McD Update, Part 2

Look! Another post! Hopefully I can keep up with this blog again for a while. We'll see...

To continue with Update, Part 1, we took our Lovebug back to see his Pediatric GI last week. The visit went well. After catching Dr. Z up to speed as to what has been going on since L's last visit to his office, he agreed that the medicine one of our pediatricians suggested we try was the one he would recommend. However, LJ will have to take it every night indefinitely. The pediatrician said he thought we could try it for just a month, but the Pedi GI clarified that in order to use it as a preventative medicine for Lovebug's CVS, he would need to be on it daily. And IF he does have another episode while taking it, we still have room to increase the dosage and try it again. We are A O.K. with this plan - the side effects are minimal and the risk is low with this particular medicine. We have already noticed this week that L's appetite seems to be leveling off and he isn't crying and begging to eat constantly. He still might gain a little bit of weight b/c of the medicine, but we all feel it is worth a couple of extra pounds if this will keep him out of the hospital!

Dr. Z said this medicine has worked for some CVS patients. We hope and pray Lovebug is in that group! So now, we wait. And in the meantime, have the end of school RUSH to keep us busy!!!!

My mom ordered this book for Lovebug. It was written by the mother of a little girl who was diagnosed at a young age with CVS. It is a precious, sweet book. After I read it to my sweetie for the first time, I asked him if he liked it. He told me in quite a few words that he did not like it and did not want to read it again (this is not a commentary on the book - again, it is a WONDERFUL book and very gently worded for children). He said one of the faces looked sad and that made him sad. I think, for now, it is a lot for a 4-year-old to process. So when his hospital visits do come up, we focus on the good - the nice nurses that bring him cereal when he wakes up, and the pretty flowers and blankets the volunteers have given him. And now, we can say it is possible he may not have to go back for a while if this medicine works. So he takes the stinky smelling "yellow medicine" without any complaints every night. Our brave Lovebug. :)

McD Update, Part 1

I am not sure if I will ever have time to go back in and fill in everything that has happened since July 2011. Oldest son made it through First Grade and is now almost finished with Second Grade. He is becoming such an amazing young person. He still has his moments, he is an adolescent boy after all, but 99.9% of the time he is a joy to be around and to parent. Update, Part II will be all about him!

This update is going to be about our youngest son, Lovebug. My last post was on his 3rd birthday. He has since turned 4, and will turn 5 in July. He is THE sweetest little guy. He wakes up with a smile on his face and with hundreds of kisses and hugs for me every morning. He has outgrown the "terrible three's" phase and moved on to one of my favorite little boy phases - the "I want to marry my Mommy" phase. Melts my heart.

A week after my last blog post in July 2011 our Lovebug got sick. Very sick. So sick we ended up in the ER, then admitted to our children's hospital. Not only was he violently throwing up, but he was just limp. He wasn't talking. At all. It was weird, but we thought it must be a nasty virus.

First episode of CVS, July 2011

Even at that first visit, the doctors weren't so sure it was just a bug, but they said he would probably start the "other end" of it if that was the case. Well, that never happened. After a day in the hospital on IV fluids and meds, he bounced back to his normal, energetic, happy self, and we decided it had to be a bug or something he ate.

Flash forward to now. Our Lovebug has been to the ER and admitted to the hospital SEVEN times in 21 months. He has had many tests run on him - Upper GI, ultrasounds, multiple blood panels - and through the process of elimination, has been diagnosed with Cyclic Vomiting Syndrome (read more about it here - CVS Info). Simply put, once he starts to vomit, he has an extremely difficult time stopping and has an "episode" of unrelenting nausea which is possibly caused by abdominal migraines. We are still learning more about this. To date, he has only stopped once with zofran at home. Every other time he has needed an IV for fluids and medicine for at least 12 hours once started to stop the cycle. His blood pressure and heart rate do crazy things (from both dehydration and from the "episode" doctors have told us).

Since we had never heard of CVS the first time it was mentioned to us a little over a year ago (except for the pharmacy), I immediately started researching. When I found a description that fit Liam's episodes to a T, my heart sank a little. There is no known cure because there seem to be many different triggers for those who suffer from CVS. We are still trying to find Liam's trigger(s). Sometimes we know what causes it, like when he had Strep Throat. That was easy to figure out. But most of the time, he wakes up pale, lethargic and then just starts throwing up. No infection is present, no fever, no other indicators.

Will he outgrow it? We get this question a lot, and the answer is "We hope so." There is evidence that some children do outgrow it, or that at least episodes begin to happen less frequently over time, especially near puberty. But, there are also quite a few adults living with CVS, and some who outgrow the vomiting episodes only to have them replaced with regular migraines. It is something we pray about, and hope that you will, too.

As you can imagine, the hospital has become a place that we are thankful for, but that Lovebug is not eager to visit again anytime soon. I can't say that I blame him. The last couple of stays have been especially scary and traumatic for him, with difficulty getting IVs started, IV's blowing during the night, etc. Our brave boy asked us the last time we were there if it was o.k. to cry at the hospital. Of course, we said yes.

What CVS looks like to us:

Hospital Admission #2

#4

#5

#7 and most recent - April 2, 2013

We are heading back to the Pediatric GI this week to discuss his most recent episodes and talk about this new medication he has started. More to come...

New Blog Title, Same McD Family

Yes, you are reading the blog formerly known as "3 Guys & A Girl" and yes, this is a new blog post! Shocking, I know. So very much has happened since the last time I posted on this blog. Several times I have sat down to update it, only to find myself at a loss for words, or even more so, at a loss for time.

A new post will be coming soon with an update on the McD family. But before that happens, here are some current pictures of our two boys. JMcD is now eight years old and LMcD is four years old.

Ok, this one isn't super recent. November 2012, my birthday :)

March 2013

Jody and boys, March 2013

SeaWorld with Baby American Alligator, March 2013

Birthday Party at Natural Bridge Caverns, March 2013