Friday, February 26, 2010

short update

I called for the extra o2 tank to be delivered here since o2 has been his new normal at night. Well that is what it took. He hasnt needed o2 anymore. Tonight will be the third night, and I am thinking if he does need it, it will be very little. Camden thinks it is funny for mommy to have to squeeze more medical equipment in his room. Stinker!

Ear tube surg will be March 22nd....

He is tolerating his PMV now. Another sign that he is getting back to himself! =)

Camden and his big bro Pnut who has moved in with him got a room makeover. They have boyish blue walls now and I think Camden likes it. Ok, I actually dont think he even noticed, but he did notice the bright new quilt on Pnut's bed.

Friday, February 19, 2010

More tubes

ENT app today. Camden is now getting tubes put in his ears. Dr M will also take a good look at his airways while in there so I cant wait to see how they have developed. At first I was thinking how this really stinks, but now I am thinking taking some pain from my boy wont be a bad thing. I seriously want to cry when I see this kid in discomfort and he just deals with it, smiles and moves on. My boy is FULL OF JOY. So tubes in his ears may make him a happier baby, if that is possible, cuz he is already pretty happy. =)
No surgery date yet. (The cool thing is that this doesn't even seem like a real surgery to me compared to his other stuff.)

Still on o2 at night, but I can see him doing a bit better. He is actually just on a tiny amount tonight. (I am his nurse tonight, the nurse called in. He likes me more anyways. ;p)

We are really missing his voice! Still not tolerating the PMValve due to this season of sickness. We tried in on tonight, and although he tolerated it a bit better, he didnt make much noise. He just keeps that mouth shut tight unless you really REALLY make him laugh hard. And even then it is just a few seconds. I cant wait until he gets better and can wear it more and learn to talk one day. I cant wait to hear his first word. One day!

Thursday, February 11, 2010

Sick, again

Yep. So we are gonna be hanging around the house even more through this winter sick season. Seems we are coming in contact with sick people and I just cant chance it anymore. We don't even go to stores and have only been to church a few times, but I guess that is enough. He is picking everything up. Less kids/people we are around the better, for now. I am sad about this, but getting sick three times in 2 months isn't worth it. So, I called pulm. today and he is on albuterol every 4 hrs and another antibiotic. He is doing ok and thankfully only needing a tiny bit of o2 at night.

So, I am finding that Camden has an intolerance to corn. ( you are thinking, " You have to be kidding?" Yea, me too....) He isnt handling the pediasure and broke out in hives and vomited through his nissin. He also broke out with burts bees shampoo and the common ingredient in both pediasure and BB shampoo is corn. So I am getting him into the allergist ( why not, we are at nemours all the time anyways ;p) asap to rule it out so I can search for a corn free toddler formula. I think I have one in mind and it is organic and cheaper, so that is even better. (thanks, Nichole for researching)
So for now we are back on baby formula and his skin is clear and he is happier.

Today he had another RSV shot. As usual, it broke my heart and this time he didnt forgive Dr C and cried every time she'd try to touch him.

Went to Cardiologist on Monday and he wasnt quite happy with things. His ventricle is still "thick" and he thought it would thin out by now. He said he needs to keep in mind that Camden had a really bad start and it may take longer. Not too much to tell, just will check it out again in 6 mths and see. He did say he didnt want the trach pulled until we saw him first. I am not worrying about this situation. I just think Camden's body and heart and body went through so much stress and just needs time.

We are trying to add more signing in since this will be his only way to communicate as of now, especially with being sick and not being able to wear his PMV to help him. He knows momma, daddy, please, milk, no, yes, all done. He has actually signed momma, please, and milk. Today he decide to be rebellious and shake his head NO when I asked him to sign please. (His new thing is shaking his head NO to everything.) Definitely need to get to work on more words. Daddy claims he has signed daddy, but I know he was just trying to poke his ears because they hurt him...

I had to order ANOTHER mic key button ( feeding tube) because his busted again. This time I babied it and was extra careful not to pull it out so now I know it is his crazy strong stomach acids popping the balloon inside. Problem was that Humana only pays for one a month and the last time we had to get one was 1/11. This happened 2 days ago so it has been taped to his belly. Call me cheap....LOL I refuse to pay 200 bucks for one when we pay humana an absurd amount a month. So today he has a fresh gtube in.... with a sticky belly. =)

Monday, February 1, 2010

Jenny Craig....

The extra formula is working. He is now gaining too fast, up to over 20 pounds now. I cut back slightly to see if he just slows a bit on the gaining. Gaining is wonderful and a blessing, but a pound a week is over the top. I can't have a fat trach baby that can't move around. =) He is still on formula and now that he is a year we are going to be switching to pediasure soon. Nothing by mouth as of now....the bottle is his enemy again.

Camden picked up another "something" last week and spiked a fever on Saturday. He has been lethargic and clingy, but the fever did not come back today, thank God. I am hoping he fought it off and is done. He is now back on O2, which I expected. During the day off and on, and all night.

We saw pulmonology today and his chest xray looked better than his last. I shared my concerns with Dr H about his breathing and requiring O2 most of this month. She basically gave me her perspective and said they never thought Camden would be out of the hospital as soon as he was and if he did go home they thought he would be on the ventilator for a long time. I think she wanted to say, " Of course he is going to require O2 when he is sick! What do you expect with his lung situation?" ...but she didn't =) I know she was being kind, but it made me feel that she thought I was ungrateful. I am so not. I am so beyond thankful. He is a miracle. The mother in me just always wants better and better for him. This was Camden's first sicknesses and I didnt know what to expect. I knew it would hit him harder, but I just didnt know how hard. It is difficult to take steps backwards. Especially with him being off the vent and off oxygen since the summer. Now he is on O2 so much even when he isnt sick anymore. But this is Camden. He does things differently and he is doing great for what he has been through. =) Just hard to watch him in his little "down" times.

So he did go to the Wolfson " One to Grow On" Marathon. He was one of the 55 children that they sponsored to raise money for the Wolfson Children Hospital. It was rainy and nasty but a special time for us even though he was miserable. I wish he could have enjoyed it. I thought he was tired and anxious with all the noise and people, but that was when he was getting sick.

I thought I would share his achievements at one year old, but we are having an eval Friday with OT so I will share then. =)

He is tolerating his new trach just fine. I had put it in a few days before and he wouldnt quit coughing so I took it out until I talked with the dr. He said to keep trying with each trach change until he gets used to it, but when I tried again he was fine with it. He is now a 4.0 ped.