We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Sunday, April 29, 2012

What a Week!?!

We're happy to report that Jake is finally over his cold...not so happy to report that we spent most of the weekend at Children's Hospital. So, let's re-cap the week from beginning to end.

By Monday Jake's cold was completely gone! Yay! The absolute best part was that we got some great big smiles and laughs that night. A little smile goes a long way and let's us know our little man is feeling better!!

On Tuesday...the "official" announcement was made that Uncle Joe and Auntie Jenee are going to have a baby!! We already knew a few weeks before, but couldn't quite share. Jake is sooooo excited to have another new cousin!! Due somewhere around November 3rd.

On Wednesday, Grandpa Beaver (Josh's Dad) came by to visit and played guitar for Jacob. He always lets Jake strum along and he LOVES it! Grandpa Beaver has been in Hawaii the last several months helping out his parents who also live there (the same one's we were supposed to visit back in February), so he's missed his Grandpa.

Jake strumming the guitar with Grandpa Beaver

On Thursday, Jacob had his first appointment with his pulmonologist, Dr. Zee and it was very informative. We learned that Jacob has paradoxical ("seesaw") breathing. Jake's lungs inflate during inspiration and balloons out during expiration; the opposite of normal chest motion. This is common for people with diseases like Jacob has to have and affects his ability to move air efficiently, which is part of the reason why he has such difficulty fighting off colds. We also found out that due to Jacob's low muscle tone, he will have a harder time being able to cough and will experience looser throat muscles, which cause the piggy snorting sounds that Jake often has. Dr. Zee gave us some good tips on how to assist Jacob when he gets colds. We were happy to hear that Jake does not need oxygen at this time, but Dr. Zee does want Jacob to have a sleep study done in about a month in order to see how he breathes at night. We have some concerns about whether he has apnea (periods of time where there is no exchange of air in his lungs), so the sleep study will confirm if he is having this problem. All in all, it was a helpful visit that reassured that we're doing everything we can for Jake right now.

On Friday, Jake slept the entire night on Thursday...what!?! Jake NEVER sleeps through the night. We thought it was because of his busy day Thursday, but turns out he spent most of the day being very lethargic and even threw up once before eating, which is very unlike him. He was in bed by 6:00 pm and didn't wake until 6:30 the next morning -- this absolutely unheard of for Jakers to do this!

Oh Saturday...longggggg day!!! By Saturday morning, we were worried! It's not like Jake to sleep for such long periods of time and even more worrisome was to see him not eating. He also hadn't had a bowel movement in 3 days -- also very unlike him, but probably because of his iron intake. I called Jake's pediatrician's office and they recommended going to the emergency room since he was going to need to have some diagnostic labs and tests done to figure out what was going on. After his last hospitalization, we didn't want to take any chances. Upon arrival we were brought back very quickly and about 10 minutes into the visit, Jake threw up on Momma and had a tough time keeping anything down most of the day. After several labs (4 needle sticks -- poor little man) and a chest x-ray, results showed that his liver enzymes were high, but actually better than they had been. Other than that, everything looked good and/or better than prior labs! Great news, but baffling as to why Jake was so lethargic and not eating. In the meantime, they started Jake on IV fluids and after 9 hours in the ER, we were admitted to the floor. I won't go into details here other than to say...it was very stressful and we did not want to stay overnight and risk exposing Jake to more germs, but we ended up staying the night to ensure he was properly hydrated. Jake was quite alert most of the night and even gave Momma a big smile when she tried to coax him back to sleep for the umpteenth time. Guess the fluids helped.

A gigantic arm splint (for IV) doesn't stop bunny snuggles
By Sunday, Jake was back to normal. Still not quite sure whether or not Jacob was fighting off something before it grabbed a hold or whether he was just backed up from all the iron supplements that he's been taking. Regardless, we pushed for an early discharge and we were home by 9:15 a.m. In fact, Jacob was doing so well that we all joined Josh's family for a nice lunch and got to hang with the whole fam! A nice end to a very busy and eventful week!

1 comment:

  1. You guys are the best!! Sorry you had to spend so much time at the hospital but great to hear little Jake is feeling better. That is great news.

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