no surgery.

After meeting with anesthesiologist, she felt it isn't wise to do any surgery until he isn't getting food stuck in nissen anymore. She said this was her opinion, (been doing it for 30 years) and that other Drs may say she is an "idiot" but after her sharing the risks, I canceled the surgery. I'm not risking aspiration for testicles at this time.

Now we wait for busy Dr Ks office to call. I am trying to schedule another stretching. I am focusing on this problem only. After this is all finished (prayerfully in the near future?) I will try to get his trach hole closed and the testes surgery all at once. At least that is my plan....


Btw: My lil rock star is potty trained in BOTH areas now. He tells me every time and is finally not "cared" of poo.

Surgery update....

Urologist wanted Camden to see anesthesiologist before he does testicle surgery. I told him we've had surgeries and he has done well, but he still wants him seen. I am totally ok with that. We go to Jax to see them this Tues, then surgery is set for OCT 4th. Slowly but surely gettin' those things were they need to be! he will be pulling left testicle down as much as possible and not even attempting the right one at this time, so unfortunately this doesnt look like the last surgery in this department either. =o/

Camden is STILL choking. Maybe even getting worse again? (but wants to eat!) So, as much as I am dreading this, we will make an appointment with Dr K and talk about doing 3rd nissen stretching. It has been going on too long and it is just heart breaking to watch. I know it has to hurt too, but that is all he knows and he doesn't complain during the episodes.

His little sentences are turning into longer ones, some even 4 words. He is also officially potty trained, even through the night with a 500 ml feed. YAH! he's is the MAN! ;o) Ibtw- NEVER expected him to do this, but he just holds it and pees when he wakes, that works! =)

As I feel frustrated and sad about these issues he is having, I am thanking God for my boy!! We can get through these smaller issues!! It is so hard, especially when he goes a few mths w/o surgery,( I get spoiled! ;op) but I'm thankful that his breathing is so wonderful and he is strong and is prepared for this...

Potty Training.

He has done amazing. We started this week, and by the second day he was asking to go and would do it. He has shocked me, once again. The first morning was torture for the both of us. He was SO scared about it coming out, but I knew he had to see it and know that it wasn't so "cary" as he was screaming. Once that incident was over, we were good to go! There is NOTHING cuter than him running around in his undies with his tiny hiney.

Testicle surgery has been moved to Oct 4th. Was ready to get it over with, but I'm assuming someone just needed surgery more than us. Still waiting for anesthesiologist to call with their appointment.

Camden is taking his meds orally, and is now taking his amoxicillin (for missing spleen taken out in first diaphragm repair) from the little medicine cup we were never able to use. Today, watching him sipping his meds in his undies was a little emotional for me. I am so thankful and have never been so happy to potty train a child.

Getting some surgeries behind us!

We go for surgery Sept 15 for Camden's undescended testes. The Dr is saying he wants to just watch the right side (side that surgery was already attempted) for now, and focus on bringing left side down. He also wants us to have a consultation with anesthesiologist before surgery because of Camden's past. Camden has done very well with the last 2 intubations since trach was removed, but if this Dr wants to be extra cautious, Im all about it. Ready to get some of this over with.

I spoke too soon (once again) in my last post about Camden's eating. Today, NOTHING is wanting to go through the nissen. I also just wasted his dose of meds not knowing he was about to choke. Up came the noodles he was eating, along with the fresh meds I had just gave him orally. = o/

August update!

Not MUCH change, but some things to update.

We went to ortho, and as of now, no scoliosis! Thank God!

We go to urology this Wednesday. I am wanting to get his testis "fixed," since they are not able to fall on their own. They are really stuck and may need a couple surgeries. I'm ready to get this all over with. Dread it, but ready to put it behind us.

Eating--Camden's tight nissen problem has remained unchanged until the last few days. He was choking on food every few days, and then some of it would eventually come back up esophagus. The last few days he has eaten more, and only had one choking episode, but food didn't come all the way up! He kept it down. I am not getting my hopes up, but Im praying that this is meaning the nissen is starting to stretch. This has happened before, but this may be the real deal, right?? ;o) He is still getting continuous gtube feeds through the night which he needs. Im really focusing on him eating orally during day,(when he isnt choking) but if he doesn't have a good eating day, from either being picky or choking, I will give him tube feeds during day. Overall this is amazing progress for Camden, and I am proud of him.

He is talking so much more, he is full of energy, not quite walking up stairs on his own but now can while holding on to rail, swimming with his puddle jumper, singing songs, (loves to sing Amazing Grace) pitching fits,(not too many, he really is a sweetheart) making us laugh, and doing other NORMAL 2 yr old things that make my heart oh so happy.

July is here......!?

silly boy!

Camden started doing well with the choking...until last week. It got bad again. He has continued to choke and I am thinking we are going to need another dilation of the nissen area. It's just not getting better, and that area can start to close up again. This was the reason we were going to do the surgery a few months back and changed our minds. Vicious circle. As usual.
So, we are back to tube feeds and the occasional snack which is caused by him begging for food and me giving in. And then he chokes.

He still has a gtube but for totally different reasons then why he first got it. There is something wrong with this picture. But, these are the things that can go along with CDH and nissen surgeries.

We did some potty training today. A lot. There was crying and fighting and he hates it. NEVER had to deal with this with my other kids. He comes to me and says, " I pooped" so I will change him, but other times he doesnt tell me. (He is so stinkin' FUNNY and I laugh at so many of his comments throughout the day.) Another thing that makes the potty training hard is ofcourse the all night feeds, and the fact that he has to drink soy formula which gives him awful runs. I am doing more blenderized diet for that reason, but the soy is nice at night because the BD gives me a rough time beeping for hours, clogging the pump. I could add more liquid, but that just adds more volume and less calories.....ugh. We will play with potty training, Im in no rush with him, but he sure looks adorable in those diego undies! The 2/3 t are too big in his skinny little butt.

I need to make a few dr appointments but I have enjoyed the break. *sigh* I know he has too. He hates going, but I am going to have to get on it soon. We need to see urology for his testes, and ortho for his spine. We have never went to ortho and need to go as a lot of CDH kids can have scoliosis.

There is the "health" update, but other than that, Camden is doing well. My beautiful blessing.


Thank you, Jesus.

JUNE Update!

All is pretty well with Camden.
He is eating a little better and choking a little less. We just need time, as always, but things are getting BETTER.
He is talking more and more everyday. He keeps us laughing. He loves singing 'Amazing Grace' and 'Im a Little Teapot.'

I haven't been doing any day tube feeds and just keep offering him things. WE ARE on night feeds, otherwise he'd just blow away. He still looks like he may blow away, but Im really trying to stay off the tube feeds during the day.
He takes his medicine by mouth!! I use the syringe and he does it. He doesn't really like the new amoxicillin flavor, (dont they know there are kids with oral aversion and ya cant change flavors? ;p) but he drinks it, signs "all done" and is proud of himself.

Potty training is non existent right now. "Camden do you want to pee on the potty?" and then "NO" before I can finish the sentence. I would be more forceful, but the soy formula continues to give him the runs which has been a nightmare . I am going to have to do a blenderized diet through the night and just find a way to keep it cold. Ugh

He continues to amaze me, and I continue to give God all the glory for his life. What a joy he is to have and I am ever so grateful.

CHERUBS (CDH org) is in a contest "Vivit Gives Back" and we are trying to win for research money and more. We will also be giving 10,000 to help an orphan with CDH. We are begging for votes. Votes are HARD to get. (please vote through FB if you read this, find me on there ) But through this contest there are many emotions. It is so important to us. Most of us CDH moms are so passionate about it. Especially now that I am in the "calmer" CDH times at the moment. We dont want others to have to go through what we have. We want to help this orphan, who BTW has people waiting for him. We want research. We don't want anymore babies leaving this earth before their parents. Seeing these post from moms who have LOST their babies is heartbreaking. I hate CDH. Please vote through FB. It is so easy, http://www.vivint.com/givesbackproject/charity/3 ....but so important.

I had a mom share how important it was for us CDH moms to keep blogging. Her baby is in the NICU right now with CDH. I haven't been keeping up with this blog as much because I feel like we've been dealing with the same issues over and over. I will make sure I blog more. Someone out there may need it.
So, this is for you, Brandy. I cant WAIT until I have to remind YOU to keep blogging about Brock because he is doing so well!