Feeding tube is officially GONE!

yes. A little over a week ago. It happened extremely fast for me. We went to see Dr Kays for a few month post op check up and I told him how well Camden has been eating and that although emotionally I was ready for the gtube to come out, I knew he wasn't going to ever need it again. So, we took it out! Camden did very well with it. I thought he was going to have a hard time dealing with this piece of plastic that has been "on" him for almost 4 years all of a sudden missing. He asked for it for a few days. A couple of times wanted to try and be mean and say, "Im not hungry! I want my tube back in!" (BTW- he is so stinkin' funny and cute when he tries to be mean and it lasts for all of 2 minutes) (What is bothering him is the granulation tissue that is left form the tube. he says he wants the dr to "cut it off" so we will deal with that later down the road.) Now, me on the other hand...I would well up with tears here and there through out the following days! This tube that his life has depended on for so long is gone. While I was so thankful for his progress, it just seemed so strange. He has only been truly able to eat by mouth for about 4 months and I was just adjusting to that. Then it was the cleaning out of med supplies (throwing away all his used equipment, and donating all the new) really hit me. I haven't known anything but Camden with medical supplies. He only has O2 equipment now, as needed. WOW. I am now adjusting (like this blog is all about me lol) and am so very proud of my little man. He tries everything and looks forward to eating. No more crying over food, he fought through the aversions. No more gagging, choking, retching....we finally know what was causing the issues it is fixed. (thank you, Dr K!)

It has been a long, emotional 4 year feeding journey to get him here, and we did it. He did it....

Thanksgiving was amazing. He enjoyed a plate of Thanksgiving meal for the first time and wanted to know what everything was with a huge smile on his face!

Next surgery is Jan 3 for trach hole closure and he's getting the "boys" brought down where they need to be. After that he will be 4 on the 22nd and we are praying for a calm, hospital free year!! Now, that would be nice! =o)

Thank you, Jesus.....

Cardiologist follow up in .... ONE year?!

Yep. =o) Heart cath went great. Camden recovered from anesthesia for several hours afterwards then was walking around as if nothing happened. He said, " I'm fine, momma!" 
We did find out the his pulmonary hypertension is mild. I am ok with that and was just thanking God is wasn't severe!

The odd part, (but good) was that the PDA was too small and insignificant to repair! Dr said he could have tried if I wanted him to but said it wasn't worth it, so I let it be his call. He is 100% positive it isn't causing any problems, and I trust him. He said he will see us back in one year! 

This time getting him put under was awful. The Versed wasn't working and he wanted me to take him back to the OR. He fought and fought and we all had to hold him down to be put out. I almost feel guilty that I am so tough about this. After 15 plus surgeries I have had to buck up, otherwise I'd lose it  everytime I had to give him over to the OR, or watch him recover from surgery, or see him scream over an IV. (WOW he hates IVs!!-that was the hugest issue this time around!) Anyways, I was just thinking about this the other day as I watched him recover. I did have a 30 second break down the following day, but I recover from those faster these days and I dont have as many. God's Peace.

So for now, we have some appointments set with ortho, ENT, and urology and hopefully he will get a nice couple of months break from the hospital.  

Heart Cath This Tuesday

Well, Tuesday is the big day. I am focusing on the fact that this is a heart cath meaning less time under anesthesia and only ONE night in hospital! Camden and I have been already talking about it. He is asking about "hurts" and IVs and if he'll be able to watch certain movies again. I tell him it will hurt a little, but daddy, mommy. and Nana will be by his side! He is so tough but I hate that he has to deal with this! Goal for Tuesday is to measure that stupid pulmonary hypertension that decided to sneak in on us again and to plug the itty bitty hold in his heart valve. After this we have ONE more planned surgery!!! Almost there! I have appointments already set up with ENT (trach hole closure) and urology (bring testes down) so we can try to set things up in JAX for both procedures at once.

As for eating! WOW! He is eating A LOT. We were laughing so hard the other night because we actually had to tell him "no more" because we thought he was going to bust. ;oP I never thought I'd have to say that to him. He'll eat a ton, then graze a bit. We did have to go to some night tube feeds because he was obviously losing weight, but that is ok....not even a worry in my mind about losing that tube because he is doing awesome in that department.

Please pray for my little man but also for my dear friend, Shannon's baby Madden. He has a mito disease and is having some breathing and seizure issues. I love this family dearly and am hurting for them as they travel this journey and they need prayers. Thank you all <3 p="p">

Um, OKAY! I am going to say it.......

We have an eater. After 3.5 years of tube feeding, my son is eating. I havent given him any tube feeds this week. I almost can't type that. He is skinny, and Im sure outsiders that do not know us or our situation will judge, ;oP but that is all good, because my son is eating.  You know, with his mouth? He is eating pb&js, eggs, pasta, chips, rice, beans, on and on. He is still a packer, but he realizes this and is TRYING and is DOING it. I may need to give some tubies down the road if he starts to loose too much weight, but that is ok, the tube is on its way out & Camden reminds me of this daily. Today it was, " Im gonna get that tube out and your gonna throw it in the trash." Amen, lil man.

5 week...ish post op =o)

Camden's incision looks perfect. I haven't blogged because I have been busy and for a few weeks I felt bummed and didnt want to post bad news. He had been choking pretty badly up until a week ago! He is now eating and choking periodically, but so much better! I believe the surgery was a success for the most part and the choking is caused by his esophagus being "smashed" for so long. Well, that is what MY thoughts are on it, but tomorrow we will go see Dr kays and hear his. ;o) Now that we have the physical part "fixed" we have to start tackling the emotional/mental part. Any parent that has had a tube child will understand this. 2 years of NOTHING in the mouth, never learning to suck in those beginning months, then eating off and on this passed year etc, makes a difficult road in learning to eat properly. He wants something, then he doesnt. He cries. Then is happy about the same food he was just crying over. Then he packs it all in his mouth and cant swallow so mommy steps in and he is screaming that he wants to do it, because he can feed himself but packs the food all in at once. But, we are moving forward and that is what matters! Today I was thinking back to the videos I have of him screaming and crying at the food on his highchair. We've come along way!! I am thankful....

Tomorrow after we see Kays, we will see our new cardiologist, Dr Fudge (have I mentioned we love him?) for pre op for the heart surgery. Yep, I have scheduled the PDA repair for the 18th of September! I have been so ready to get these two surgeries behind us. We are almost there! Tonight I had to explain to Camden that he has to go see Drs and that there wont be any "hurts" this time. He sighed at me and said, "Mom! Im all healed up" There is definitely something wrong when you have to tell your 3 year old that he wont need an IV tomorrow and then watch him be so excited about that. Maybe the medical field is in his future? ;o)

He lost a few pounds but looks ok! He did have another extremely low HR last week. The cardiologist had told me to not startle him so I didn't. That was a long 2 minutes for me! =o( But after alarming 16 (yes 16 for the HR) he recovered on his own and it shot back up. Still not understanding all this, but oddly, it may just be Camden's normal. =oS Like I said before the low heart rates, according to the Drs are NOT related to teh PDA. I am trying not to dwell on them because they arent happening a lot, but it's in there...ya know, in the back of this mind of mine....mommas just cant help it.

So! Moving forward! =) Thanking Jesus for my little man who brings me so much JOY....

Home!

...and so happy to be here.  Where to start...I saw a few CDH momma's with concerns when they heard about Camden's situation. This was rare and we were all surprised. First off, those that have followed my blog know that Camden has been battling oral feeds since he was 2. (well, his whole life but for other reasons. I say 2 because that is when we found this other problem) He is now 3.5. We have blamed the nissen being too tight, and have had several dilations through endoscopy which didnt help much. It has been extremely bizarre to say the least.  He would eat for a few days, then choke for the next week, and that has been his life for the last year and a half. We started to notice this when he finally decided try something orally when he was around 2. Basically he has been all gtube fed during this time and what he did eat by mouth (that actually made it through to stomach) was a little extra calories and he is still a skinny head. I was asked about symptoms and I have already explained a little about the choking. Food would actually come back up undigested, so I knew it wasnt hitting any stomach acids. He also cant throw up with the nissen, so I knew that it had to be esophagus or nissen related. (but I was wrong- it was actually around the esophagus but you cant see that with endoscopy of course) he also had random, strange sounding hiccups and a reflux-like cough here and there, (though not bad) but that could be related many things!
   So! Friday was the big day and I was not feeling 100% confident in this surgery. I knew I had a wonderful Dr, I just was so scared of him being opened for the 4th time. (BTW this was Dr Kays first time inside Camden. He has done other minor surgeries, but never open, major surgeries. He didnt have Camden at birth (but he had awesome care at WCH!!) Dr Kays talked with me before hand and said he needed convincing as well, which didnt help me be anymore convinced. =o/ Off Camden went to the OR and he was so brave and never cried. (Isnt that one of the worst feelings? It doesnt get easier watching them be taken away) I got a call not too long after from Dr K telling me that he had done an endoscopy and that YES! this nissen was way too tight and he thought he'd put me at ease knowing that we were doing the right thing. 
   Surgery was taking too long. Way too long for just a nissen. I was trying not to panic. Finally got a call from a nurse telling me that they had found other problems and that they were starting the nissen at that time and that Dr Kays would tell me all about it after surgery. =0/
The nissen was NOT the problem.  It actually looked ok, but he DID redo it leaning towards the looser side, just incase it was a bit too tight and we didnt want to take any chances. The problem was where gortex (his fake diaphragm) had been put around his esophagus during his last diaphragm repair to re-enforce that area to prevent any organs from trying to get back into chest cavity. What happened is that it was squeezing the esophagus causing food to get stuck in that area, totally causing us to think it was the nissen being way too tight. It was just something that no one would have known until they were inside. Wow. So the surgery definitely needed to be done!! Thank God!
   I knew these surgeries weren't going to get easier the older he got.  The last few days have been so very difficult. He was scared of everyone all over again and screaming when people walked in. Just as he was starting to get used to all the routine stuff today, we left. =0P He got an appetite back yesterday and we had to say no to food, which led to crying, which led to pain. The gas was so bad and he would just cry and cry. I was thankful for the gtube to help relieve it. Watching him hurt is just heartbreaking. I just kept telling him Dr Kays fixed him and that he was going to eat with his mouth one day! oh, and the IV flushing.....did anyone hear him screaming?? =oO
   Today is post op day 4 and we are home. They wanted to keep him another day to watch him eat and that was silly. I told them I can do that here. He is getting back to himself and walking all around. I just give him Tylenol as needed because he is really doing great with the pain. He only needed O2 for about 24 hrs. I was so worried about him being under that long and he rocked it. He is  Mr Grumpy pants a lot right now, but he is allowed to be. He told Nana and myself several times to "Go away." =0p Love this kid and am so grateful that he is home with us tonight.  Feeling extremely blessed. 
  I have him on a slow feed drip and I am going to keep him on soft "tastes" but he is already fighting me for things he shouldn't be eating yet. Gonna be a long week of saying "no." Now, we wait. We wait to see if things work the way they are supposed to these next few weeks. We wait for him to heal and get ready for his heart surgery. 
  Hope I explained things well enough for those who were curious. Feel free to FB message me if I left something out.

Thank you to all who have prayed for our little man...

and thank you, Jesus.

Surgery tomorrow

So the waiting is almost over, but here starts that pit in my stomach.  I was at complete peace about this, but here it is the day before and I am wondering if "we should wait" or "maybe it will stretch enough so  he can eat properly" etc. My main concern is how he will do with this longer surgery. He has only had really short ones these passed 2 years. Im worried about his little lungs and hate that they have to go through more stress again. His body has been through so much and I just want it to all be over for him. I hate that his CDH scar has to be cut open again for the the 4th time, knowing that he will need to be cut on again for the 5th time someday in his future. I know I have to take one day at a time but you cant help thinking these things. I do this every time. He has actually been getting a little bit of food down in the last few days, but he has done that before too.  Ugh. Anyhow, surgery is on and I will call tonight for a time.

I have to return heart monitor. The 30 days are over and he only dropped (super low) once. I am not even sure if I was able to record it properly, but hopefully I was able to get the tail end. Like I said before, when he is startled his heart rate goes back up quickly. So, basically all that has come out of this odd heart issue is me worried when he goes into really deep sleep, therefore Camden being back on a pulse ox every night. Again. =/ He has done this dropping before 3 times in a week, 3 times in a month, and then once this month. So, I don't know when he is going to do it but I do know that is scares me to death when he does. So, back on pulse ox. His O2 sats have been a little off as well, so I need to watch those anyway....but that is another story for another day.

He is looking fuller and healthier with the blended diet. Pain in the butt sometimes with clogging and getting the consistency just right and sometimes we are both wearing it, but it is working for him! =)

So if you come across this blog post today, please say a prayer for my little man! Thank you so very much....