Life with 4 casts: take 1

Time has been escaping me lately… it’s weird how that happens isn’t it?

We were hoping to get our house on the market by may 1st. Goals are a powerful thing… they thrust us into motion. Our basement bathroom is finally getting mudded and theres still a lot to do… but by the end of the project we will have turned our house from a 3 bedroom 1 bath to a 4 bedroom 2 full baths and a much nicer house that I won’t be embarrassed to sell (it also was pink and now its not so thats something) So Im trying to be patient. (I will totally post before/after pictures soon 🙂

May 3rd was Lucy’s second birthday. I am seriously so in love with this little girl. Her imagination is blossoming and she plays from dawn til dusk. She’s growing up whether I am ready or not. We had a quiet morning last thursday when my mom was gone and Jack was sleeping. We cuddled, read books, played with her babies and the whole world was ours. Then suddenly she started crying…. she had to poop and they were “guck” (stuck).  – Yes, mom’s will blog about poop… sorry – She cried and cried and then stopped! But there still was no poo…

I asked her,  “Lu, where did the poopies go?”
“They went night night” she said.
My heart melted.

To celebrate the poo’s eventual arrival, we took a walk in the foggy cold morning that turned our wooded road into magic. It was dreamy and we talked and walked while holding hands all the way to the small creek down the hill. We were having such a lovely moment I tried to take advantage of a possible “teachable moment”.

I asked her, “Lu, do you know who made the river?”
She looks at me so serious and pensive…
“Kate” She replies. I burst into laughing which makes her laugh. See, Kate is her four year old cousin whom she adores and in her mind must be almighty.

There are these moments of pure joy right now happening in my life – where I feel like I will someday look back on these days and say “those were the best days of my life”

They are also the most stressful.

We moved in to my mom’s house after Lucy’s birthday party on may 3rd. We left for Boston early May 6th. His surgery was on June 9th. We returned on May 14th. But not without a little drama.

The MRI Fiasco and the Chicago Fire of 2014:

What took us hours to live out will only take me a few sentences to explain. Hardly seems fair – haha… but I do want to write it before I forget!

We met with the craniofacial doctor to review Jack’s CT scan the day before surgery. I was shocked to see that the ventricles in his brain were massive. They have grown a substantial amount since his first scan shortly after birth. The doctor kindly explained that though kids with Apert typically have larger ventricles, they do not normally keep growing. 90% of people with apert do not need a shunt, and he was going to send the scan to the neurosurgeon to review and see if Jack could qualify for a minimally invasive procedure instead. The neurosurgeon promptly replied that he needed a full 3D MRI to determine the cause and make a plan for the June surgery.

Everyone seemed so calm about it, so I tried to follow suit. We were all ready for surgery the next day so apparently it wasn’t something worth freaking out about yet?  I’m not sure if I will forget the image on that screen. He seems so incredibly normal to me – am I just biased? Probably… but really… he is doing SO good!  The ability for our brains to compensate is truly remarkable.

We got to the ICU after surgery and they told us that we were on the “waiting list” for an MRI the following day (a saturday). The problem was that since it was a weekend, the anesthesia team was understaffed. Jack fasted that night and after a long wait – we weren’t going to be on the schedule. Sunday night we were told that they cancelled another appointment to make room for Jack on the Monday afternoon schedule. They still wanted him to fast that night in case they could fit him in earlier. We were ecstatic to finally be taken to radiology. As I was filling out the release paperwork, one question asked, “Are there any implants?” After all the doctors aware of the MRI (I believe I told you about those conversations already) I was surprised to realize none of us had thought about the pins they had put in his hands. I asked and thus started a 2 hour scavenger hunt to determine if the wire or pins in his hands were safe. It was a LONG two hours of waiting for various reports. Both surgeons we needed to talk to were in surgery and each of them had to talk to the radiologist. Wow – it made my head spin…. but at the end of it, we all felt really good about the plan. I cannot tell you how happy I am to not have those prayers I was praying answered for him to get the MRI I was so set on him getting. There was no way for anyone to say if the MRI machine would pull the pins out of his hands which would have broken his bones… or if it would just warm them up and may burn his skin – but we wouldn’t know because he would have been sedated and the dressing was not going to be removed. Phew – – – such a run around… but also a blessing! Now we are planning to return to Boston a week earlier than we originally planned to have his casts and pins removed, do the MRI under the same sedation and voila! problem solved. 🙂

—————————————————————————–

We were now able to go home… We checked out of our room and were waiting for the taxi when Seth got a message pop up on his phone that our flight got cancelled. Apparently there was a small fire in the chicago radar tower which shut down both chicago airports. We still went to the airport to see what we should do. We waited in line and a very nice man told us that it was not the airlines fault that our flight was cancelled and there was nothing they could do. I was so tired and so bummed. It had been such a long week. He kindly offered to get his supervisor. I left the kiosk. I couldn’t listen to another disappointment and Jack was hungry so I got an out. I don’t know if Seth begged or if God heard my cry or both – but the supervisor gave us a voucher for a free hotel room and dinner at an area hotel, as well as a ride there!  Wow – my mind was blown at God’s kindness to us. Although I would have loved to be home with my baby girl, that night turned out to be the most relaxing one of the whole trip. The hotel was nice, the dinner was tasty, and we all got a good night sleep (relatively speaking of course).

Now, you ask… how is life with four casts? –

It’s almost been 2 weeks since his surgery, and he is doing tremendously well. It’s much smoother than I had anticipated. He is such a chill little boy – makes the best out of any situation. He even seems to enjoy how noisy he can be with them!  It does help that he was not mobile beforehand so the casts haven’t limited him too much. He is still playing with toys and being the sweet baby boy we have come to love. He is still a terrible sleeper, and 4 casts have not helped. About a week went by and I tried to ween him off of the narcotics. He started getting much grumpier and we really saw his true colors. It has continued being a little touch and go if I forget to stay ahead of the pain. He also is cutting 6 teeth and now has thrush… I seriously can’t believe how much medicine I have had to give my little boy in the past 9 months. I feel like my changing table is a miniature pharmacy and I really don’t love it… it was fun though going back to the pediatrician’s office and see how everyone loves him there. We are “frequent flyers” there and they are all so supportive of Jack and his progress.

What a bath looks like with four casts:

sponge bath.jpg

 

Make sure to check Jack’s facebook page for other fun photos of our life with casts…

At the end of the day, I am filled to the brim with gratitude that God gave me this little boy. I love getting to know my babies and am so blessed by their lives thus far.

 

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