Jaxson is going to send me straight to the loony bin! Along with the typical increased seizure's, Monday he had a big retching episode. An episode that led to aspiration. It was a mild aspiration, but that doesn't matter. Yesterday he continued to retch and gag more. 3 days of no poop, even with his suppository. Last night after I put him to bed, sound asleep, he had 5 or 6 more episodes of severe retching. Every time he would desat, and I would hold my breath, praying he didn't just have a huge aspiration. Then he would slowly come back up again. Finally, after zofran, I stopped his feeds and started pedialyte. His heartrate was sky high, even after he fell back to sleep. I had a strong feeling we were heading to the ER. After I started the pedialyte, he finally slept ok. He woke up this morning ok. Sats were a tad lower than normal, again, I think microaspiration. He just doesn't have anything in his stomach to have a big aspiration. Since he didn't have any big retching episodes, I started his feeds normally. He has been ok today.
What the heck?? Why was he retching so much, and now is fine? He is making me crazy! And now, instead of not sleeping, he is sleeping constantly! Only a couple hours after waking up, he was back to sleep. He woke up, and has only been up for a couple hours again.
My ped wants me to do a big enema, he thinks he is backed up. He also says GI needs to get to the bottom of the not pooping issue. That using suppositories makes them dependent.
Well duh! I knew that, but he has to poop, and since he doesn't, I have to make him go somehow!
The only good news is I got into the keto diet team on the 6th of March. I wasn't expecting it to be so soon. I still haven't heard of an admit date for the VEEG. I'm hoping that since his keto appointment is so soon, maybe we can just do the admits together, and try to get these seizures under control!
Since things happen in 3's, here's a couple more.
I took Carter in to the ped. In the past few months, he has gained a huge amount of weight. This is in my son that plays sports, and is outside playing every second of every day. I have a feeling something else is causing the gain. He weighed 83, and just two months ago he weighed 72. From October, when he weighed 67, and was in the 50% percentile, to February, where he's now in the 85% percentile. That is a huge jump! She ordered tons of bloodwork, including thyroid tests. I'm praying something shows up, because there is no other reason he has gained this much weight!
We've also noticed that Arina seems to limp a little, mostly in her right leg, when she walks. I've also noticed that sometimes when she falls on her leg funny, she cries in pain. Usually, again, the right leg. I'm wondering if she has hip dysplasia, and her hip is popping in and out. I have zero experience with this, so I'm thinking a trip to the ped is in order for her also!
Whew, I need things to calm down a bit around here so I can breathe!
Until then, some more pics of our San Diego trip.
I swear, in that last picture - Arina looks so much like your biological child that if you didn't know, you wouldn't! I've been curious, and I hope this isn't too much of an intrusion - what have you learned from raising Arina, being as she's your first "typical" (I mean, you know, she seems like a typical toddler to me!) child with Down syndrome? What have you learned or what's surprised you the most? Just curious. :)
ReplyDeleteWow the fun never stops at your house. Praying for everyone and for your peace!
ReplyDeleteJoseph does the same with his right leg/hip...he has Perthes Disease. Simple xray will show :) Hang in there Lacey
ReplyDeleteIt's times like these that when people post status updates that say, "my life is horrible because my husband won't switch the 2" molding with 3" " I want to murder them.
ReplyDeleteYou aren't like that because you are a good person. Ugh. I'm sorry that you're going through all of this- and ALL at once. It just doesn't seem to slow down, ever! You handle things so well. You really are an example to me.
Ughghg, that reminds me, I need to go unplug Abby.
Being a mom is fun.
I know I say it all the time...but Arina is such a doll...
ReplyDeleteshe has the same strut as Brooke...
I've been reading on FB about Jax...hang in there Lacey...you're such an awesome mom!
Things never stop at your house. I hope you can find out what's going on with all 3 kids. Praying.
ReplyDeletebtw- I volunteer at our local hospital and there was a little guy there tonight who totally reminded me of your Jax. Hugs
Those pictures are great! Love the one of Arina by the aquarium, and the one of 4 of your kiddos sitting together!
ReplyDeleteSorry about the continues issues! Gavin has been retching and spitting up more often too....hate it!
Also, our 8 year used to be tiny and skinny mini....but in the last few months he has outgrown everything! His weight shot up and he isn't eating anymore than normal either. He's our ADHD one, who is contantly moving, playing, running, doing sports....so it didn't make sense to me either. But, he's totally fine and healthy, so maybe they are just taking off and growing up? Let me know how the labs turn out.
Hang in there Lacey! You are one busy Momma, but you're doing a great job! Hugs!
Looks like a fantastic trip! Arina looks just like you in that final photo!
ReplyDeleteI nominated you on my blog:
http://www.dontlicktheferrets.com/2012/02/the-versatile-blogger/
It is very hard sometimes with children not in their pink of health and irritable and more troublesome than usual... but when you have a problem,there is no way escaping it.May you have all the patience to deal with him.
ReplyDeleteBleh, what a whirlwind of anxiety-provoking stuff. Prayers your way - let it all resolve swiftly and easily - xo
ReplyDeleteps. LOVE the pics