Damian's Scope

Just a quick hello to let you know Damian is currently having his scope done to find the source of bleeding. Say a prayer for him that there are no "surprises" and anything they find is a quick fix! Thanks friends.

ps: I asked him to change into "something nice" for some pictures recently, and he refused saying his coordinated PJs were nice!! lol

What a Weekend

Hi friends. Can we just take a minute and talk about this weekend? What a mess.

Nate and I were so happy to have a weekend of "nothing going on" so that we could do all those things we haven't done in awhile (like finish hanging this light.) We are so silly.

As I'm sure most of you know if you follow the Instagram, we took Damian to the ER on Saturday. I had been painting the dining room when I realized it was all too quiet in the house. Nate texted me that Damian had decided to take a nap on the sofa. My mama sensors went off a bit at that, butttttt who doesn't love peace and quiet and the miracle of both children napping at the same time???? 

However, not only does my child not ever nap. He never turns off his beloved Curious George in order to take a nap, so the second he woke up we took his temperature--103.4. 

UGHGHHHHHHGGHHHHHHH

We asked him over and over "Does anything hurt??" and every time he responded that nothing did. 

UGHGHHGHHHHHHHH

For Damian, a sudden fever with no other symptoms means we need to rush him to the hospital.** So we did. He was pretty pitiful, but after some Motrin, IV fluids, (a lollipop,) and blood work he seemed to be doing much better. It was a long couple of hours waiting for answers.

At first I was all over it-- "Clare you can't touch anything!!!" But after an hour of being in a little room and having brought her two different shoes (both the left feet--oh the irony,) I decided I was fighting a losing battle. She's probably horribly diseased now too, but at least she had a milestone moment and said "bag" while trying on her new bookbag. Apparently she's 13.

Four hours later we all cheered that the labs said his liver looked fine but showed positive for RSV. Probably not the norm, but nothing ever is with Damian. It's hard to explain what goes on inside me as Damian's mom, it's a complicated mess of emotions. Let's just say no one has been so relieved for a virus.

As we go to leave Damian goes "WHAT'S THAT?!" 

Oh buddy... It's the GIANT picture of a sea turtle that's been on the wall behind you the entire time we've been here... Clearly little man wasn't feeling 100%.

Then we tried to leave, but we were flooded because downtown Charleston does that. 

So we hung out a little more until we could float drive our car out. 

Sunday consisted of a lot of Curious George watching and apple juice drinking and nothing else. He still had a bit of a fever but still no other symptoms. I kinda feel like this weekend was a waste, but at the end of the day, we're really happy that it's just a virus. That is until the rest of us get it... 

**Thank you to all who prayed for Damian! We know for most a fever doesn't seem like much, but for Damian repeated infections of the liver would speed up its deterioration and cause him to need a transplant much sooner. I try to not ever focus on the bad things, but when these little moments happen sometimes it can feel overwhelming. I know we are incredibly blessed by how well our Miracle Boy is doing.

Damian Update

If you saw the Instagram post from yesterday, you know Little Man has been having some issues. I hope to keep you updated so you can continue to pray for him. 

A little background... 

Damian has Biliary Atresia--a rare liver disease in which the bile ducts going from the liver to the intestines disintegrate. He was diagnosed at 2 weeks of age and at 3 weeks had a surgery known as a Kasai Procedure in which they take part of his intestines and make a new duct for bile to drain through. Praise God Damian's liver seems to have responded well to this surgery. Every 6 months his liver levels are monitored and they have always been relatively stable. We hope this means a liver transplant can wait a nice long long long time from now. However, I've been given a short list of things to keep an eye on as they could be signs of complications that can arise when one has a compromised liver. These things include a sudden, unexplained fever (from a potential bout of cholangitis,) blood in stool, spitting up or coughing up blood (from potentially bleeding varices caused by portal hypertension,) etc.

So what's been happening... 

Yesterday Damian began experiencing "some bathroom issues" with what appeared to be a decent amount of blood in it. I knew this was a sign of bleeding varices so I immediately called our pediatrician, and he got us to come in right away.

Crazy kid is just happy to have a lollipop

He confirmed it was definitely blood, and we spent the rest of the morning and early afternoon trying to figure out what the GI Team at the local children's hospital would like for us to do. I kept saying if I don't have a "plan" by 3pm I'm taking him to the ER because I know that early intervention is key as far as limiting the damage done to his liver, and I was starting to get a little mama bear crazy.

Thanks wifey for finding something that accurately depicted my mood

Normally I do a decent job keeping my whits about me when stuff happens with Damian, but we had still not been able to get into see the new GI/Liver Team here since moving back in February (that's another frustrating story for another day) and I didn't feel like I could "trust" these doctors yet. 

Anyway, a little before 3 o'clock I hear from the GI team and they would like to see him at 8 am the next day (today.) I questioned whether or not he should be seen sooner and they made it seem like it was up to me as to whether or not to take him to the ER. (Mama Bear be annoyed at this point.) So I promptly called our old GI who recommended we take him in, if he had another "episode with blood in it." Thankfully Damian didn't and we went to the GI today. The doctor explained that while it could be varices, Damian would likely also be spitting up blood as well since varices tend to bleed a lot. Also his liver and spleen felt fine, so he's hoping that's not what's causing it. We did blood work today, and the results should tell us (based on his cell counts) how profuse the bleeding is. If it is profuse (or the episodes continue,) then we will be scheduled for an emergency scope to determine the source of the bleeding. If his numbers come back fine, we will schedule him some time in the first week July to have the scope done. 

The doctor is speculating that it may be hemorrhoids that formed at the site of the new bile duct created during the Kasai Procedure or something else going on in the large intestines. Neither are life threatening, but both would require a minimally invasive surgery to correct. Or (although I find this unlikely judging by the fact Damian is acting like he feels fine) he's having a bacterial infection of some sort. 

So if you could, please keep him in your prayers that it's only something minor, and that it's an easy fix! As of tonight, we haven't heard back about blood work so I will keep you posted once we hear something hopefully tomorrow. 

Thanks again for all the kind texts, comments, etc. We really appreciate them!