Pulminologist Appt

Tuesday Noah had a Pulminologist appt. It went ok. The doctor has switched some of Noahs meds and increased some of them to see if this will help. He increased his Zantac dose because he feels that Noah might be refluxing a little which is causing him to asperate. He also increased his Nebulizer treatments to twice a day to see if this helps too. He has decreased his Robinul med (the med that helps with controling his saliva) He did this to see if Noah was drying out to much but told me if he started drooling to much than I could increase back to regular amount. Last night we had to go back to regular amount. The doctor did feel that Noah would be on the oxegyen now for the rest of his life. We kinda new that but it really sucks knowing that there really isnt any hope that he will come off now. Dr. Mellow felt that this was the beginning of a long road ahead. :( But we will hold our heads up high and we will not stop trying to prove these doctors wrong. We will cherish the days we are all together and not give up!!! He is so cute! Lately he is mimicking us... he is laughing out loud and I've even got him to try to say "LaLa" The pediatrician even witness some of this mimicking and told us this was more a 6 month developmental stage.... here Noah is proving Dr's wrong already. He starts Preschool Summer School next week. Mommy is so excited for him because I actually feel that he is ready for this. He will return going 5 days a week. Im so proud of him. We are again trying to get him off one of his siezure meds and (knock on wood) this time seems to be more successful than the two other times we have tried getting him off this med. We are down to only having to give him a half of the Klonopin once at bed time and we started out on 1/2 in the AM and a whole in the PM... he will stay on this dose for 2 weeks (1/2 in the PM) and then he is off the medicince!!! One siezure med gone (crossing fingers) he is so much more alert since this change and doing so well. LEts hope it works this time! We had a Graduation Party for Noah last weekend and it turned out to be a wonderful day. We had great weather and lots of family and friends show up to celebrate such a wonderful accomplishment.

Progress

Noah is doing better we still have tough days but there is more good days than bad again. I think alot of it is allergies now. The scariest things right now are the mucus plugs that he keeps getting... he cant breathe thru them and all u can do is try to help and wait for them to pass. We've had to call the ambulance twice now because his 02 stats drop and he turns color on us. We have a pulminology appt on June 26th and hopefully the specialist can help us with this issue. I hope so I panick everytime..siezures are one thing to handle but when your baby stops being able to breathe its horrible!!! I didnt think it could get worse than the siezures...I was so wrong!!! On a lighter note... Noah graduated Preschool June 8th. It was such a wonderful day. So nice to be able to celebrate such an accomplishment for him!! He was so cute in his cap and gown and stayed awake for the whole ceremony!!! His last day of preschool was June 12th and then he begins his summer school on July 5th!!! Then in Sept he starts KINDERGARDEN!!! Wow where does the time go?

Still on life support

So Noah is still on life support...they were able to take him off the EEG this morning because his siezures have stopped and he is back to baseline siezure-wise.... They were going to try to remove the life support today but decided against it. They decided that they wanted to make sure his stomach surgery from 2008 was still intact before removing. They also wanted to give him a med that would help with swelling in his throat from removing the tube on Wednesday and having to replace the tube.....and they wanted to give him lasix to help with the water retention that he is having...the plan if all goes well is to try tomorrow morning if all goes well... They also want to try to lower the stats on the respirator and make Noah do more of the work today. They are being very careful so that the next time they remove the tube it doesnt have to go back in. They are unable to lower the stats yet because while in for his test he woke up and began to struggle a little bit with the tube being down his throat so they had to sedate him more than they usually have too... The test showed that his stomach surgery is still intact and doing well... So now it is just a waiting game.........crossing fingers for tomorrow!!!

On Life Support at MMC

So we tried to get Noah off Life Support today and he wasnt able to stay off they had to put him back on...he was breathing to fast and had to much salivia and wasnt protecting his airway....will try in another couple days but will be on life support a few more days.... DR thinks this isnt permanent but it could take anywhere from a couple of days to a couple weeks for his lungs to be strong enough :(

One Step Foward Two Steps back

Noah did so well last week. He was off 02 and almost siezure free.... smiling and babbling...Life was so great! I was so excited...I couldnt say it enough "Noah is off 02" and then Saturday the siezures began again....and then yesterday he started requiring 02 again and we are back to square one. It is so frustrating some days I just want to scream at the world....I know deep down that needing 02 isnt the end of the world for him but it just sucks... I thought we had proved the doctors wrong again. I thought we overcame it... His birthday is tomorrow..... 5 years old...I really cannot believe it....Its been such a journey of ups & downs and its been worth every minute... He is a fighter and Im so proud of everything he has accomplished in these 5 years. Im proud to be his mom. He is such a special little guy.... and he brings so much joy to my life.... Preschool graduation is coming....June 8th...wow....what a accomplishment for him!!!

Celebrate good times!!!

Noah is doing so well.... we went to the neurologist last week and he wanted to wean him from his clonazapam and see if it had any effect on his 02 requirement..... We started the wean on Wednesday and low and behold he came off the 02 from 9:30am until 5 pm!!! I was so excited but thought it was a little coincidental... Friday he did well again but we had a pediatrician appt and some errands so we really couldnt test it all day. At the pediatricians office I asked if it could be the med change that quickly and he said that he thought so. The nurse that night was even able to take the 02 off while he slept! I was super excited. He has been off 02 since Friday night and doing well!! He has had a couple of siezures but not horrible ones. I thought he was never gonna get off the 02 but things look to be looking up! YAY!!! I cant believe he is turning 5 years old in like 12 days. Its crazy!! The things I have learned in these five years! Some days are harder than others but I wouldnt change having him for the world. He made me grow up quickly and really learn to stop and smell the flowers. Every day is a blessing! Well his birthday party is coming close..hopefully we will have a good turn out. We changed the usual Sunday birthday to saturday because Erik is leaving on a jet plane!!! (LOL) the next day going to Chicago for work. We will miss the Epilepsy Walk this year because I will be bringing him to the airport that day but I am still raising money for such a important cause to our hearts... Raised $150 so far $50 more and I will reach goal!!!

Exciting Days!!

So as the subject explains....Noah and I have had a couple of exciting days!!! Yesterday it began he was off 02 from 9:30am until about 5pm....doing well even while sleeping. We put the 02 back on around 5pm because his stats started to fluctuate more and we didnt want to over tire him out. This morning he was at 100% for a stat on the 02 so I took it off and we are staying around 95%!!! Maybe there is still hope to get off this 02 afterall! We can all cross our fingers and hope!!!! That would be so great. Noah has a neurologist appt on tuesday and we are yet again trying to wean him from his clonazapam in hopes that it will help with getting him off his 02 requirement. We started weaning him on wednesday.....could this be working already??? I can only hope!! I've lost 15lbs since January and although dont see much of a change in the mirror I was so excited to be able to fit into a pair of jeans today that I havent been able to wear for 3 months!!!! Let the pounds come off!!!!