Alrighty, the appointment yesterday didnt go as I had hoped. They ended up not being able to do much. They gave me another number to set up another appointment with another specialist. Today I set up an appointment and he will be seeing Dr. Meyer Monday to decide one of three options. One, the surgery will go on as planned because the phlegm and vomiting issues wont hurt the surgery( although the nurse I talked to today said it might worry them). Option two, she said once he sees him Monday he may want to wait on the surgery until they find out what is causing Johnny so many issues with the constant phlegm for three months, issues swallowing and vomiting up so much food. Option three, the nurse said Dr. Meyer might find the issue on Monday and may want to add a surgery on the 7th with the other two surgeries he is getting. She said there are many different options and we wont know which path to take until Monday rolls around. As far as Johnnys feeds go we have been on a schedule where ever 2.5 hours I get up, set his food and machines up then start the machine. Thirty minutes later I stop it and let the food settle for thirty minutes and then another thirty minutes later I restart the food to give him the other half and after that thirty minutes is up I turn it off, shut it down and put it all away. I have been doing this schedule for quite awhile now and as you can imagine, starting feedings every 2.5 hours and for the next 1.5 hours getting up every 30 minutes through out the night and day are very tiring. My parents are amazing and help out where they can but they both work full time so they are not able to baby sit until the weekend. So going through the week days with very little sleep and what I do get gets interrupted with his feedings and his machines constantly going off giving his sats .. It just all as taken a toll. I have been getting sick easier and well doing this as a single mom is hard. I was trying to prevent Johnny from having to do over night feeds ( where he gets fed through out the night at a constant set ML per hour). Speech had told me early on to prevent that for as long as possible in hopes something will click with Johnny. Unfortunately, I have been doing this schedule for too long and he seems to be having more set backs due to this phlegm so I am going to have to start doing the over night feeds because I realized at this point this is what he needs and although I put myself last with Johnny it was reminded to me yesterday that I wont be any good to Johnny walking around like a zombie or getting sick constantly. Plus when the specialist gave me the new feeding schedule yesterday they assured me this will not be long term and that we may see serious strides once Dr. Meyer finds the issues causing Johnny so many troubles. With all the vomiting Johnny is still 14.3 lbs and 25 inches long. Developmentally he is doing awesome and once he can hold more food down he will start gaining more. This week since Johnny hasnt been feeling well we took off all appointments. I will keep you guys updated through the week but I wont have any real answers until Monday. I hope you all have a wonderful night, be safe everyone and thank you for the continued prayers !
Posted on: Thu, 01 Jan 2015 02:26:51 +0000
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