Wednesday, June 27, 2018

Anaphylaxis Sucks

Our sweet Vinnie boy had another anaphylaxis scare yesterday. 

Vinnie made himself a couple sandwiches and used Lucas’ allergic Hawaiian bread slices. He ate about one and a half of them while I was nursing Sulley. That was around 4:00.  He had vomited at 3:00, which we think is a reflux issue he has going on.  (He's been vomiting for no apparent reason for about 2 weeks now.)

I got up to check on him bc he was complaining of an upset stomach. I thought initially it was left over from him vomiting earlier, but as soon as I saw the remnants of his second lunch I grabbed the baby and got everybody in the car. 

Vinnie only had an upset stomach which is a reaction but not ANA. So, we headed to the CHKD Urgent Care. But, before we got there (1.3 mi away) he threw up in the car. I called NJH and asked if I should epi immediately or go the last 5 minutes to the UC. They said go to the UC. 

We interrupted and got straight to the back, as soon as they did the vitals, they ordered epi and Benadryl. He was feeling pretty miserable at that point.  He did *NOT* want them to use the regular epi-pen.  I was actually quite shocked that they used that instead of a needle. 

His sats were a little low so they put him on oxygen. He perked up quite a bit after that. 

We had the doctor that I do not like one bit.  She is condescending and talks down to me.  She said, "You do know we aren't a hospital right?" Um, yea, but you are a DOCTOR right? (literally what I said)  I mean my choices were to stop the car, epi, call 911, wait on an ambulance to get to me in RUSH HOUR traffic in Greenbrier *OR* drive another 4 minutes to a medical facility that specializes in pediatrics--where I could then administer the EPI or let them do it.  When I walked in, I said, "He's having an anaphylactic reaction and needs epinephrine. I can do it or I can wait for your doc to do it."    If he had vomited any further from the Childrens Hospital of the King's Daughter urgent care center I would have epi'ed on my own.  BUT, either way, they needed to either treat him or get out of the way so I could.  The doc is just a pain in the butt.  She was also fussing about Sulley being on the floor.  I'm sorry lady, my concern is with my SICK child, the one who could die from his condition if you don't administer meds soon, I could care less if the babies fingers get stepped on.  Lucas was helping me keep him out of the way, but the doc was being a witch about it. 

Because he was considered in ANA after the vomiting, they called the ambulance from CHKD to transfer us. 

Vinnie got to wear a 5 pt race car harness on the stretcher and I rode in the back seat of the cab. He got to watch Spongebob on their mounted iPad. 

After we got to CHKD ER he was triaged (immediately) and given a slushee. 

He was obviously feeling *MUCH* better by the time we got to CHKD. He'd had benadryl, Epi, and 30 minutes of oxygen by then.  

They took good care of him in the ER.  He got zantac and prednisone & an iPad to play with there too!

Tim and the boys came and brought us the "go bag" and a change of clothes for Vinnie.  So, we were able to keep them all entertained until Mandy got there with food for Vinnie & I (they had finally cleared him to eat just before that) and then Beth came and helped Tim go pick up the Corolla and park it back at the hospital for us.  

After everybody left (around 9 PM), Vinnie and I snuggled and played on the iPad until about 10:20 when the doc said he was comfortable with discharging us at 10:45 if I was.  Since Vinnie seemed okay I was fine with it.  

We got discharged and headed home.  Tim was *JUST* getting the boys into bed when we got there, so I got to nurse Sulley to sleep and Tim didn't have to try to get him down without milkies.  

Anaphylaxis remains a scary event.  Fortunately, this one didn't go beyond some minor facial swelling and hives and the vomiting.  

We have a WALKER!

Sulley is officially walking!  He's such a big boy!  Over the last two weeks he has really taken off & gotten confident in his walking! He still stumbles a bit and hasn't started RUNNING yet, but he is definitely walking all of the time now & prefers walking over crawling!  Huge gain for our little preemie.  So, we will officially say he was walking at 17 months old.

He seems to be right on track with most of his motor skills and is doing really well with hand-eye coordination activities and plays just like a little boy!  He loves to drive cars all over the house & playing catch is one of his favorite games.  Lucas even taught him how to "get ready" by placing his hands open in his lap!  He LOVES water, he enjoys playing in the bath, in the pool, and even at the beach!  The beach is another huge milestone, because sand is one of the textures that he has been really struggling with.  BUT, with shoes on he doesn't seem to mind walking on sand and even without them he enjoyed playing in the sand for at least an hour on Monday this week.  He wouldn't crawl or walk away from where he was sitting, but he did PLAY.  He didn't shut down and was actively involved in his task.

The most impressive gain that he has been making aside from walking is with his communication skills!  He is learning a new sign almost every day right now!  Today he used Thank You for the first time, yesterday he signed "More Drink Please" for Daddy. 

Spoken Words:
Mama, Dada, Bruh Bruh, Go, Up, Working on "Woof" so far he says "Fff", Uh-oh, Yea

Diaper, More, Milk, Please, Thank You/ You're Welcome, Drink, Eat, Up, Down, Out, All Done, Yes (nodding head), No (shaking head)

Signs he recognizes:
Help, Yuck, Jump, Bubble, Play

Lucas is an amazing helper and has really been pushing Sulley to use his signs.  He even taught him a couple of the signs all on his own! 

Tuesday, June 12, 2018

A Month of Toddling

It's been just over a month since Sulley took his first steps.  He has been very slow and timid.  At first he would only take a few steps with a lot of coaching.  He'd walk between Tim and I or around the living room but not much further.

Then, he decided to start walking all sneaky like.  He'd toddle around the kitchen or down the hallway, as long as nobody was paying attention to him.  He braced himself on his legs or holding his belly and each step was very deliberate.

Last week during therapy, Ms. Lindsay gave us a weighted vest to try.  The difference in Sulley's confidence with walking was immediate!  He was willing to take several quick steps and just seemed much more at ease.  I was able to find a weighted compression vest just like the loaner on ebay, so we will be able to keep up with it.  Ms. Lindsay did a sensory processing survey on our boy and he scored "More Than Others" and "Much More than Others" in almost every category.  We aren't sure what exactly that is going to mean for him, if anything. 

So far, Sulley is still definitely just a beginning walker, a toddler, to the definition of the word.  He isn't going to outrun anybody just yet.

He has also had a language explosion since we started using the vest.  His words include mom, dad, brother, dog, go, help, and up. He signs more, milk, all done, and down.  He also shakes his head for no.  I love that he is able to communicate most of his needs so clearly at 17 months old.