Feeling bummed....

When I start to feel this way, I usually do a "perspective post check" on myself. (does that make sense?) So I went to my blog from LAST March (we are almost in March!) and well, it was the basically the same health wise. I dont want to lose my gratitude. He is speaking so well, MUCH better than lat March. He has literally caught up in a year! But, with the eating/nissen issues we have been dealing with them for over a year now. We have lost a year of learning to eat properly, learning to like new foods, learning to swallow better, and just catching up in that department to be able to eat everything by mouth one day. He has choked on food for a year. He has had 2 or 3 (my, Ive lost count) stretchings on the nissen and it has barely helped. He still chokes, just not as much, but it has still been a major set back. We even had to take the pump backpack out to wear again because we need the feeding pump during the day. I thought those days were over. I thought he was officially a "pump at night only" kid. He also hasnt gained any weight in a while and I try my best to get in what I can but he can only handle so much at once.
Today I talked with the nurse and she went on to tell me that the upper Gi looked good and that the solid was "slow" going through the nissen, but it went through. I stopped her in mid-sentence and basically told her his nissen NEEDS another stretching and that he CANT eat and just because he had a good moment on the tests doesnt change the fact that he chokes all the time. Like I would really be persuing surgery #14 (lost count of those too) for my kid if he didn't need it? No, I didnt say that last sentence, but that is what I was thinking.
Im NOT trying to rush the gtube out. I'm just wanting him to be able to eat orally. It took two years for him to allow anything near his mouth and now he wants to and I have to tell him no all the time.
Im not complaining. Im so thankful for how far he has come. I do hate to see him suffer while trying to eat.
So, todayI am bummed that I cant do a one year later "perspective post" because they were way too similar, but I am going to thank God that things haven't gotten worse....that is always a wonderful thing!! =0)

Talk about dragging things out!

The Drs office, scheduling, or whoever has been taking forever to set up Camden's barium swallow. I have called, again, over the past few weeks and they finally sent me an appointment. We will have his study done not this Friday, but the next. I cant stand watching him beg for food and choke. Today he has been hooked to the pump a lot, as I am trying to get those calories in because he is even choking when he does his bottle at times. Right now he is happy eating some spaghetti "soup." He is wandering where the heck the noodles are! I keep telling him he'll choke and he responds with, "We goin' to doctors?" Thank you, Jesus for this blessing I have had the privilege to raise for you!

This week has been the 2nd Feeding Tube Awareness week" so I have taken many tubie pictures of Camden. Tubie Moms: remember to raise awareness for tubie kids by sharing pics on FB, blogging, or when you are out and about. There are too many kids with tubes and so many who still aren't educated about them. It's up to us! =o)

Nissen streching #3

Camden has completely recovered from his cold so we are thankful for that!

As for the choking, he did well for a little while, but the nissen seems to be getting bad again. It was to the point where nothing would go through him, not even liquid. I have been holding back on another surgery, but as much as I cringe over all the intubations he has had, we have to do this, or eating orally is out. PLus, he wants to eat now, and can't. Breaks my heart when he follows me around the kitchen begging for food.
The nurse called today and we are workingon scheduling a barium study (we want to see how the nissen looks now-it has always been super tight and there was also a little "pocket at the end of his esophagus) and then we will schedule stretching number 3. My prayer is that THIS is the LAST one needed and we can FINALLY work on eating and get past these nissen problems.

Hospital stay....

Camden had been trying to fight something off and by day three I checked his O2 sats and they were on the low side. I JUST got rid of my O2 so I couldnt even ride it out until I was able to see a Dr, so off to Gainesville ER we went.

Negative for RSV and flu, didn't give him any meds...basically his little lungs just needed some help this time, so he is back on oxygen. Mom and I came home last night while daddy stayed with Camden. I am now waiting for tanks to be delivered, and for my boy to be home....back on oxygen. ugh. I am reminded of how much I hate what CDH has done to my child, but at the same time so blessed that he IS coming home to us. So much tragedy with people losing children and loved ones this year, and just through the Christmas season. My heart has been aching for so many.

Miss my baby and can't wait to have him back. I hated to see him struggle and breathe so hard but am so thankful it wasn't worse.

Update for the (almost) New Year!

Camden has continued the same path since October. Weve been to the Dr, set up more tests, then he eats better. Then he chokes more. Overall, the choking ( caused by the nissen being too tight) IS getting better. Could he use another stretching on it? Absolutely. But I have decided to give it more time and see if growth will help stretch it without having to put him under.... again.... for the ....lost count but maybe somewhere around the ......13th time? So yea, we are waiting as of now. So he is eating some orally, some by tube. Depends on how things work that day! =) He is drinking more and more from a bottle so we are getting a lot more down orally!

On another note, he is super smart and is talking in sentences. He will be 3 in January!! He is still a skinny lil thing, weighing around 25 lbs, although he did hit 26 at one point! ;o) He is still wearing a size 8 shoe. Didnt get the little foot from me!

He sings and dances and is doing almost everything a 3 yr old should be doing. He can almost go up and down stairs on his own as well. He is so precious and tells me, "Good mornin' Momma" every morning. His little phrases crack me up. He is so sweet, yet can be so silly!

Still holding off on testis and trach hole closure surgery. Waiting on the nissen problems to stop. Hopefully after 2012, things will start calming down and he will have some years to just "be" and only go fro his normal checkups. I cant wait for those days, yet I feel so grateful that we are where we are.

We also got a good xray report this month. All organs in place, diaphragm intact! Thankful to God
....So, here we go, 2012. =o)

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...