Doing well...good, ok

I guess there is a nerve that runs near the heart that affects your vocal cords. When they operated on Ian there was a little trauma to this nerve and his voice is very "small." Even when he throws a fit, it is hard to hear him if you're not in the same room. The surgeon assures us that it is a temporary condition, so we are not too concerned right now. It is so heartbreaking, though, to see Ian try to cry and only a little whimper comes out.

Other than that, he seems to be doing incredibly well. I would never have believed that he could go through heart surgery on a Monday and be sitting in the park on Saturday.

Ian's home

Ian's corner

[UPDATED: See below]

Ian slept well and is keeping milk down. He was in some pain last night so they gave him Tylenol and he went right out. The sleep apnea test results won't be available until later this afternoon; they're a little concerned about his resting heart rate being as low as it is when he sleeps. The cardiologist will talk to Annie about the results sometime after lunch. I'll fill you in as I find out more information.

Silvi is spending the day with Grandma; she woke last night out of sorts so I let her sleep in my bed, a rare treat for her. (except during summer thunderstorms) Annie sounded much better this morning on the phone; you can see a picture of her here. (if you don't get it, reference this post)

More to follow...

Update: 10:20am - All systems are go for Ian to land at home today. The sleep apnea test reveals that he does hold his breath while in deep sleep but he begins to breath again on his own and will probably grow out of it. His lungs are still a bit "wet" so he'll have to take some medication for it. It all hinges on if he urinates or not... he's still struggling to stay hydrated.

Come on, Ian, pee... and let's blow this popsicle stand!

1:25pm - For the latest, click here or here!

Heading toward another night

I'm wrapping up the day at work as Annie prepares to head back to the hospital after a much needed nap. I'll watch Silvi tonight; she's been breaking into bouts of tears for no apparent reason these last few days. I know it is hard on her as well. She and I will take the night to do something fun together.

There is no change in Ian's condition... More blood tests, monitoring his breathing, still can't keep the milk down, not urinating enough, another IV, etc. I'll probably write another update before the evening's done once I hear from Annie. So long...

Update: 8:30pm - Ian is doing well for what he's been through. He's starting to keep his food down and getting some good rest. His temperature is a bit high but not quite a fever. They are conducting a sleep apnea test tonight and that will determine whether he can come home tomorrow or not. That's where it stands at the moment.

It rained all night so Silvi and I stayed in and played PBS Kids games on the computer and wrestled, before tuning in to yet another episode of Road Runner to help bring in the sandman. I'm going to crash early tonight. Good night...

Today? Tomorrow?

(I'm sorry, honey, but when I saw you this morning at the hospital I couldn't help thinking about Nick Nolte's mug shot.)

Annie had a rough night. Ian still has a low grade fever and has been holding his breath from time-to-time. He can't keep anything in his stomach, so is still on an IV. They drew three vials of blood this morning but are afraid they may have clotted, so may need to redraw them.

I'm back at work. Annie's mom is with her all morning and then I'm meeting them over lunch to give them a ride home for naps. It's still up in the air as to whether Ian will come home - depends on his feeding and fever. I'll write more as I learn more...

Update 11:00am - Ian will have to stay over at least another night, so that means Annie will remain as well. The cardiologist is worried that Ian may have sleep apnea, a sleeping disorder that is common to children with Down syndrome. He continues to struggle to keep things down and that may be a side-effect of the medication he is on to clear his lungs. More later...

The latest

Silvi and I are home from visiting Ian. Annie will stay over tonight (it stinks having to spend our anniversary away from each other: "For better or for worse...," I suppose. Ian is doing exceptionally well. He guzzled a bottle of milk and was wide awake while we were there. Still no word about him coming home tomorrow, but that's the plan.

I'm wiped. A few episodes of the Road Runner on Youtube and then Silvi's off to bed. Beep, beep...

Update - 7:45pm: Annie just called and said Ian is running a 102 fever and won't stop crying and spit up all the milk he drank. The cardiologist is on his way to do a check up...

8:25pm - Annie's mom is going over to the hospital for a bit to keep Annie company. Still waiting for the cardiologist to check on Ian. Ian has finally drifted off to sleep.

8:45pm - Annie isn't feeling quite so alone so called her mom back and told her she didn't have to come to the hospital. The cardiologist thinks it could be an infection or dehydration. They drew blood to check the white blood cells and have just put in an IV. They'll know within the hour if there is an infection. So far, this is no cause for much worry, so if anyone needs to go to bed... :) I'm just surfing the web and talking to Annie tonight, so I'll probably update the blog as the info comes in.

9:15pm - Nothing yet... Silvi just cried out in her sleep what sounded like, "No more Big Bird." I'm too tired to read, so am watching music from around the world.

9:30pm - Still no word.. I don't want to call back to wake Ian... I'll guess I'll call if I haven't heard from Annie in the next 15 minutes.

9:45pm - No infection! That's great news. And the fever has almost broken... down to 99 degrees. They suspect dehydration. Annie is going to bed and I'm going to try to relax the rest of the evening to some music from Italy. Signing off.

Ian's heart surgery

If I was directing a film and trying to show externally what the parents were feeling internally, I could not have chosen a more appropriate morning than yesterday.

We woke at five to wet streets and darkness and light drizzle, bundled Ian in his car seat and drove the twenty minutes along the deserted neighborhood roads.

Ian slept and Annie and I didn't say much.

The parking garage. Skyway. Security badges.

The tension is broken by the first nurse we meet, who reminds us of the Mohel hired to perform a circumcision in an episode of Seinfeld. Shaking like she's eaten coffee beans straight from the plant, and talking entirely too loud for the situation, she has us fill out all the necessary paperwork.

A private waiting room. Another nurse. Blood pressure and oxygen levels and weight and lots of medical history questions.

We are alone. Dharma and Greg is on television. It's either that or numerous infomercials telling me how to make a million dollars while sitting on the couch eating Doritos.

We meet the surgeon. He is kind and soft-spoken and tells us that he has performed more PDA ligation surgeries than any doctor in the US. One of the benefits of living in Minnesota, home to Mayo Clinic and the U of MN medical research center.

They need to redraw Ian's blood. One of the test's they needed was not run.

We kiss Ian and give him a hug and they take him from us. We are alone again.

We find the cafeteria and eat the hospital food, which is right up there with airline food. Two people approach us and tell us they are from my parent's church and want to pray with us. My dad arrives.

Annie finds a room to pump her milk and my dad and I wait in the appropriately named "waiting" room. There is a computer screen that tells me Ian's surgery has begun. Our cardiologist stops in to update us. The screen changes to a picture of sutures, letting us know Ian is almost done.

Annie returns just as the surgeon informs me that the surgery was a success and there were no complications. We are sent by a volunteer to the wrong part of the hospital to visit Ian.

I lose my cool with her when we return from a frustrating search. (I see her later in the lunch line and apologize. She also apologizes.) A few more hallways and we find Ian.

He is doing well. We look at an x-ray of his chest and his heart is nearly half it's previous size; it is back to normal. We sit with Ian for an hour-and-a-half, then meet Annie's family in the cafeteria. All the sisters and their kids have come. It is cheery and chaos in the same moment.

I eye the portable heart defibrillator on the wall as I finish up my large roast beef sandwich and chocolate chip cookies.

We return to Ian's side. He is doing excellent. We find a private room and sleep and begin to feel a tinge of hope again.

The nurse tells us that Ian will remain sedated most of the night. They remove his breathing tube and he breaths well on his own. They tell us it is ok to go home.

Silvi arrives from her grandparents house a few minutes after we get home. She is full of hugs and joy and dancing and running. It is good to be home.

Annie calls in the early hours to check on Ian. He has cried a little so they increased his medication. Annie and Silvi and Grandma are at Ian's side now, and Annie will stay the night to feed and comfort him. I am back at work, but will take tomorrow off to take care of Silvi.

The cardiologist says Ian may come home as soon as tomorrow. I'll keep you posted...

Latest

Annie called this morning and we are cleared for surgery. Even though we went to the Emergency Room blood lab and Pre-Op, all the blood work from the hospital ends up in the same place. Huge relief that Ian doesn't have to do it again.

Again, my fault for going to the wrong area. It was chilly out and we wanted to cut through the hospital, so went through the nearest door and just asked the first receptionist we bumped into.

Note to any reading medical professionals:

Parents are in not able to process everything that is being told to them. Even if we the parents nod our heads in agreement, we are not hearing much. Like that person having to slam on their brakes to avoid an accident, our attention is focused only on one thing: our child.

Annie and I kept saying to ourselves that it would be nice to have a map and names of the rooms we were supposed to go to. The hospital is a labyrinth and a huge one at that.

I don't feel like I have a problem following directions. But I did spend nearly a full minute trying to unlock the wrong car in the parking lot. Got a lot on our minds these day, to state the obvious.

That ends my rant. No, I'm not going to be one of those parents of patients, like a teenage beauty contestants mother (or father).

I'm just saying.

Pre-Op Update

We finally made it home after 5 hours at Children's Hospital. After putting Silvi down, I'm down at my local coffee shop, trying to feel normal again.

Ian is a healthy boy, other than that big hole in his heart. He's gained excellent weight, has strong muscle tone (for someone with Down syndrome) and seems content.

We are all set for surgery at 8:00am on Monday.

Today was kind of a fiasco, though.

We did all the preliminary tests: The EKG, Echocardiogram, blood pressure, preliminary assessment meeting with the cardiologist. Then we were told to go to the Pre-Op at the main branch across the way. Well, there are two Pre-Op areas. And, as was bound to happen, we chose the Emergency Room Pre-Op by mistake, much to the befuddlement of the receptionist.

Us: "Hi, we're here for the Pre-Op and to have blood drawn."

Receptionist: "Blood? No that's on the 4th floor."

So we're off to the 4th floor, where, of course, they have no idea who we are since we were supposed to bring paperwork from Pre-Op in the Main Branch.

No matter. After waiting an hour, the "fifteen-year-old" nurse draws Ian's blood. Missed the vein in one arm. Stick. Scream. Stick. Scream. Moved on the next arm. Glove tears. No time to get a new one. Stick. Scream.

Back to befuddled receptionist. Sent to wrong Pre-Op again to meet yet another befuddled, but kind receptionist.

"Who are you again?"

Annie and I sink into chairs as we wait for the receptionist to call around. We hope that the rest of the experience will not follow suit. It was our mistake, but I wish there was a little more guidance for bewildered and tired parents.

Four hours have gone by. No one knows who we are. The kind receptionist sees how tired we are, and gives us a private room to wait in. TV.

Another half an hour, the anesthesiologist finally finds our room. A quick meeting and we can go home.

We get home to four messages from the frantic cardiologist.

"I think there was a miscommunication. You need to get blood drawn today."

Call two: "Still looking for you. Need to go to draw blood immediately."

Call three: "Um, the lab is closing."

Call four: "The lab is closed. Please come an hour earlier on Monday morning to draw blood and meet with the anesthesiologist."

You mean the anesthesiologist who will be leaving for a three day weekend and will not be there on Monday? The one we just met? And where is Ian's blood? In the "fifteen-year-olds" refrigerator?

Again, our bad. But.

Monday is going to be a long day.

Patent Ductus Arteriosus Ligation

I found a description of what Ian will be going through next week for those who truly care, are merely curious or just like to rubber neck at traffic accidents:

HOSPITAL INFORMATION
Children's Hospitals and Clinics
Minneapolis/St. Paul, MN
2525 Chicago Avenue South
Minneapolis, MN 55404
(612) 813-6000

Description:

Heart defects come in all types, from minor to major. Defects can occur inside the heart or in the large blood vessels outside the heart. The heart defect may need immediate surgery or may be able to safely wait for months or years. In most cases, the timing of the surgery will depend on how sick the baby is.

The heart defect may be repaired in a single surgical procedure or may require a series of procedures. Surgery may involve opening the heart to repair defects or repairing defects of the blood vessels.

An incision is made on the side of the chest, between the ribs (thoracotomy) instead of through the breastbone (sternotomy).

It is sometimes necessary to use tubes to re-route the blood through a special pump (heart-lung bypass machine) that adds oxygen to the blood and keeps it warm and moving through the rest of the body while the repair is being done. This machine does the work of the heart and lungs during the operation.

Heart surgery for children requires a specialized team of health care providers:

• Pediatric heart (cardiovascular) surgeons
• Pediatric anesthesiologists
• Pediatric heart-lung (cardiopulmonary) bypass pump technologists
• Pediatric surgical nurses and technicians
• Pediatric intensive care physicians and nurses

Heart surgery requires intensive and extensive monitoring, treatment and coordination by the entire team. Heart surgery for children may take as many as 12 hours in the operating room.

After heart surgery, the child will be moved to the intensive care unit (ICU) to be constantly and closely monitored and treated for several days. During this time the child will have the following:

• A tube in the airway (endotracheal tube) and a respirator to help with breathing. The child will be kept sleeping (sedated) while on the respirator.
• One or more small tubes in a vein (IV line) to give fluids and medications.
• A small tube in an artery (arterial line) to measure the blood pressure.
• One or two chest tubes to drain air, blood, and fluid from the chest cavity.
• A tube through the nose into the stomach (nasogastric tube) to empty the stomach and give medications and/or feedings for several days.
• A tube in the bladder to drain and measure the urine for several days.

Without a map

Ian goes in for his pre-op examination tomorrow afternoon. If the doctors determine that he is healthy, they will schedule him for his Monday morning surgery.

When I lived in the East I used to take day trips along the coast, going nowhere in particular. I liked getting lost. Driving without a map, stopping when I was hungry or saw a bookstore that looked interesting. Taking unmarked back roads until they gave way to small coastal towns.

I no longer like being lost. And I would pay good money for a map to guide us through these next few weeks.

New surgery date

A quick update: There is an opening for Ian to have his heart surgery next Monday the 15th instead of on the 24th. That means he will go in for his pre-op checkup this coming Friday.

Now we're getting nervous.

Until the party

And so the doctors have my son's name in their appointment books.

A receptionist's calendar. A few marks of lead on a sheet of paper.

These pencil strokes inform us that on the 24th 15th of this month a whole Army of nurses, pediatricians, anesthesiologists and surgeons will gather at Ian's bedside to pierce and poke and prod and cut and spread and sew, to conduct what we moderns call routine heart surgery.

His chest is so smooth. Flawless. I consider it criminal, yes, a felony, to introduce a jagged scar across such milky white and fragile skin. Like taking a blade to Van Gogh's Starry Night or Rouault's The Old King.

No, worse. Much worse.

He will be all the better for it, so they say. And I will celebrate on that day, the day when his lungs fill with the Fall air and his mended heart fuels strong legs to carry him on new adventures.

We will throw a party on that day. A ball.

But until the balloons are filled and streamers hung, we sit alone in this empty ballroom, my wife and I. We wait, and we plan, and through our tears we compose a song to play on that day.

The day when a surgeon's hand touches what I hope one day to also touch: Ian's heart.

A "Routine" Life

I heard the word "routine" a lot yesterday. In the doctor's office, from family members and fellow bloggers. I'll be honest: At first the word really bugged me.

"It's a routine procedure. What we're going to do, Tom and Annie, is take this here scalpel with the size #10 blade and make a a six-to-eight inch gash in the side of your one-month-old son. Then we're going to take these here rib spreaders and ever so gently ..."

Well, you get the picture. The "routine" I'm used to is my daughter's scraped knee, and that still breaks my heart.

But as I've been thinking about the word today, I think I've come to terms with it. "Life is hard," as my Dad often says. And it really is. Pain and grief and suffering, these are characteristics of the "routine" life. If you choose to love someone, you open yourself to hurt and to being wounded. Any day without suffering is outside of the norm - abnormal.

I'm thankful for being reawakened to the "routine" life. The alternative seems to be a dead life.

Sad day

Ian's breathing has been labored since his birth, which we had hoped would lessen with time. It persists, and so we took him for an echocardiogram this morning, which revealed that the hole in his heart had grown larger, causing too much oxygen-rich blood intended for the rest of his body to be channeled back into his lungs.

He'll need heart surgery to repair it. Probably within a week or so.

I'm not fond of the "life with a child with Down Syndrome is a roller coaster ride" analogy. This isn't a ride, and if it is, I want my money back.