and his siezures acting up a little. But like we have said before we would rather some siezure activity and more alertness so it comes with the territory...

Noah and the family has a new member of the family. We got him on March 17th and although he keeps me busy during the day between himself and Noah we love him and he has brought more laughter and smiles into the home. Expecially while things have been so tough lately., He is good for the soul!



His name is Barkley and he is 9 weeks old. He loves Noah and is already his watch dog. If Noahs machines start alarming he is the first one by Noahs side. ITs really cute. When Noahs in his chair Barkley sleeps at the bottom of his chair....

Had a scare last week when Noah started getting congested. Thought he might be allergic to the dog. After going to the PCP he didnt really think that it was allergies. I asked him to run the blood test anyway to be sure. They were going to run one that showed if things were elavated which would say he was being exposed to something he was allergic too. If this came back elevated he would run a more in depth panel to find what allergies he has. Waiting for results.....but his congestion has been better so Im thinking that it probally had a lot to do with the heat..we may be in for a long summer....

We recieved great news last week. Noah has been approved for a wish from Make-A-Wish. We should be having a meeting real soon with a couple of staff members called Wish Granters and they will help us to figure out what Noahs wish is going to be! Very exciting. Have no idea what he is gonna wish but it will be fun!

In the process of working on getting a fundraiser dance in the works. I have a very wonderful women in my Community named Gina who is helping me to get this set up. So we are in the beginning stages of this and a few other fundraisers to help us to raise money for Noah and any future needs that arise! Busy few weeks!

Tough Discussions

Noah is still struggling and we are not sure what is really the underlying issues to his new 02 requirements...we are hoping and praying its med related and Boston is lowering one of his seizure meds to see if this makes him less sleepy and will breathe more efficiently....Boston did have encouraging news that they check his Co2 every visit as well and there C02 levels have never been over 27. So this might be complications due to siezure meds or this might still be a new pulminary issues. If playing with some of his siezure meds doesn't work however we will need to see a pulminologist and find out our options.....we spent 2 hrs at the PCP last night discussing some of the options in line in the future and talking about future preparations :( Lets hope and pray these preparations are not needed for a long while!!!

Tough News to Handle but not the worst

Unfortunately yesterday we didnt get good news yet again..... Noahs blood gas test came back at the top level of normal. So it isnt bad enough to have to talk about having to interviene to much yet but it is a scary thought that his lungs are slowly failing.... :( they said they havent given up hope that this 02 requirement isnt Med related but we need to prepare ourselves.

The doctors also said we have to find our priorities do we want Noah siezure free and so drugged up hes sleeps or do we want him alert and having some siezures. I want him alert and able to enjoy some of what life offers...

After having a night to deal with my emotions and etc... I know that even though it wasnt the best news last night we still have Noah and thats all that matters. If he needs to be on 02 for the rest of his life ----thats what he needs! And hopefully thats the only thing we will have to worry about for a long while....We need to enjoy him while we have him and not sit and worry when r we going to loose him.... and Im going to work on this fact......and u know we've had drs tell us things before and Noahs proved them wrong HE CAN DO IT AGAIN!!! My birthday wish is for him to be happy and as healthy as he can be....with or without 02!!


Im just gonna try to hold strong ....and keep praying!

Back at MMC

Noah is back in MMC after fighting to get Drs to answer my calls or call the PCP back for 2 days. He was admitted into Barbara Bush Childrens Hospital this afternoon by the neurologist in hopes to find answers to why Noah cannot come off the O2. Noah is hooked up to EEG tonight.... and they have tried twice to get blood from him so they can get a blood gas level to see what his O2 in his blood is. Dr has asked me what I think it could be and I told them that I think its med or siezure related....Dr said she was hoping it wasnt this but wanted to prepare me that he might have had to many siezures and now his brain isnt giving him enough of a message to breath on his own....we are all praying this is not the answer we find....

Im praying this is not the answer and the neurologist doesnt think that this is the cause however we have to pray that it isnt and hope that he is right. If it comes down to that being the answers we recieve we will deal and strive foward and at least we will have some answers and I wont be home worrying and thinking the what ifs. I just want answers. I really would like to have answers with some better results though. Lets hope I get some good news for my birthday present from Noah.

Frustated!!!!

So yesterday we took Noah for a follow-up appt to his PCP. The PCP agreed with me that he is still struggling with siezures and the meds being to high. He said repiratory wise there is no reason why he is requiring 02. So we left the office with the PCP telling us he was gonna get in contact with the neurologist and get a plan in place and he would get back to me. I waited all afternoon and then finally at 645 he called saying that the neurologist never got back to him yesterday and he would try again in the AM today. I have recieved no calls still. Im getting really fed up that the neurologist doesnt wanna try to fix this! I want my son back. I know he may have siezures from time to time and I know life isnt going to be perfect but we need to figure out a happy medium that doesnt require him to need 02 all the time and that doesnt require him to need to sleep all the time from being to drugged up....Im so frustrated!!!

Still struggling :(

So Noah is still home but he is really having a tough time this time fighting these siezures. His viral bug has been completely healed but we are still struggling with the right med dose to control these siezures without side effects. We have been back and forth to Maine Med and the neurologist office this week trying to figure out what to do. Yesterday we were brought back to MMC because Noah began having siezures in which his O2 stats would drop into the 80's. The nuerologist came and saw us in the hospital and decided to increase his clonazapam back up to the dose it was before we began trying to wean him from it. Eventually hoping that we can lower some of the meds that had been increased while in the hospital but we need to do one thing at a time to be sure of what is helping. This morning after the med change he is having trouble staying off the O2 and is very sleepy. He has periods of alertness but is sleeping most of the day away!!! Mommy just wants Noah to be better.
It seems like its a never ending struggle to get things back to normal again. I wish we could rewind back to three weeks ago when things were going smoothly. But we cant so we deal with what is dealt to us and hope that things begin to look up again. Hopefully we will figure all of this siezure stuff out soon and Noah can return back to school. He has been out of school for two weeks now.
Please keep prayers coming...there has got to be some good days on its way....