Lymphangiomatosis and Beyond

First day at home after his three month hospitalization.  Picture of his machines.

It was August 2010 and we were finally home!  We had more machines, medical equipments, medicines and twice as many doctor's appointments.  He also started seeing the hematologist/oncologist.  One of the conditions for the Rapamune was to visit the heme/onc every other week for blood drawings so they can assess his levels. 

Our home nursing was and is still at its maximum hours.  Caleb is classified as a level 3 patient.  This means, he requires almost 24 hour care.  We knew we had to adapt to his medical needs again.  Caleb's resilient and so are we.

One of the major changes we adapted to was to decrease his interaction with the rest of the world.  Previously, we took Caleb everywhere.  With the Rapamune (Sirolimus), an immune depressant, we were careful about exposing him to germs, bacteria, and virus.  Since his immune system is comprimised, a simple cough can be highly detrimental to his health.  I'm amazed how powerful this medication is.  He only takes .2mL of it twice a day.

OVERALL PROGRESS

Prior to his hospitalization, Caleb was making good progress with his motor skills.  He was able to sit up for a long period of time.  He was also eating for therapeutic purposes regularly.  But after this hospitalization, he regressed quite a bit for good reasons.  The priority at the hospital was to treat him symptomatically and breathing was at the top of the hierarchy of  his medical/developmental needs.

Caleb tired easily.  He was not as active as he used to be.  His movement was limited because he was on the ventilator 24 hours a day.  He was also on continuous feeds at a rate of 50mL/hour 24 hours a day. 

Overall, he was attached to several machines 24/7.  Even with all this, our faith in the Lord remained strong.  We did not question why things happened.  Instead, we accepted everything we're going through as a gift from the Lord.

We kept remembering this verse from Romans 8:28:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.