The Experience

Almost one year ago we received the news that our son would have a congenital heart defect. We knew that having a baby would forever change our lives, but we were unprepared for the change this new life would bring. We tried to prepare ourselves. We were, at the very least, somewhat intellectually prepared (though no one would have been able to convince me that I could have learned the things that I have in the past seven months of Ayden's life). We knew that we would be on an emotional roller coaster, one that would make us cry and laugh... and sometimes want to throw up.

In short, I had some knowledge, and I felt some of the terror and sadness, but in no possible way could I have comprehended being a heart mommy without the experience. The sights and sounds that I will remember from Ayden's hospital stays are almost unbearable:

No one should see her child stop breathing. No one should listen to the whirl of blood circulating through an ECMO machine and into her child. One shouldn't know how to explain a bilateral bidirectional Glenn. No one should hold her child in the sitting position because he gags and wretches every time he coughs. No one should need to jump to her feet every time her child screams in the middle of the night. One shouldn't need to request that the doctors consider other possibilities when her child has failed extubation twice. No one should learn to put a feeding tube in her child's nose.  One shouldn't think about the things that could be improved upon in a hospital...

In the midst of all the emotion and all of the images and the complete exhaustion, there's Ayden. Handsome, charismatic, perfectly-created Ayden. The kid who smiles with a chest tube. The baby that flirts with the nurses. The little boy that loves wagon rides. The champ that has learned to eat three times now. The child that loves his six WubbaNub friends. Talking, kicking, drum-playing Ayden. A MIRACLE.

God has granted me mercy. He has showered me with grace. He is teaching me patience. He is loving on me with the joy that Ayden exudes in all circumstances, and He has given Ayden, Bryan, and me the strength to endure-- no! to triumph over-- the emotions and images, the experience.

That is not to say that I am not sinful. Even now I sit here and fight the fear of returning to the hospital and seeing the anguish my son experiences in being reattached to the monitor and in being needle stuck for a line. Since the Glenn surgery, the longest Ayden was home was two weeks, and the shortest was 17 hours. We have returned to the hospital three times.

Please, Lord, allow Ayden to stay home until his next scheduled visit.
Please allow him to just be a little boy.

(If you didn't catch that, Ayden is AT HOME! Praise Jesus!)

Mommy insisted that I be given a "Havilah Bath" before I could go home.
I always scream at Ms. Havilah, but, I'll admit, I do smell and feel better!

"Dadda" was my first word, but "Havilah" was my second. (I'm serious.)

I always help the nurses and doctors use their stethoscopes on me.
I'm a good helper.

Please pray for Render Caines. He is Mommy's childhood pastor,
and he married Mommy & Daddy. He has triple bypass surgery today.

More Summing Up

Ayden's chest tube output had slowed down to a trickle, so it was pulled this morning.  He got a dose of morphine for the pulling, so his nurse, Tara, took advantage of the situation and changed his PICC dressing immediately afterward.

As Allison said, now we wait.  He is on the diuretic regimen he will go home on (assuming fluid doesn't start to re-accumulate).  The real question now is:  how many days worth of unchanged x-rays will it take for Ayden to be discharged?  Two?  Three?  Five?  When we brought him to the ED last weekend, I was expecting to be here at least through the middle of the following week (i.e., next Wednesday).  The attending said during rounds this morning his expectation had been next Monday.  Time will tell who made the better guess.

***

After the tube was pulled, and after the PICC dressing change, Ayden gave us a little scare.  For some reason, his heart rate dropped down into the 90s and stayed there for several minutes.  (For perspective, his normal awake heart rate has been in the low 140s.)  We have no explanation for why this happened.  The least nefarious answer is he had an unusual reaction to the morphine.  They've already done a chest x-ray and an EKG to make sure something else isn't going on.  Allison and I will most definitely be "monitor watching" more than usual today.

***

And now for something completely different:

I didn't get turkey on Thanksgiving, but I did get sweet potatoes. And I liked them.

 

Ms. Margaret felt bad for hurting my feelings when she changed my chest tube dressing,
so she took me on a wagon ride to make up for it.

 

Mommy tried not to go too crazy with my door!

I got mail from Gran's class in Maryland!

Ms. Courtney! Okay, so it's funny.

I know Ms. Tara has her own little boy, but I'll always be her "sweetest boy."
She loves me so much that she lets me chart with her. I am good at charting.

The Waiting Game

After much angst and overwhelming frustration, Ayden has a PICC line. He had to go to the OR to get it, but it's in.

Ayden's chest tube does not appear to be putting out very much fluid today, so it will most likely come out tomorrow. Then they will try to figure out the correct amount of PO diuretics. Then they will watch... wait... watch... wait... who knows how long Ayden will be here...

"Let me explain. No, there is too much. Let me sum up."

Summing up events since the last post:

• Ayden's rash was checked out at the pediatrician's office.  The tentative diagnosis was erythema multiforme.
• A visit to the allergist was scheduled for Monday (today).
• Erythema multiforme is typically caused by a drug reaction.  The allergist (over the phone) thought the two most likely culprits were aspirin and enalapril (two of the three drugs Dr. K wants him on long term).
• The rash started to go away Friday afternoon.  By bedtime, it was basically gone.
• Ayden started getting upset overnight Friday.
• We checked his oxygen level while he was asleep at 6am Saturday morning.  He was in the 60s.  Not good.
• We woke him up and he was in the high 70s.
• Over the course of the morning, the awake sats slowly dropped.  By early afternoon, they were in the 60s.
• By early afternoon, Ayden was on his way to the ED.  He was given oxygen.  A chest x-ray was taken.  It showed pleural effusion on that right side.  Again.
• I sat with him all afternoon in the ED until someone was available to put a chest tube in.  That was completed at around 8pm.
• He came off oxygen yesterday and has stayed off it.
• We have no explanation for the rash. Or for the effusion.

Quickly

Ayden is at home. He was discharged yesterday after 48 hours of terrible hives. They were able to clear them up with a steroid, but they appear to have returned. We are unsure as to why he has them, and we are hopeful it is not the new formula. He is miserable. Otherwise, the fluid in and around his lungs is mostly gone, and his oxygen saturations have been fabulous. We are glad to be home, but we wish Ayden was happier and more comfortable.

Pictures from the previous days in the hospital:

Recent Events

Yesterday: The attending cardiologist, Dr. Kaushik, thought Ayden's morning x-ray was even more clear in some areas. Ayden has his PICC redressed, and his chest tube dressing was replaced with steri strips.

Today: Ayden was given a chest x-ray and lab holiday. One of his diuretics was weaned to once a day. His formula volume was increased because he hasn't gained any weight in a month.

Tomorrow: Morning chest x-ray and labs are scheduled. The weaned diuretic may or may not fall off, depending on the x-ray.

Carefully Examining the Card from Alex

Aunt Elise's Gift

Sitting Up Like a Big Boy

Loving the Toy from Aunt Sherry

9 Month Hospital Clothing from Aunt Elise

Ms. Tara and Ayden

Fun in the Hallways with Ms. Jessica

*HeHe. She's so funny!*

Daddy Makes Wagon Rides Great Fun

Chest Tube Pulled

Ayden has had little chest tube output over the past 48 hours, so they pulled it this morning. The chest tube had moved from its original location, so we are unsure as to whether or not the decreased output is due to lack of fluid or to tube movement. Ayden's chest x-rays indicate that the areas in and around his lungs are clear, so they felt comfortable pulling the tube. Ayden will have a chest x-ray done this afternoon and in the morning to monitor how he is doing. They will continue to watch him over the next few days. The doctors don't wish to send him home too early, only for us to return soon after discharge.

(Yesterday, Methadone GOT THE BOOT! That's one less medicine to go home on! So far the doctors have gotten rid of two medications!)

Formula Trials Continued

Ayden seems to be tolerating his Monogen formula significantly better than Enfapoop (i.e. Enfaport). He has been a joyful baby all day. The nurses say he is the happiest chest tube baby they have ever seen. The chest tube still has output, though the fluid has decreased. His chest x-rays remain unchanged. His labs are unremarkable.

Yummy sweet potatoes!

I visited Ms. Julie today!

I missed Ms. Jessica! She just got back from Brazil.

I got MORE mail!

I love playing with my cards. Mommy is afraid I am going to give myself a paper cut.

I enjoy telling Ms. Adrienne all about my day.