Noah had a long day up at Childrens for clinic visits. He was seen by ENT, GI, Pulmonary, and Speech... in other words, CHOWDA (Childrens Hospital Of Wisconsin Digestive and Airway clinic). For ENT he had a scope done to look at his vocal cords. Compared to his last scope done when he was inpatient, his vocal cords have greatly improved and are working great with no gaps! For GI, he received a new g-tube design. Hoping this new design keeps him from leaking so bad. It is also more flush with his belly so it does not stick out so far... MUCH nicer! He is also being started on a new med that triggers the nerves in his stomach to expand the size of his stomach. This is being started to help with the vomiting pattern that he seems to have but also to kick start his appetite. For pulmonary, we discussed his breathing and about his O2 use. She told us that she wants us to wait till June before we start giving him breaks from it during the day. She said that as he gets trunk strength back that his breathing will get better, lessening his need for additional O2. So I am thinking about a year more of him being on oxygen. He will be getting an airway study done within the next 2 to 3 weeks as well as a swallow study for Speech. What a LONG day it was. All in all, it was a good clinical visit.

I am totally ready for the weather to warm and the sun to come out. It will sure help Noah and I feel better. We are both sick with some kind of cold/sinus infection. We are miserable. Noah is on a 10 day antibiotic. Pray that Aaron stays healthy.
Noah has been home for a month and a half now. His strength is slowly starting to come back. He can sit up unassisted again, but gets tired after about 30 minutes and then starts to lay down again. He is so silly too. He loves music and loves to dance to it. It is so fun to watch him "dance".
He is still on a continuous drip for feeds. We are working on adjusting it so he can have breaks throughout the day so he can have a little more freedom to roll around.
The Diazapam is almost half done with its ween. He is doing good with it coming off. Next month we go in to have Noah's botox and serial casting started on his right foot. Praying that it will help him.

I can't believe that I will have a TWO YEAR OLD in 2 1/2 months! I need to start planing his party :)

Please continue to pray for our health to return quickly. Thank you.

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.

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!

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.

Last night, my little family had the BEST sleep in nearly 4 1/2 months! Why you ask? BECAUSE WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yesterday morning, I waited with MUCH anticipation for rounds. During rounds, they asked, "Does he have a fever?" - nope, "Is he tolerating his feeds?" - YUP! "Are you ready?" - SO READY!, "Okay, let's get you out of here!" - (Everyone's reaction)YESSSSSSSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Dr Mitchell, Noah's CV surgeon, came in to celebrate the great news with us. I signed the discharge papers, and we were ON OUR WAY! Let me tell you though, that morning before rounds took FOREVER!

SO... Noah is now home. Loving it too! He was a little cranky and very tired when we got home... only wanted me to hold him. But now, I think he realizes that no one here is going to bug him or poke him or prod him at all hours, day and night. He is LOVING his cousins and his cousins are very excited and happy to have "their baby" back. It is so sweet to watch them play with each other. Noah's strength and endurance isn't back to what it was before he was admitted... the boys are used to him rolling all over the place and sitting up on his own so it has been a little confusing to them as to why he is just laying there and barely rolling to his sides. But they love him and play with him just the same :) Benjamin even told me that he feels bad for Noah. I asked him why and he told me that he feels bad that he still has doctors. I told him that some day he won't need to see the doctors anymore. Then he said, "I am happy he is home."

Jonas is way excited too. Aunt Amanda was holding Noah while he was sleeping and Jonas comes over and sits on the arm of the couch and starts petting Noah's head. Then he said, "I just love Noah" and then he laid his head on his. So sweet :) I love how they love each other... it melts my heart.

Thank you all for your continued prayers. Please continue to pray for Noah, as he still has some recovery and rehab to go through. Prayers to keep us at home and healthy! And even though we ARE home, I will still update his blog once a week to keep you updated on his progress and how happy his life is :)

Last night was extremely difficult. Noah spiked a fever that would not come down with the Tylenol or Motrin. He was becoming dehydrated due to his vomiting. Last night they tried 4 times for an IV. At first they got a vein so they drew cultures off of it before they secured it. But before they could flush and secure it, the vein blew. We had him on Pedialyte all night in hopes to keep him hydrated, but that didn't seem to work... vomited ALL NIGHT LONG. He was so miserable. Couldn't sleep at all. Cried all night. Wanted me near but then pushed me away. I tried to hold him in the rocking chair as this has ALWAYS been the cure all, but he didn't even find THAT soothing. I cried with him. It hurts that I couldn't find the right thing to do to help him feel better. Then FINALLY at 5am his vomiting stopped. At 6am he started asking for water and by 7am, was finally sleeping. What a rough night.

Today has been better. His fever has been gone since early this morning. A little more happy and sleeping a lot. I don't blame him though.. I just predict tonight will be a wakeful night... but a happy wakeful night... at least on his part.. this momma is going to be very tired.

I can't remember if I mentioned this in the last post, but Noah had thrush a few days back and has since been getting nystatin. His mouth looks SO much better. The cultures they drew last night are positive for some kind of bacteria. Not really sure if it is a true positive culture or a contaminated culture. They re-drew cultures a couple hours ago just to be sure and was started on another antibiotic.

::sigh:: this weekend has been a REAL test of my patients... I can't wait till this is all over and we are a family who lives at home once again! Please pray our night is uneventful, and despite my prediction, a RESTFUL, sleeping night! Thanks!