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)