Nolan wasn't ready....

Well yesterday was very eventful and scary, i was a mess.
They extubated him at 8pm july 23rd it was a moment i will never forget
he tryed to breath on his own and it didnt look right :( he was struggling and breathing so fast.They put him on high flow oxygen to see if this would help...but around 9pm his oxygen was dropping,fast.The doctors and nurses rushed to his side and started "bagging" him this helped, they decided to do an emergency x-ray this showed that his left lung looked callapsed, so they put him on b-pap for the night, his breathing improved alot!So yesterday afternoon when we went to see Nolan we walked into the room and he had his eyes open and was moving, but he still looked "different" he was withdrawing from all the drugs he was given, he was so jittery and shaking, but trying to talk :(. It was very hard to keep it all together and to watch our sweet boy going through this.They switched him from b-pap to c-pap this means less pressure given through the mask, it was a great improvement and his lung had finally opened!i was happy.Later on in the afternoon we suddenly got moved to an isolation room becuase his test results showed he had virus, this explains why extubation was so hard on him on top of everything else.We did however got to "hold" him just lifting him off the bed but still close to it,he reached up for me it was the sweetest thing to have happend this whole time, he knew his mommy was there and that his daddy was too.For now they will be slowly wiening him off the morphine and adavan becuase it's too hard on him to just stop everything suddenly, we cant wait to have him home.

Update

Well nolan is quiet the "wild child" in the PICU tuesday at 2am while i was at home sleeping he was trying to sit up and the nurse had to physically hold him down...he had to be "paralyzed" because they dont want him doing this yet.Fortunately lastnight he was settled and got his rest.Feeds have been increased and he is doing everything they expcected him to do...he is doing wonderful.He is still intubated and the plan is for tomorrow that it be takin out...but before this happens they will lower the ammount of air going into his lungs so he can slowly take over...so when he becomes extubated its not so hard on him, he is on multiple meds to keep him comfortable, i will update what those are when i get home,we are just happy we are moving on up! and nolan is such a warrior! we love him.

Surgery is done....

Yesterday was so stressful...from start to finish is was about 3.5 hours long before we got to see him again, it was literally touch and go.The surfery itself went wonderful barely any bleeding at all!Intubateing him was difficult so he still has the breathing the machine in him, he is staying in the PICU at the stollery hospital, unfortunately i can't stay over night with him as they dont have beds for the parents in there :(. Iknow he is in great hands, he has nurse 24hours in his room doing everything for him.They will try extubating him hopefully tomorrow, he keeps trying to wake up but they cant let him do this due to the tube going down his throat so he had to be re sedated this morning.I hope his recovery goes quickly and he can tolerate his feeds again soon so we can all be home together, i miss my babies.

Pre-Admission appiontment was today.

We had nolans preadmission appointment today, it was 2.5hours long.
i will give you all the explanation of what happend, we arrived and i had to fill out
a form that was 5 pages, once i finished we called to a room, where a nurse explained things briefly, she was very nice.She told us we have to be at the hospital for 9:30am and that his surgery is scheaduled for 11:30am.Nolan cant have any solids or milk after midnight, just sugar water through out that time untill 7:30am.

We then were walked to the Xray waiting area, where nolan had to get some xrays of his chest.The stupid people hurt my baby, the chamber they have to sit him in that im very familiar with, they did wrong and i had to tell them that he was too low and they were squishing his poor face inbetween the plastic!!ugh i could of freeked! well i pretty much did.Anyways!after xrays we went back to the room and seen the aneastesiologist who then explained to us alot!

they will be inserting an iv into his hand where the medication will run that will keep him asleep during the operation(they dont want to gas him to sleep because its to stressful on him with his cardiac issues), along with a Epidural in his spine to control the pain as he wakes up,(this will be inserted while he is asleep so that when he wakes up he wont feel the pain), he will also have an iv in his neck to monitor how much fluid is going in during the procedure(this is an accurate reading) and to watch his blood pressure.In total the operation from when they start to when he is the recovery room is up to 3 hours we cant see him while he is in the recovery room(45minutes).

He will be in PICU becuase he will have a breathing machine down his throat :(
they will not be in a rush taking this out untill nolan is ready.As they do not want to cause
any stress on his little body and heart.

Nolan also had some blood work done today:( it made me cry seeing him in pain.
I had just recieved a call saying we have to be in before 9am becuase they need to redo the blood work to make sure it is accurate(they didnt get enough blood to test)

Please pray for our nolan as he goes through this surgery and pray that things go as planned and that we will be able to come home soon,

thank you all for being there when i need, this is not easy, but we love him dearly and know this best decision to make for him, in the long run he will be so much happier!

love you all and i will update as soon as i can!

Surgery is set.

Next tuesday is nolans surgery day, for his fundo repair and g tube placement.We are feeling very nervous as it's so soon in such little notice, but we pray and hope for the best, we know nolan will be a much happier little boy without a tube going down his nose.I will update next week after its all done, please pray that his recovery goes smoothly.

They love eachother so much

The Party

June 27 2010 a hot sunny day...was nolans celebration surrounded with family and friends.The day was busy and fun we had over 50 to share this special day :) we had 12 balloons release for the angels and also symbolizing his year that has passed by quckly! when we cut te strings they floated into the tree and got stuck, luckly nathn climb up and set them free..it was like they didnt want to go.We had a gift opening and lots of cake! Our amazing photographer from NILMDTS to came out and did hundreds of pics of the special day, she did this on her own time because nolan is her first to defy all odds of life.All in all it was a very emotional and fun day.Nolan is our miracle and is such a gift to us.We love him dearly.