My mind has been racing for the last week. I haven't slept and sometimes I wonder how I haven't been admitted to the crazy house with all that goes on in our lives. For the most part, our lives have been normal. But then again, we don't know any other way of living then always having doctors, specialists and therapists involved in our daily lives.
Zoe, I think she's going to send me to an early grave with all her scares. I don't post that much anymore about all the hospital visits or anything of the like because I feel like a broken record. I've just reached out to friends and family when I need to vent or cry. We've added another two specialists to her team, so she now sees Cardiology, Pediatric Surgery, GI, Endocrine and Immunology.
Zoe had her duodenum repaired at 5 days old. When we left the NICU we were told to watch out for black tarry stool and white stool. Well earlier in the fall for about two (2) weeks, she had black tarry stool. You basically needed a knife to scratch it off. Black stool usually is an indicator that there is blood in the stool. We had it tested, and there was no blood. We had to take it back a few times in order to make sure everything was ok. Luckily it was.
This past Saturday we went and celebrated one of my best friend's son's 1st birthday party. The kids had a blast, running around, jumping in the bounce house, acting like a normal 2 and 4 year old. Zoe has been potty trained since September and I can honestly say she does amazing at wiping her little tushy, so I'm not always in the bathroom with her. Saturday night she wanted my help. I looked in the toilet and called Mike over immediately. Pure white chalky stool. Mike's eyes got big and said to call Children's immediately. White stool is an indicator that there could be liver failure or a bowel obstruction. For a girl who already had a bowel obstruction, this is why we were concerned. The ER, pediatric surgery and every other doctor that examined her were concerned by the color. She was also distended and complained that her tummy hurt. X-ray, Ultrasound, blood work came out perfect. They told us it was not a virus or a gut infection. So what is it then??? They sent us home. We followed up with them for the next 48 hours because the white stool continued. Mike and I didn't feel comfortable with her having white stool for 3 days (mind you she had no fever, no vomit, no diarrhea, no other symptoms other than loss of appetite and being pale) so we took her back to the ER on Monday night to redo the tests. The tests came back even better than they were on Saturday. So they sent us home. We were on the phone with Pediatric Surgery and our pediatrician all week long. We saw our surgeon last night. She believes Zoe is backed up in stool and that the bile is being reabsorbed, hence making it white. She has never seen this before, but there is logic to it. So we will administer some meds to help get her bowels moving and hope for brown normal stool. I"m a little skeptical about this as she's never seen this, but I trust our doctor. We see GI on Monday and hopefully the stool is back to normal or we have another plan in site. So far its nearly 7 days of white stool, which is not normal!
I cried so much this week, for the pain of my daughter, for this journey, for not having answers and then sweet Zander, who's so concerned about his little sister. He's had to grow up so fast at such a young age. He's starting to act out when she's gone for hours after hours. My heart just breaks because he knows no different. But when she's not in school with him, or at the doctors for hours and hours, his world is just turned upside down. He knows she has an illness and a special heart but doesn't truly understand it. They have such an amazing bond (when they aren't trying to kill eachother). This week Mike and I both were at the hospital together because they were concerned it could be her liver. Normally we try to have one of us with Zander, and one with Zoe at the hospital and then switch. But this week, we were too nervous.
We have so many appointments in the next few weeks and then in March and May for her other specialists. For now, I hope our ER visits are not any time soon because her poor little hands and arms can't take anymore pokes or prods. She's bruised so badly because they miss her IV's so much. She's much older and more aware of her surroundings. She doesn't really have the "White Coat Syndrome" anymore (not afraid of doctors wearing white coats) but does hate when she sees the needles.
This week has played on my sanity. I'm so thankful for the small gestures of friends (like dinner). We haven't really been home this week due to the hospital and its the last thing on our minds.
Tonight we're taking the kids to see Frozen On Ice and help to put some smiles back in the kids!
Thank you for your support as always and lets pray for normal stool!
xo
I'm at the point now that if you're not a member of the IV team, you're not even trying to get an IV in. Izzy's veins look good but they aren't--they twist and collapse and blow out and even the IV team has a hard time :/
ReplyDeleteI hope they figure out what's going on with Zoe!