Alex was discharged to the Ronald McDonald House on Thursday which was initially very exciting for all of us.  Unfortunately, I don’t think any of us were prepared for what this all would entail upon discharge:

 

We will be residing here for approximately the next 6 weeks, and he is currently on over 20 medications that are to be given several times all around the clock, and most are given via his jejunal (intestinal) feeding tube port utilizing multiple syringes with special adapters.  He is also on special formula feeds via his feeding tube (which he has had horrible issues with tolerating due to his gi tract being reconstructed) that also require enzymes being calculated, crushed, and added over the course of his 20 hour feeding period, and lipids being calculated and added to that solution.  In addition to the feeds, his feeding tube is vented, flushed, and the feeding tube surgical site is cleaned daily.  

Due to the diabetes, he is on constant insulin delivery via a pump attached to his body and there are different rates that are calculated throughout the day based off of trends in his glucose and his typical activity throughout the day.  This is regulated and calculated by me checking his glucose every 1-3 hours around the clock, inputting the numbers into his pump, and then uploading data daily onto two different computer programs.  Each day in the morning I then call the Endocrinologist and go over numbers with them.  They make changes if needed to his continuous insulin schedule (basal insulin), but if he is too high over the course of the day/night, I am responsible for calculating and administering an insulin “bolus” (one-time bigger dose given as needed).  If he is too low, I administer sugar via his feeding tube and keep rechecking until balanced again.  If it’s extremely low I give an injection into the muscle of his leg and dependent upon how low, possibly even call an ambulance (hopefully we never get to this point).  

Due to the frequency in lab work (several times per week) and the possibility of him not tolerating his feeds via the feeding tube and to be able to meet nutritional requirements, his central catheter was left in (PICC line).  Due to the proximity of this line (near the heart) and the risk of infection, I am responsible for scrubbing it with a sterile solution (while remaining sterile myself) and flushing it twice daily (to keep it patent), and checking the dressing every 3 hours.  

I am also monitoring his oral (by mouth) intake (only Powerade Zero at this point) and his output (bowel movements and urination) because he is having major issues with motility.

Unfortunately we have had issues with establishing home-health due to Indiana insurance/Ohio location, so that has also been a major inconvenience. The hospital has been great about helping, but I have been purchasing many of his supplies out of pocket at this point.

 

Alex has been very tired, painful, and very nauseous at times, but otherwise has actually handled this all really well and has remained very happy and positive.  At this point we don’t know if/when he will ever eat again or will even continue to tolerate the intestinal feeds (if he doesn’t start eating, the rate he is at right now will not be enough for him nutritionally, and he cannot tolerate a higher rate of formula at this point), and it is too soon to know how well the islet cells (the cells that produce insulin and were taken out of the pancreas and injected into the liver) have taken, especially since he’s not eating (once he starts eating I have to calculate every single carb and then based off of the carb total calculate an insulin bolus to cover the food).

 

In addition to the daily medications and maintenance, we have daily appointments with multi specialties and physical therapy at the hospital.

  

As much as I am truly grateful that Alex has been able to have this lifesaving surgery, with this amazing team, and at this phenomenal hospital, I must admit, I am a little overwhelmed and exhausted.  I know it will get better, and I am trying to take this day by day, but this is why I am also so very grateful for the assistance and support of so many of you.  I could not do any and all of this without the help of such wonderful people.

Thank you to all!!!