Healing

Will is doing great. He is eating like a champ. The button site is looking pretty good and healing nicely. It is still a bit red but it is looking good. He is crawling around like nothing ever happened!

Thursday night he slept through the night but last night he was up several times, not sure what that was about. I hope that he decides that sleeping through the the night is the way to go!!

We have a birthday party to go to today, should be fun! I think it might do us all some good to be out and about today!!

We are home, again!

We got home around 11am this morning. They wanted to keep him overnight and monitor him. He did great and is feeling alot better. He was running a low grade temp, and they were fearing an infection. But all is looking well. He finally went poop, which I think was causing alot of his discomfort. Anyway, he is doing good and happy to be home with his sister! I think Caroline is glad that "Cookie" is home too!

I hope that the night goes well, I will let you all know how it goes...

Will is back in the hospital...

He was up all night in pain and this morning his stomach was hard and sticking out. I called the surgeon and they wanted me to take him to the ER. In the ER they did 2 x-rays and everything looked fine but they are wanting to keep him overnight for observations. Right now he is not able to eat anything (he is not very happy!!) I came home to get Caroline while Josh stayed at the hospital with Will. We are all going to be at the hospital tonight so that we can have supper together then Josh and Caroline are going to come home and sleep. Josh will be working from home tomorrow, so everything is covered. I hope that we are back home tomorrow. I will let you all know when we find something out.

We are home!!

The surgery went well. It was a really short procedure and he did really well. He was really fussy when he came to but he was just really hungry! After we fed him he settled down and got a little sleep.

This morning the surgeons came by to check him out and noticed that something may have been wrong with the button (the part that is on the outside of the skin). After looking at it, the balloon that is on the inside of his stomach had popped. They put in a new button then they took him to x-ray to make sure the the new button was in place and it was so he is fine. If the new button would not have been in the right spot they would have had to rush him back to surgery to fix it. (sigh) I am glad that everything was fine and nothing more had to be done. The doctor said "Bill looks great!" LOL!

We have to go back to the hospital on Friday to have the stitches removed and that is it. In 6 weeks we have to go back and they are going to teach Josh and I how to change the button at home because it has to be changed every 3 months. (not looking forward to that!!) I will post a picture of the button when I get a chance to get my camera out!

Thank you for all of your prayers!!

Not too happy

I have one angry little man on my hands this morning! He has not been able to eat since midnight and he is mad!! Rightly so and it breaks my heart! We don't have to be at the hospital until 12:30pm today and I am not sure how we are going to make it that long! They told us that this surgery is really easy and straight forward. The only possible complication would be if they had to go through scare tissue from his last surgery but if that is the case it will only take a bit longer. I will let you all know how everything went when we get home, hopefully tomorrow! Pray for my sweet little man!!

I have got to find something for us to do to keep his mind off of the fact that his stomach is empty!! (Sigh) Love to everyone!!

New Things

Hi Everyone-

I am just amazed at what all Will is doing since he got the ng-tube. He is babbling ALOT more, he has been saying dada pretty consistently among other sounds. Before I was very worried about his verbal skills, he rarely made any sounds or babbling. I am very pleased with his accomplishments.

He has also gained 4 pounds! He is now weighing in at 19 pounds!! He is eating alot better by spoon and has decided that he even likes some of the baby food! His favorites are Hawaiian Delight and Pears. He eats the entire jar when offered one of these foods. Before he would only eat one or two bites and be done with it.

I feel like he is getting stronger and full. Maybe he isn't hungry all of the time so he is able to concentrate on other things. I don't know, this may just be me convincing myself that the tube is the right thing to do. I am feeling that the ng-tube is a success and I think that we are doing the best thing for Will and for his happiness and health.

Hope that everyone has a great Friday and a wonderful weekend!

Crazy

Things have been pretty crazy around here the past few days! Will had doctor appointments all afternoon yesterday and everything went really well. The neurosurgeon told us that she didn't have to see if back for a year! That never happens!! It was nice to have a few doctor appointments that go really well, are really easy and aren't followed by more tests. It was a long day but everything went well and don't have to go back to clinic for 6 months. (He saw neurology, urology, orthopedics)

Tuesday, Wednesday and Thursday morning of this week Moms club had "camp" for the kiddos that are too young to attend most day camps in the area but were looking for something fun to do this summer. Tuesday was barnyard day, Wednesday was dinosaur day and Today was bugs day. Caroline had so much fun making crafts, playing games and being with her friends. Today we hosted bug day and I think that all of the kids had a great time. The big finale was an ant farm! They were really happy to look at their farm that they made.

It has been a busy week but a fun week. Talk to you all soon!

Surgery

Will is going to be having the g-tube surgery on June 25th (next Monday). We decided to get it done the soonest that we could because we are going to be leaving town the first weekend in July for a wedding in Indiana and we want him to be 100% before we go. The wedding is in Santa Claus, Indiana so we will be spending the day before the wedding at Holiday World. Caroline is really looking forward to the trip, we have shown her pictures online and she thinks it looks like a great time.
Anyway, wanted to let everyone know when the surgery will be. No Splash City today, they say it is going to rain though it is nice and sunny here!
Have a great Monday!

Happy Father's Day!

I hope that everyone had a great weekend and got to spend some time with family! Josh and I took the kids to Splash City today and we all had a great time. Caroline thought that it was fun to go swimming with Dad! She was also very excited to give Dad her Cinderella card that played music that she picked out. Her little giggle this morning when she handed it to him was priceless!
Today was the first day that Josh and I had to insert a new tube down Will's nose. It wasn't pretty but we managed to get it done. I hope that we get on the schedule for the g-tube soon, because having to put in the ng-tube is no fun (for anyone!). But at least we know now that we can do it and we all survived!

NG-Tube

Hi All-

We finally made it home today at around 1:30pm. Will is sporting a tube coming out of his nose and gobbs of tape on his face because he likes to pull the tube out! He is doing really well on the ng feedings. He is on a 3 hour schedule so I first bottle feed him and then what he doesn't eat by bottle he gets in his tube. We are giving him 3 1/2 ounces every 3 hours. Josh and I both learned how to but the tube in his nose (I was very reluctant, I did NOT want to do it, but Josh talked me into it). Will likes to pull it out so I am sure that we will both be getting lots of practice putting it back in. We had a good stay at the hospital but we are really glad to be home.

We also had another Modified Barium Swallow Study while we were there (a test to see if when he drinks or eats if food is going into his lungs). We had one done in Nov. and if you remember he was aspirating so we were having to thicken all formula with rice cereal and was constently worried about pneumonia. Well, a bit of good news, HE IS NOT ASPIRATING ANYMORE!!!! Yippie! We have stopped thickening the formula and he is doing great!

We are still planning on having the g-tube placed. The surgeon who did his last surgery will be doing the procedure. We talked with him today and he said that there should be no problem with putting in the g-tube. The surgeons at the hospital call Will "Bill" and it always makes me laugh. He doesn't even look like a "Bill" but I think it is cute when they call him that! The surgeons and the surgical residents were all really happy to see "Bill" and glad that he recovered so well from the last surgery. One of the residents even said that "Bill" was his favorite patient ever!! Too cute! We don't have a date for the g-tube procedure yet, but they will be calling within the next few days to get that set up.

Thanks for all of your well wishes and prayers. I will keep you all posted with how things go with the tube!

Update

Hi all-

Update on the constipation issue: he went on Sat. (diaherra) but has not gone again since. I have continued with the Milk of Mag. twice a day and I hope that he goes again soon.

Tomorrow is when we go to the hospital for the NG tube. We are just trying to get everything ready, bags packed, Caroline is going to Grammy's tomorrow, etc. Today, Ms. Robyn (OT) came to the house and we discussed some things that I am going to ask Dr. Barlow tomorrow. I think that I am going to request another swallow study and a ph test. Ms. Robyn seems to think that Will may be having some problems with reflux (even though he is taking medicine for the reflux). After we discussed some issues, I think that it is going to be worth having these tests done before having the g-tube procedure done.

Will was really happy to see Ms. Robyn today, he just loves it when she comes over. Caroline really likes her too. Ms. Robyn has been great and she has really helped us out alot. I trust what she says and I think that if she is concerned about these things then I should have them addressed.

I hope that everyone had a great weekend. I will post again when I get a chance, I am not sure how long we will be at the hospital.

Much love to you all~

Our decision on the feeding tube

Hi All-

I think that Josh and I have decided that the g-tube is the right thing to do. We made an appointment to have Will admitted to the hospital on Tuesday of next week where they will insert the NG-tube (tube down the nose into the stomach) to make sure that he can tolorate the tube feedings. They will also be teaching Josh and I how to use the machine, care for the machine and care for the opening that will be in Will's stomach. They told me to expect to stay for at least 2 days then they will schedule for the g-tube procedure for the following week. In the mean time, Will will be coming home with the NG-tube until he gets the g-tube. He will also be placed on a heart monitor while sleeping so that if there is a problem during the night (choking, etc) then the alarm will sound. Josh and I are going to continue with the scheduled feedings until next Tuesday and if he has dramaticly impoved in his feedings then we will just cancel the hospital stay.

Josh and I feel that this is the best decision that we could make for Will and his happiness. We want him to be able to explore and be a kid without having me following him around all day sticking a bottle down his throat. We also think that the feeding tube will help him to get strong and healther for next winter and the flu season. With the tube we can keep him hydrated so we will be able to avoid hospital stays for IV fluids.

Will has had 2 doses of the Milk of Mag and has had a small amount of relief today but nothing that you would have expected. His belly feels hard so I know that he is compacted. I am going to give him another dose tonight and hope that he gets some relief by tomorrow morning. If there is no relief then I am going to call Dr. Rahman and let him know that there is nothing happening!

We are heading to Sparta tomorrow afternoon, so I will let you all know on Sunday what Dr. Rahman has to say. Have a great weekend!

Love to you all~