Sunday, March 24, 2013


It's Sunday night, and we're all home again! The Colorado snow storm that rolled in Friday night made our Saturday discharge plans a little bit harder. Jacob and I woke up to winter wonderland Saturday morning. I knew that it would take us a long time to get home, and with Jacob needing frequent suctioning, we knew one of us had to sit with Jacob in the back. We decided that we would leave one car at the hospital, and all drive home in Jacob's handicap van.

Joakim called me from the road, and said that he wouldn't feel safe to drive Jacob home. Too many stranded cars along the highway, and very slippery road conditions. Our whole hospital room was packed up, and discharge instructions were printed...and change of plans! Joakim decided to stay with Jacob for another night, and Sarah and I drove slowly home.

As the day went by the storm started to slow down. Joakim decided to give it a try to get Jacob home after all. This time around, the discharge took forever! It was as if they had nothing ready for us to leave...By dinner time, we were finally all back home. Jacob feel asleep on the bean bag with sister.

Every time Jacob comes home from the hospital, there are lots of things to take care of. There are new prescriptions to fill, new procedures to follow, unpacking, and Jacob's nursing company has to come out to get services resumed. It took us all night to get back on track, but we were all thankful to not have yet another night in hospital beds. Jacob sure knew he was home again. He slept for 14 hours in his own bed!

Jacob is still not over his cold. This one will take a while. He needs oxygen around the clock, and his secretions are thick and more frequent. The good news is that Jacob is peeing again! We have not had to catheterize him, since he got home. Our big worry is if we're dealing with a flare up of his colitis. We're back to weighing every diaper, and doing stool replacements. We're waiting for GI test results that will tell us if Jacob has an inflammation of his colon. They increased Jacob's medications, which is supposed to keep him in remission. The big question mark is if he will need steroids again or not. We're all hesitant to start that again, but it might be what we have to do if things get worse or not are improving...

We know that this week will be full of follow up appointments, but I sincerely hope we can manage everything from home. The big worry is dehydration if Jacob's colitis gets out of control. We have been there, and we know how it looks.

And it is spring break week around here, so in between doctor's appointments, we're hoping to have some fun! We're hoping that Jacob can get to play with his friend Selina. Maybe a trip to the zoo if the weather warms up? I am hoping to get some special time with my girl, since she is off from school all week. And more than anything, we're hoping to not have to deal with the poop monster...

Have a great spring break everyone!

Love, Maria.


  1. I hope you all have a great Spring Break at home!!