Too Much, Too Soon

Where do I start...

Let's start with some good news! First off, Jake's new seizure medication is working! We haven't seen a seizure in 2 weeks! Secondly, my maternity has officially started and I can now be at home full-time with our little man. Josh and I have juggled our schedules for more than a year to accommodate being home with Jacob, but his care needs have gotten to be too much. It was becoming much more difficult to juggle work and caring for Jake, especially when all I want to do is be home with my little man.

Now, for the not-so-good news -- oh heck, I'm not going to sugar coat it; the news is not good at all!!

We've seen a lot of changes over the last few days and we're trying our best to keep up. Jake's disease has progressed significantly over the last few months, but the changes we've seen over the last few days have been drastic and happened virtually overnight. On Thursday evening, Jake began having a very difficult time breathing and I had to put him on oxygen. When Josh came home from work, he was caught off guard to see him on oxygen since he had been fine earlier in the day. That same evening he woke up from his sleep several times pretty agitated, so I administered his first dose of Ativan to help alleviate his distress. We know he is experiencing a great deal of discomfort and pain from his enlarged organs because he now cries most of the time when he is awake. The ativan helped a little, but it didn't help much.

As of Friday, Jake is now on oxygen around the clock. His breathing has gotten so bad that he often gasps for air despite being on 4 liters of oxygen. We began giving Jake morphine to help with the shortness of breath and to better treat his pain. The morphine has helped tremendously, but he now sleeps pretty much all day long. At least now, he is feeling comfortable.

Jacob is no longer able to consume any sort of nutrition orally -- not even a bottle, which used to provide him so much comfort. The risk of aspiration is too high even to give him sips of water, so we're using little pink sponge toothettes to moisten his mouth.  Being on oxygen has really dried out his mouth, so we're being diligent about keeping his lips moistened and I even bought him some strawberry flavored lip smackers to add a bit of flavor. He really likes it when I apply anything to his lips, so I know it must feel so soothing to him.

The feeding changes, addition of new medicines and overall slowing of his digestive system are causing Jake to have constipation, which only adds to his discomfort. We've replace his bolus feeding with prune juice to and are administering via g-tube...thank goodness, because we tried it and it's GROSS!

As if this weren't enough, we've also been battling a really red g-tube site caused by leakage around his g-tube. The last thing Jake needs is an infection! We've significantly reduced his overnight feed amount to help alleviate leakage from the site since his body seems to be digesting more slowly. Hospice advised us that his full tummy combined with his enlarged organs are likely exacerbating the situation by constricting his lungs, hence the difficulty breathing.

We had hospice come over earlier today and we received confirmation of our worst fear...Jake's little body is shutting down. Although it is something we knew to expect with Jake's disease, we did not expect it to happen now. This is all just too much and definitely too soon. The timing couldn't be worse as we anticipate the arrival of our baby girl any day now. How do you simultaneously prepare for one of the best days and the worst days of your life???

Please send Jacob and our family all the good thoughts, well-wishes and prayers you can -- especially comfort to Jake, as well as strength for Josh and I, as we deal with this most incredibly difficult time in our lives.



Jake is still enjoying his balloons : )