Well we are going "natural" as in seeking natural alternatives to help us out with Wysdom. We had three appointments spread between Monday and Tuesday. Monday we spent the morning with Wysdom's pediatrician. He got all of his usual stuff done and then his round of RSV shots. He also got his g tube peeked at. Tuesday was a bit more packed. We drove out of town to see his ENT and later that same day at the same hospital saw his Pediatric Surgeon. Both appointments turned out to be very short and really did not provide any of the answers that we were looking for.
For the ENT appointment we were getting his ear tubes checked and also asking about what could be done about his poor sleeping patterns at night. We were basically told that nothing really could be done now. Wysdom was already agitated after the ear check so the ENT could not do much at the time. We told him our concerns with Wysdom's breathing and trouble sleeping. He said that really the only option would be surgery to remove the tonsils and adenoids and that is not our best option now as it is quite a hard surgery for little ones his age to go through. The other option was steroid's and he really doesn't believe they are all that effective and absorbed properly. So.....we are left to deal with his breathing issues on our own for now and if it continues to call back. We are guessing that it maybe sleep apnea and a combination of reflux. So we are going to look at the reflux issue and also have a meeting with our OT to look at alternative beds.
Second on our visit for the day was with the g tube DR. He looked at the tube and said he thought it looked good. I asked "At what point do you remove a g tube if there is continual infections?" He said that have rarely ever happened and that is not really an option. So "What can we do to prevent this?" He said to make sure that we don't allow the g tube to be pulled our caught on anything. "I don't allow it and we are very careful" was my reply. He also mentioned that it just could be Wysdom's flora on his skin and that he also may have a weakened immune system.
So here is where the natural part comes in. Julian and I talked and thought that yes maybe his immune system is low and he can't fight of these infections or heal properly. So we started him off on Probiotics and also a vitamin supplement. We are also going to try to get him off some of his pediasure feeds and move into real foods. Not sure how we are going to get there yet. He eats solids pretty well just in small amounts. So we will have to figure out how to make him hungry and lessen his pediasure intake so he can eat solids. All of you that have feeding issues know what I am talking about I am sure and you know that it is not that easy. However we must try. Overall the g tube is looking okay. I asked about using natural oils for the tube and the doctor said I could go ahead and try it. I just have to figure out what it would be. We are more than likely going to go to a ND for Wysdom to help us support him the best we can with the right products.
Not much else to report since this week has been taken up by medical appointments. I did manage to drop and drag Wysdom's favorite toy through the grease in the parking garage. All Julian and I can do is laugh. Poor little ducky!!We are living in a world of "organized chaos" right now and operate like a well oiled team of shift workers. He does his shift with the children while I sleep and vice versa. All in all we are making it work or our system is working for us. We sometimes struggle but we have the best two little motivators here with us.
We are so thankful for both Blyss and Wysdom. Wysdom graced us today with his swinging in his bouncy chair while clapping his hands to the tunes of Black Eyed Peas. Blyss on the other hand entertained her self using our new massage chair that we got for Christmas. When I came back from the kitchen she sat naked and crossed legged in a yoga pose in the massage chair. Let me just say I almost spit out my food. I had to contain my surprise and laughter. She told me she couldn't feel the massage with her clothes on. There is never a dull, boring moment over here:)
9 comments:
wow, what a full two days you had. i hope the natural thing helps:) when max was a newborn he had a hard time sleeping he snored a lot, his dr. recommended sleeping up right in his car seat, it helped, but i think maxs thing was more with his tongue but it did help, i have heard the ent say that about waiting for tonsils and adenoids removal being better to wait till they are a little older than our little ones. thanks for the update post on wysdom:)
Leave it to kids to brighten up even the darkest day:) Very cute Blyss! I hope all goes well with your "au natural" search! It's so frustrating when we don't get answers (expecially those we want or need). Keep your head up Sasha, tomorrow is another day:)
One of my all-time favourite poets is Rumi. He has a saying, "Wherever there is a pain, there goes the remedy." I think that trying a more natural approach with Wysdom, by drawing on the healing arts that Nature hands down to us is not only more in keeping with your personality, but will ultimately help you to feel like you are actively participating in your baby's healing. You are the world's best mother, Sasha. I am in awe.
I thing going the natural route is a great step in helping Wysdom stay healthy! I give all my kids probiotics and a dha supplement. Goldie also gets a vitamin supplement. The breathing/sleep thing can be very complicated. I think its usually a combination of things that keep them from getting a good nights rest. Its taken us a long time and lots of trial and error to figure out what it takes to get a good nights sleep around here!
Other than oxygen for the apnea, my suggestion would be to elevate the head of his matress and put a rolled up washloth under his neck to push his jaw forward when he sleeps. Those are some tricks to keeping his airway as open as possible. Also, if you are holding him and he is sleeping have him lay belly against your chest with his head resting on your shoulder. good luck
Will he eat yogurt? Our nutritionist suggested that for Aubrey, especially when she is sick to help balance things. I usually just give her vanilla.
Don't stop looking for answers. Be strong, you are his advocate and no one else is going to look for answers.
Have no feeding tube experience but we have had issues with reflux and sleep apnea and thought I would share...but Wysdom is younger. My son, Evan, had obvious apnea when he was about 18mos. old. We noticed it when we were on vacation at the beach and sleeping together, he would pause breathing, then change position and start breathing again. The dr. tried him with a steroid nose spray and it did help him. It takes a couple of weeks to reach maximum effectiveness, but we were able to not have surgery. When he got to be about 4 his tonsils were very large and we actually scheduled surgery but had to put it off for several weeks. When we came back to recheck they had shrunk back down some and we decided to wait and see again. He's 13 now and never had to have them out. He does not have Down syndrome. Jessie, 8, with DS, has never been a great sleeper. We felt that she had reflux when she was an infant and she took Zantac, which helped some. She changed meds. when she got older. She also had ear issues but we could never be sure if the two together were all the cause of her restless sleep. She was 5 or 6 when she began to have very obvious apnea, which pretty quickly became to a point that it really scared me and I got no sleep until she had surgery. Before surgery, ENT dr. felt her tonsils weren't all that large but that her mouth was small, but felt her adenoids must be large for the difficulty she was having breathing. We left it that for sure adenoids would come out and he would decide about tonsils once he saw the adenoids (during surgery). He decided after seeing the adenoids that he believed they were large enough to possibly be the sole cause of our problem. He took out only her adenoids and she has not had an obvious apnea problem since she recovered from surgery. I was relieved as tonsillectemy is much tougher and scarier surgery than just the adenoids. I did worry that she might eventually have to have the tonsils out...but so far so good, and that's been a couple years. She still isn't a model sleeper but better,and has no obvious breathing issues. I've read a study that says even kids (with DS) whose parents notice NO sleep abnormality have a huge percentage that turn out to have apnea when they have a sleep study, so I wonder if we will end up doing that later.
I know Wysdom is much younger, but just in case there was anything in my story that might help, I wanted to share. You might give the nose spray a try, I don't think it could hurt, it didn't significantly help Jessie, but it did my son, might be worth a try. Thinking of you,
Josette
So sorry you are still experiencing problems with the g-tube. Is Wysdom going to be getting a mic-key button any time soon. It might be easier on him. Also our ENT keeps asking me questions about Lily's sleep patterns but I haven't noticed any problems so far. Sleep apnea is such a complicated and serious problem. Lily is also on steriod nose spray as well but we just started it so we will see how that goes. As for the natural stuff I think it is great! More power to ya girl! I'm sure you will share all that you find with us. LOL!
you sure are busy. hope all goes well with going natural. Im sure it will.
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