November 12th, 2015…

12208330_10156426588865105_21273930034365358_n

 

Yep, 3 Boys! I honestly was stunned when the technician said the baby was a boy. I asked her to look closer haha because I was SURE the baby was a girl. Turns out, that I was destined to be a mom of boys. Luckily, I make pretty adorable boys and they seem pretty fond of me too. Clay’s been a total mama’s boy lately, always siding with me and driving Brett a little nuts with it haha.

But the truth of the matter is that although most parents think of the 18 week ultrasound as the “gender” ultrasound, the 18 week ultrasound is actually a diagnostic ultrasound. Of course I know better than anyone that horribly catastrophic and fatal diseases can be present that DO NOT reveal themselves on ultrasound, such as Foster’s genetic neurological disease that while being present at birth would not have been visible diagnostically in utero. It was still comforting to leave the ultrasound having had a glimpse at our wiggly little munchkin.  I have to say, because I was expecting a girl and people have certainly asked if I’m upset that the baby is not a girl, that Brett and I both were going into today’s ultrasound understanding that it’s not the “gender” ultrasound and with a different respect for that “as long as it’s healthy” statement. I’ve seen a blog post floating around the medically complex/special needs parenting community on several occasions regarding how offensive this statement is. I suppose to many parents of complex kids, hearing “as long as it’s healthy” is wishing for anything but the child that the parents of complex kids have. It doesn’t offend me personally at all. I can say that there is an unparalleled love that you experience as a parent of a medically complex child. There is an eternal innocence to my sick child, he can do no wrong quite literally and finds a way to smile through a life that has been absolutely horrible to him. I appreciate that there is much to be learnt from our sick and complex children and that the general public typically will never see or appreciate our children through the lense that we do. They will probably also never understand the depth of our love for these children. However, having witnessed the suffering that my medically complex child has had to endure in his short life and will forever continue to endure, I certainly would not wish it upon anyone and myself, continue to hope for a healthy child this time around. Well that was long winded.

Foster has been great since his ICU admission last month. I realize I never wrote about that here but I think most are aware he was admitted and essentially required a medically induced coma for a period of a few days. He was intubated and placed on a ventilator and has since recovered beautifully back to his baseline. Which is not normal but is normal for Foster.

This entire event was due to what’s referred to as status epilepticus (that’s the medical term) it’s basically a prolonged seizure or cluster of back to back seizures that cannot be stopped with traditional rescue methods. The seizure activity started fairly spontaneously at home in the middle of the night, since it wasn’t stopping I administered our first round of rescue meds. Waited 5 minutes and he was still seizing, so I administered the second round at that point. It’s important to wait the minimum of 5 minutes between doses because these “load doses” of medications have been known to cause respiratory arrest. Most people would call 911 by this point but since Foster is unique, we have access to more at home then most people would. So we were able to increase his oxygen support and since these two doses of rescue medications were not stopping the seizure, I moved on to our next resource which is two injections of a different type of rescue medication. This finally seemed to do the trick and bring him out of the seizure and he fell asleep for a few hours. However, although I have permission to do much more at home in terms of emergency treatment for Foster, we all have our limitations and at this point I had reached the maximum in terms of load doses that I’m allowed to administer in a 24 hour period. This is again because of the risk of respiratory arrest that comes with these medications at these high doses. So when the seizure started up again about 5 hours later it was time to bring him into the ER. The next 24 hours was spent in hospital doing load dose, after load dose, after load dose of several different types of rescue IV medications. When all of these had failed at stopping the seizure it was time to intubate, sedate and as it was explained to me “shut off his brain for some time and hope that it will reset itself with a break.” There could have been a couple of outcomes. Sometimes (because these kids have a low threshold for seizures) this extreme seizure activity can be caused by an underlying infection or something “treatable” and the coma will give us that time to run tests, start antibiotics and get past this hump. Sometimes there is no underlying infection and the neuro disease itself has progressed to this state of continuous seizure. At which point, we would try to bring him out of the coma after some time, and could see that he was still in this continuous state of seizing. If that were the case, we wouldn’t have had many options, return to coma indefinitely or turn off the supports and see how long his little body would last. It was certainly a stressful few days to say the least and probably didn’t help my hormonal, emotional, stressed out state that I was in the first trimester of a pregnancy as well (we all know how pregnant ladies can be!). Luckily, giving his brain this break seemed to do the trick for us and Foster recovered completely back to baseline within a few days.

Here he is at his swim class a couple days after being discharged 🙂

Untitled

He’s required rescue twice since then, once about a week after discharge and once this past weekend. The seizure this past weekend was quite frightening, with prolonged breath holding and a darker shade of blue to his body then I’m comfortable with but we’ve been able to treat  him at home with oxygen and he’s so far been responding well to the rescue meds that we have for him. He of course continues to have several other types of seizures on a daily basis but these aren’t seizure types that we concern ourselves with too much since they don’t affect Foster’s vitals and we know we can’t get control of all seizure activity in his case.

Meanwhile, Foster turned 2 years old on November 2nd! A milestone we were told on multiple occasions he likely wouldn’t reach 🙂 So that is absolutely wonderful and we had a small celebration at our temporary home for him. We’re renting a small townhouse while our house is being built (about two more weeks!!)  and I wasn’t sure if that many people would fit inside, so I wasn’t planning to do anything to celebrate but I couldn’t let this huge milestone pass by without acknowledging it in some way 🙂

So here are some recent pictures of the boys/family from the last month. Starting with Halloween, Clay is all about dragons and dinosaurs right now, he was a dragon named Smokey for Halloween. When I bought the costume it looked like it would just fit him, maybe a little on the small side but I got it anyway thinking he only had to wear it for one day. Little did I know he’d want to wear it everyday for the next year probably… So next year I’ll get him a costume that’s too big, knowing he’ll want  to play dress-up 🙂

IMG_2978 (2)

IMG_2979 (2)

IMG_2980 (2)

IMG_2981 (2)

IMG_2982 (2)

IMG_2983 (2)

IMG_2984 (2)

IMG_2987 (2)

IMG_2910 (2)

IMG_2991 (2)

IMG_2997 (2)

IMG_3080 (2)

IMG_3112 (2)

 

And here is a ridiculously adorable video of Clay on the way to his first movie 🙂 We went to see The Peanuts Movie. I wanted to take him to a movie last year but I waited and I’m glad I did because he totally understood what was happening this year and was so excited about it!

 

Advertisements

One thought on “November 12th, 2015…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s