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.

Saturday, April 21, 2012

Delay in the Game(Plan)

Jake caught another cold right after Easter, so we've had to postpone his surgery. It started off with a little sniffle, but he developed a cough with a junky sound in his upper airway and harsh respiratory sounds. The congestion often causes him to vomit, so it's a struggle to keep his food down. We began administering albuterol treatments several times a day to help with his breathing and started him on a perscription to hopefully fend off any ear infection or pneumonia that might be lurking. We're trying to be as proactive as possible to fight this thing off fast. We have no idea where his cold came from since we haven't really taken him out of the house. It's very apparent that he is incredibly susceptible to germies floating around.

As of today, we feel he's doing better (cold wise), however his energy level is still pretty low. And is if Jake weren't already dealing with enough...he is cutting a molar and has been really fussy. His gum literally split open and was bleeding last night, but he finally found comfort in a cold washcloth on his gums ~ thank goodness! Jake is one tough little man!!

Our goal right now is to get him through this cold and keep him healthy so that he can finally get his feeding tube. Jake needs more strength to fend off these colds and we'll keep fighting this uphill battle if we can't get him the nutrition that he needs.

New surgery date: May 10th. Jake will have a pre-op appointment a few days before his scheduled surgery date to ensure things go smoothly with the anesthesia.

Due to his recents colds, his respiratory issues also have us worried and we really wonder if he is in need of supplemental oxygen . He has an appointment with a pulonologist next week, so hopefully we'll get some clarity on what we can do to help him when he's having labored breathing.

Given the hot weather (87 degrees!), we decided it was time to break out the kiddie pool and give the little man some time to splash around. It was just what Jake needed to cool down and relax after being couped up in the house sick for almost two weeks. Josh leaned him back at one point and he was kicking his feet while babbling up a storm. It was soooooo good to see him happy!! Of course, he never wants to smile for momma's camera -- oh well, he's still a handsome little fella!

Jake sportin' his cool new froggy sun hat

If you have the time, please say a little prayer and send good thoughts to a special little "warrior" named Wylder. He is another little boy with Niemann-Pick disease type A and is currently in the hospital fighting off pneumonia. We've been thinking about the Warrior and his family a lot this week and hoping for a speedy recovery, so he can celebrate his upcoming 3rd birthday!! His parents have very fun things planned for him!

2 comments:

  1. Hope the cough and cold clear up quickly. Thinking of your family...

    Nanci & Mike Glassman

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  2. Poor little man! Not only another cold, but cutting teeth too :( Hopefully he can get better and the new game plan with be smooth sailing! Love his little froggy hat! <3

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