Thursday, June 2, 2016

No more "tubeless"

Surgery is set for this coming Monday at WCH. Gtube will be placed in his old site. We should be there a couple of nights. After taking him to the GI and having the BRAVO placed and an upper GI they think there is no need for the prevacid anymore. Apparently it seems the nissen wrap Camden has is working well enough. He has starting gagging more and not eating as much, so Im going to have to disagree. He did this last time I tried taking him off the prevacid. But that is another story... We went to see Dr P, a surgeon who we have heard of since Camden was born but we already had one at that time (who has moved). Camden's current surgeon, Dr K, has moved as well, so I thought for things like this I should find someone closer. Dr P lifted Camden's shirt, looked him over a few seconds and already had his opinion, agreeing that he needed a feeding tube. He was not only worried about his low weight, but also that he wasn't getting enough nutrition for healthy brain and body developement. He goes out to Afghanistan soon, so we have to do surgery before he leaves. (Thank you for your service!!) I felt very comfortable with him and really liked him. With Camden being older, things are so different now. Having to explain what will happen, what pain he may feel, and then seeing the concern on his face is difficult. I keep assuring him this is going to be a good thing. As much as I hate to see him go through ANOTHER procedure, I am so ready to see him grow stronger and look healthier! People have recently asked things: "Will he still be able to eat?" Yes. He will eat just like he does now. I am thinking I will run the feeding pump very slowly during the night to get his extra calories in. Hopefully that will do the trick and we won't have to go to day feeds. "How long will he have it?" As long as her needs it. I am thinking years. I am in no rush to get this out and have to do this over again! We will know when Camden has learned to eat enough to maintain his weight. He needs to grow more and be able to consume more. "Does it hurt?" "Can he swim or get on his belly?" Once it heals it shouldn't hurt at all. There may be sore days for different reasons, but overall it shouldn't hurt. He can swim and get on his belly. He will learn to favor that area and we could even wrap it for a certain activity if we needed to. The tube can be pulled out of his belly but hopefully that won't happen since he won't be hooked up to feeds during the day. When the feeding tube is disconnected, it just looks like a flat button on his belly. Thank you for loving our boy. He is our JOY. And really, overall he is doing incredibly well!! Thankful to our Lord! Blessings! ~ Devon =)

Monday, February 29, 2016

A busy March.

It has been a year since my last post. A lot of "life" has been going on for Camden, but mainly good. He even got a new baby sister last December and is officially a big brother. He has been sick a few times and is having a difficult time fighting things off once he gets them. I have to remember he is lacking a spleen. He has been sick for a few weeks now but after an ER visit with a shot of Rocephin, he seems to be on the mend. As far as meds go, he is still on Prevacid and a prophylactic antibiotic. So here we are with new concerns: Camden's gtube has been out since around the time he turned four. He is now seven, and not thriving. We have tried for 3 years to get him to gain. The issue is no longer oral aversion! He LOVES food. He loves to taste new things. He isn't picky. The problem is what happens after he eats and how he feels. This part of it has gotten worse. He feels full too fast & constantly complains he feels like he is going to throw up. (which he can not do because of nissin surgeries) Breakfast is out of the question and by lunch and dinner time he is slowly trying to eat to catch up on calories and then we realize we haven't reached out goal for the day. Every day. Sometimes he will surprise us and eat a lot of pasta! You just never know. With all the surgeries he has had, who knows what the culprit could be. His stomach is smaller now because of the surgeries as well. But what I do know is that it isn't ok for him to be 36 pounds being 4 ft tall and 7 years old. I took him to Nemours in Jax to see his old GI doctor. Some of his words were,"..we need to act fast..." which confirmed for me that I wasn't just being that complete dramatic crazy mother that many already think I am.;) I have been concerned over this for a while as I watched him not gain what I felt like was enough. In the last couple of months he has lost 3 pounds and that is when I decided we needed to go see GI again. We are going to do an emptying scan this coming Thursday and then an upper GI with the Bravo (which he will need to put under for) on the 28th. Camden is also going to need a gtube put back in. I would be lying if it doesn't make me a little teary eyed when I think of it, but I think it is more because I dread his little body being cut on again. I think the scar tissue he has scares me the most. And the anestesia. And the fact that he is older now and will remember things and be so nervous before he goes under. We will also go to ortho on the 23rd to do our yearly scoliosis check. (We skipped last years check up which I felt totally fine with, so he is due for one) Im sure things will be ok. Some wonderful things I am thankful for: He can run around. He is such a happy child. He is so smart and his reading is amazing. He is in 1st grade and has joined his siblings in the homeschooling journey on the Roell Homestead.:) His breathing has been excellent! He hasn't needed oxygen in 2-ish years and I don't see him needing it any time soon. His recent Xray showed his diaphragm patch still in place. Thankful. Thankful. Thankful. I do not feel getting a gtube is a setback. I think of it as a boost for his already good AMAZING progression! I can't wait to get my boy looking and feeling more healthy. It has been 3 years of a struggle and we just kept thinking he would eventually gain while we kept trying new ways to gain and new ideas. It just isn't happening, and now his weight is concerning and scary. I will post results for tests and surgery date.
Above is Camden getting ready to go hunting with his brother and then him on his 7th birthday with his buddy, Jase and his little sis, Avonlea in the back. I hope all of our fellow CDHers are doing ok. I haven't been in "blogland" for a while but look forward to catching (with those who don't use FB) up in here.

Thursday, March 20, 2014

Spring update! :)

Well, it's dr time again. :) we have had a nice break and Camden has been very healthy and still is. He is due to see his orthopedic surgeon to check his spine for scoliosis which is common in CDH kids. Our main concern has been his blinking. It is very significant and has been getting worse over the last two years. We saw opthalmology last week and his eyes are great so we are seeing neurology this coming Monday. I've thought the excessive blinking was neurological all along, but they always want you to check the eyes first so that part is done (and I'm thankful his eyes looked good especially with his momma and Nana's bad eyes genes!) So, we will be heading back to Nemours this month and next for some check ups.

Tuesday, January 28, 2014

Happy 2014

It's going to be a good one. :) Camden's Trach hole closure went well and is healing up nicely! He turned 5 on the 22nd! He was so excited about his birthday and was counting down the "sleeps." He is such a big boy. We are working on learning to read right now. He loves to sing and do his 100 piece puzzles. He EATS so much and loves trying new things as well. Finally gained a pound and is a whopping 31 pounds. ;) He has also stayed healthy all winter long which we are so thankful for. Other than the ENT post up check ups, we have stayed pretty much appointment free. It's been lovely. :) Enjoying him each and everyday. Love my Camden James. thank you, Lord.....

Monday, September 30, 2013

Same Old Butterflies...

The date is set for Camden's trach hole closure. Oct 30th at WCH with Dr Maddern. He has had a nice, hospital free, long summer but we are ready to get this done. Every time surgery is officially on the calendar, the random butterflies start then get stronger until the day of surgery. This is a minor surgery in comparison to what little man has been through, but it is still hard to know he has to go under again. He will go to the PICU to be monitored, then to a room. 1 night stay (oh thank God how I dread when we have to stay longer!) then home we will go. He will have to have little drain tubes for a few days as well, so we may have a couple more trips to Jax. I know he will fly through it. There are a lot of emotions for me when I think about this surgery. It feels as though I was just in a room with him on a ventilator wondering if he would ever breathe on his own. Here we are, almost 5 years later, and he is getting his trach hole closed. He did it. He breathed on his own and now that part of his journey is over. Still takes my breath away sometimes. We are so very blessed. He sure is going to look funny with out that little hole in his neck!

Tuesday, August 27, 2013

Doing well!

I was having concerns about Camden maybe reherniating so I took him to gville today for an X-ray. We were almost due to see Dr Kay's anyhow. X-ray was clear, I was wrong, very thankful! He has lost two pounds (down to 29) since gtube was taken out, so I am going to try to work harder on his diet. Tonight he ate a whole "abacoda." ;-)  He loves avocados!

We will go see ENT towards the end if September to schedule Trach closure. I didn't want him to have restrictions with swimming through the summer, so I have put it off. We did teach him to swim, but he is far from a strong swimmer, but we have had a lot of practice! With time he'll get there!

I can't believe my baby is a little over 4.5! Time seems to go by way too fast. Trying to enjoy him as much as possible without worry. So hard not to think about the what ifs at times, but I'm doing better. ;-)
thanks for caring for my boy. <3 p="">

Wednesday, May 29, 2013

A break.

It has been just that. =) A break for my little man. He has done amazing in the eating departnment. No gaining, but maintaining. Tall and exremely skinny. ;oP We are putting off trach closure. After his last surgery on his private area, I decided we were going to stay hospital free as long as possible! He has done well since then. He did get a tummy virus and had a few gagging episodes. Ever since then he has had a slight cough which I think is related to reflux so I am going to watch him and maybe think about getting him back on the reflux meds. Other than that he is well and I am thankful and just enjoy this blessing daily. I never take him for granted. Thank you, Lord....
Here is a recent picture with his new puppy, Scout!