Home Sweet Home

Will was released from the hospital yesterday evening. We weren't sure if he was going to be able to go home but the doctor seemed to think it was okay. The nurse told us that she thought it would be okay for him to have a tube feeding of his pediasure before we left the hospital. He had been drinking his pediasure by mouth all day and was doing fine with it so she thought that tube feeding him wouldn't be a problem. Wrong. He vomited Every. Last. Bit. Of. It. The doctor came back in and said that the medication for the CVS (cyclic vomiting syndrome) only works to prevent future cycles but does nothing for the present vomiting, he would have to cycle out of it himself. So she went ahead and sent us home because he was managing his oral feeds well.

We are home, happy to be home and all slept well last night.

We are going to give Will days of just pedilyte tube feeds and pediasure orally to let his belly take a rest. Hopefully after that time he will have cycled out and we can add in the pediasure tube feeds back in.

As hard as it was to hear another syndrome diagnoses, it completely makes since. If he goes vomit free for three or four months after being on his new medication, then we know that it is CVS.

Thank you everyone for your thoughts and prayers. It was comforting to know that so many people were praying for him.

Update

Josh called at 8:30am to tell me what Dr. Brady said...

• He looked much better this morning.

• She believes that he has Cyclic Vomiting Syndrome which would explain a lot of Will's vomiting issues. Basically, Cyclic vomiting syndrome (CVS) is a condition characterized by recurrent, stereotypical bouts of intense vomiting interspersed with periods of completely normal health. CVS usually occurs in children 5 years old and older. Dr. Brady has only diagnosed two other children Will's age with it. She started him on medication to help with it. He will be on the medication for 6 months and then they will start to decrease his dosage until he no longer needs it. CVS is something that children grow out of, he will not need the medicine forever.

• Caroline didn't go to school today. She woke up at 6:30am and threw up. I don't know if it is a nervous stomach, being very hungry or a bad turkey sandwich from yesterday. She is not running a fever and seems perfectly fine right now. She is missing her Easter party at school today and is not very happy about it. I am going to stop by the school and pick up her goodie bag for her, she was happy about that. All I can say is: Enough with the vomit ALREADY!!!!

• Dr. Brady seemed to think that Will would be able to come home some time today. They have already given him his sippy cup with his pediasure. All day yesterday he would say "ma" which is his "milk". He was asking for his milk, broke my heart! Especially since he seems to understand that if he says the word then he most definitely gets what he is asking for. He just kept asking me for his "ma" and I had to tell him no. I even caught him digging through his backpack looking for his cup. :-/ Poor guy. I am sure that he is a happy camper now!!

a quick update

Will has his IV, he is getting pepcid and carafate for his reflux and was sleeping as of 8pm tonight. Josh came home from his business trip to San Diego and made it to the hospital at about 7pm. Since he had his suitcase with a toothbrush and pjs he stayed with Will tonight and Caroline and I came home. I will be taking Caroline to school and after I pick her up from school and head to the hospital to check on my boys.

Will has been going through this cycle of being well for a month, two months then all of a sudden vomiting everything for days. This last occurred in December, but has really been occurring since the beginning. The vomiting started this time on Saturday night, during the night he threw up in his bed. Then woke up twice Sunday night after vomitting. Monday he threw up all three of his tube feedings but was keeping down what he drank by mouth but didn't drink that much. On Tuesday he threw up once in the car, all liquids that he took by mouth and all tube feedings. On Wednesday he threw up twice in the car (once taking Caroline to school and once picking her up) before going to our noon appointment with GI. He has lost over a pound and was becoming dehydrated. They did blood work and a urine culture to check for anything abnormal.

Today when the doctor told me that she wanted to keep him, I cried. I cried and told her that I am soooo done with vomit, I just want it to stop (as I am sure that Will does too). Hopefully, there will be some answers in the morning.

The doctor said today that she would be in to see him before 8am so Josh should know something in the morning.

In the hospital

This is Jessica Myssie's friend, mom to Alex 18 months (RTS).
She asked me to update her blog and let you all know that Will was admitted to the hospital this afternoon at St.Johns. He has been throwing everything up, including water, and has lost over a pound in 2 weeks. He will be getting iv fluids, and tomorrow they will try feeding him. Once they are convinced he can keep things down he can go home. Myssie and the doctors think this is a GI issue, and not the tummy flu, so it could be more complicated to fix.
Keep Will and Myssie in your prayers, being int he hospital is hard, especially at night.

Not so wordless

Sorry, I have no wordless Wednesday today! But I feel that I have lots to tell you...

• We sold our house!! We close on the 22nd of April, only a few short weeks away. Josh and I were not prepared at all, we had no place lined up to move to. We have since found a place in St. Peters to rent but there is a kicker. The house isn't going to be ready until June 1st, 6 long weeks after our closing date. We have decided to stay at an Extended Stay America (sort of a long stay hotel) until the house is available. It sounds crazy, and it probably is but Josh, the kids, Buster and I will be living it up at the hotel for 6 weeks. The good thing is, if we get there and decide that we can't handle the close quarters, Josh's brother and his wife have so nicely offered to put us up for as long as we need.

• Why are we doing this and not just finding another house to rent? Because we only want to sign a 6 month lease, so that if a house comes on the market that we love, we can jump on it and not worry about being stuck in a year long lease. The folks renting the house in St Peters to us have been very nice in helping us out and working with us to only have to sign a 6 month lease.

• I have started packing, what a nightmare!! I hate packing! I have too much junk...any body want to buy some junk...I got some for sale!!!

• Will has been refluxing majorly bad the past few days. So with major reflux, we get major vomit. He hasn't been able to eat anything for 2 days, I have been giving him water and pedilyte, which he is tolerating alright. We have an appointment with GI today. I am worried that all of this bad refluxing lately could cause damage. We don't want that. I have been giving him his reflux medicine, but he has been throwing it up too. I know that he doesn't have the flu, he has no flu symptoms and acts perfectly fine when not refluxing. My mom asked me a question the other day when I told her about this, she asked how do I know if he is refluxing. I know because I can see him. He will hiccup and then swallow really hard. Most of the time when he gets the hiccups I take him to the sink because I know that the vomit is soon to follow. I hope that the doctor has some answers today.

• Caroline is excited about moving to a new house. We haven't told her yet that her friends aren't moving with us. I am sure that she will be fine, but I am sure that she will be sad. We haven't decided what we are going to do regarding Caroline attending preschool until the end of the school year. We close on the house on the 22nd of April, the last day of school in the 21st of May. She only goes three days a week so I am not sure if I will drive her back and forth to school for that time or not. They have grandparents day and graduation within that month, both of which Caroline is really looking forward to. We are still talking about it all, haven't yet decided.

• The other day Will waved and said bye, bye at the same time!! That was the first time he had ever said and word and signed it at the same time. I think that this was a huge milestone!!

We have been super busy and things are only going to get busier. I will be happy when we are all settled into our new home in St. Peters!!

Spread the Word...

Today is the day that we all decide that the R-word is no longer going to be used in our everyday language. I challenge everyone to click on the picture above and take the pledge to not use the word anymore.

It is time that everyone shows RESPECT to our most innocent and pure citizens. Take the pledge to stop saying, 'you're retarded', 'that's retarded' or 'what a tard'. Mental Retardation is how the medical community describes my son, it is not supposed to be used to describe how you look or how stupid you feel.

Take the pledge, make a change and let William know you did!!

Baby Doll Sling

I have been sewing again!!

This time I made Caroline a sling to carry her Bitty doll in. I found the tutorial here. It was pretty easy to make and Caroline thinks it is pretty cute!