Wednesday, May 8, 2013

Pneumonia, A Hole in Our Heart and Eye Surgery #3

I'm so behind on writing that it is hard to know where to start. We work so hard to help Joey gain acceptance that I feel like I should not ever complain or groan about raising these two precious boys. And yet, today I am tired. Today I am weary. Today my back hurts and I have a killer sinus infection that I let go way to long because there just wasn't any way to get in to see my doctor while I was sleeping on a mini pull-out bed in Joey's hospital room. And that is part of being a mom. A mom of any child. Not just a child who has Down syndrome. Being a mom means that while you may have your day planned to the exact second of each hour, when a baby is sick you just stop it all. You put life as you know it on hold and go into your Warrior Mama mode. 

Did I mention that it is a privilege to get to do this? Honestly, as much pain and as much stress and worry being a mother causes--it is all worth it. The first night Joey was in the hospital I rocked in a chair next to his bed and I prayed and thanked God that I had the privilege of being able to be with my baby and that I have the privilege to be his mom. Joey got sick shortly after the Boston Marathon bombings and with that as well as the little ones from Newtown, Connecticut and the tragic death of Robert Ethan Saylor always in my mind-- I was grateful that I at least get to be with my babies.

So, a couple of weeks ago, Joey wasn't feeling so hot. On Monday he was grouchy and had a runny nose. No fever, a slight cough, nothing major. That night we went to a friend's house down the street for dinner. Tom worked late, so it was just me, Tommy and Joey. Right as started to dig into the yummy dinner Beth made, Joey started to hack and cough and hack and cough. Next thing I knew he was projectile vomiting all of his dinner all over me and him. Now this is when you know you have a very kind friend. Their entire family acted as though nothing was out of the ordinary as Joey vomited all over the place and her husband took their daughter and Tommy outside to dine al fresco while we mopped up the Italian dinner. Did he aspirate during his coughing fit? I don't know. It's one of the working theories we have.

The next day was supposed to be a big day at preschool. People from Akron Public Schools were coming to observe Joey in his school environment.  There were papers I needed to sign. I was going to drop off the kids early, work out, then head back to the school to meet with everyone to watch Joey and then we were going to head to Springside where I teach spinning every Tuesday at noon.  

At about 8:15 am Tom made the call that Joey was in no shape to go to school and I made frantic phone calls, sent texts and emails trying to cancel and find coverage for everything I had planned for that Tuesday.  Joey and I hung out at home all day where he was again, not himself, but didn't seem to be totally out of sorts. That afternoon we kept his scheduled pre-operation assessment with our pediatrician who said that Joey was either in the process of getting sick or getting rid of something.  He signed off on all of Joey's pre-op paperwork and there was never another vomiting incident. I thought that surely he must be in the process of getting better.

The next day he was still not 100% himself, but I thought he was on the road to recovery, so we had my friend and her two little ones over for a playdate. Joey was even grouchier after his nap, but still no fever, a runny nose and general grouchiness. The kids played and I mostly held him.

People ask us-- how did we know he had pneumonia. It's a great question. To be honest, we had no idea. 

However, after his bath on Wednesday night, his hands and feet started turning dark bluish-purple and his teeth were chattering. Within minutes he started to get really, really hot and suddenly his breathing was very ragged and very, very slow. I mean, like imagine time standing still. He would take in a ragged breath and then Tom, Tommy and I were all staring at him waiting for him to exhale. 

It was scary. It was horrible. We literally thought he was going to stop breathing. Tom's parents made it over to our house in record time and I had Joey bundled up in the car and I sat in the back seat praying he would not stop breathing. Why didn't we call an ambulance? I don't know. I don't think at the time we thought there was time to wait for one.

We screeched into the ER and found out that when you tell them that your child is having a hard time breathing and has a heart condition they take you very seriously and very quickly. The nurses and doctors were wonderful. I cannot remember the name of the pretty, dark haired ER nurse, but she was wonderful. She told us, "I would bet a million dollars that he has pneumonia." 

Pneumonia? In April? Huh? It had never even crossed our minds that Joey might have pneumonia. They did breathing treatments, shot him full of fluids and antibiotics, did a chest x-ray that confirmed that he did indeed  have pneumonia. In the midst of all this they also started him on oxygen as his O2 levels were hovering around 82. 

I also found that while getting the ER room directly across from the nurse's station is very convenient (it's our second time in that room this year) it is also so they can keep a very close eye on your little one.  Did I mention how scary this night was?

When the resident came in and told us they were admitting Joey I teared up, but to be honest, I also felt a huge amount of relief. A children's hospital is a very sad place at night. It's an amazing place, but also a little sad. 

The first 36 hours were the worst. Joey was getting fluids and antibiotics, but was not yet talking, signing or eating or drinking on his own.

We finally got him to sit up on his own for a little bit. Since Thursday was supposed to be "purple" day at school I had Tom bring Joey's shirt I had laid out for him to wear so he would at least be with his friends and teachers that he loves so much in spirit.

While Joey slept I read the little book I just received--"What I Want You to Know" by R. A. Hudson. It's described as a book for new parents of a child with Down syndrome, but I think it is perfect for any parent of a child with Down syndrome.

Here are two of my favorite pages:

I needed those pages as a reminder of how strong Super Joe is and how much he has taught us about perseverance, love and humanity.

Slowly, but surely, our little Super Joe started to feel better. He started with graham crackers (same food that worked back in January when he was in the hospital) and a sip of chocolate milk. Then our nurse brought in some toys and I knew our little man was starting to feel like himself again!

By Friday he was much more like himself and I knew we would be going home soon, especially if Joey had anything to do with it.

But our journey at Akron Children's Hospital wasn't quite finished. When we were being admitted we were asked our religious preference and I always say Catholic and ask if there is a priest who visits. On Thursday, the Chaplain on staff visited with us and prayed with me and Joey. He apologized for not being Catholic and I told him it didn't matter!  The prayers and company were incredibly comforting. 

On Friday, while Tom was with us, a beautiful petite woman with dark hair came in and introduced herself as Mandy with Quinn's Crusade. She offered us Holy Communion and we prayed with her and I asked her about who Quinn was. This is when I found out what a real Warrior Mama is-- and her name is Mandy and she is Quinn and Camden's mommy.  Her precious Quinn had Junctional Epidermolysis Bullosa- Herlitz in which her skin would literally break down to the touch.  As it says on their website, there is no cure. This is a death sentence and most children who have EB do not live to their first birthdays.

As part of Quinn's Crusade, Mandy and other volunteers bring Holy Communion and comfort to children and families every Friday. Quinn's Crusade is raising money to help build a chapel inside the Amplantz Children's Hospital at the University of Minnesota (where little Quinn lived almost her entire short life along with her parents and brother who moved there during her treatment).  

Quinny Girl
Photo of Quinn from

I cannot begin to explain what it meant to meet Mandy and to hear about Quinn. From the minute she was with us she said, "This is not about Quinn- I want to be here for you and your son." But we wanted to know. We wanted to hear about Quinn. We wanted to learn more. Mandy is an amazing Warrior Mama. To have the strength to do what their family does to continue giving back is incredible. The comfort that Mandy brought to us was so kind, so gentle and so incredibly selfless. I asked her after we talked if I could give her a hug and thank her. 

If you would like to learn more about Quinn's Crusade or donate to their work, please visit here

Thank you for sharing your time, love and compassion with us, Mandy. It was such an honor to get to meet you and learn about Quinn.

A Hole In Our Heart

I thought I would be able to finish updating all of Joey's latest adventures today, but there is just so much going on right now that I can't get through it all.

This Monday, after Physical Therapy and a chest X-ray that showed his pneumonia is resolving, we had a 3 hour cardiology visit with our wonderful cardiologist Dr. Khan. 

The cardiology visits are intense. They are very long and the echocardiograms are tough.  We had many of those while we were pregnant with Joey and many more before and after his open heart surgery. 

As it stands now, his ASD repair is looking good. His mitral valve still leaks, but there is not a large amount of increased pressure, so he is looking good. His blood pressure runs high every time we are there, but we can't figure out if that might be white coat anxiety.

This time during the echo one of the things the echo tech said stood out-- he pointed out a PDA to another tech. 

My ears perked up. PDA? Huh? That doesn't sound right.  That hole closed long ago.

Or not. Turns out, Super Joe's PDA has re-opened. And as is often the case with our super hero, it's very rare and highly unusual. Another thing to be monitored. 

Eye Surgery #3

Tuesday was spent at the Cleveland Clinic Cole Eye Institute and Joey is scheduled for a third eye surgery on Friday to determine whether or not he does have Brown syndrome in his right eye and if he does they will be placing  a "spacer" in the tendon.

I have some doubts that this surgery will happen. I am worried that the anesthesiologist might pull the plug. I have tried to voice my concern. I called the clinic, I told the doctor on Tuesday and I had our pediatrician's office fax up the latest x-ray report. 

We will see what happens! Either surgery will be stopped by anesthesia and we will re-do this pre-surgery dance of multiple appointments and pre-op assessments. Or- they will go in and he won't have Brown syndrome.  Or- they will go in and he does have Brown syndrome and they will operate on the tendon.

Okay-- with that-- if I don't get the chance to write again-- Happy Mother's Day to all the moms and grandmas. Thank you to my mom for all of her support and love and words of wisdom.  Thank you also for taking my multiple phone calls daily and for always listening to my latest worry. Love you, Mom! 

Have a wonderful week and cheers to all of the Warrior Mamas in each of you!!!  If you think about it-- please say a quick prayer that Joey's third eye surgery is the one that works and that he has a quick visit in and out of the hospital.


  1. Wow! Oh Joey, sweet boy, you just love to keep mama bear on her toes. Seriously, I would have thought allergies until his bath. Bear had pneumonia the same time as Joey (though obviously not as bad). Runny nose from her T&A and just started to "sound funny" when sleeping. Took her in and they caught it early. The thing is, if she didn't just have surgery, I would have been sleeping with her and I certainly would have sat on it for a few more days. They told me if I waited 3 days--it would have been like Joey. Anyway, this isn't about me so I am just going to say that I am positively relieved that he is doing better. I just cannot imagine the fear that you experienced on the way to the hospital. The panic or how long that drive must have seemed to you. Your Joey is a superstar with all he has gone through.

    PDA. . . are you kidding me?! Could he have the high pressures due to the leaky valve and the PDA? Of course, I would have high BP walking into the cardio office! I pray that they watch him very closely and that Joey will not need another heart surgery.

    Keep us posted on the eye surgery. Anesthesiologists get nervous about lung issues. When I worked at CHOP, it depended on oral steroids--needed to be 30 days off steroid, BUT it is different everywhere you go and with each doc.

    Finally, your mom is GORGEOUS!

    1. I couldn't believe they didn't catch it when we were in the day before! It hit him so fast-- apparently if they aspirate, pneumonia can hit 48-72 hours later, so that is why they thought he might have aspirated. Am so glad Bear is feeling better and got through her surgery. According to the call I just had with the C Clinic- they have his radiology report and we are good to go.... I have my suspicions though!! Hugs to Miss Bear!!! :-)

  2. Oh wow. So much going on. His pneumonia stay sounds a lot like Cora's recently, although I don't think she gave us quite as much of a scare. (Although her last pneumonia over a year ago certainly did. Thank goodness we were already at a hospital at the time.) And that question of how do you know if your child has pneumonia? It's a scary one. Apparently most cases of pneumonia are outpatient with just antibiotics. But not always. We noticed that she was having a hard time breathing, was very pale, and that she was having significant retractions around her rib cage. I guess seeing her in severe heart failure helped prep us for that one. Glad Joey recovered and hoping that the surgery goes well. Will be sending good thoughts for that and for his PDA.


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