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....

back to the nissen...again....and again....and again...

Went to Gville today to meet heart surgeon and discuss surgery plan. He feels it is better to wait until Dr Kays fixes the nissen due to risk of infection. That is the short version. =o/ So, tomorrow I will be contacting K's nurse to get the nissen surgery BACK on the schedule now that Camden is completely recovered from the cold he had. I now have to readjust. I was planing on the PDA surgery first. I'm mentally exhausted today, and I don't admit that much. ;o) Camden has been more on the lazy side for a while now, just not wanting to do what he used to want to do. The Dr said this could be caused from the PDA. I havent been wanting to push him, and Im not going to either. If he wants to be lazy, so be it. PDA caused or not, he is getting the break for now. =) The PDA does need to be fixed soon, especially with his history, but he still thinks it would be better to do GI surgeries after the heart surgery especially when there will be a foreign object placed during the PDA.

I did appreciate the Drs concern about Camden's low HR dips he has at times. He hadn't had any since before the ER trip ( and these low HRs are unrelated to the PDA heart issues is having) but he did drop significantly low  again the other night again.  He gave me a little card monitor and as soon as his HR drops, I can lay it on his chest and record it, then call it in to be recorded. So at least we can try to address those issues while we are waiting on the nissen repair.

He continues to do well tolerating tube feeds so was definitely was a soy intolerance! It has been wonderful to not watch him retch! He is actually tolerating 8 ounces, every 3 hours as of today was is HUGE for Camden. He has never been able to tolerate more than 5. He also gained and is almost 29 pounds so my protein/calorie packed blended diet is working. =)

On the other hand, the oral eating/choking has been AWFUL. Something was seriously lodged in his nissen to the point that nothing was going down. He cried and begged for food and for a few days and I had to say no to everything. Every time I would give in, he would immediately choke and it would all come back up. This is nothing new, but some days are worse than others. Today he got a few animal crackers down, so maybe things have shifted, but I was too scared to try. This is why we are redoing nissen. This has been his life for over a year now.

So we are back to the waiting game again. I have been working on not feeling impatient. I cant help the affects of the underlying stress like my hair falling out, or heart palpitations, =oP but I am trying to remember that it is all in His time.....

ER trip

I took Camden into the ER for one thing, and came out with unexpected new information. Not in the plans. Heart problems were never in my thoughts. 


He had another scary low heart rate drop the other night, so the next morning (after watching the pulse ox for the rest of the morning) I took him to Shands with my loyal hospital companion, my mom. =) ( Marcus would come in a minute, but my man works his butt off, has so much to do for our family so unless it is an emergency I tell him to stay in Jax to get his work finished! Love you and I thank u for that, hunny!)  They decided to monitor him, but didnt see anything wrong, which was to be expected. The only time his heart did this CRAZY low dropping (like in the 20s) is when he is in REM, which he never got the chance to do with vital signs taken and beeps going off all through the night.  So he had an EKG, which looked good, and then an ECHO. I waited anxiously for cardiologiest to come around and by 2 she was in our room sharing the latest.


THey found a PDA, which normally is detected/repaired during infancy ......but he will need surgery now.  Here's a brief description for my "unfamiliar with heart problems" people: Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.

In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

Oh! Guess what?? Im an "unfamiliar with heart problems" person too. I thought I didn't "do" hearts. I have to keep looking back so I can remember what PDA stands for! Camden supposedly had a great heart! Change of plans! I guess not knowing was a good thing looking back, (it wouldve been so much to deal with along with other issues) but on the other hand this should already be fixed. Especially by 3 yrs of age. Thanking God it hasn't done any damage ...that they can see of on the tests. Thanking God that I took him in and now know of this problem, although I felt pretty crazy up there.

The pulmonary hypertension reared his ugly face as well. THat was a word I NEVER wanted to hear again, but before the cardiologist came in, the assistants had came in and told me it was slightly elevated. Ok, normal in CDH, but it was supposedly gone in Camden and wasnt welcomed back. Im assuming the PDA is why it is back. 

So the low heart rates? NOTHING to do with PDA. So, he is wearing a holter monitor to record rhythms tonight while he is his own bed, in a deep sleep, hooked to a pulse ox! I also didn't think I would ever have to worry about him sleeping again.  

Maybe this was all a way to get me to go to hospital and find the PDA. I had no plans on going back to cardiology with the "ok" to do so last year! Im shocked and of course upset over my baby. Camden has enough surgeries to endure and didn't need another one. He has enough to deal with. I am a bit scared. PDA is considered one of the minor heart surgeries but a) if you are touching my baby's heart, that is not minor in my book and b) well, Camden's history says it all. But, this is something that has to be done and we have so much, so very much, to be thankful for. I am focusing on that and feeling very grateful for many healthy qualities of my boy! We will meet with the surgeon to discuss details in the next few weeks.

As for the nissen repair....that is now second on the "surgery list", although he just ate a pickle and a piece of ham and didn't choke. If the nissen unraveled itself, that would be nice. That would be WONDERFUL.

As for the retching over every tube feed...we are thinking it may be a soy intolerance. (he has milk allergy and has been on soy) I tested this out today with diluted juice and he did NOT retch. I should have know better and remembered that he could do this with soy, but honestly, I completely forgot being so focused on the mechanical things.  I almost didn't want to type this part out because I know things change like the wind with his eating issues, but that is what it is today. I would love it to be a soy intolerance!! 

He is getting over the sickness and is just left with a wet cough and on the mend. 

He wasnt happy going to the hospital but it was a good time for him to learn trust because I promised him there would be no hurts and of course there wasn't.  By noon today he was happy in the bed, making it go up and down, up and down, watching Yo Gabba Gabba, and demanding his Nana to do things. He thought he was a king. He also just told me he want to go to Wild Adventures and ride the dragons. He is walking around holding his heart monitor so it doesn't drag the ground. He is ok! =0)

Back to Cardio

Im not going to write out all my worries and concerns, but here is what has happened. Camden is only hooked to pulse ox while he is sick so I can monitor O2 sats to know when he is in need of O2. The other night the alarm went off and his heart rate dropped into the 20s before I nudged him to wake and his HR went up again. He was on oxygen, and sats did not go down, but scared me to death. Last night (well this morning around 340) I monitored him again, and it happened again. This time his sats were going down (he wasnt on O2) and before I woke him his O2 sats were 93 and his HR was 23. After I nudged him he was back to normal. Bottom line a HR in the 20s isn't right and we have an appointment Thursday morning. His heart has always been good and actually on the faster side, so this has caught me off guard. Also, I dont know how long this has been going on because he hasn't used an apnea monitor for mths now and of course I usually just do spot checks with the pulse ox machine.

I called Dr Ks office today to get some more tests ran before rescheduling the nissen surgery, but the cardio is first on my list now. Amazing how greatly your priorities change overnight.

On the mend

....is what Im thinking. He has had fever since Wed night, then last night the fever continued, his sats dropped, I put him on O2, and I rode over to our teeny tiny hospital and asked for an xray. We were out of there in no time, and they didnt find anything wrong with xray. ok, good...?

A few hrs ago the fever stopped, and sats started to go up so as of now he is off O2 and doing well. I will watch him through the night and if he drops again or starts with the fever I will be heading to Gainesville, but I think he is getting better.

So, this is what stinks about CDH. I can accept the fact that he needs O2 when he gets sick. He had severe respiratory distress, ect.... ect, but when a CDH child reherniates, (organs get thru the diaphragm up in to chest cavity again)  there are so many symptoms they may have or may NOT  have. Fever is one. It may JUST be fever. Or retching, (or throwing up for kids that can) tummy pain, constipation, on and on. Camden is also retching again.... Daily. =-/ Has been for weeks. We are still on a slow rate on feeding pump, and we are having to go slower and slower. So, is the retching again another "new normal" for him as well? He was doing so good?! Once again, I can accept these things, but not knowing when it could be reherniation or infection in the lungs is why we head to the hospital each time. ALSO there have been MANY parents that have shared with me that their child's reherniation was NOT seen on an xray. Also, Camden was missing most of his diaphragm, so his chances of reherniating are a little higher. So, this is why Im always feeling confused with this little stinker.

sick and surgery cancelled

So much for getting this over with, but Camden has had a continuos fever since Wednesday around midnight. So, surgery off and we will reschedule or I may do another upper GI and some xrays to see how things are looking now. Im full of mixed emotions, as usual. He managed to eat part of a pickle the other night which is normally never able to happen. This doesn't mean his nissen isnt still too tight, just makes me wonder and keeps me confused. He still is retching sometimes during tube feeds (he isnt able to throw up with nissen) over a small amount of volume. We are back to the feeding pump all the time, so I am able to monitor volume and rate. So the retching is bothering me. It's normal for him to retch when he gets full too fast, but not this bad. He has always been able to tolerate 5 ounces at a time, now gets sick over 2, and this is the reason we are back on the pump with a slower rate. So the retching is something that has started up again NOT related to the nissen, reason that I want to check things out again.

For those who were wondering what this surgery was for: The Nissen (there are a few types, but I'll just try to give the basic understanding as best as I can) is where the surgeon takes some of the upper part of stomach and wraps it around the bottom of esophagus to protect esophagus (kind of forming a flap?) from severe reflux, OR to protect lungs from aspiration. With Camden having severe respiratory distress as a baby plus severe reflux he definately needed one. He had the first nissen wrap done at 9 weeks old along with his trach and gtube surgery. Then he reherniated at 9 mths old (colon was growing through his artificial diaphragm.) and his nissen happen to unravel at the same time, so it was redone at that time his diaphragm was fixed. Camden never ate anything by mouth and then when he was around 2 he started to experiment with food and that is when I noticed something wasnt right. Bottom line this nissen is too TIGHT causing food to get stuck in it. Camden is then stuck trying to get it out of his esophagus which is awful to watch, especially when he doesnt have the ability to throw up. In this past year the surgeon has tried to stretch the nissen through endocopy twice now (to avoid him being cut open for the 4th time) which has helped a little, but it has been over a year and we haven't accomplished much. The concerns were reintubating him for each stretching and not knowing if the stretching would actually even get the job done. So, I have put of redoing the nissen until today......which has been cancelled due to the fever. =/ I still do not know what is going on inside his little body, but I thought if we fixed the nissen, (or tried, there is no promises with all Camden's scar tissue) at least that part would be accomplished.

I skipped details, but I hope the above explained it well enough. =)

Camden wants to eat sometimes. For this to happen, we have to try to get things working if possible. This surgery has taken forever to get on the schedule for different reasons. Maybe God has other plans, I dont know,  so we just wait for His guidance. Im the mean, time Camden is over all doing so well and I am beyond thankful.

Surgery is set.

May 25th. I still dont have complete peace about it, but I know I will. He is choking off and on, about every other day. I have to come to realize that this is effecting his future in eating and that this nissen needs to be redone. That's all for today, Camden wants to go in the pool! =o)

Surgery in June.

After seeing Dr Kays today we finally decided that the nissen needs to be redone. This was going to happen this time last year and the day before surgery, Dr k and I both felt it should wait. Now it comes down to this: We leave things as is and he is gtube fed and continues to choke when he DOES eat ( all along his aversions getting worse because he is tired of the choking..) OR we do another nissen stretching (dilation) which hasn't really helped in the past, we will never know when and if it WILL do the trick, and it always ends up tightening again....which also means MORE intubations, and MORE anesthesia. OR Dr Kays goes in and does the nissen over.

I am sick about this. I knew he would eventually have another major surgery, but it is here and I am sick. Sick that his poor little belly will be cut opened for the third time. Sick that he will be going under again...( sick that I have lost count on how many times he has went under)

Camden wants to eat so badly sometimes, so this is the only thing that will help if all goes well. So this is what needs to be done, right? Then there are all the risks that Dr Kays shared with me today. Nerve damage, coming out the same or worse after surgery. Like I said, Im sick about this having to be done.

Im already wondering if I'll back out again. It's been a year with no progress whatsoever, and I told myself that if a certain time went by, we'd think about the nissen surgery. I keep avoiding it. I really need wisdom, and that is what Im praying for. I need peace about this.

And then there is the retching problem happening again on top of it all. Is this just going to be Camden's life? I can deal with having to give him gtube feeds and being back on the feeding pump, but I need to know that I tried everything. I want to do everything I can for him. I want all the answers to every little issue he has, and I cant get them. But I want to try my hardest to find out every answer I can.

I feel like we've been at a stop for so long. He has come SO VERY far...getting better and better and growing faster and faster. Started breathing on his own, decannulated, off oxygen, started talking. Then he hit 2 and the eating became the "main" issue. 3 years ago eating wasn't even in our vocabulary. We were just trying to keep him alive. (So while Im so upset over things Im so thankful that we are here!) But it IS his big issue now and he isn't getting better. I am so up and down with it. I'm so used to a gtube to where I think it is normal at times. The only thing that reminds me of how bad things are is when he is choking because food is stuck in his esophagus. It is heartbreaking to watch him and this reminds me that we need to try and fix things. We are still on the CDH roller coaster and I feel like we arent getting off. No, Im not losing faith. I'm realizing it is what it is and my faith is what gets me through. I have my miracle. Just him being here is ALL I ever wanted in this journey since he was born. I have that. I still pray for healing for him, and over all Camden is doing much better than I thought, but besides a miraculous re- arranging of body parts, past surgery fixing, spleen growing, etc etc etc he is going to have some problems through his life. And I am thankful for our Drs that can help with many of those problems.

Yes, Im all over the place and am trying accept this surgery. I have plenty of time to let it sink in and I know that God will give me that peace. OR, maybe that nissen will finally decide to bust a stitch and work the way it needs to for my boy!! I'll take that too. ;o)

On another note....Camden finally gained weight! Im not sure how because I havent changed his feeds LOL but I guess the little height he grew helped add some weight. He was 27 pounds today. =)

Frustrated.

I really dont know where to begin, so I'll just be brief. I feel like I need to update my blog for myself, but I don't feel like it because I feel like I can't explain everything. =o( No one from the Drs office has called me. It's been weeks and weeks and Ive left a message for the past 3 weeks (and more before that) and no one has called. I dont get it. So, I made and appointment with the Dr which isnt until the 17th of April. I'll just drive 2 hrs to tell him that no one has called me to tell me anything. Not even to make another appointment! Not to schedule another surgery for his nissen stretching, or to even tell me they dont want to do it! I saw the Dr in NOVEMBER to discuss another nissen stretching. We finally got the upper GI a mth ago, and now it is MARCH. Am I being dramatic?? Im not acting like it is an emergency, I understand he has a gtube and CAN be fed, but 3 mths seems a little long to me and not to call is just rude. And that is my main frustration! K, done.

In the mean time, Camden can't eat anything that isnt baby food consistency, which is hard for him to gag down with his aversions. He loves chips, ham, pb sandwiches, pickles, all the things I have to say "no" to. Also, for the last 3 weeks he has been retching. Again. =o/BUT, I know he isn't getting fed too much, (the reason for the retching episodes LAST time) and we are actually back on the pump with each feed being a slow one, so something else is going on. He hasn't retched on a slow drip since his diaphragm reherniated so I hope that isnt what is going on. His breathing is totally fine, but it was fine when he reherniated last time as well. His bms are also good, so I'm not concerned to where I think it is an emergency, but he will definitely need an x ray when we go in April.

Other than that he is talking like crazy, and is my sweetness!!! I find myself having short crying spells over him each day. I guess with all the food/eating issues. He is so good about it, even if he chokes. He just smiles afterward and tells me when it is "all done" He teaches(or reteaches!) me things each day. "This too shall pass...." I think I need to get that tattooed on my arm. ;o)

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.