All about Sam

2011-08-15T00:58:00.004-04:00

Wednesday August 10, 2011 -- 6 years post-surgery
Sam is finishing up his last few weeks of summer before going off to first grade. I see I never got around to posting a picture this last March. Here's a picture of Sam in July with a cicada.
Not much to report. At cardiologist appointment in May, we learned that apparently the ASD is still present, but not an issue.

2011-03-30T14:48:00.002-04:00

Wednesday March 30, 2011
Sam is 6 years old today.
Stay tuned for an updated picture.

2010-09-01T02:22:00.002-04:00

First day of kindergarten -- Sam waves goodbye

2010-08-15T19:54:00.004-04:00

Tuesday August 10, 2010 -- 5 years post-surgery
Sam is going to kindergarten in a few weeks. First picture is from mid-June. Second picture is from camping trip in July.

2010-04-01T07:06:00.002-04:00

March 30, 2010. Sam turns 5 !

Janna (age 8) provides big sister-type help posing for this picture a few days before Sam's 5th birthday.

2009-10-24T02:18:00.002-04:00

Saturday October 17, 2009
Walk to Defeat ALS today in Baltimore. It was a cold (45 F) rainy day, but Sam didn't mind. He had fun doing all the things a 4-year-old boy should do on a rainy day.

2009-08-27T19:12:00.004-04:00

Monday August 10, 2009 -- 4 years post-surgery
This year was a blur as the 4th anniversary passed us by. Nothing new to report about Sam. He is getting ready to go into his final year of pre-school before hitting the big Kindergarten milestone.

2009-07-14T19:47:00.004-04:00

June 2009 - Germany.
It looks like we forgot to post an updated picture for Sam's 4th birthday back in March. Here he is on the cog train ascending the Zugspitse in Germany last month.

The next picture is the playground area at the farm where we stayed near Stuttgart.

2009-01-31T09:09:00.003-05:00

Christmas 2008:
Sam was proud of the tattoo on his arm and was trying to show it to the camera.

2008-08-04T19:36:00.003-04:00

Sunday August 10, 2008 -- 3 years post-surgery
It has been three years now since Sam's heart surgery. It is mostly a distant memory these days except for the annual cardiology appointment and a few faint incision scars. We remind ourselves as the anniversary approaches of the blessing of Sam, the great people at Johns Hopkins and the wonder of open heart surgery. We've been watching the ABC special series called "Hopkins." One of Sam's surgeons was hilighted in episode 7 in the series. (Luca Vricella, MD.) Dr. Vricella assisted Dr. Cameron during the surgery. I just reread the August 2005 blog entries. It is truly amazing how far we've come in three years.

2008-04-09T07:55:00.003-04:00

Sam is 3 years old now!

Sam had another routine cardiologist appointment a few weeks ago. All is well. Here's a picture from the day before his 3rd birthday.

2007-08-10T07:28:00.000-04:00

Two years later:
It was two years ago today that Sam had his open heart surgery to repair his VSD. Sam is doing great as usual. He's talking alot now. We're waiting to hear what he's been thinking about these past two years since his heart surgery. :-)
We rented the movie "Something the Lord Made" again and were reminded of the great fortune we have in being the beneficiaries of ground-breaking cardiac surgery in the last 50 years. This is a picture of Sam last night. He is 2 years 4 months old now. (click picture to enlarge)

2007-04-08T09:29:00.000-04:00

Sam is 2 years old now!
Sam celebrated his 2nd birthday at Rocky Acres B&B in Lancaster county, Pennsylvania. He had a great time on the farm and on our day trips out to Amish area and a ride on the Strasburg Railroad.

2007-02-23T20:22:00.000-05:00

getting back to normal:
Sam is getting back to normal. He hasn't vomited probably since Wednesday. Looks like the ileus is passing as expected.

2007-02-21T20:27:00.000-05:00

Hypoactive Ileus:
Sam's followup appointment with Pediatrician today. He was diagnosed with a hypoactive ileus-- a functional rather than mechanical obstruction of the bowel. The game plan for now is to feed him small amounts and watch to see it progress back to normal. There is already evidence that we're heading in that direction. Sam only vomited once today.
On happier news, the weather was warm today (near 50 F after weeks below 32 F), so Sam got out of the house for a while and enjoyed running around and splashing in the puddles left by melting snow/ice we had last Wednesday.

2007-02-20T09:54:00.000-05:00

a rough patch:
Sam has had a rough time these past two weeks. At first, he was vomiting at night only, then would be fine during the day. Each day, we thought it was over, only to have it repeat. After a few days of this "night vomiting exercise", we got pretty good about changing him and the bed. That's when things took a turn for the worse and Sam started violent upper/lower GI distress every half hour last Thursday and Friday. That was the flu ravishing his little body until he was limp and listless. Sue and Janna both got sick within 30 minutes of each other Friday night. As the last person standing in the house, I pressed on with laundry (lots of dirty sheets, towels, clothes), tending to the sick, and other chores all the while wondering when it would get me. The answer was 3 am.
At 7am, Sam was feeling better but had a house full of sick people who couldn't take care of him. We made a distress call to Mark&Lisa who said they could take him for the day. Much to our surprise, Janna was also better and joined Sam for the day at their cousin's house. The day stretched into a 24-hour sleep-over. Sam did vomit up his lunch, much to our dismay. He also had a rough time overnight-- not sleeping well and vomiting again. When we got this news Sunday morning, we were well enough to resume parenting. Lisa brought Sam and Janna home. Sue immediately whisked Sam off to an impromptu Pediatrician visit at 11 am. Poor little guy-- besides the flu virus last week, he has an ear infection and rotavirus. He got two shots of antibiotics (half dose in each thigh) for the ear infection since it's doubtful he'd be able to keep oral antibiotics down long enough to be effective. Tomorrow (Wednesday) he goes back for another pair of shots. So the sickness continues here. Last night was a really bad one for Sam. We pray that Sam will be free of these bugs soon. He's lost a few pounds since this started, dipping back under 30 pounds. We're just watching to make sure he stays hydrated.
Special thanks to Mark, Lisa, Emily, and Hannah for hosting Janna and Sam from Saturday am until Sunday am. while we recovered.

2007-02-02T20:29:00.000-05:00

22 months old now:
Sam had fun in the snow last week. It wasn't much, but an inch of snow is
better than nothing. He seemed to like it. He's pretty cute all bundled up
in his bright yellow winter jacket and the "Floyd R. Turbo" hat with built-in
ear warmers. He has matching mittens to complete the ensemble.

Sam is 22 months old now.

2006-12-21T18:07:00.000-05:00

almost Christmas . . .
Merry Christmas from Sam and Janna (and Sue and Bob)

2006-11-27T22:05:00.000-05:00

almost 20 months old
We've fallen way behind on postings for this blog. Mea culpa.
Sam got a 9-1-1 call a few weeks ago from our daycare provider. He grabbed the wrong cup and ended up with real milk instead of his soy-based formula. He ended up coughing for a while before emptying his stomach contents on the living room carpet at daycare. She had already called 9-1-1 right before that happened, but then cleaned up his face and chest with the milk-contaminated shirt he had vomited on. This caused localized skin reaction in those areas. The local rescue squad was in the driveway when I showed up to pick him up at 4:50 pm. He was inside being a good boy, sitting with a tiny little blood pressure cuff on his arm. He had no breathing problems and was treated with benedryl for ingested and skin-contact allergen incident. He was feeling pretty spunky when I showed up and was pushing all the buttons in the rescue squad. (lots of lights and alarms to play with!). Sam says "button" for all the cool things that need to be pushed. We signed the waiver and accepted him as is without a trip to the hospital. He was fine that evening.
When you ask Sam a simple question like "Who wants dinner?" or "Who wants to play?", he responds with a slightly feeble "I do" and raises his arm up. It's priceless.
Sam goes to the allergist tomorrow-- a follow up on antigen levels in blood from blood drawn last week. We're hoping to get baseline levels on his allergies to milk, egg, and beef. Janna is in the same boat, but at 5 years old, we're hoping for some drop in levels on her list of milk, egg, sesame, nuts. Still hoping she will outgrow some of them in the next few years.

Sam with Sue and his Cardiologist, Dr. Scheel at annual exam. Sam will continue under her care for the next few years. At this year's annual exam, Sam was too rambunctious to allow an EKG. He also started making heart echocardiogram noises with his mouth. :-)

Sam with Dr. Everett at Hopkins Heart Party, Sept 24th, 2006. Sam was under Dr. Everett's care while admitted at Hopkins for his surgery.

Sam with his Uncle Mark on Thanksgiving Day 2006.

2006-08-30T21:37:00.000-04:00

17 months old today
Sam is 17 months old today. Latest milestones for him are beginning to talk to us. He follows pretty complex instructions even though he can't say them. (such as "Go into the family room and pick up your bottle and bring it back here").
He also rejected the high chair a few weeks back and insists on sitting at the table in a booster seat. He's still a very messy dinner guest. :-)
Here are a few pictures from early August. (click to enlarge) One is on the ferris wheel at the county fair. The other is of him getting into trouble by climbing up on the dining room table. (Sue said he was quiet for too long and went looking for him-- she had to take the picture as proof of his good heart function. )

2006-07-30T23:33:00.000-04:00

16 months old today
Sam is full of energy...the proverbial "bull in a china shop." Sam can climb up on chairs and push chairs around the kitchen now. Nothing is safe any longer.
He's all over everything we don't want him to touch: plugs, lamps, fragiles, electronics. He is saying a few words and repeating simple phrases. He takes great glee in turning the TV on and off (many times per second!) while his sister is trying to watch a show.

These pictures are from our camping trip to Rocky Gap State Park near Cumberland, Maryland, USA. Click on pictures to see larger version.

We're nearing the one year mark since Sam's VSD surgery, August 10th, 2005. How do you celebrate or commemorate such a life-changing event?

We watched a movie tonight called "Something the Lord Made." It tells the story of the ground-breaking research and maturation of the field of cardiac surgery performed at Johns Hopkins, where Sam had his operation. The research work performed by Dr. Alfred Blalock and his research assistant Vivien Thomas centered around finding a surgical methodology to repair heart defects in so-called "blue babies". I highly recommend this movie. The movie also delves into racial issues of the times.

2006-07-25T22:19:00.000-04:00

What a concept: Red paperclips and old rope

Check out the new sidebar link (under "Charities" section) labeled Money for Old Rope. As indicated on that blog,

I was impressed by someone in America who tried to trade a paperclip for a house via lots of small trades. I want to try this for myself but it will be for charity instead.

See the One Red Paperclip blog for what to expect. Good luck to Paul in his trades with proceeds to a good cause.

2006-04-30T22:51:00.000-04:00

13 months old today
Sam has been giving us a quite a challenge lately. He's into everything, everywhere all at the same time. Quite the little boy, he's fascinated with plugs, switches, buttons (on the TV), remote controls, carbon-monoxide alarms. He's also a pro at both going up and down the stairs by himself now. He points to people by name and waves bye-bye wildly. Here are a few pictures I promised from last month but never got posted. (click to enlarge)Here's a great picture of Sam with both his Oma and Grandma.

2006-03-30T09:15:00.000-05:00

Sam is one year old today!

Sam made it to 1 finally. It's been a rough road at times. After his surgery last August, though, there's been no looking back. He has one more cardiologist appointment coming up this October, 2006. Based on his last appointment, he'll probably be "released" from future visits at that time.

Sam started walking last Friday. He's progressed amazingly fast these last 6 days and is now walking for extended distances (10-15 steps?) before sitting down. Last Sunday, he walked up to a soccer ball and kicked it twice before losing balance and sitting down.

Sam's birthday party is this Saturday. We should have a few pictures to post after that. Since he's starting walking, expect a few bumps and bruises.

2006-02-11T13:38:00.000-05:00

Six months later:
It was six months ago yesterday that Sam had his open heart surgery to repair his VSD. It has been a while since we posted a scar picture (Sept 28th), so here's a few pictures from bathtime this afternoon. (click to enlarge.) Note that the main incision is fading as are the three small spots below his vertical incision. Two of those three either show up as dimples if he is standing or show up as smooth if he is lying on his back. Here is the link to the last picture in September.

2006-02-01T20:15:00.000-05:00

Sam is 10 months old now:
Sam passed the 10 month mark yesterday. He's up and crawling on his knees and getting into plenty of trouble. The other day, we let him crawl out of sight for a minute and when we went to find him, he was up on the fourth step heading upstairs! That's a new trick. Diaper changing has turned into major combat with him. He is continuously writhing and wriggling trying to get off his back and up onto his knees. The only way to make progress on getting a diaper changed is by using a forearm to help immobilize his maneuvers.

2006-01-10T20:02:00.000-05:00

Five months later:
Sam had his 9-month well-baby check-up today. His vital information
is 21.75 pounds [9.86 kg], 18.3" [46.5 cm] head circumference and 30" [76.2 cm] length. That puts him at 50th percentile for weight and head circumference and 75-90th percentile for length.

Sam is into "furniture cruising" but can't crawl yet or stand up without holding onto something.

2005-12-20T21:46:00.000-05:00

Almost Christmas:
Sam was allergy tested today because we saw a skin reaction to some baby yogurt last month. As it turns out, Sam is allergic to milk and very mildly allergic to eggs and possibly beef. Nothing new to us since we're already running the milk/egg free regiment for Sam's big sister Janna. The allergist wants to see Sam again in 6 months for a retest.
Here are some pictures that didn't make it into the Christmas card order.

and the Christmas card picture:

2005-12-12T23:43:00.000-05:00

4 months later:
Sam continues to do well. He's crawling, trying to pull up on furniture, and making all kinds of raspberry sounds and saying "Ma-Ma" and "Da-Da". Here are a few recent pictures.

2005-11-13T21:02:00.000-05:00

Three months post-surgery and almost 7 1/2 months old:
Where did the "Thirteen weeks later" blog entry go? Well, not that we're superstitious or anything, but why risk it? So we're a few days late in the "three months later" entry. Sam is able to stay sitting up fine most of the time although he does take some unusual slouch poses and needs to be helped back up. He's almost getting up on his knees, so crawling is just a few weeks away.

I went back and filled in blog entries for March-August that were missing since this web log was originally created starting on August 10th. Luckily, we keep careful notes so it wasn't difficult to get all the information posted. See the ARCHIVES section on the menu to the right--->. Click on "March 2005", "April 2005", etc. to see the new-old entries. Here's a link to March 2005 for example.

I'm thinking about ending this web log and leaving it as a resource to parents who are faced with similar surgery -- as a "what to expect" kind of thing. I'll probably create a new web log that will have both Sam and Janna entries since Janna's previous web page pretty much went stagnant when Sam came along. Email me if you are interested in the new web log URL-- I won't be posting it here.
Is anyone still reading? :-)
--Bob

2005-11-02T22:07:00.000-05:00

Twelve weeks later:
Sam had no problems dropping the daily Lasix medication. It's a welcome relief not to have to remember to give it now. Sam celebrated his first Halloween as a pumpkin.

2005-10-26T23:08:00.000-04:00

Eleven weeks later:
Sam had a cardiologist appointment today. They did an echocardiogram and said his heart was in great shape. They felt guilty about having him there since there wasn't anything wrong with him. Next appointment is in one year! Wow. Also-- Sam has finally been taken off of his daily dose of Lasix. He was down to 0.6 cc by mouth once per day. The only downer news this week is that Sam has come down with a cold-- lots of sneezing and congestion.

2005-10-19T21:14:00.000-04:00

Ten weeks later:
This is Sam at dinner last Wednesday. Sam is starting to "gum" hard foods now that he has some teeth. He's also getting better sitting balance and has graduated to the bathtub for baths.

2005-10-12T23:50:00.000-04:00

Nine weeks later:
Sam got his first RSV shot the other day. He'll get one of these every month for the next several months until the flu season is over. It's not a simple shot either-- it gets mixed based on Sam's weight (mass) and sits for 90 minutes before being delivered through two injections (due to the large volume) to his thighs.

As a precautionary measure, everyone else in the family will be getting a flu shot. Janna's allergy to eggs (and the fact that the flu vaccination is egg-based) means she may get a flu-mist type product.

The weirdest thing happened the other night-- Janna and Sam were upstairs in bed when we heard someone cry out "MOM!". We thought it was Janna, but she was sound asleep. Could it have been Sam!?

2005-10-08T20:57:00.000-04:00

Sam's 6-month checkup:
Sam got 5 shots the other day and wasn't happy about that. (two shots in each thigh, one in arm). One thing we've noticed about Sam is that he doesn't hang on to you when you carry him. He's always been very trusting. That makes him a little hard to carry since it's like carrying a large sack of potatos. There was a sudden change at the doctor's office when it came time to get his shots. Suddenly Sam grabbed onto Sue and wouldn't let go. I guess he knew what was in store for him. Sam is tipping the scales at 18 lbs (8.17 kg) now and 27 1/2" (70 cm) in length. That puts him at approximately 60th percentile for weight and 85th percentile for length.

Two months ago, at the 4-month checkup, Sam was 75th percentile for length and 25th percentile for weight at 13 lb 15.5 oz. Obviously he has been doing some catching up on weight since his surgery to move from 25th to 60th percentile in only 2 months.

Sam made his print debut this month. Out on the newsstand near you-- the November edition of Linux Journal. Sam is on page 6 in the Letters section. Here's the picture (taken in July).

2005-10-05T23:41:00.000-04:00

Eight weeks later:
Sam is due for his 6 month checkup this Friday and a Cardiologist appointment in three weeks. We'll post news this weekend on Sam's progress. One datapoint-- Sam's daycare caregiver who only sees him on Monday and Wednesday noted a growth spurt between last Wednesday and this Monday-- "What were you feeding him over the weekend?"

2005-09-30T21:45:00.000-04:00

Sam is 6 months old today!
We are truly blessed with an amazing outcome from the journey that we've been on for the past six months. I did a search for VSD and CHD on Google Blog Search and added a few links on the sidebar column to blogs similar to this one. We thank God for carrying us through this period and setting us down safely with our boy Sam in our arms. Here is an excerpt from a prayer we received from a dear friend. Thank you for your beautiful prayer, E.E.

Lord bless this little baby. Grace his life and his mission Lord. Help him to grow strong and to be a witness to others. I pray that he will have a blessed life and that you will always shine upon him. Help him to overcome this condition and to grow strong. I know in the years ahead he will run, laugh, climb trees and be a blessing to his mommy and daddy. Bless little Janna too Lord. Help her to know how precious her life is and how much she is loved by you as well.

I ask these things in your precious savior's name, Jesus Christ. Amen.

2005-09-28T22:02:00.000-04:00

Seven weeks later:
Sam is still doing great. He's growing quickly as we approach his 6-month ("half birthday") celebration this Friday. Here's the latest view of his chest:

and Sam working on a bottle this evening:

2005-09-21T23:19:00.000-04:00

Six weeks later:
Sam's milestones this week are 1) we're now able to pick him up under his arms, 2) he's got two front teeth now, and 3) he's adjusting to a home daycare environment 2 days per week. The daycare thing enables Sue to get back to work 2 days per week starting next week.

2005-09-14T20:53:00.000-04:00

Bob and Sam on August 27th (click on pics to enlarge)

Sam finally got Uncle Steve to hold still for the picture. :-) This is from Labor Day weekend.

Sam checking out the hand-me-down exersaucer last Friday, September 9th.

2005-09-14T07:29:00.000-04:00

Five weeks later:
Sam is up to 17 lbs now. We noticed some "rib retraction" the other day when changing a diaper. As he was breathing, his sternum was sinking into his chest noticeably as were his ribs. A check up with the pediatrician yesterday indicated that this is probably a case of his body growing faster than his ability to remove fluid. We're still ramping down on his Lasix (now 0.6 ml 1x/day). The effect is worse in the morning before he gets his Lasix. After that, his breathing and chest look normal. His body should get this straightened out when it has to stabilize after we stop giving him a small daily dose of diuretic. The trick is getting close to a zero dose so the "hand off" from external influence to his body having 100% control is as smooth as possible. I'll post a recent picture later today (tonight) hopefully.

2005-09-07T19:37:00.000-04:00

Four weeks later:
Really not much to report. Sam went for his longest road trip ever over Labor Day weekend. We're no longer concerned about taking him away from major research hospital facilities like Johns Hopkins. He finally met his other set of grandparents and has the beginning of a tooth showing up.

2005-08-31T22:23:00.000-04:00

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.

2005-08-24T21:13:00.000-04:00

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)

2005-08-17T20:24:00.000-04:00

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.

2005-08-14T14:26:00.000-04:00

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

2005-08-13T20:58:00.000-04:00

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.

2005-08-12T10:22:00.000-04:00

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.

2005-08-12T09:45:00.000-04:00

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.

2005-08-11T21:35:00.000-04:00

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.

2005-08-11T10:28:00.000-04:00

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.

2005-08-11T09:55:00.000-04:00

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.

2005-08-10T23:14:00.000-04:00

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.

2005-08-10T22:44:00.000-04:00

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.

2005-08-03T19:47:00.000-04:00

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.

2005-07-27T23:47:00.000-04:00

footloose and fancy-free in late July.

2005-07-15T18:00:00.000-04:00

Directed Blood Donations:
Sam is O+ blood type. We have an option to bring our own blood for his surgery on August 10th. I can donate 1 unit, but Sue is a little anemic and breast feeding, so we're looking for a volunteer who can donate 1 pint probably the week before the surgery. Details to follow.

They don't expect Sam to need two units of blood, but that much guarantees not needing to hit the blood bank. At least 1 unit is needed to prime the heart-lung bypass machine tubing.

2005-07-14T18:37:00.000-04:00

15 weeks old:
Sam's Pediatrician visit today has him at 13 lb, 10 oz. She noted that he may have reached "critical mass", meaning that he will be showing more VSD-related symptoms. She up-ed his lasix to 0.6 ml 3x/day (from 0.5 ml 3x/day).
We scheduled his surgery for August 10th. It seems like a long way away, but we'll get there.

2005-06-24T20:33:00.000-04:00

12 weeks old now...
Sam had a pediatrician appointment today. His ear infection is gone and he now weighs 12 lb 10.5 oz for a 7 oz gain in 15 days. Not bad for any kid, much less a kid with vsd.

2005-06-17T20:41:00.000-04:00

Eleven weeks old:
Update on previous entry-- Sam had a terrible cough for a few days and got blow-by albuterol and pulmicort nebulizer treatments for a few days. He's fine now-- back to his usual self.

Sam is able to roll over about 3/4 of the way. Once he figures out how to get his arm out of the way, he'll be all the way over.

Sam had another echocardiogram (doppler type) at Johns Hopkins today. He was anesthetised (orally) for the test-- went down for about 45 minutes into a nice nap. The VSD is still there and termed "large" while the ASD is termed "tiny". Our cardiologist was in Western Maryland today, so we'll talk to her early next week about results and what the next plan is. After a short recovery period and feeding frenzy (Sam was off food since 0820, so was very hungry after 4-5 hours of no food), we went over to the pediatrics surgical ICU and got a very informative personal tour by nurse Amy. We got a good idea what to expect on the day of surgery and back at ICU with progress points necessary to move to the next stage... (like breathing tube out, stable blood tests, pulse, electrolytes, etc.) Sam will most likely be 1-2 days in ICU before heading to a regular room.

2005-06-05T18:00:00.000-04:00

Overnight hospital stay:
Late last night we got word that Sam wasn't ready to be discharged, so stayed overnight. He came home fron the hospital (JH) mid afternoon today. He has a terrible cough and will get blow-by albuterol and pulmicort nebulizer treatments for a few days.

2005-06-04T19:41:00.000-04:00

Sam's rough Saturday:
Sam is having a tough day. He's been coughing in the last day and doesn't sound good. Sue called the doctor and took him in this morning at 9am. The doctor sent them to Howard County General Hospital where they took blood to do an RSV test and try to get his oxygen level back up. After a few hours, Howard County decided to send him to Johns Hopkins. He was transported in a Hopkins ambulance and Sue followed in her car, hearing that they probably won't be keeping him overnight.

2005-06-03T07:19:00.000-04:00

Two month pediatrician checkup:
Sam had his 2 month checkup yesterday with Dr. Reilly. He weighed in at 12 lb. 1 oz. and is 24 1/4" long/tall. Head circumference is 40 cm. He got 4 shots and came home sore. We're a little concerned that he might be getting a touch of bronchitis that Janna has and is being treated for this week. He was given a precautionary prescription, but won't swallow it--it just ends up all over his face after he spits it up.

2005-05-11T12:00:00.000-04:00

Six weeks old:
Sam checked in at 11 lb 4 oz. this morning. His congestive heart failure is still borderline, so he's going on 2x/day Lasix by mouth (0.5 ml each time). He's due back to see the cardiologist in 4-5 weeks at which point we'll start talking about meeting a surgeon.

2005-04-27T22:06:00.000-04:00

Four weeks and one day old:
Cardiologist appointment today. Sam weighed in at 10 lb 8 oz. Way to go Sam! Looks like last weeks slow growth was a leveling off period and adjustment to the Lasix.

2005-04-19T22:07:00.000-04:00

Three weeks old:
Pediatrician appointment today. Sam weighed in at 9 lb 7 oz. (only 5 ounces in a week, probably slower since he's pumped with Lasix.)

2005-04-14T21:06:00.000-04:00

Two weeks and two days old:
Sam gave us quite a scare today. Sue took him to the pediatrician's office for a well-baby visit (it's all relative, isn't it?). She examined Sam and said he needed to go to the ER because of suspected Congestive Heart Failure. (CHF). Blood/fluid is building up in the lungs due to lower pressure in that part of the system as a result of the VSD. I got the phone call from Sue at 1230 while at work-- didn't get many details, expecting a call in an hour or so. Four long hours later, Sue called back with more info-- that Sam had been given a shot of Lasix in his leg and would be coming home tonight. They went to Johns Hopkins ER.

2005-04-12T14:53:00.000-04:00

Two weeks old:
Just got home from the Pediatric Cardiologist with Sam. He gained weight at an incredible rate and is now at 9 lb 2 oz, beating his objective of getting back to birthweight within two weeks from birth (which is tomorrow). Sam gained 14 oz in 7 days. (was 8 lb 4 oz last Tuesday). Expected weight gain is 0.75 oz per day, so Sam is a little over-acheiver. His breathing is still much faster than it should be and Sue mentioned some unusual heartbeats that last maybe 5-10 seconds. Sam got a prescription for Lasix to remove any built-up fluids (possible weight interaction) and got a Holter monitor that will track his heart for 24 hours, then get mailed back for analysis. Next visit in 2 weeks where we expect to see more VSD symptoms evident. Sam with his Holter monitor.

2005-04-09T17:21:00.000-04:00

Sam is baptised on his 9th day:
Sam was baptised today at St. Louis Church at 1200 by Father Martin Burnham. Sam was an amazing baby-- he slept through most of the ceremony and didn't even cry the when pouring water over his head. Afterwards, we returned home and had a great party for about 3-4 hours in Sam's honor. The weather was a fantastic sunny 65 degrees with perfect blue skies.

2005-04-06T22:54:00.001-04:00

Seven days old now:
We scheduled a baptism for this Saturday at 1200 in the St. Louis Church chapel. Baptisms usually take place Sundays after the last mass, but this is a special case. Looks like Father Martin will perform the Sacriment. Mark and Lisa have stepped forward as Godparents.

2005-04-05T15:37:00.000-04:00

Six days old: Sam has a heart defect "VSD" -- Ventricular Septal Defect
Sam had a pediatric cardiologist doctor appointment this morning at University of Maryland Medical Center in downtown Baltimore. Got an Electrocardiogram (ECG or EKG) and then an echocardiogram (Doppler-type ultrasound of heart). Based on the echo test and measurements, we met with Dr. Salim who explained that there is an 8 mm opening between the left and right ventricals up near the valves. This is large and will not close on its own, so open heart surgery will be necessary in a few months. Right now, we need to work on getting Sam bigger and keeping him healthy. If weight gain is slow, we may need to put in a feeding tube (nasal gastric), but pray that is not the case and that he can feed and grow normally until surgery. The effect of VSD is that oxygen-rich blood is getting circulated back to the lungs as well as to the body. This is inefficient and causes him to work harder at breathing and eating. 8 in 1000 births has a heart defect. 4 out of 5 of those will heal/seal up on their own in a few years. Sam is one of the approximate 1 in 1000 who needs surgery.

After that bad news, we hurried off to meet his pediatrician Dr. Christine Reilly.Today, Sam weighed 8 lb, 4 oz, up from 8 lb, 1 oz last Friday at hospital discharge.

2005-04-04T18:00:00.000-04:00

Sam is 5 days old:
Here's a picture of Sam napping today:

2005-04-01T11:55:00.000-05:00

Sam is two days old now:
it's still touch-n-go with Sam. They're not ready to release him yet since he still has a heart murmur caused by one of the valves. EKG this morning was sent over to University of Maryland for analysis. Sue said all the bloodwork came back ok.

2005-03-30T23:47:00.000-05:00

Sam is born today:
Samuel Joseph ... joined us at 2:40 pm at Franklin Square Hospital,
Baltimore Maryland. Sam's stats were: 8lb 11oz, (3932 g) 21.5" (54.6 cm)
Head circumference=14.5";