Thursday, July 30, 2009

First OT session :)

We like our occupational therapist and today went well. Camden was a bit sleepy but he made it through getting cranky towards the end. Ill make sure he has a nap next time but mommy had him a bit off schedule without a nurse today. Oops! :0) His OT will start coming once a week.
He is still hanging in there with his time off the vent. Monday he will start 2 hrs off. I can't wait and he loooves the freedom.
I finally took pictures today but between some computer issues and lack of time I haven't had a chance to post them, but will soon.

Today my parents have been married 30 years!!!!!! LOVE YOU MOM AND DAD!!!!!!!!!!!!! Thanks for being the best parents anyone could ask for....

Sunday, July 26, 2009

Quiet Sunday

No nurse today, so Camden is spending time with his Nana and me. :) Kids and Marcus are at church, so it is really quiet around here!
Camden is doing great on his hours off the vent and his numbers remain great. The only bad thing is now that he has had a "taste" of so much time off the ventilator, he always wants off! As soon as he is up from a nap, he is ready and can't stand to sit there on a lap. ;) He will LOVE it next week when it increases to 2 hours off, because that will be practically all the time he is awake. He thanks the vent for its help, but is ready to say bye bye. ;>)

Orally, he is doing better. Still not eating or breastfeeding, but tolerating everything in his mouth which is huge. Sucks much better too, but can't suck things too deep, but is getting closer. Physically he is getting stronger everyday. Weak trunk and legs, but just needs therapy and we work with him daily. Occupational therapy is also starting to come every Thursday, so that will be so wonderful for him.

Wednesday, July 22, 2009

Happy 6 mths, my baby!!!

The kids and Marcus are at church and the nurse has left. It is just Camden and me and I have him here, right next to me, without a ventilator. Did I just type that? Did I ever really think I'd be able to say that this soon? I am enjoying his last hour off of it for the day and I am sure he is too. =) He has also done great without any oxygen at all for the last few days. His numbers haven't changed. Praise God!
I am so overwhelmed with different emotions today. 6 months ago today he was born. I have thought about that day a lot today. I hate to say his birth day was such a nightmare, but it was. My stomach churns to think of that day and the horrid weeks that followed. Now looking back and seeing how far he has come is almost unreal, but I know it is real. God is real, he is amazing, and he continues to carry us through this journey. I thank Him always.
I started to sob like a baby today when I had to take a trach box from him. I was preparing to change his trach and was taking out a new one and he grabbed the box that I thought was out of his reach. I cried because I am so happy that he is getting into things. Little things are so huge to us and he has just progressed so much in the last week!
Between suctioning and playing with Camden I have to end this post and put him back on his vent and start his night care. Plus he is eating his oxygen collar. =)

Tuesday, July 21, 2009

Where do I start? ;)

Been a while and a lot has happened. I'll try and give you a short version. New mic-key feeding button was put in, everything fine. The surgeon also had an xray done and his diaphragm is still intact and we will see her again in 2 months. I had my first trach plug since we have been home a few weeks ago due to someone switching the heater tubes where Camden wasnt getting any moisture. I thought he was getting sick, but poor baby was so dry and his secretions were so thick that he finally just plugged. As soon as I changed the trach he was fine, I just wish I had noticed the heater situation sooner,( still do not know how it happened ) but he is fine now.
All this while we were staying in a condo across the street while our house was gutted. The house looks pretty and we are home, but moving back in is chaotic. =) I am so disorganized and overwhelmed with it all, but it'll eventually get cleaned.

The OT comes Thursday for an evaluation. I can't wait to finally get that started. In the meantime I just continue working with him. He will suck a tiny syringe and swallows much better and faster. Mostly bites on the paci, but will suck occasionally.

Im sure I have skipped many details that have happened this month, but I'll fast forward to yesterday. :) We went to the Pulmonologist and she has decided to wean Camden off the vent even more. He has done well with his two, thirty minute windows off and now he is doing 3, 1 hour windows for two weeks, then after that he will be off the vent 2 hours, three times a day. Also of the oxygen unless his numbers go down, but last night he was off all night and did awesome. Doing so good!

For the vent moms: his bpm is 6 and PEEP is now 6 =)

He also gained a pound this month and is now 15.7 Still on breast milk only and since he gained the nutritionist won't want to add anything to my milk. =)

He is trying to make more sounds around the trach and his new thing is slapping things. ;) He inspected his hands yesterday like it was the first time he had noticed them. He is such a joy....thank you, Lord for allowing me to raise and care for Camden and continuing to heal him....

Pictures will come when I come across my camera that is probably in a box somewhere .....