Against Medical Advice...

In spite of an outpatient pharmacy versus insurance battle, delays in getting Bobby's final chest xray, and a very slow nurse, yes...

We are finally home!

Hallelujah!

Even Bobby was happy to leave the hospital - he was grinning from ear to ear when we put him into his car seat.

Here are the before and after pictures so you can see for yourself!

Before leaving the hospital...

Get me OUT OF HERE!!!

After leaving the hospital...

There's no place like home....

After we made a batch of his new formula (Vivonex) - clearly THE stinkiest formula ever invented - I sat down to sort through his myriad follow up doctor's appointments and new medications. Let's just say, Bobby's got a steady date with the medical professionals at Children's Memorial Hospital on a near weekly basis, from now until the end of June. It's almost like we never left the hospital. Oh yeah, except that the food and sleep accomodations here are nicer :)

For the medically un-initiated, here's a view of what it takes to keep my little man alive:

 

• Coumadin (Warfarin) 3mg tablet – dose ½ tablet, 1x/day (nighttime) – to prevent blood clots, which are common yet very serious after the Fontan heart surgery
• Augmentin (Amoxicillin-Clavulanate) 600-42.9 mg/5ml – dose 2.4ml, 2x/day for 7 days – for the infection in Bobby's central line
• Lasix (Furosemide) 10 mg/ml – dose 2ml, 2x/day – diuretic to help Bubs rid excess fluid
• Sildenafil 2.5 mg/ml – dose 3.2 ml, 2x/day – for pulmonary hypotension
• Aldactone (Spironolactone) 5 mg/ml – dose 2.5ml, 2x/day – diuretic to help Bubs rid even more excess fluid
• Prilosec (omeprazole) 2 mg/ml – dose 5ml, 1x/day (nighttime) – for GERD
• Miralax (Polyethylene glycol 3350) – 8.5g, 1x/day (as needed) – for constipation
• Triamcinolone Acetonide 0.5% cream (for g-tube site) – 2x/day for 2 weeks (as needed) –  for gtube skin health
• Children’s Tylenol  – as needed – for when mamas can't figure out what else to do with an unhappy, hysterical boy
• Pediatric Vivonex  – medically necessary, prescription only, low-fat, amino acid based infant formula used to treat chylothorax
• Multivitamin / Vitamin C / Probiotics –  with all the other meds in his system, we figure these can't hurt him any
• Prune Juice  – dose 20ml, 2x/day – for constipation (mine, his, ours)

That said, it should be noted that immediately upon returning home, the Mamas had a serious talk with Bobby about his physical limitations during his post-heart surgery recovery. Specifically, the discharge notes state, "Avoid lifting under the arms, avoid heavy lifting, avoid support body weight with arms for 6 weeks. No rough play, contact sports or PE class for 6 weeks."

Tonight, Bobby decided to revise the discharge instructions. He immediately laid on his chest, pushed up to sitting, then surprised both his Mamas during a check at bedtime, when we found him doing this:

It's my discharge day, and I'll do what I want to!

This Bobby's BACK!