Thursday, March 24, 2011

Clinic appointments update

Yesterday, Noah had 3 different appointments at Childrens. Our first stop was with Rehab. The checked his joints and muscle tone. They asked how he was doing with his therapies and what we were working on. I had them look at his right foot because he has had horrible foot drop ever since after his surgery. We have been having almost no luck getting his foot back to neutral position. The splint we have been using doesn't seem to help all that much. The looked at his foot and checked his range of motion. Their solution is to do Botox injections into the muscles to help relax them. Then they will do serial casting. So in May, he will get his first Botox injection and serial cast and we will have to come back once a week to have his foot re-cast for up to 4 to 6 weeks. We also finally have a weening schedule for his Diazapam.
Our next appointment was with Special needs. We went over meds and such. We made sure we had all our follow up appointments. I really LOVE that Noah is part of this program. It is great to have others advocate with and for us. It gives us a breath of fresh air to know we don't have to go at this alone. They also ordered a chest x-ray to make sure that his congestion was not in his lungs. According to the x-ray, his lungs are actually better than his previous one! Praise the Lord!
Our Last appointment was with GI. This appointment was made because of the 2 pound loss last week. Although he has not vomited in a week, his weight gain didn't show the greatest improvement. Noah has a home care nurse visit tomorrow and we will see if our adjustment in his feeding plan has been the trick. We also we told that some patients with MIC-Key buttons will be getting a new button design that will help with g-tube leakage and is more low profile. He should be getting his new button next month.
Thank you for your continued prayers. Please pray that Noah gains weight and we can stay away from another admission.
Saturday, March 19, 2011

Almost a month!!

This coming Wednesday will be a full month that Noah has been home with us! It is almost strange to say that it is almost like this last hospital stay was ages ago. It is great how quickly my mind has put it in the past and we can get on with our lives at home. While things have been great here at the home front, we have had quite a few scares and concerns. The other day, for instance, my sister and I were in the kitchen making dinner. I heard Noah cough like he had just thrown up, so I went out to the living room to check on him. He looked up at me with a huge grin on his face but something was different. He did NOT throw up but as I quickly looked him over I had noticed that his hands and feet were blue (like 'blue baby' blue). I started freaking out and ran to get his pulse ox but by the time I got it on him he was already starting to pink back up and his O2 saturation was in the high 90's. After cardiology had called back, they said it could be that his cough could have caused his blood to shunt across the VSD. They were happy that the blue episode did not last long and that he recovered from it on his own and that he did not drop his O2.
The other concern we have had this past week and a half was how much Noah had been vomiting and his weight. In a week's time, he had lost 2 whole pounds. In a toddler his size and condition, that is HUGE. He now has a GI appointment on Wednesday. But in the mean time, Noah's Special Needs coordinator and I came up with a feeding plan that we thought would help with his vomiting so that he can get the fluids and calories he needs. So... instead of having him on the feeding pump 24/7 at 39cc's an hour, we altered it to run for 22 hours a day at 42cc's and hour with his 2 hour break between 1am and 3am. So far, this has been the trick! Yes, I lose even more sleep over this but I am willing to do and try anything to keep my boy home and healthy with me! I am so glad that this new plan is working! Thank you Gwen for helping me!!!
Noah has developed a congested cough over the past couple weeks. The vest treatments are helping though. I have even tried deep suctioning him and that has helped a little too. Yesterday, I had Aaron help me with suctioning and my little nephew came in the room to watch. After the first pass, Jonas (he is 2 and 1/2 years old) looks at us with a very serious face and said while shaking his head, "I think that is enough, guys" LOL he is so cute! He loves his little cousin and is sometimes protective of him. Such a sweet heart. But his expression and the way he said it was so funny!
Aaron and I are in the waiting process for our apartment. Every once in a while, I start day dreaming about living in our own place. I picture Noah's room and how I want to arrange his furniture. I can't wait!
Wednesday, March 9, 2011

update from home

Noah has been home for 2 weeks already! He is doing great and starting to get back to all his normal, silly, mischief making activities. We are still dealing with him vomiting more than usual, but they are not concerned unless he is loosing wight. He is still gaining which is great! We are just going to have to deal with the vomiting for a while.
His speech is coming back... he now says 'mom mom' all day and recently has started saying babababa again. Today was even the first time since before his surgery that he has eaten anything by mouth. It came out of the blue, too. He saw me eating a peanut butter sandwich and seemed really interested so I put it up to his mouth and he actually tasted it! Then for dinner we were having fettuccine alfredo and I mashed up some noodles and added a little more cream cheese and he LOVED it! I am so proud of him! I was really worried it would take a very long time to get him to take ANYTHING by mouth. Praise God for taking away my worries!
Noah is now getting his PT and Speech therapy once a week as well as his home care nursing. So far he is doing great with them.

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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Me and my boy :)

Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

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