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!

Discharge Pending

All things are a go for discharge today. The doctors are pleased with Bobby's progress, and we are waiting on a final chest xray and discharge paperwork. Bobby's also going to have xrays to check his cervical spine for atlantoaxial instability, which is a point of vulnerability in kids with Down Syndrome. Mama A is manning the hospital front, while this Mama is working today.

Here's a picture of our silly boy who has happened upon a way to sleep in his comfort position, while not putting excessive pressure on his chest. He is a little McGyver!

We're all looking forward to being home!

Happy Mother's Day!

Today's the day when we honor the Mothers in our lives. Whether it's your mother, a mother you know, or if you yourself are a mom. Today is the day that we say "Thank You." Thank you for everything you do, thank you for giving us life, and thank you for being a mom.

In honor of all the amazing moms… around the world... Happy Mother's Day!

Love, Bobby and his Mamas

Bobby "Grand Funk Railroad" Grunsted

We're an American band.

We're coming to your town, we'll help you party it down.

We're an American band.

Come On Baby, Do The Locomotion!

Bobby continues to do well, and is more active every day.

On Thursday, Mama A and Bubs had their first play session on a floor mat in his room. We were pleasantly surprised to see that he was able to butt scoot! We were afraid that this particular skill would take a while to come back. Turns out, the boy can do what he loves best! Yay for locomotion!

Bobby is also becoming more communicative as the days go on - he signed music and dog yesterday, and verbalized "'Cout" when referring to his favorite puppy toy, Scout.

We're on track for a discharge on Monday. They are tweaking his medications for a more home-friendly regimen, and by all accounts, things are looking good.

Got the Music in My Soul

Moving Right Along...

Bobby had a busy day yesterday. They started him on IV vancomycin antibiotic to kill the infection they discovered in his central line. They removed the central line, put in a new IV, and removed his temporary pacemaker wires. He had a physical therapy session, and an occupational therapy evaluation, since he doesn't seem to want to use his right hand.

This Mama received a visit from the hematology nurse practitioner to discuss the outpatient care involved with Bobby's new blood thinner. We are no stranger to Coumadin, since he was discharged on it after his last heart surgery. Basically, maintenance will involve weekly INR blood clotting checks for a while, and we'll have to be extra careful if he gets injured or bleeds. It was a little frightening to hear the nurse practitioner describe the symptoms of a stroke, and that we'd have to look out for one if Bubs has any kind of head injury.

Today, we received good news during rounds. The kind of bug that Bobby caught in his central IV line can be treated with gtube antibiotics! This significantly shortens our hospital stay, and means we won't be sent home with a PICC line to administer IV antibiotics! Instead, they will continue the IV antibiotics inpatient for 7 days (5/9/11 is day 7), and then he can take gtube antibiotics after that. They are also now talking about a possible discharge of early next week. Yay!

Miss Elizabeth, the music therapist, also paid Bobby a visit today, and left a tambourine a drum, and two shakers. We also received a lovely fleece blanket from Miss Catalina of the hospital Child Life center. We love Miss Catalina! The music instruments are a welcome addition, since Bobby is feeling better and starting to get r.e.s.t.l.e.s.s. (as are the Mamas :)

Here are a few picture/video tidbits from the past couple of days...

Mama A singing to Bobby (and Bobby's response)...

My little rocker...

Ladies, ladies... there's enough of me to go around...