Sunday, October 25, 2009

waiting

Getting closer and I have been getting butterflies every now and then. =) Wow, I cant wait until next week, then surgery will be over.

Same ole' around here, just waiting. Camden seems to be wreching a bit more, so I know he is ready to get his insides back in place.

"They that wait upon the Lord, shall renew their strength. THey shall mount up with wings as eagles. THey shall run and not be weary, they shall walk and not faint. Teach me Lord to wait..."

....somewhere in the Bible ;p

Sunday, October 18, 2009

Surgery is October 30th

We will be going in the hospital on the 29th so he can get cleaned out and ready to go....

Looks like some colon is behind his heart. Dr. W will be patching his diaphragm with gortex again and we will think about doing a more "permanent" surgery when he is older and stronger.
For now focusing on getting the intestines back where they should be.

They are not concerned with his testes at all right now.

Increasing his milk helped and he gained 7 ounces this week. :) Up to 16.11

Still the same orally, although he did lick a piece of my ham today. Weird. Of course he did start freaking when the tiniest piece broke off into his mouth ... I was quick to get it out. But for him to lick something other than plastic or cloth is huge.

Short and sweet, need to settle in for the night. If you remember, please keep Camden in your prayers with his upcoming surgery. Thank you :)

Monday, October 12, 2009

Well, they're movin on down.... ;0)


Today we went to urologist and optimologist.


The uro. explained that if the testes were up in the belly somewhere, the surgery may be more involved and he wasnt sure if it was wise to do it at the same time as the diaphragm repair and compromise Camden's recovery. I totally agreed, but of course was wondering about Camden's future with waiting later to do the surgery. Long story short, after we discussed the situation he took a look at Camden and he felt the testes! They were down there, not all the way where they should be, but down there! It now wont be a two step procedure and we are super excited. :)


He had his eyes checked and he is getting the tear duct fixed. He had his eyes dilated because they want to make sure he eyes were healthy first, and they were. Poor Camden looked like he was on something the rest of the day. He was exhausted and fought sleep all day while we were at nemours, but came home, took a nap, and was back to his precious happy self.

The eye doc is pretty open to be there when Camden goes in so we are now just waiting on the surgeon to set a date. Hopefully we can find out a date soon....










Thursday, October 8, 2009

The Family Jewels have been found...

blood results say there are testes :) What a relief!! Thank you, Lord. One less thing to think about. So when he goes in for surgery they will be umm fixing things in that department.
WE go to see the urologist on Monday to discuss details.

Tomorrow Camden goes for a barium enema. ;( Guess the upper GI didnt show enough. That stinks. I hate for him to go through these tests.

One blessing is that he hasnt been wreching and throwing up anymore than the normal. Actually has just been wretching lots and just throwing up secretions, so not losing calories which is a huge plus since he had not been gaining. I have been sneaking a few mls here and there for the past few weeks and he is starting to gain now. Of course that is making it more difficult for me to keep up with the pumping. :-o It is getting tough...

We are slowly but surely getting things in order to prepare for these next few weeks.

Oh, Camden is clapping! So precious. I sometimes just bawl my eyes out thanking God for his brain function. Being on ECMO for three weeks was such a concern in this area. ( along with many others) He is a smart little booger. ;)

Thursday, October 1, 2009

No More Daytime Vent, Nebs.... and more

Since Monday, Camden has officially been off the ventilator all day. Just goes on at nights and we will chill with that for a while and not stress him before surgery. He is doing great with it.
He is also off his albuterol!! No more neb treatments. It is such a small machine compared to most of his things, but it felt great to pack it away. ;) Im just so happy for him...one less thing for him to deal with. =)

We had the upper GI last Monday too. I am still waiting on the blood work results from last week concerning his testes. Hopefully they'll call tomorrow since I have called the last two days. We still go to see the urologist and eye doc before finding out when surgery will be. He is on a slow rate of 80 ml an hour and doing better with that. Having some bad retching moments, but it isn't every feed. Bad days and good days. Breaks my heart to watch it though. I can't wait until this hurdle is over.

Orally he is doing awful. That is basically it. I have been so upset about it and it seems to be getting worse. I try cereal everyday, and he seems to hate it more and more. He is gagging worse now. Today he just lost it and once he gets crying over it there is no more trying. Plus we want to make it a happy time, but how do you do that when he is freaking out and dry heaving ;s ? It seems like such a long road in the eating department, like he will never get there. His spits out pacis and bottle feeding is pretty much a joke too. Now with the surgery I am afraid getting off track with things is going to be a maojor setback.

For now he is hanging in there before getting his diaphragm repaired. He seems to be attached to the feeding pump most of the day and night, but that is what we have to do for him to be able to tolerate it and maintain his weight.

This evening, Marcus and I took the kids on a bike ride in the neighborhood. Camden loved his stroller ride. The weather was so cool and nice and he was just checking everything out. Never fussed and was a sweet boy. Thankyou God for giving me this joy in my life!