Mercies in Disguise

A friend and I have been wrestling with questions that don't seem to have answers. 

In church today, our Pastor talked about turning the bad into good.

One statement struck me intensely.  

"God didn't cause it, He sure didn't make it happen, but He used it." 

As I grieve the last few weeks on the hard road, I continue to fight the desire to plead for answers, the ones that might never come. 

Fully Functioning hearts. 

Complete healing.

That God would bind up the broken-hearted in this world.

Sometimes God gives us what we need and not what we want. 

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are

 Your mercies in disguise.

May God give me the faith to believe.

A Big Decision

Our oldest son made a big decision this week. 

A very big decision! 

After spending several years wondering what in the world he wanted to do with his life, (go ahead and read between the lines there) something has caught his eye and his attention.

Like Attennnnn-hut!   

Meet one of our country's newest members of the Armed Forces. 

Jerrod was sworn into the United States Marine Corps at 3:40 pm on November 16, 2012. He is officially a Poolee in the Delayed Entry Program giving him a few months to prepare physically and mentally for the rigors of service.

He is now commited to the Marines for the next eight years, four of which will be active. His call up date is tentatively April 23, 2012. 

Ahem! April 23 just happens to be my birthday. That's just plain cool and I like it!

We are very proud of our son for following through and making a commitment. We know he can do anything he sets his mind to. 

As for being the parent? Not quite sure what to think about it all yet.

Honestly?

Phew! Two down and eight to go. 

Heaven help us.... 

The Hard Road - Part V Cath Day

Joy's second heart catheterization happened on November 7, 2012, barely a month after her PDA repair on October 12, 2012.

Sometime during the night, I got up and hid every scrap of food and water that I could find. I put it on top of the closet waaaaaay out of reach. I didn't want to take the chance of another "mistake" and have Boston Children's kick us out for non-compliance!

It was interesting to have the same procedure done in a different hospital and compare the experiences and protocols. In Boston, we were wheeled down to an individual room in the cath lab where the set up and recovery occurred. We met the anesthesiologist on that morning and he just had to do it, "No crackers this morning?" I smiled weakly and shrugged. What's a mother to do?

They gave Joy some medicine to make her sleepy and told me she would probably drift off. Not happening. I had to strong-arm advocate my way into the actual cath lab. First, they thought I could walk down the hall, then they rolled their eyes when I went with them right into the room. We put Joy on the bed and she fought the good fight. The anesthesiologist said he gave her as much as he would give me before she was finally out. Then I was excused - directly. Which was good, because I was definitely ready to go. It's hard to leave your kiddo in an operating room but even harder to see them there. 

In Boston, they promise to call you with an update every hour. I went down to make myself eat something and wait for Bob. Right after he arrived, they called and said Joy was doing well and they still had not decided what exactly to do, whether they were going to take the occluder out or not.

Not twenty minutes later, I got another call while I was indisposed (yes, read bathroom at the most inopportune moment) but for crying out loud, when the phone rings from an operating room where your kid is, you definitely want to answer! They were all done after only 90 minutes and they had decided on Plan A - leaving everything as it was. We weren't sure if that was good news or not at that point but it was certainly the least invasive.  

I had asked to be present as soon as Joy was out of the cath lab and they let us into the recovery room before she was even arrived About 25 minutes later, they wheeled her in and she looked good.

Joy slept peacefully for her two hours in recovery. Then she woke up and said, "Hi Dad," flashing him a big smile. Somehow, that was a huge moment because ever since she has finally seriously bonded to her daddy. 

Dr. Marshall came in to give us an update on Joy's heart. The pressures were consistent with what our original team had seen in the cath lab on October 12 after the occluder was put in. These numbers were acceptable although still causing Joy to continue to develop pulmonary hypertension. That news was certainly a big relief knowing that she was not at immediate risk of death. One observation was that there is still some blood flow shunting through and around the occluder which a month out should have closed itself off. What caused this channel to remain open is a mystery. 

The bottom line is that we were left with more questions than answers about Joy's heart. We don't know what caused the spike in pressure on October 31. We don't know why there is still blood flowing through the occluder. We don't know at what rate her PH will progress. We do know that her PH is in the moderate to severe category and she will be monitored closely. I don't think we can completely rule out a future Plan C, making a hole in her heart on purpose.

We were sure glad to see our daughter wake up full of life, greeting everyone with her winning smile.

Ivy graciously shared her musical therapy with us since Joy had to lay prone for six hours. We sang Itsy Bitsy Spider, Old MacDonald, and a few others. Music is calming, that's for sure.

Once we got the okay, Joy bounced out of bed and was raring to go. Notice above that we went oxygen free. It was nice to give her a break from the tubes for awhile. We toured the floor and then went downstairs to play on the musical stairs and generally run around. I was surprised how quickly she bounced back from the anesthesia.

 Joy loves to grab the camera.

 I found these pictures of feet and thought they were hysterical.

 She may not speak English but she has a fun streak in her.

Every time we walked by the front door, she pointed - "Get me out of here, please!"

We played and danced on the stage making Ivy laugh at Joy's antics.

At the end of a good day. 

Our crazy happy funny girl was back in action and now we could think about leaving the hospital.

Part VI - The PH doctors tell us what they think and we head home.

Time to Unpack?

We saw another one of these this week.

For a sleep study in which she slept and I didn't.

Photo Courtesy of Joy Peterson

I have not unpacked since China. 

Literally.

My toiletry bag has remained on my bathroom counter.

Maybe this weekend, I ought to put everything away and perhaps then we can stay put for awhile?

At least until December 4th when we have another heart cath scheduled.

Stay tuned. 

I will be back to continue Joy's story. 

The Hard Road - Part IV - Boston Bound

Next stop: Boston Children's Hospital.

Wanting to avoid having two cars in the city, we wondered who might be available (on very short notice) to take Joy and I down to Boston on Tuesday. The plan was for Bob to join us on Wednesday for the heart cath.

God laid it on my friend Kristel's heart to drop everything and bring me to Boston. And when I say drop everything, I mean leaving her 15 month son at home and halting her house packing for a whole morning. This is Tuesday. Kristel and her family are leaving on Friday to move halfway across the country. Not only was I incredibly grateful for the ride from someone who knows Boston well, but we also got to spend quality time together before she left.

Here we are grinning wildly in the lobby trying desperately not to cry. Which we did anyway. The gift of friendship is precious indeed. Thank you, Kristel, for being part of the journey. You held my heart and my hand all the way to Boston and you are a prayer warrior, for sure.

Once we arrived, we went to the 8th floor and were sent back down to Admitting. That took awhile. We colored and played in the waiting room. When our name was called, we went to do paperwork. As we got into the office, my phone started going off with Massachusetts numbers. Finally, I rudely answered one and it was one of the cardiac doctors. They wanted to know when Joy had last eaten because they were considering doing the heart cath today. 

"Uh, uh, I think she had rice cakes a few minutes ago and some water," I stammered.

What? Here I am in Boston with Joy, by myself, and we're going ahead with the cath? A bit overwhelming.

Once we got settled into our room on the 8th floor, a few things had to happen before she would be ready for the cath lab. One of them was another echo to check on those pesky pressures.

Here is a God moment. The tech who came to do Joy's echo was Chinese and spoke Mandarin to her for a whole hour telling her how pretty and good she was. I'm not sure how much she understood but she did nod a few times and was relaxed enough to fall asleep since it had already been a long day.

During the echo, about a bazillion doctors swung through to meet Joy. In Boston there are medical students, residents, fellows, and attending physicians. Then there were more from the cath lab and several visits from anesthesia. It was a wild three hours and I definitely lost track of who was who. I never had time to even call my husband and tell him what was going on.  

Dr. Marshall came and introduced herself to us. She was very kind and Joy was her patient while we were in Boston. Dr. Lock, the best heart cath guru (as the nurses called him) possibly in the country also came to visit and here is why.

There were three plans for Joy:

A) If, during the cath, the pressures were reasonably low (below something like 80%) then they would leave everything the way it was.

B) If the pressures were higher than they were comfortable with, then Dr. Lock was going to try and take out the occluder because to leave it in under the circumstances of high pressure would put Joy at high risk for collapse and death. In his words, "I'm not going to pull very hard." Imagining a piece of metal going into my kid's heart was difficult enough, but thinking about it coming out was tough, tough, tough.  

C) If the occluder needed to come out but they were unable to retrieve it, they would wake Joy up and plan to go back to the cath lab a few days later to make another hole, creating a man-made PDA, in her heart. Dr. Lock has done this three times in the cath lab and all three patients survived. So I was told.  

Plan C would only have happened in Boston. I was glad that was where we landed.    

Next up was getting an IV and a chest X-ray. I made the nurse stop by the elevators long enough to call Bob and tell him what was going on. It all felt very rushed. I was afraid they were hurrying because of the urgency of the situation but it turned out they had an opening in the schedule and were trying to be prudent. 

 Joy had a few rice cakes around 10:45 am with a bit of water. Anesthesia finally decided that 4:30pm for the cath would be fine and I proceeded to sign all the permission papers. At some point during the afternoon, I decided to get on the merry-go-round and let it happen. Less time to worry. Just get it over with, right?

Around 3:30, we were ready to go and waiting in the room for them to call us down. Joy doesn't really watch TV so we were dressing up, taking pictures,  and the Child Life Specialist had brought some toys down. As another mom, the nurse and I were standing in the doorway chatting, all of the sudden the nurse exclaimed in disbelief, "She's eating!" 

Sure enough, the little bugger had got ahold of the bag of rice cakes and had one in her mouth. I fished it out and was pretty confident that that she hadn't eaten any. So was the nurse. 

But not anesthesia. They pulled the plug. Oops. I think there were some mad doctors. 

Initially I was irritated but then felt some serious relief. I had felt a little railroaded and was unprepared for things to happen that fast so it all worked out in the end. 

We were put on the schedule for third case the next morning. That was disconcerting because Joy would not be able to eat after midnight and third case could be called as late as early afternoon. Kids who grew up in orphanages and can't speak English don't do real well when you withhold food. 

After the decision was made to cancel the cath that afternoon, I let the poor kid eat and eat and eat some more.

A highlight in Boston was spending time playing with Ivy Joy who has had three open heart surgeries and is scheduled for a fourth tomorrow (11/14/12). Ivy is as sweet as she looks and her smile grabs your heart and squeezes. Mary, her mom, is calm and full of the kind of peace that only God provides. She was a great comfort to me during all of the hullabaloo that afternoon. We took the girls down to the cafeteria for dinner and got to know each other a bit. 

Ironically, Ivy Joy is from the same orphanage as Joshua and we had already planned to visit Ivy at some point during her time here. Little did I know we would get a direct first class ticket to Boston Children's.  

Part V - In which Joy has her heart cath leaving us with more questions than answers....

The Hard Road - Part III

When we left the pediatric cardiology office on Halloween Eve, we were numb and in a state of disbelief at the news of Joy’s decline. Maybe we had been naïve, but putting the occluder in seemed such an “easy fix.” We knew we still had a ways to go health-wise but we thought Joy would be climbing hills instead of mountains.

We had Joshua with us because he had his cardiology appointment as well. I questioned the wisdom of having them both seen together (think emotional AND technical equaling major brain cramp). Because we went over the results of the second opinion from Boston Children’s on Joshua, Bob had decided to attend the appointments. For that, I was ever so grateful and those results are a story for another day. Apparently we needed a distraction because half-way home, Joshua decided to throw up. A lot. I don’t know if the waiting room was hot, he was carsick, or maybe he was upset that we were talking about him.

We went home to wait for the call from Boston to set up an appointment for Joy to be seen by the PH team there. We were told to expect to hear from them early the following week.

When your cell phone rings at 5:00pm on a Friday night and it’s the cardiologist on the line, I learned that “Uh-Oh!” is an appropriate response.

The team had reviewed the echo findings and after talking to Boston, everyone concurred that they should try to remove the occluder. 

Jaw drop.  Huh? 

Yes, the cath doctor thought he could retrieve the occluder as long as it hadn’t grown into the heart.  Obviously there was a short window of time when that would be possible without tearing and damaging the heart tissue. We were three weeks out from the first cath.  By opening the PDA back up, they would be allowing the pressures to re-equalize and the heart would have a pop off valve. 

For Joy, this meant a very shortened life-span and basically being thrown into the same bucket as Joshua: unrepairable and quality of life.

The only way to really know if the echo was correct (there is a margin of error) was to repeat the heart cath and measure the pressures. If they were 80% or above, they would attempt to remove the occluder. If they were below that, the doctors would probably leave it alone. Our doctor told us that he had asked people to take a hard look at their schedules and he would be in touch by Tuesday with a date for Joy to return to the hospital for another cath.  

My own heart returned to my stomach leaving a very sick and unsettled feeling which remained with me most of the weekend.

Monday morning, the phone rang and our amazing cardiologist was on the line, again! He had thought about Joy all weekend and decided that because the cath doctor at our usual hospital was out of town that we should go directly to Boston. In fact, he was wanting Joy to be admitted for observation even before a cath was scheduled. Like that afternoon. That's a heart-stopper. 

Talk about being catapulted into the high-risk category. We had some worst-case scenario discussions and I was to wait for a call from Dr. Marshall in Boston who would let me know what was decided.   

After a flurry of phone calls, by 2:00 pm on Monday, it was decided that we would check into Boston on Tuesday, Nov 6 by 10:00 am and the heart cath would take place on Wednesday, Nov 7.

Alrighty then. I had less than seventeen hours to get some serious ducks in a row. I furiously did laundry, made a menu for 4 days with instructions, cancelled appointments, systematically worked through the schedule making sure everyone got to where they needed to go, and packed some clothes for what I hoped was only going to be a few days. I was ever so grateful for my oldest son, neighbors, friends, and others willing to help out on short notice. 

We planned to be on our way to Boston at 7:00 am on Tuesday.

Part IV: The Boston plan and the cracker story. 

The Hard Road - Part II

It was a lot to take in on October 31, 2012, barely five weeks home from China. 

We had our follow-up appointment with our cardiologist to check on the occluder and talk about how Joy was feeling post-cath.

We had some questions about the medicine she was put on to combat her pulmonary hypertension and the 24/7 oxygen that we were learning to manage. Would we increase? How necessary was the oxygen? Was any of it helping? Because giving medicine every six hours around the clock and keeping an active six year old tethered to oxygen is rugged.

During the appointment, Joy had an echo (ultrasound of the heart) showing elevated pressures in her heart which were unexplained. Basically, pre-cath, Joy's pressures were equal. Yours and mine have about a 30% differential. After the occluder was put in, Joy's pressures went down to about 65% which was a big improvement. The plan was to try to medically manage the residual pressure and hope to lower it with oxygen and medications. Because 65% is still in the moderate to serious range of pulmonary hypertension, we were willing to do anything in the short term that would give Joy a better chance to have a symptom free life. 

The echo on October 31 showed very high pressures perhaps even higher than pre-cath, which if left alone would cause right ventricular heart failure in a very short amount of time. The doctor was very concerned. 

"So, what you are saying is that by plugging her PDA, or closing the hole in her heart, we made it worse?" 

Based on all the measurements in the cath lab before and after they put in the occluder, the spike in pressure was counter to all the data and statistics that pointed to this procedure as a successful way to close a PDA. 

It shouldn't have happened. But it did. And our cardiologist threw himself under the bus a bit because no doctor likes to make their patient worse. 

Once we heard about the echo, we had to talk about what a lifetime of pulmonary vascular resistance (PH) was going to mean for Joy. 

What the hard road might look like. 

I think we listened to the rest but we didn't really "hear" what was said. I pushed the panic down and tried to focus on the details and ask intelligent questions. 

Because the alternative was.....to cry. Hard.

A lifetime of medicine. No pregnancies. Quality of life? Shortened life span.

Being told your child's life would be cut short by heart disease is surreal, especially when you have a daughter who is active, vibrant, and seemingly as healthy as anyone else. Honestly, except for a slight pigeon chest and breathing that is a bit faster than normal, you would never know how "sick" she is. 

In order to deal with the information overload, we needed a plan of action. Because having a plan and moving forward always helps in these situations. 

Our cardiologist was going to call the PH doctors in Boston to set up an appointment as soon as possible. We have the advantage of a cardiologist who trained in Boston and when he calls Boston, he is talking to people who are personal friends and colleagues with whom he worked for many years. We know we are getting the best! 

We left the office in a bit of shock, not quite believing that this precious happy girl in the back seat was destined to suffer with PH for the rest of her life.

Part 3: In which I talk to more doctors from my home phone than I have ever spoken to in my lifetime! 

The Hard Road - Part I

"It's the hard road with Joy, I'm afraid."

His words. 

The doctor. 

Two weeks post-cath. Post repair. 

Definitely not what we were expecting. 

The worst case scenario for Joy.

A lifelong battle against her heart disease. 

Consulting with the Boston doctors. Immediately.  

As my heart dropped to my stomach, was I tempted?

To ask why? Why her? Why us?

A second child? Who will die before they should and suffer in the short term? 

A lesson in living and loving each and every day.

This is what the Lord has asked of us. 

If you showed us an easier way, we would never turn back. 

Because a life with Joy is the only kind of life we want to have.

Too Soon and Too Long - The Meeting

 

I wish you could have been a fly on the wall watching these two check each other out when they met for the first time. I knew when we made arrangements to have our Rosy girl for the weekend that it was too soon for Joy, not wanting to disrupt her bonding and attachment. On the other hand, it was too long for Rosy. Since she left our home in March 2011, she has spent a long weekend with us every month and sometimes more often. This was the longest we had every gone without seeing her, about five weeks. She was asking to come and worried.

  

 This girl ups the energy level in our house about five-fold. No joke!

 She can squat with the best of them.

 A fierce-some four running down the driveway.

Trey has taken on the "bigger" brother role quite seriously. He willingly carries the oxygen and goes where Joy goes. That kid is awesome. Doesn't this picture speak volumes?

My allegiances were clearly divided. I try very hard to give as much attention, love, and structure to Rosy when she is here as her life is usually a little crazy and particularly complicated right now.  Both girls knew I wasn't giving them 100%. We marched onward and did the best we could.

 29 pounds comes in all shapes and sizes. 

Rosy is three and Joy is six! 

Both my precious peanuts.
 

By the end of the weekend, friendships were forming. We came home from church during Sunday school and the little girls had some bonding time. I think they decided to be friends!