Heart Cath - happy tales.

Jordan had his biopsy this month - the annual - and as far as these things go, it went surprisingly well. His results, thus far, are good; and there are no signs of rejection. He was pretty nervous about this, teary-eyed in the car getting out, and stressed about the anesthesia mask they use.

But, he got through it. Some combination of sedative, given through an IV (I must remember this for next time) and the right dosage of anti nausea medication seemed to work. For once, he wasn't throwing up after it was over. He even managed to sleep through most of the five hours he was required to stay still in recovery.

The hardest part was bringing him into the cath room, which is in desperate need of a child-friendly makeover. It's such an intimidating space - filled with enormous machines, electronic screens, and so many masked people, hovering around a empty table waiting for you. Jordan instantly tenses up when we walk in there. I carried him in.. and it might be my last year doing this.. he has gotten so heavy! On the table, he cried. He also said that he wished he had never had a heart transplant. What can you say to that? He was in panic mode, I think. It was hard, so many people were talking to him all at once, in an effort to calm him down. He did finally focus on me, and I talked him through the doctor putting the IV into his hand. It was a shame she couldn't do it in one shot. So we started again - me telling him to look at me, focus on me, take deep breaths. Jordan actually made it easy for me. Earlier that morning he was telling me a story about his friend at school, and a game they played called "skunk breath."

Boys.

But, I reminded him of that and we blew skunk breaths back at each other till the IV was in. Then we waited till the sedative kicked in, watched his eyes get drowsy, and then kissed him good bye for now.

Mina was such a champ. She insists on coming along with us now, and during the whole day in the hospital, she kept herself amused. I brought along some things for her to play with. She read from one of her chapter books (love that she is into reading for pleasure now!) and the social work staff at the hospital did an amazing job checking in with us, letting us know about activities scheduled for the families that day that she could participate in. Having Grandma H and Michael around was a huge help, as they kept an eye on her while we waited bedside with Jordan.



Back at the hotel room that evening. So glad it was over! We always celebrate with pizza in the evening.



The next night, we took advantage of being near NYC. Jeff introduced Jordan to his old place of employment - The Blue Note, in Greenwich Village. Jordan seems a bit confused here, but both kids were mesmerized by Michel Camilo, who performed with a big band. He is such an phenomenal pianist. Seeing him with a band as large as he had was such a treat.



Jeff snapped this pic of me and Mina on the airtrain in Newark. Mina has reached the stage where she dresses herself completely. As you can see from this picture, we have radically different styles, but that's ok. I always go to her when I want my outfits styled for a night out.

Her leopard print ensemble was made perfect when a couple offered her their leopard print umbrella. They said they had noticed her, and decided she would be the one to give it a good home.



Never fear! Oscar was well cared for in Bermuda. Here he is basking in doggy glory on the pink beaches of the island. Thanks Jim!



So, I am breathing a deep sigh of relief that all is well. Back to normal!

It's that time of the year again.

Jordan recently had his heart annual and clinic visit. For those unfamiliar with what this consists of, I've blogged about it here, here, here and here. He has these procedures to monitor the functioning of his heart transplant, to ensure that the major vessels surrounding the heart are healthy, and that there are no signs of rejection.

The good news is that we received the results and there's no rejection. All signs are positive. Other levels they like to monitor (thyroid, iron, cholesterol, etc. also look good). Some levels we are getting retested (EBV was slightly elevated.)

But in general, thumbs up!



Jordan waits to get his bloodwork done. They drained him of 12 vials. He handled it extremely well. I bit my tongue as I watched the phlebotomist pull out one vial after another; and Jeff looked positively faint. In fact, the technician said,

"Mommy, go stand behind him in case he falls over." She meant, stand behind Jeff, who was sitting on a chair holding Jordan.



Yes, they refer to us as "mommy" - meaning me. I'm the mommy. And Jeff is "daddy." As in the dad. It's just slightly disconcerting to be referred to this way by a grown woman. I've come to realize this is how certain hospital staff choose to refer to the parents. I guess it's just easier for them then learning our last names. Or looking at the patient's chart and referring to us with a prefix and last name.

I'd like to believe I would call the parent by their last name. I think I would. The same way I would use a proper last name for an adult patient. Like, "Good morning Ms. Jones, how did you sleep last night while you were laying in traction and the nurses' station was right outside your room?" Maybe it comes from growing up in a culture where we referred to anyone old enough to be considered an adult as "auntie" or "uncle." It didn't matter that they didn't have an ounce of family blood in them that resembled yours. If they were old, they were your auntie, and you better show some respect damn it. I think I just about keeled over and died the first time I heard a friend refer to a parent by their first name. If I had ever dared to call one of the auntie's by her first name, I think I'd be backhanded. And then they'd tell our mom, who would probably back hand me as well for being so brazen.

Then I started thinking about how I refer to parents and kids that walk into the courtroom where I work. When I conference a case, occasionally I will meet with a parent and/or her child. I don't think I've ever referred to a mother of a 16 year old as "mommy."

"Listen, Mommy. I know your daughter has been habitually truant and refuses to obey the rules of your household. I know you want to "lock her up." But she's not a criminal; and the system does not allow you to restrictively place her. Got it, Mommy?"

I digress.

I thought a lot about preparing myself for this biopsy. I thought about what to say to Jordan the night before, and what I would do to stay calm and be a supportive parent instead of a belligerent, raving lioness protecting her cub. As it turns out, we were sorely tested, but I think I'm prouder of my behavior than usual. I focused very hard on the nurses and doctors who were doing an excellent job with Jordan, and I again, bit my tongue when confronted with behavior I can only describe as puzzling.



Here, Jordan watches tv while sitting through 40 minutes of an ECHO. He was such a champ! He watched the technician smear the cold jelly on his torso, and then quickly lost interest as the "Sing Along with Mickey Mouse" video (yes, video! As in a VHS tape!!) played on the tv. Jeff and I had a good laugh about that. We're so spoiled now. Does anyone remember what it sounds like when you rewind those VHS tapes? And even the concept of rewinding sounds foreign now. What's rewind mean when you've grown up with DVD's that you just set to play at the menu screen? If you really want a sense of how old I am, I can tell you that I still remember watching video discs (the big, square shaped behemoth) that my parents would rent and put in our video disk player. Those dinosaurs went extinct almost immediately.



I digress again. I had a lot of time to think about things while we waited. Here, Jordan waits to go into the biopsy operating room. To put it in perspective, we arrived at the hospital around 7:45 am. We left the hospital around 8:30 PM.

As in night.

Jordan began the day with all the tests (ECHO, EKG) and bloodwork. Then, we went to a different part of the hospital and began the pre-biopsy routine of weighing him (again), filling out forms, meeting with the anesthesiology team and the cardiac team, and the cardiac fellow. I have got to get it in my head that the cardiologist doing the biopsy is a real doctor. I have got to sneak a picture of him next time, because I swear to God, he looks exactly like my brother Riz.



Here's my brother, Riz. Look, he really is an adult. He even has a kid. Actually - he has kids! And he's a doctor too!

And when the doppelganger-cardiologist/Riz, stands next to my son with a stethoscope (and a teeny-tiny diamond in his nose!!!), I don't register that he's a real doctor. He looks like a tall, gangly Indian guy in a white coat playing dress up. I like the nose diamond though. Shout out to ethnic body piercings.

Later, I ask Jeff "Are we going to meet the cardiologist already?"

He says,

"We just did. That was the Indian guy."

Every time. I forget, every time. He's so young! It's like babies doing operations on babies. Sometimes I get confused and call him a "fellow," which is sort of an improvement, because it implies that I think he's practicing to be a real doctor. It shows optimism. It's better to be considered a fellow, as opposed to a kid playing dress-up.

I'm awful, really. Doppelganger Riz/cardiologist guy was really very sweet. Even when he talked to us about the unexpected events that occurred when Jordan was under anesthesia. I believe the term he used was "freaky." Or possibly "freak." As in "it was one of those freak things, we just can't explain."

As a parent of a child who goes under anesthesia a few times a year, I can assure you that the words "freak" and anesthesia don't belong in the same sentence.

But, like I said, today I was a brand-new mom. A zen mom. A calm and accepting mom. I just nodded sagely and listened.

So, Jordan had some freaky things go on while he was dozing away under anesthesia. As a result, they had us stay in recovery for a full six hours after they brought him back into the cath recovery room. Those six hours passed about as slowly and painfully as you might imagine.

And, we had to keep Jordan flat on his back and immobile. Yep, fun times.

What I'd like to remember about the experience:

1. One of my favorite people at the hospital actually vented about what a hard time she had there dealing with some staff. She's is just about the sweetest soul, and has known Jordan since the very beginning. I always think of her as a bundle of sunshine and smiles. Hearing her confess about the challenges there put things in perspective. This is a tough job for them too.

2. I talked to Jordan about the biopsy the night before. Mina, who is habitually glued to his hip, was present as well. She was not happy when she learned she could not come to the hospital with us. She also demanded to know why she couldn't have biopsies as well. I think I might have seen just the teeniest of smiles on Jordan's face. Isn't it funny how kids can turn any situation into a game of "it's not fair! I want that too?"

3. I vow to remember that the cardiologist doing the cath is a real doctor and not just a doctor in training, and he's very competent and a nice guy. I also happened to really like the cardiology fellow, who was a young woman. She was extremely patient and answered my one question sincerely. I asked her if it would be possible to adjust the bandages on Jordan's groin in a way that made it less painful to sit up. And she explained why that was not advisable. And I understood. And she had a kind face.

4. There is one nurse there on the cath recovery floor who I absolutely adore. I love her. When she's there, I am instantly comforted. Even though she calls me mommy too, coming from her it feels like a badge of honor. She's the kind of person who deserves to be a nurse, and she is so gentle with Jordan, I wish I could just hug her. She has a kind face too.

What I would like to forget:

1. I would like to forget the image I have in my mind of Jordan trying to sit up in bed screaming as they took the probe bandages off his chest.

2. I would like to forget the way his voice whimpered as he begged us to take him home.

3. I would like to forget how wretched he looked when he threw up in bed after the procedure.

There - got it out of my system.



So, Jordan has recovered from the annual. We've been very busy this week with guests. We've done some super fun things! More on that later.

Bermuda update - Still waiting to hear. Jeff and I are going to get our fingerprints taken to prove we aren't deviant criminals. We've also submitted the kids' health forms to prove they aren't contagious. Up ahead - Oscar gets microchipped!



Really.

Clinic - March 2010

Of course I hate clinic days, but for the sake of posterity, I feel like I have to occasionally post and preserve what these experiences are like too. As much as I dislike the drill, it's part of our lives.

And it's also interesting to see how the experience evolves as Jordan gets older. When Jordan was an infant, and I was bringing him to clinic twice a week, the experience felt like the most miserable, Kafka-esque maze of bureaucracy and medical inefficiency. I cringed every time they drew blood, missed a vein, drew blood again. Or every time they put adult sized cathodes on his tiny body, only to rip them off in a painful instant.

These days, the experience is different.



Hanging out in the waiting room, eating a two-pack, snack sized Milano cookie... at 8:30 in the morning.



Getting measured in Dr. A's office.

I break the news to Jordan the night before.

Telling him any earlier is useless. Telling him the night before gives him about an hour or two to digest the info and mentally prepare. He's become remarkably relaxed about it. A slight bit of anxiety, but it quickly dissipates. He goes to bed.

The harder part is telling Mina. I wait until the next morning, and inform her that she has to go to school, while we take Jordan to the hospital.

"What?" she says, "I want to go see the doctor too!! I want to go to the hospital too!"

Jordan smiles, like he is about to experience a special treat, all for himself.

I sigh.

I counter, "Mina, you can go on a special doctor appointment too! On April 2, you can go to the Dentist's office. You and Jordan BOTH have appointments, and you can go together!"

She smiles. Mollified for the time being.

I'm raising a duo of hypochondriacs.

At the clinic, Jordan sailed through the blood draw (!!!), the ekg, and even the echo - which took an hour. I can't believe this kid sometimes. He flinched a bit at the blood draw, but recovered quickly. He chatted with the EKG technician and discussed the merits of the small sticker nodes and the pain quotient on them. We lay on the table for an hour in a cold room while the Echo technician painstaking rubbed the sonogram mouse over his belly.

While we waited to speak to his cardiologist, Jordan played video games on the big console with the older kids. Then he sat down at a kid-sized table and drew pictures on some paper I brought with us. I tried to ignore the kid who sat down next to him and coughed non-stop in his face, while snot rolled down his nose. His mother sat there oblivious. (ARGH!!! Lady, every kid in that room is immuno-compromised. How can you ignore the looks of death we are all shooting your way!!!)

This is part of the reason why I don't pull Mina out of school to come with us. There's no reason for her to miss school, and there's no reason to bring her into a hospital environment which is pretty much just a breeding ground for infectious diseases of all kinds.

But, eventually, we saw the cardiologist. Jordan charmed her with his witty dialogue and wacky antics. He discussed made up symptoms to some illness he claimed to have experienced recently (I'm telling you - hypochondriac in the making). The doctor smiled and looked at us inquisitively. I shook my head.

Biopsy scheduled for next month. Blah. Results of blood tests next week. Other than that - looking good for now.

Post-Biopsy. Here we are.

It's been about ten days since I posted, which for me is a lengthy hiatus.

To update, Jordan's biopsy indicated he has no rejection. I'm happy about that. I didn't ask about the number (0,1, etc.) I don't focus on that much anymore. Unfortunately, they were unable to do a full biopsy of both his left and right ventricles due to technical difficulties. They made some adjustments to his medication - upping his Cyclosporine level, decreasing his Immuran level, and putting him back on Valgancyclovir because his EBV virus is high again.



Don't ask me to explain in detail what all of this means. Some transplant moms are good at explaining the medical stuff. They understand the complex formulas and the whys of certain drugs, the benefits, the costs, the long term risks. I've simplified it greatly for myself. It boils down to establishing the right dynamic in Jordan's complicated immune system between creating a healthy enough environment to provide some immunity verses an optimal sytem that will attack his transplanted heart. Some drugs help keep things in line. Some drugs he takes have long term consequences I would rather not think about.

Here's some more pictures. I always tell people to just post pictures when they have nothing to say. The truth is, I have a lot to say; it's just so depressing, I wonder why I bother writing about it? It's mostly for myself. I have to sort this out, because it's eating me up inside.

Proceed at your own risk after the pictures, I guess.











Long rant:

I was very unhappy after Jordan's biopsy on January 16. At the time, I was frustrated and angry and really wanting to hurt someone - it felt so bad. Since then, I'm still angry and frustrated and depressed.

To recap, Jordan was scheduled for a full annual - the examination of his left and right heart ventricles. Many of you reading this know what a day like this entails. From starving the kid for hours, to administering anti-nausea medication, to watching them put an anesthesia mask on him when they bring him into the cath lab - it's brutal. There's no way of explaining any of this to a kid Jordan's age. I can't explain to him why he has to go to a hospital, be poked and prodded for hours at a time by one doctor after another, be hooked up to monitors and machines that ring loudly every time he moves his wrist. I can't say or do anything to alleviate the anxiety I see in his face as we cross the bridge to go into the city.

No matter what I do or say, I can't make this pain go away. I will never be able to make this go away.

This is his life - and our life, forever.

So, on January 16, we went through our usual drill. We got there at 8:00, we checked him in, we waited for hours in the waiting area while one doctor or another came out to look at him. We weighed him, tried to calm him down, explained to him why he couldn't eat or drink anything. We brought him into the blood lab, got his blood drawn, while easing his screams. We brought him back to the lab and gave him anti-nausea medication that made him throw up, again. Because he had no food in his belly, he lay there dry-heaving repeatedly. He cried. I cried.

Eventually, they took him into the cath OR, while we followed. The anesthesiologist laughingly put the mask on him, and in a cheerful voice mocked the way Jordan's eyes began to drift asleep. His thrashing violently also ceased at the same time.

Jeff and I left.

After an hour or so, the cardiologist came rushing into the waiting room to tell us that they weren't able to do a full biopsy because "the computer wouldn't turn on." That's Jeff's recollection of the conversation. The doctor said they moved Jordan to another room and were going to do a partial biopsy, and that we could come back again another time to do the full thing. He ran out. This conversation took all of 30 seconds.

And then I began to process what he said. And that's when the anger began to build up.

That was a Friday. We had Jordan's birthday on Sunday. Later in the week, I called the Patient Relations Department to complain about what happened. Jeff contacted Jordan's cardiology team via email to let them know we were unhappy. I got an answering machine. Jeff got a two sentence response saying the computer malfunction occured while Jordan was having the procedure. Oh, and next time, he can have an angiogram too.

I got no response on my message.

This week, I got a charming form letter from the hospital with a survey seeking my input on how wonderful a job they are doing. I get this form letter every time Jordan goes in for a biopsy. The last time, I wrote a blistering letter explaining in detail everything that went wrong. I put in every single complaint I had, signed my name, gave them every phone number I have, and suggested they call me. No response.

I laughed out loud when I got the survey this week.

I also called the patient relations department again. I finally got in touch with a real person, who transferred me to another real person - who couldn't understand why I was upset.

"Computers malfunction." She said.

I reminded her that this was the second time a computer had malfunctioned while my son was under anesthesia in her hospital.

"But what are they supposed to do?" She countered.

It took a half hour of explaining to her that what happened was unacceptable. It is not ok to put a four year old under anesthesia and then decide whether your computer was working. The computer was working for the first patient they took in that morning. Was it not possible for them to check it again before they put Jordan under? What protocol did they have for ensuring against malfunctions, and what assurance would I have from them that this wouldn't happen again? And why is it ok to wait another six months to do a heart annual when they make it seem so critical that it be done every year? If it's ok to do it at 18 months, why are we wasting the money to do it at 12?

After this very long conversation, she indicated she would begin an investigation into the incident. She would speak to the doctors, the individuals responsible for monitoring the machines, and set up an interview with us to discuss the matter.

I guess I should feel happy I've said my peice, and that someone at this hospital knows how angry I am. I hope this meeting takes place and we can talk about everything that is wrong with the way they handle biopsies there. I wish I could feel reassured about this, but I suspect the hospital is so busy congratulating themselves for their high-ranking status in the trade papers, they don't really care about our little complaints.

Except, they seem to care every year or so when they come knocking on our door seeking pictures of Jordan to advertise in their annual stock reports and videos to play at the staff feel-good meetings. They march photographers into the house, flash camera at us, and expect us to say wonderful things about the place. They prompt us with the answers they want to hear. We repeat them. I bite my tongue. They came out again this year; and I grudgingly went along with it.

We do this because there are many people at this hospital who do deserve to feel good about their work. There are many people who care, who are brilliant doctors and nurses, social workers and administrators. These people have earned the right to work with pediatric patients because they speak with them, not at them. They look into little-kid eyes and get down on their level, and interact with kids like kids. They don't mock. They don't pretend the experience is a pleasant one. They are gentle. They are kind.

And then, there are cracks in the system. And it seems like every time we bring Jordan in for a biopsy, we fall into one of those cracks. Every time.

So, I haven't blogged in awhile, because - honestly - I'm depressed.

I can deal with this life. I'm grateful for having this life. I'm appreciative of being given a second chance with a son, who they told me would die. I'm not a praying kind of person generally, except every day when I thank God for giving us another chance. When I hear Jordan tell me he loves me, or when he holds my hand, or rubs his nose against mine - I feel like my own chorus of angels has burst into song. At that moment, I wish I could hug the whole world. But I can't, so I hug Jordan a little harder.

But I can't handle situations or people that make this life harder than it has to be. And honestly, sometimes it can be really hard. I try all the time to see the good things about a situation. I try to laugh, I try to find something positive. I really do try to stay upbeat, which is hard - because I'm a cynic by nature.

But this biopsy thing... don't these people understand? Don't they know what it is like for young kids, going into this big, scary hospital? There is nothing fun about this - why do they have to make it worse??? And why do they make it so hard for people to get answers? Why do they give me attitude on the phone when I complain? Why is the communication between us and Jordan's doctors limited to emails with nurse practitioners? Why can I never get a real doctor on the phone? Why do they have notes in Jordan's medical file about me?

Why, why why. Damn it.

We're facing a whole lifetime of whys with Jordan, and they don't make it any easier.

Sometimes, I think they just want me to shut up and be grateful because they saved Jordan's life. I don't think I lack gratitude. But, the thing is, I always think it was Breanna and Nikki who saved Jordan's life. I'm grateful for the large number of hospital staff who worked the technical magic that made it possible. Doctors, surgeons, nurses. They kept Jordan alive long enough to see the miracle unfold. They nursed him in PICU, under the ECMO machine, in the cardiac recovery floor. They walked us through a challenging first year.

But I can't focus on that exclusively when I see what he goes through today. It's not enough. This is the rest of his life I'm talking about here.

Post-Biopsy

Yesterday, Jordan was scheduled for his yearly heart annual. This is a procedure that biopsies portions of his left and right ventricles to assess whether there are any symptoms of rejection, among other things.

The good news is that the procedure is over, pending results. The bad news is I've reached a level of frustration with this hospital that I can't justify anymore. As usual, it was an awful day. I can live with that. I can live with the inconveniences, the tears, the general unpleasantness of the ordeal. But what I can't live with is putting my son at risk.

Long story short - yesterday, after a lengthy delay, they surgical team brought Jordan into the OR, and while we watched, put him under anesthesia. We left. An hour or so later, a doctor rushes into the waiting room to inform us that because the OR's computers were not working, they would not be doing a full biopsy, so they were moving Jordan to another room and doing a partial biopsy, and maybe the next time we brought him in, they could do a full annual.

Then he rushed out. It took me a minute to process what he was saying. And then it occurred to me. Without confirming that the equipment in the OR was operational, they brought my son in there, put him under anesthesia, and began a procedure on him. During the process, at some point, they discovered the equipment was not working, and so they made a judgement call to physically move him into another operating theatre, do a partial biopsy, and delay the full annual until another day.

I'm livid.

Is it too much to ask to confirm that your tools are in order before you cut someone up, gas him, and remove small portions of his heart for study? I think not. Putting anyone under anesthesia is a risk. Doing it with a four-year old, without ensuring that your surgical computer station is working is shameless to me. I do not know what kind of protocol or surgical checklist the head cardiologist should do before beginning a biopsy - but whatever it may have been, it was not done here.

Am I asking for too much here? Am I being unreasonable? I might be able to dismiss the incident, if this was the first time something like this has happened to us. But it isn't! There was another time Jordan went in for a biopsy, and after waiting for hours, the doctor came out to tell us that they had gotten a late start because "the computers weren't working."

I can live with malfunctioning computers if all we're talking about is some stored Word documents. I can't live with it when my son is laying unconscious on an operating table.

I'm deciding what the best approach is to discussing the situation with his doctors.

Yesterday, we had bigger problems to deal with than an all-out confrontation in the middle of the cath lab. We had to take care of our son, who was miserable when he came back into recovery. As usual, he was exhausted, nauseous, coughing, covered in cathodes and hooked up to an IV. Once he awoke, he was groggy. We brought him home, and after 18 hours, he finally ate something. He went to bed early.

We've been through this enough times to know that he would be better in the morning. The worst was behind us. We moved on to happier things - celebrating Michael's birthday.



We tried to forget about the day at Morton's Steakhouse. It was a well-needed break; and the restaurant did a marvelous job at making the guest of honor feel special. Even the menu wished him well!



The restaurant offers cute little touches, like providing free birthday pictures of the table as souvenirs.



And did I mention, they are free! I'm usually such a sucker for the picture thing at places. It was nice to have a small token, gratis.

The food was fantastic. And I am a big steak fan. I've eaten at some of the best steak restaurants in NYC. The job they did at Morton's ranked right up there. Trust me, I was shocked, because it's a chain restaurant. Not my usual thing.











We tried very hard to avoid talking about the morning. Sometimes it seems like there's just nothing to say.

In the morning, Jordan was back to normal.



We celebrated by throwing him into the bounce house, along with his sister, and laughing at them, caged like two animals. Judging from his activity level, I think he was feeling fine. He ate well all morning, ran around like a maniac, napped, and didn't mention the hospital once.











Jordan and Grandma turned to quieter activities as the evening approached. Here they're playing with the sun catchers and trying to make the suction cups stay put on the cold glass.



Apart from the small incision site in his groin, and the residue of seven cathode stickers all over his torso, you'd never know he'd been through anything.

That's good.



Tomorrow is a big day. Jordan's turning four! We'll be having a party in the afternoon at a local kid party place. He's been looking forward to it for weeks. And to get the day started off right, we'll have a special breakfast in the morning. We set the table tonight, so he'll be surprised when he comes downstairs.



Jeff insists he's sticking with pancakes tomorrow,even though it's the same thing he eats every other day. Why mess with what works?



I hope tomorrow will be a great day for him - he deserves it.

"Mom, I need a few more minutes.."

When we pull into the driveway everyday at 11:30, I know I can look forward to the "few more minutes" routine.

Jordan: Mom, I need a few more minutes.

Mina: Few mo' minutes, mommy.

me: Ok, a few minutes and then we're going inside.

A few minutes really means about 30 seconds, enough time for me to unload the car, remove the diaper bag, back packs, miscellaneous toys, soda bottles, other refuse, etc. During this time, the monkeys watch the dvd screen, entranced. I keep watching frantically to make sure no one steals the car (leased - that would be bad) or the kids (that would be bad too, I think... ) or that one of the neighbors isn't peeking out their front doors, phone in hand, ready to call child protective services. I have little fear of that since no one reported the entire family sleeping in the car for forty minutes one afternoon ... with the engine on. Remind me to tell you that story one day.

After the requisite "few more minutes," I get them out of the car, and we begin the "Mom, I just need a few minutes to play on the grass." Mina pipes in, " few mo' minutes mama, in da grass."

I had the camera on me today.



Ready....



Set....



Go!!!!! (Mina didn't quite get the whole jumping in part.)

Jordan had his heart clinic yesterday, and we're awaiting results. Everything seemed normal, his echo looked good, same with the EKG. The doctor seemed pleased with him during the visit. I think Jordan is starting to handle these visits better than I do. The night before, we told him where we were going in the morning. He wasn't happy about it, but by bedtime, had forgotten and went to sleep without a fuss. He woke up the next day and we headed out.

On the other hand, I lay awake long into the night dreading the day to come. From time to time, I'd peek up and notice the time. Ok, 4:30. That's bad. I envisioned all sorts of mishaps - some of which did come to pass, others which did not. Having gone through this for almost four years now, I've learned that expecting the absolute worst, is the way to prepare myself. That way, I'm pleasantly surprised when the day turns out to be not such a dismal failure. It sounds horribly negative of me, but it's a strategy that keeps me sane. If I go in there thinking it will all be fine, tests will run on time, procedures won't take forever, no one will rip skin off of him - that's the way to court disaster.

Anyway, it's done. Assuming no major disasters, we can look forward to the big heart biopsy annual in January. That would be four years post transplant. I'll start celebrating after it's over.

Clinic day again.

As much fun as we had upstate this weekend, in the back of my mind I was brooding over the upcoming clinic visit Jordan had scheduled this Monday morning. As always, I was dreading it. I was also debating the right moment and manner in which to let him know he had to see the doctors again. I didn't mention it during the trip to the grandparents because it seemed cruel and pointless to stress him out and ruin his good time. But by Sunday night, after we got home and settled in, I knew it was time to bring it up.

In the past, we've gone back and forth about how best to prepare Jordan for a clinic visit. When he was younger, it wasn't an issue. We just packed him up in the morning and strapped him in the car. It's not so simple anymore.

Now that he can verbalize his fear and articulate every shade of emotion as he experiences it, we owe it to him to prepare him for unpleasant experiences. At the same time, we can't tell him too far in advance or it becomes meaningless or worse - something to stress about. So, I compromised and told him the afternoon before.

As expected, he reacted with dismay.

"Don't want to see Dr. A----. I don't want her to listen to my heart. I want to stay home. I'm just playing in the playroom."

And other variations of the same.

But, we've learned some tricks along the way. One thing I like to do is redirect his attention to something he can do to reassert some control over the situation. In this case, I suggested we bring along his stethoscope so that he could listen to the doctor's heart while she examined him. He liked this idea, so we practiced using his stethoscope for awhile.



I made sure to pack it this morning in his "special Jordan bag." The bag was part of a birthday goodie bag gift, which I thought was very cute. It came in handy today.

I'm pleased to report that clinic today went well. We had a blood draw, which was stressful and teary. Six blood vials later, Jordan emerged. He recovered quickly and met with the pediatric transplant nurse practitioner, whom he addressed very nicely. As we walked down the hall, he introduced himself to other people he encountered with the following exchange:

Jordan: Hi!

random person: Hi there.

Jordan: What's your name?

RP: My name is ---. What's your name?

Jordan: My name is Jordan. It's nice to meet you, RP.

Jeff and I were cracking up. He can be very cute when he wants to.

One very long echo cardiogram and an EKG later, we waited for the meeting with the cardiologist. I'm really proud of how well Jordan behaved. There's a video game in the waiting room, which attracts a lot of attention among the kiddie set. Jordan displayed good manners in taking turns with other patients and didn't fuss when his turn was over. I can't say some of the other kids behaved as well.

And he was even cooperative with the technicians during procedures and with the doctor doing the exam. I couldn't have asked for much more. During the discussion with his cardiologist, we talked about various concerns. Much remains to be seen as Jordan gets older. My greatest desire is to have the reassurance that everything will be great, that he'll grow up healthy and normal and developmentally on track. No one can tell me that or give me big picture perspectives on any of this. But then again, no one gets that guarantee for their kids, in any situation. All we can do is hang in there and try to live the best life we can right now.

There are some interesting developments in the transplant field. The cardiologist spent a few moments addressing some topics we raised with her, which was a welcome conversation. There's lots to hope for in the future. Hope is good. Hope keeps me happy, particularly when I see how far Jordan has come.



By this evening, all was forgotten.

It feels like ages..

Since we had clinic (EKG, Echocardiogram, and doctor visit). Jordan did amazingly well today. It was a pleasant surprise. From the blood draw to the 40+ minute Echo, to the wait - he managed to keep it together, remain chatty and happy. This was such a far cry from the typical monkey-goes-to-clinic day.

My favorite part - in the examining room with doctor and nurse. Doctor takes out a tape measure to measure Jordan's length.

"I'm just going to measure you Jordan, and see how tall you are."

He looks at her, outraged, points his finger to the (very feminine looking) nurse across the bed and shouts,

"Go measure him!"

Later, same doctor leans in to examine him up close, as he stretches out. Jordan looks up at her and smiles,

"Hey farty!" He declared.

Our miracle baby. He makes us so proud.

The heart annual.

It was a tough day.



We left the house at 6:30 in the morning. It was still dark outside. The moon lingered in the sky.

"But what are we going?" Jordan asked. What, indeed.



We checked him into the lab at 7:00 a.m. We were discharged at 4:00 p.m. We got home at 4:30.

From the wait, to the unexpected bleeding, to the tears ... this was one of the worst biopsies Jordan has had. There's been turnover at the hospital cardiology department, and I think it shows. We've never had an experience like this before. I'm feeling pretty frazzled still. So many things about the day just angered me. There's something wrong about feeling angry about medical procedures. It shouldn't be this way, particularly at a hospital designed for the exclusive care of children. There should be a higher level of sensitivity when little kids are involved.

I don't know what made me angrier. The fact that Jordan bled out so badly, or the fact that a resident with poor bedside manner was sent over to discuss the situation with me. When I confronted her with a simple question - "Does Dr. H (the supervising doctor who performed the biopsy) know Jordan bled like this?" And she couldn't give me a straight answer, I lost it. Badly. I know this is a teaching hospital. I know residency is a learning process. I know how hard it is to try and look competent when you're young, and just starting out. I've been there. I still remember my first jobs out of law school, and trying to look clients in the eye and explain things, and not come across like some smart alecky twenty-something. It's hard. It's hard maintaining credibility when you don't always know the answers. But the only thing to do in those situations is to own up to it.

And this is my son you're talking about. If you stand there and try to avoid my questions, and dismiss my concerns with an air of "been there done that," I am going to rip you apart. Which, I am afraid, is exactly what happened. I'm not known for my politeness in the best of situations. In the worst of them, it's best to just step away from me. Monkey Sr. usually runs interference at times like this. Unfortunately he had to tend to Miss Mina.

The important thing is that early indications show that J's heart function is good. He's home, the bleeding seems to be under control, and he ate a little bit for dinner. I'm pleased to report that he also crashed at 7:00, for the earliest bedtime in history.

I'm confident tomorrow will be a better day. It's just got to be.

Tootie pancakes with Daisy Mix sprinkles.

First, Monkey had dinner. It was a healthy one.

After that, he indulged in whole wheat pancakes with maple syrup - heart shaped, and "Daisy Mix" sprinkles.

Later in the evening, resting atop the "pyramid of pillows, " he had popcorn and some milk. We had to keep him up late tonight to adjust for medications. Baby Galileo helped.



I had salad. Le Sigh.



We burn a lot of calories during the day. Conquering our fears takes effort.



"I'm rocking the Blue Oscar Dog," he said.



There was a time when I wondered about his lack of interest in physical challenges. It seemed to take forever for him to learn to walk up or down stairs, climb the slide by himself, or even ride a push car. Today, he was first in line to enter the gym room at Kids U. "Are you ready for class?" Miss Kai asked.

"Yep," he declared.

Yep? Where is this coming from? And where does the title of the post come from? A song. A song performed in gym class, when I thought he wasn't paying the least bit of attention. Later that evening, when presented with his pancakes, he crowned them "TOOTIE PANCAKES!!" And proceeded to sing the first verse.

I'm glad he ate non-stop all day. He won't get to eat again till after his biopsy tomorrow. It's an annual. That means it will take twice as long as usual. I look forward to January because it's Monkey's birthday month, but I also dread it for the ominous annual. I hate the annual, and I hate starving him all morning in preparation for it.