Feeding Clinic- Week 4

Originally published 1/11/13

If there were one word that could describe the week we have had it would be:  HOMESICK!  I think that the reality of living in a hospital for the past four weeks has finally hit Dom and Zac.  Unfortunately, while there is a light at the end of the tunnel, that light is about 3 weeks away!

The week started out simply enough.  On Monday we had our “Steering” meeting.  During this meeting the therapists and doctors establish long and short term goals for Dom and Zac.  We are aiming to master the short term goals by the end of our eight week inpatient stay.  The long term goals we will hopefully master once we return home and come back 4-6 weeks later for a “check-up.”  (Yes, once we go home we are going to have to come back occasionally to check up on the status of the boys progress to hopefully prevent them from losing any skills they gained while they were here.  It’s actually a good thing when you think about it.  They are going to continue to support Dom and Zac even after they leave the program.  I like to think of it as the hospital’s way of setting us up to be successful.)  Everyone at the table agreed that Dom and Zac have done tremendous.  However, we need to really focus on keeping them hydrated.  And right now we haven’t really made any progress in motivating them to drink enough water to not need hydration feeds through their g-tubes.  

So we started the week with a little experiment....Dom and Zac were given some glasses with 12oz of water which I was supposed to present to them to drink throughout the day and then bring back to the therapists at the end of the day to see how much they were able to take independently.  

I intended to post “before” and “after” photos, but since they didn’t drink ANYTHING I figured I should just omit the “after.”  It was only Day 1 though....there’s no place to go but up.    

After “steering” things started to go downhill fast.  We usually try to Facetime Justin and Jay every night before bed.  However, this week Zac has been crying “Dada!” and asking to call.  When Justin gets on the phone he cries even louder.  To say it was heartbreaking would be a bit of an understatement.  I don’t think he understands how important it is to stay here...even if the hospital is not the most fun place to be.  He just wants to go home.  It’s all Dom and Zac have talked about all week.  We started a countdown to discharge, but right now I think there are too many boxes to cross off to make it seem like they are going home any time soon.  It is going to be a LONG three weeks if they don’t get out of this funk soon!

I tried to break through the funk in the only way I know how.  I made a scavenger hunt of the John Hopkins hospital.  It has our bucket list of things we we need to check out while we are here.  We started out at the gift shop (come on....I did get to pick the locations after all!)  Then we went to visit the marble statue of Jesus that everyone raves about....it was beautiful and HUGE!  

(Dom is staring at the ceiling because the ceiling was just as beautiful as the statues beneath it.)

We stopped at the “good” cafeteria in Hopkins, the hospital library, and have explored all of the beautiful artwork in the hospital.  Dom and Zac have even started making some artwork of their own!

My last ditch effort to get rid of their homesickness was to redecorate the boys room.  I recruited some nurses and we moved the boys beds around to create more floor space to play.  

It’s a big improvement over our previous set-up that left the boys with basically a 4’x6’ space to play.  If nothing else I hope that it helps them get excited again about “camping in the hospital” and leave all the homesickness behind them.  

But before I forget:  We did have one giant leap forward this week!  Dom and Zac have begun eating together again!  For the past four weeks they have been eating separately with their therapists.  They started out slowly, by having them eating in their separate rooms with the doors open so they could hear sounds from their brother’s room.  On one of these occasions, Dom passed Zac’s room on his way out (he had finished first) and saw Zac sitting there eating.  He threw up his hands and had a look on his face that could only be interpreted to mean “THEY’RE DOING THIS TO YOU TOO!”  They both then screamed in astonishment as Dom continued on his way out.  Yesterday they had their first meal together.  

To everyone’s delight they did very well.  They were incredibly excited to be back together again.  Dom kept blowing kisses at Zac who kept trying to give high fives to Dom.  It was adorable....NOT the most productive eating meal....but you could see that the brotherly love was there.  It was a nice conclusion to our week.  Next week....we tackle the water issue!