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!

Fumbling Towards Ecstasy (er, Surgery)

Bobby continues to do well at school, and this Mama had a nice long chat with his new occupational therapist. She was very enthusiastic about Bobby and his interactions in the class, and she's actually been the one working on oral feeding practice with him this week. She showed me a gait trainer they have at the school, and wants to try it with Bobby to help him practice walking. I am all about this OT today.

In other not so great news, we received a call from the surgery scheduler that Bobby's heart surgery date got bumped out to next Monday, 4/18. Apparently, there's another newborn baby girl that's having an emergency Norwood procedure. Our prayers go out to this family.

They are also concerned that since he has cold/upper respiratory symptoms, they may want to move the date out even further. They will re-assess when Bobby has his presurgery labs, xrays and physical with the APN (advanced practical nurse) this Friday.

Tonight, Mama A was playing with Bubs (rough-housing a bit), and she noticed that his lips started to look blue. We debated calling 911 or taking him to the emergency room, but we learned from his last admission a week ago, that they won't do anything more for him on an inpatient basis than help us kill time until the surgery date. So, yes, they know during periods of physical exertion, Bobby experiences a lack of oxygen in the blood, which can cause his lips or skin to turn bluish in color. It's terrible, and we particularly loathe this latest symptom of congestive heart failure. However, we know from his cardiologist that one of the reasons why they discharged him last week, was to avoid him becoming ill from the germs and iatrogenic conditions inherent in that setting, while we wait for the surgery date.

Still, nobody wants to see their child turn blue. Not even just a little bit.

Sunday Funday

Team Grunsted has a big week ahead.

Tomorrow our big boy is going to early childhood education (preschool) for the first time. The week ends with him having open heart surgery. It's going to be a wild ride here on Magnolia Avenue.

In preparation for the events of the week, we all got sensible haircuts, and caught up on laundry. In typical Bobby fashion, the haircut was traumatic for all involved, and the front of his hair is uneven. But, he's still our sparkling Bubs and it's a dramatic improvement over the surfer dude hair style he's been sporting of late. The "after" picture is shown here. Note also the gash on Bobby's forehead - sustained when he hit his head on one of the crib slats. I wouldn't have believed it if I hadn't seen it myself. We'll see if the start of school tomorrow brings a visit from DCFS, checking on Bobby's safety at home.

Bobby continues to have an upper respiratory infection, so he started a course of antibiotics yesterday, as we race the clock to get him well by Friday. Mama V is also under the weather, and dually loaded up on Vitamin C, Zinc, and chicken soup.

Today was an unusually warm day (80s), so we violated house arrest and ventured out to the back porch for some rollicking good fun on Bobby's favorite swing. The boy loves a good swing!