Wednesday, August 31, 2005

Three weeks later:
Sam had a cardiologist appointment yesterday to check on his progress. This was his second trip back to Hopkins in Baltimore since he was discharged (but the first trip was purely social.) His tests were comprised of an EKG (3- or 4- lead, not 12-lead) and an echocardiogram. He still has a "mild impairment" of his septum, but this is completely normal for someone just out of VSD repair surgery. Sam weighed in at 16 lbs. He is starting to gain weight pretty quickly. His next checkup is in two months, around Halloween. And so this blog will continue for a while longer, probably updating once each week on Wednesday. Here is a picture taken last Friday, Aug 26th. He's a happy boy.

Wednesday, August 24, 2005


Two weeks later:
Sam is doing very well. He's up to 15 lb 3 oz now. (6888 g)
He got his stitches out today--it was very traumatic experience for Sam. All's well that ends well though. Here is a picture from this evening. (click to enlarge.). He still has some faint bruising and now that the stitches are out of his belly, those spots will start to heal better (and lose their redness). He's gobbling up solid food now (the usual starter baby food stuff)

Wednesday, August 17, 2005

One week later:
(Note: click on pictures to enlarge)

Sam is doing great. Here's a picture of his homecoming. (Welcome sign thanks to Janna, Emily, and Hannah.) The skin around the sutures on his belly is a little red, so it might be time to think about taking the sutures out. The glue on his chest incision is flaked off in one spot giving us a preview of the scar-- it's amazingly faint.



Most of the glue still has some betadine on it, so appears orange. There's still alot of adhesive residue on his skin from the bandages. Some bruises have appeared in the last day -- two are immediately above and to the left and right of the top of the chest incision. One is on his belly near one of the drain sites. When Sam is wearing a shirt, you would never guess that he had heart surgery just last week.

Sunday, August 14, 2005

Sam left the hospital at noon today

Sam was discharged from the hospital late this morning, less than 96 hours from the end of his surgery. Miracle boy is smiling and feeding like nothing ever happened. The report on his sternum is that it's already stronger than when he went into the hospital. (Sue says it's stronger now because it's wired together.)

Thank you all for your continued support and prayers as we went through this. If you had Sam on your prayer list at church, parish, synagogue, prayer group, etc, please drop me a note with an address where we can send a personal note of thanks.

I'll keep this page updated as we go through the next few weeks, but it may only be 1-2 times per week. If you know how to do news feeds, here is the info for this page:

http://all-about-sam.blogspot.com/atom.xml

Saturday, August 13, 2005


News from Saturday:
Sue spent the night with Sam. His swelling is greatly reduced, but his belly is still out a little more than usual. Janna visited her little brother for the first time today. Sam was sleeping when we got there, so we left him alone and all headed to the playroom down the hall. After about 15 minutes of listening to Janna bang on the little baby grand piano (that sounded like a harpsichord), I decided to check on Sam. Much to my delight, he was up and had just had his chest tube removed and all his IV stuff disconnected. He is now down to three sticky electrodes on his skin, the pulse oximeter on his toe and a heplock on his opposite ankle, should he need any IV drugs again. The doctor said he was doing the best that they could have hoped for and may be ready to go home on Sunday, but I'm guessing Monday is more likely. They moved him out of the Intermediate Care Facility to a general room on the floor since he won't be needing as much nursing attention.
Sam is alert, feeding, playing, smiling-- all the usual stuff. The incision on his chest is about 2" long and looks good, according to those that know what "good" looks like. He also has three holes below that, each closed with 1-2 stitches. Evidently, one was for laproscopic aid during surgery and the other two were from drain lines. All will fade to near invisibility over a few years.

Friday, August 12, 2005

Friday Morning report:
Sue went in this morning expecting Sam to look better. (part of the spiel we got from the Senior Resident yesterday--- yada yada yada, you will see things get better every day). Anyway, Sue was alarmed at Sam's swelling. His belly is hard and swollen and there is general swelling all over. He had a chest xray to look at his lungs-- the radiologist pronounced his lungs as good. They removed the abdominal drainage tube this morning and Sam seems to feel better about getting that out. The pace maker wires were also removed this morning. The plan right now is to remove the other drain line (chest cavity) this afternoon. Sam should be feeling much better once that is out as it is quite painful.
Sam can start wearing regular clothes again and he seems interested in things around him. (A big improvement since when you're in alot of pain, you usually only concentrate on the pain and block everything out). I'll be bringing in a few books for Sam to give him something to look at.

Pictures from last night.

Sam is finally getting some rest after a hard afternoon getting the pain under control. The abdominal drainage bag is visible on the bed next to his left knee. His IV drugs are going in through his right foot. (plastic tubing visible in lower right of picture).




This is the view out of Sam's window. That's the original Johns Hopkins Hospital building-- now the Billings Administration building. The moon is to the left of the rotunda and is a little less than "first quarter". Some reflections from the room are visible in the picture.


The "Christus Consolator" or "The Divine Healer" statue is located in the lobby of the domed Billings Administration Building. Sam is in good hands. Your continued prayers are appreciated.

Thursday, August 11, 2005

First, some corrections:
Sam still has his pacemaker leads in place, but the pacemaker itself is no longer attached. The wires are just coiled up and taped to his chest. Also, both drain lines are still in place and won't be coming out until they stop producing fluid. One of the drains is in the chest while the other is in his abdomen. Sam is aware at times with his eyes wide open, but I don't think he's looking for a toy just yet-- perhaps he is just soothed by tactile sensation. Yesterday there wasn't much swelling. Today we have swelling-- not necessarily localized to the chest, but just general swelling all over like fluid build up. The decision was to put him back on a diuretic (Lasix) for the time being and work to step down the dose over the next month to zero. He's been on this drug since he was about 2 weeks old. His body is used to it.
Sam was moved out of the PICU today into a "step-down" intermediate care floor. There are 6 beds and 2 or 3 nurses. Up in the PICU he was on a short-acting pain med which worked fairly nice for him. As that wore off, they tried to manage his pain with Morphine. It was given in two half-doses. When the first one didn't have an effect and Sam was still moaning/crying after quite some time, they went with the second half dose. That also didn't cut his pain. Finally called in the "pain team". [what a name]. They delivered with PCA (patient controlled analgesia)-- pain meds with a push button control. It took what seemed like forever to get the stuff from the pharmacy, then get all the apparatus hooked up and delivering meds. Even then, it still wasn't a slam dunk. The morphine has a side effect of causing skin to itch, so Sam was scratching at his face continuously. As you might have guessed, there was another drug to counteract that effect. Finally around 7:30 or 8:00 pm, he started to get relief and rest comfortably. Today was harder on Sue and I than yesterday.
Something I left out from yesterday is that Sam had two transesophageal echocardiograms -- one to baseline his heart function before the surgery was started, then another after the patch was put in place over the VSD and he was off bypass to verify there wasn't any leakage and that everything was working as expected. Once that second test confirmed that everything was good, they began to close him up. So what shows up now is a little red spot on the upper left side of his lip-- just a sore from some of the physical trauma of going in through his mouth for that test. The transesophageal echocardiogram gives an excellent picture of all four chambers and valves of the heart whereas a standard (transthorasic) echocardiogram will miss the back of the heart.

Also, there was some blood in Sam's urine, but that is somewhat expected since the heart-lung machine is pretty rough on red blood cells. Any that are damaged will be flushed from his system as waste products.
Update from Sue-- Sam is off of one of the heart medications this morning and they will soon be removing the central line in his neck and the drain lines and pacemaker leads going in through his chest. He's aware and is looking for a toy. I'll bring something this afternoon.

Wednesday, August 10, 2005

Sam in the PICU before any lines have been removed













Sam after some lines are out. Note that he went on an oxygen mask. That's the elastic strap from the mask going across his right cheek.
Surgery day... August 10, 2005 Arrived at Johns Hopkins Hospital at 5:50 am. Took care of some minor paperwork and got him changed into hospital gown. We carried him into the OR at 6:45 am and set him on the air-heated bed/table where a whole team took over getting him hooked up to monitoring equipment. They anesthetised him and he fell asleep in a few minutes without a fuss. We walked out and got updates through the Patient Representative in the waiting room. There was a delay getting blood so surgery didn't start until 8:45 am. At approximately 10am, Sam was on the heart-lung bypass machine. The surgeon, Dr. Duke Cameron, went in through the right atrium, then through the tricuspid valve into the right ventrical to patch the defect (VSD) between the left and right ventricals. Unfortunately, the VSD was very close to the tricuspid valve and not visible through the valve. Dr. Cameron had to remove the valve to see and patch the VSD, then reattach the tricuspid valve. Sam's heart was arrested for 100 minutes due to this complication instead of a more typical 40 minutes for a VSD repair. Sam was taken off bypass at 12:05 pm with closing at around 1:30pm. He has some temporary pacemaker leads touching his heart and some drain lines coming out of the incision. He also had a nasal-gastric tube, central line, breathing tube (ventilator), catheter, EKG leads, pulse-oximiter, IV lines in his foot and hand. Quite alot of tubes for a little guy. We caught a quick glimpse of Sam as he was wheeled from surgery past the waitng room to PICU. He looked pretty good, all things considered. We had about 30 minutes to grab some lunch before we could see him in the PICU, so we jumped at that opportunity and made a phone call out with news to be relayed via email. (thanks Ginny!) After a quick lunch, we got into the PICU and stood watch over Sam and talked with doctors, nurses and respiratory therapists. Sam had breathing tube and feeding tube removed slightly after 5:00 pm.

Wednesday, August 03, 2005

Four month Pediatrician checkup:
Pediatrician visit yesterday: 75th percentile for length, 50th percentile for head circumference, 25th percentile for weight. Sam weighed in at 13 lb 15.5 oz. All of his cognitive and motor control functions are normal.