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.