Surgery Postponed - What's Next for Joy

This girl is a character. And for all her developmental delays, Joy doesn't miss a thing. Not one little boy gets away with anything when she is around. She is becoming a professional tattle-teller but let's face the facts, it's three extremely active boys against one little girl...she definitely holds her own! She is learning in leaps and bounds. Just this week, we had a language explosion and she tells me everything whether I understand what she is saying or not. I admire her tenacity!

Joy rarely complains about her oxygen. 

Other than a few bloody noses, we have settled into a decent routine.

Joy was scheduled for surgery on January 17th with an ENT and her Pulmonologist. On January 14th, I spent the morning (translate a few hours) going back and forth with the hospital arranging everything with her medicine schedule, her language issues, etc. I had already pulled a few strings and gotten our favorite anesthesiologist on board.

Is this not the cutest fountain head you have ever seen? We are in between short hair and long hair and recently found these cute flower elastics that she loves so we are back to top knots! 

I also received some paperwork in the mail that day, three days before surgery, that said Joy was supposed to be off aspirin and vitamins for 10 days prior to surgery. I had spoken to the ENT office, pulmonology, and cardiology practically on a weekly basis since December and to my knowledge, no one ever mentioned this not-so-minor detail.  I figured it wasn't that big of a deal, because she is on a very teeny tiny dose of aspirin.

Joy was a little tentative and overwhelmed on her first visit to a children's museum.

When the medical assistant called me with the official surgery time for Thursday, I mentioned just receiving the paperwork and the aspirin issue. Everything fell apart from there. SURGERY CANCELLED for that Thursday. We certainly don't want Joy to bleed to death if they go ahead with a tonsillectomy. She MUST be off aspirin and vitamins for 10 days prior.

Amazingly, Joy stuck with the paper mache project for about half an hour.  

I had been feeling very anxious about this particular surgery for some odd reason. More so than the heart caths where they thread a wire up my kid's tiny arteries and tickle their hearts. After a big ugly cry and some wise counsel from a friend, I realized that God had a bigger plan and there must be a reason for the postponement of Joy's surgery. We are very ready to resolve some of these other worrisome health issues which made the push back a hard pill to swallow.

But God's plan is always best. I was reminded of the "cracker incident" in Boston where her cath was cancelled until the next day because she got a cracker in her mouth. Same as then, after the initial disappointment over the change, I felt a sweet relief. Someday I will learn it is always best to let God be in control.

New surgery scheduled for February 21st. We also had a cardiologist appointment this week which showed her pressure gradient IMPROVING! Joy will continue on her medicine and oxygen regimen until summer when we will head back to the cath lab to check her pressures. 

We are headed in the right direction!

Playroom Prep

Post surgeries, adoptions, and holidays, Bob, with some help and motivation from our good friend Dave, got in gear and finished our playroom project in the basement. My husband is a hard worker for which I am very thankful. 

But what I am even MORE thankful for is his ability to let all the helpers actually help. He is a bigger man than me as my perfectionism gets in the way of letting the kids have at it. To the point, that I did not even go downstairs during any of this. I sent the camera down with Erika so I could check in via technology. I'm a wimp, I admit it.

 We have a collection of paint shirts that helped a little. 

Joshua is quite a working man.

Last week, I sent the girls with Bob to pick out paint. I said I didn't care what colors they picked and I meant it, pretty much. Apparently, Bob didn't care either because he came home with these and said that is what the girls picked and he was just doing what I said to do. I am still wondering if this is payback for my blase attitude. At least it wasn't black and purple. It's going to be fine.

Biggers went high.

 There was a central dipping station.

 Youngers went low, real low.

 Some got edges.

  Others filled in.

 I'm certain that he helped somehow.

Every picture of Micah painting shows him using a brother for support.

 I thought that was so cute!

 Pre-paint coverage, we had some Chinese going on.

 'Cause that is part of who we are.

 My own little melting pot!

Most of the crew hard at work evidenced by the splatter.

A sneak peak! 

There is carpet, lights, a craft table, train table, and room for the doll house. 

Kid heaven. 

Now that the excitement is over with only a little paint left under the fingernails, I will go down and take some pictures myself! Better get my laundry area organized.....

Apple, You Were Very Good To Me!

Hello!

Here I am. Back in cyber life. Lots to tell. Like surgery postponed, the basement playroom reveal, and a surprise trip just for me. Stay tuned. 

I was gone because MAC was attacked.

Oh yes!

The laptop that was most likely born in China, sent to the US, bought, used, and given back to Apple,  eventually refurbished and sold to little old me, yes that very one.

The same little old portable computer that made another round trip to China. Such a well traveled fellow.

Seems that his ultimate demise was destined to be at the kitchen table.

Because I like coffee.

And it spilled.

MAC died.

Instantly.

Aargh!

The nice boy on the phone agreed to validate my Apple*Care contract even though I was nine months past due on registering. So nice, that boy.

But alas! Apple*Care does not cover liquid damage.

This was relayed to me by the children at the Apple*Store. They are such good kids. Busy, very busy. 

So the silly old computer got sent out to the shop of somewhere?

And I prepared to pay. A lot. More than I had. 'Cause after all, it's not tax time yet!

And the truck needs brakes, my kid landed in Boston, and well, nine kids keep wanting to eat. 

Real life.

This week, after a very disappointing Monday, I declared Tuesday to be a day of MANDATORY FUN! We loaded up the van and set off determined to find some joy-filled adventure.

Our first stop was the Apple*Store to pick up my newly repaired MAC. 

Out it came, all polished up, and in practically perfect working order. It made my heart beat faster to see it again. 

The nice young man (boy) pulled out his iphone and began the exit process. Press this if you agree, press that to accept the charges, sign with the tip of your finger....blah, blah, blah. Get your credit card ready. 

Hmph!  Hold on, let me try that again. Huh! And again. That's funny. Usually, when I get that screen, it still asks for payment. Seems that Apple is taking care of this for you. That happens every once in awhile.

Tears begin to well. 

I gather my seven children up and walk out of the store with a grateful heart.

I might not even give up coffee like I had vowed post MAC attack. 

Though I probably should. 

Joshua - Moving Forward

Hope and a future. 

That is what we have wished, prayed, and sought

 for our sweet Joshua.

One morning after some discreet paper folding behind the couch,

Joshua  presented me with a heart.

His heart. 

On the RIGHT side of his body.

Because that is how God made him.

One of the ideas that came out of our second opinion from Boston is that it might be wise to re-cath Joshua to see what is going on after a year home from China. He has only had one heart cath in September of 2011 confirming the complexity and gravity of his heart disease leaving him no surgical options due to his pulmonary hypertension gone unchecked for eight long years. But with no empirical data over his lifetime, it seemed liked a good idea to find out how he was doing and perhaps get an idea of the rate of his heart failure progression so that we could be as prepared as possible for the future. 

Our cardiologist readily agreed and we scheduled a cath for December 4, 2012. After a restful night at the Ronald McDonald house, we checked into the hospital bright and early.

 Look what the nurse had waiting for Joshua in the room. 

Yes, a panda pillow case.

Do you think you could squat on a hospital bed, play the ipad, AND be comfortable? 

Ready and waiting. What a difference a year makes. Last year, he had no English and we couldn't explain anything. This year, we told Joshua as much as he wanted to know. Which actually wasn't all that much.

Our anesthesiologist had everyone cracking up as Joshua drifted off. Something about smelly feet and Joshua would be the only one who didn't have to smell it because he had the mask on. Everyone pretty much knows us now as we are becoming frequent flyers in the heart world at our hospital.

After the cardiologist was done with his part, we were paged and we went to meet with the doctor up on the eighth floor. His report was that everything was the same. I was relieved that it wasn't worse, which is what I feared, as Joshua seemed to be conserving more energy lately. We then talked long and hard about Joshua's morbidity and what that slow debilitation was going to look like, the risks of anesthesia (huge) for a single ventricle patient and not worth any future heart caths, the fact that surgical intervention was way off the table, and an actual guess at the timeline for the remainder of his life. A hard conversation but not unexpected.

Joshua isn't the best waker-upper from anesthesia. This time he did better as we were there before he woke up but he was quite grumpy and wanted the IV OUT of his hand. I think we exasperated the recovery room nurse trying to get him comfortable.

Once we did our two hours in recovery, we did the rest of our laying still time (three more hours) up in the room with lots of food. Joshua enjoyed me feeding him each spoonful. It's fun to spoil my kids every so often and we take advantage of our time alone together!

And then the doctor walked back in.

Kicked the nurse out, drew the curtain, and sat down. 

Uh-oh.

He had run the numbers. The nitty gritty numbers that mean something when you know about Wood Units and PVR and PA pressures and calculating Ohm's law. 

Guess what? 

Joshua's pressures have come down enough with medication to put the discussion of surgical intervention back on the table.

THAT.WAS.A.SHOW.STOPPER!

The perfect definition of a one-eighty.

In the morning, we discussed how and when our son would die. 

In the afternoon, we talked about our son's future and how it may extend beyond the imaginable. 

Would the word "miracle" apply here?

After lazing around the hospital a few more hours, we were discharged THAT DAY and promptly headed to a buffet serving Chinese food. Imagine that?

Bob and I were in shock and on information overload. We kept asking each other, "Did he say ???" and "Did I hear right when he said ????"

A week later, Joshua stole the show for his roles as Rex and King Herod in a play at church celebrating the coming of the Christ child.

I was grateful that our church family got to see Joshua for "who is he is" instead of "what he is." 

Yes, he is an orphan-no-more from China but he is also an amazing person and quite a lovable character.

 

His origami skills are still in full force. 

We support the paper industry in a big way around here. 

 

We are still working on that elusive weight gain. When you are back down to 37 pounds, you get ice cream on your cereal if you want it. 

After a few restless weeks of waiting, we met with our cardiologist to process what had happened with the cath and what the immediate future looked like. Fortunately, our doctor is extremely well connected in Boston and he already had a preliminary plan in mind as to who he was going to contact to discuss Joshua's options. He will be transferring records and making lots of phone calls, all for Joshua, on our behalf!

To say this is daunting is an understatement. But we are grateful for the opportunity to know that we truly will have done everything possible for our son, whatever the outcome of the exploration with Boston may be. 

And is it any wonder that our time in Boston with Joy may have prepared us for a future with Joshua? 

Amazing how that works, isn't it?

He cracks me up!

He makes me smile.

All the time.

This precious boy has taught us how to live and love.

Could we ask for anything more?

Joy - A Step Back Into Reality

Along with a step back, it's good to remember how far we've come.

August 20, 2012

We received our update from China with a few pictures of a little girl who looked slightly annoyed, perhaps a little confused, and probably downright hot in the very southern part of China.

Here is what I cropped out the last time I posted the picture. I looked and looked at this picture trying to understand.

Meeting your child is beyond words and a bit of a blur. I was looking at pictures the other day and discovered a few that I had glossed over. Maybe I didn't want to think about how painful that day was for her. Oh, this one breaks my heart. Our guide took the picture while the director was handing us our photo book.

I am pretty sure Joy had absolutely no idea what was happening to her.

She tried so very hard to be brave.

A few weeks home and she was at the beginning of acceptance. The fears were subsiding as the trust began to grow.

In October, Joy found her smile, the one that wiggles from the inside out!

After her first heart cath and sometime before her second, I glanced down at her sleeping peacefully next to me and felt that kind of deep and bubbly love only a mother has for her child. Every one of my children has a different "love" story.

November brought a break from reality after we got home from our second heart cath in Boston. I think I let myself believe that Joy's heart condition wasn't that bad. We took her off oxygen during the day and tried to live a more normal life that befitted a very active preschooler. We knew we were in a "wait and see" situation so there didn't seem any point in thinking anything but the best.

This girl is happy though in spite of the too many blue spells that put her back on oxygen around the clock. Those episodes never slowed her down a bit. She is a trooper about her medicine and as sweet as she is bossy. The little boys don't get away with anything when she is around. She regularly says "I luh you" in a way that warms the heart right down to your toes.

While it was discouraging to have Joy back on oxygen all the time, we will do what we need to in order for her to have the best chance for a longer life. With her tethered to a machine, we all have to pitch in to keep her busy and engaged. 

We finally succumbed to the handicap license plate. I put if off for a long time, trying not to visually admit that we had some extra special needs. But tromping through fields at fairgrounds with two heart kids in tow along with Joy on oxygen, now indefinitely, convinced me that it was time. 

We head back to the hospital in a few weeks for another surgery with the ENT and Pulmonologist working in conjunction with our cardiologist to try and eliminate/decrease any other factors contributing to Joy's pulmonary hypertension.  

Happy New Year! 

We love you Joy and couldn't imagine our family without 

your sweet smile, your infectious laugh and your precious hugs.