Gainesville appointment updates....

Saw Dr K and Dr J and long story short we are having surgery on April 1st. Camden will be getting another dialation on the nissen and will be getting the family jewels put where they need to be. =0) Dr K asked me if I had anymore ?s and I said, " Yeah, while he is intubated can ya fix the testies?" I am always trying to throw the little things in all his surgeries. He said sure ( what a man of many talents ) and I was grateful. I hate HATE my post trach baby being intubated. Especially since he just was intubated in Feb with the last dialation. And the fact that he had major airway and respitory issues doesnt help. Trying to focus on the fact that he is healthy and doesnt have breathing issues anymore. He is GOOD! Once you've had a vent/trach baby it can be so difficult to realize that their breathing is GOOD...as strange as that may sound. It doesn't get easier with these "easier" surgeries, even those this is nothing compared to what he's been through. BUT fear tried to creep in. I found myself crying off and on during the 1 hr 45 min drive home. I looked back in the rear view mirror to find Camden jamming out (with a ball cap on backwards) to the music. Still to this day, he is filled with JOY and oblivious to what is going to happen, and probably wondering why his mom is crying again. =0)
God will, as always, carry us through.

Bottles at 2?

Yep. But that is ok, because I have a plan. ;op

He cant do real solids due to his nissen being too tight. We go to Gville tomorrow to talk with his specialist and GI so we'll know more then, but for now I have decided to stick with liquids and baby foods. I have to do something to get him in the right direction for eating orally! It seems there is always a setback. He doesn't have a problem getting liquids/soft food down, so 3 days ago I decided to stop feeding him through the tube during the days and just do night feeds. (he's been on night feeds anyways for lost day calories since his tummy cant handle much at once) I found a bottle that was really flimsy and soft. I need to use something where I can lay him back, put on a video and keep him distracted. He CAN suck a straw, but he is not going to keep sucking one for me. I thought about a sippy cup, but those are too bulky and he isnt going to go for that after a while and I knew it would take him some time to get a couple ounces down. So the bottle it is, and I even had to make the hole a little bigger.

It takes the kid forever to get hungry. I just didnt feed him and he played and acted like things were cool. So I finally laid him down and attempted to feed him. He fought me but I would just keep him distracted and kind of force him in a nice way. =p Long story short, in the last 2 days I have gotten 2 cans of formula down him which equals 16 ounces each day. This is GREAT. This is SOMETHING. Sometimes he'll do 2-3 ounces at a time. He always tries to quit at one ounce but I make him continue. Well tonight he did 5 ounces in one sitting, tried to stop twice and it took an hour, but he did it. That is what I give him for a feed, 5 ounces. So he did his whole feed orally!

I know Camden, and he'll get used to the eating idea and we can slowly switch to sippies etc. when his insides gets stretched again we will start doing more table foods again, which he prefers anyways. For now Im okay getting the calories down him this way. I never got to feed him at all so it is really okay for momma...

Bad thing is he cant have milk and soy makes his stools SUPER loose. GROSS. I usually make him a blenderized diet but forget him chugging that down so I have been giving him the formula to drink which means lots of loose stools.

Swallowing update and ENT visit

A little update on Camden's swallowing. The stretching has helped. He still has little spasms every now in then and sometimes hacks things up, but compared to what it was, it is much better. WE go to Gainesville twice this month, so we will discuss if further stretching is needed...

Went to Jax for ENT visit. Basically we were going for a follow up and to talk about closing trach. I have signed the pre op papers and we are ready to go BUT he doesnt want to close it up until we are sure Camden wont need surgery with these feeding issues. He doesnt want to do the trachea surgery and then they have to intubate him so, that sounds good to me. The hole isnt harming anything. =0)

Camden is into everything and just enjoying being "2" We bought undies and he did pee one morning, but I knew he had a full bladder so we caught it just in time. He is a little on the immature side, ( to be expected) so he doesnt have to do mommy's potty training boot camp like his siblings did. He gets to take his time. Im thinking he deserves that. ;o)

He is really into animals these days so while in Jacksonville we used our passes to stop in the zoo. He was beyond excited!! If you look closely in the pic above, you can see the gorilla he was looking at.

Precious Maggie

...lost her battle to a mito disease. She is in the arms of Jesus now. Please pray for this family as they go through this tragic time.... ;'(

Prayer request

We love you sweet Maggie and are praying for you tonight...



The Agnew family needs, more than ever, prayers for peace as their baby girl is not doing well tonight. We have been following their blog for a while now and have grown to love sweet Maggie.



She is one of my followers "Agnew Family blog" if you would like to read her story...



Please pray for this family tonight.

An answer to the problem!

Hate that there is a problem, but now we know why.

Camden had his endoscopy yesterday. Had to be put under which completely broke my heart. Brings back horrible memories of him being intubated for 9 long weeks. Hated to see him wake up raspy and sore and crying and MAD. Kicking at the nurse when she walked towards him and his papers saying, "child resistant to vital signs" LOL It turned out to be an 8-4pm ordeal b/t the waiting and then the unexpected findings.

They called me the first time and told me that the camera would not make it through to the stomach. The nissen surgery he had done a while back is too tight which totally explains why when he eats things get stuck, fill his esophagus up, and then come out....undigested. It didn't surprise me. Those are crazy surgeries and I always suspected something was wrong there, although with all the retching before I thought is was too loose. But nope, too tight.

SO
Dr J called Dr K down to dilate that area. Unfortunately that did nothing because as soon as Camden tried a few noodles last night we were back to how things were before. =( Dr J did say we may have to do the stretching a few times. It is that or open him back up. I'm thinking we are going to end up with another surgery, but I'm not the Dr and could be totally wrong. I hope I am.

SO
we are home and he is fine....but can't eat. He has been so whiny and clingy for a while and it seems it started the same time he started to want to eat. I think the kids chest is hurting. I know mine would!

SO
thanking God for answers as I was in fear there wouldn't be one and I would be the over exaggerating mom...again. Now we move forward on getting things to work and getting him to eat. Follow up appointments in March.

I'm telling him no to food and it is killing me. (My baby is finally wanting to eat!! I still can't believe it...but I have to say NO! ) He doesn't realize that is what is making him sick. I'm trying to get him to drink more, but he isn't too fond of it. Liquid actually comes up sometimes too, but it has a better chance making it down.

So...that is where things are as of now. A little bump in the road...

More testing...

Cant remember if I shared already, but the upper GI and esophagram both came back normal. GREAT! BUT, the puking up this clear, sticky mucus is getting worse. He can't eat, but wants to. He takes tiny bites here and there, then he does weird clearing his throat sounds (sometimes) sometimes gets the hiccups for a few minutes, gets upset, gags and pukes this mucus right up. In the last three days he has done it 6-10 times each day. Weird, and I cant figure it out. I emailed the Dr all this information and suggested (as much as I dread it) getting Camden an endoscopy and he agreed. So next Wednesday we will be heading to Gainesville, once again. We are seeing a GI there who has been great too. That is something to be thankful for ....we have always been blessed with wonderful drs and specialists.
So, that is where we are on the CDH roller coaster this week....