Hospital Second Day

After a mostly sleepless night due to random/unsettling buzzing and beepings, we woke up to sun shining inside and out. Hoping to get unhooked from a few things and be a bit more mobile. It is a pain to call the nurse every time duty calls because when ya gotta go, ya gotta GO.

 

We have been skyping with Joshua - down south, from the same orphanage and also a new U.S. citizen. There is nothing cuter AND more heart wrenching than two little boys yakking it up in Chinese from their respective hospital beds. Once they got going it was hard to get a word in edgewise. Thank you, Skype. You deserve a gold medal.

A room with a view? Remind you of the see through bathrooms we encountered in China? They put us in the old infant wing which is why they had transparent doors. It was quiet until the 2 year old with asthma moved in next door. We had our own little kitchen directly across the hall which was very convenient.

 

Mommy's bed. It was a place to get horizontal. 

Ready to be unhooked!

From the monitor and the I.V.

We carefully got dressed around the wires and took off to the playroom. Joshua wore a portable monitoring system that reported to the nursing station. It was light and he didn't seem to mind. The back flow of blood in his IV scared him though.

He and Erik found the X-box.

 

How ironic that a hospital is NOT a place to get some rest. In the Children's Wing there is way too much to do! Wonderful volunteers keep the kids busy with crafts, games, and projects.

There is no social distinction when it comes to children with medical needs. There were people from all walks of life hanging with their kids on the floor. Super sick kids, some recovering, some with mystery illnesses, another subculture I hadn't been exposed to, until now.

I don't think Joshua had ever seen a dryer. He was fascinated and watched long enough for me to run back to the room to grab the camera. I LOVE watching his delight when he discovers something new.

 

Joshua is tolerating the new medications well. 

One more night and we will hopefully head home.

Hospital

Sunday night, Bob and I took Joshua over to the Ronald McDonald House to hopefully make Monday morning less stressful. What an amazing ministry run by mostly volunteers. We were warmly welcomed.

I was most worried about Joshua wanting food or water in the morning. He was a champ and never asked as long as he could play with the IPOD. It was the magic pill.

 

We asked for the limo to take us up to the sixth floor and this is what we got. The sweet guy driving was a definite bonus.

 

We were escorted to our room with a view. Seriously, we can see the ocean, the minor league baseball field, and west to the mountains. Watching the helicopter come and go four plus times a day is interesting.  

 

  
How many different positions can YOU play with an ipod? We got Joshua dressed and hung out in the room for awhile. No one seemed like they were in a hurry which for once reassured me. Less mistakes that way. 

 

We rolled up to the cath lab and hung out in the waiting area for an hour or so. People came and went, introduced themselves, we signed papers, they smiled at Joshua.

 

He played the ipod.

 

I wish I knew what he was thinking sometimes.

 Just like on TV, paddles waiting and ready. Not sure how I felt about that kind of drama. Can you hear our nerves revving up?

The one woman in the operating room came to visit Joshua beforehand and they played on her iphone.  She explained that we had to wait because they were preparing extra things for Joshua's procedure.

 In spite of Joshua's condition, I appreciate that most of the time he is simply an eight year old boy.

 After they asked which of us was least likely to pass out, Bob carried him into the operating room where 10 people were ready and waiting. He reported that Joshua bravely put the mask on, dropped the ipod, and away he went to la la land. 

  

A few hours later we were paged and Dr. D met us in the waiting room to give us the results. Most importantly he told us that Joshua did fine during the procedure. We headed back to the room to wait for a call to go to be with him in recovery. 

After an eternity, we were escorted down to the basement to see him and he was CRYING. The nurses were concerned and asked us if we wanted a translator. I tried to tell them he was just scared because we weren't there when we woke up and sure enough, he calmed right down when he knew we were there. 

He drank lots of water, had a red popsicle, and threw it all up. At least I saw it coming. He was pretty mad because he needed to be immobilized for a few hours to prevent bleeding. 

In my emotionally altered state, the only complaint I have about this hospital is that people are calling my kid "Josh". I tried to explain that he barely knows his name is Joshua, knows no English, most of what we say must sound like gibberish, and they still call him Josh.  One nurse even told the nurse taking her place that we wanted him called Joshua then proceeded to continue to call him Josh. Am I ridiculous or what? 

We rolled back up to the sixth floor and settled into our room on pediatrics. Hoping to get to that playroom soon. 

Joshua spent most of afternoon feeling pretty sore and out of it. Around 4:30 or 5:00, he perked up and looked more like himself. Considering all the changes in his life over the last 5 weeks, the language barrier, and the physical pain, Joshua is a courageous boy.

The Next Step

After meeting with the pediatric cardiologist, we knew our next step would be to schedule Joshua for a heart catheterization.....

in the next few months.

Disappointing news for this momma's heart.

I understand from a "pediologist's" (try saying pediatric cardiologist three times fast!) point of view that, at some level, Joshua is stable. But I want him to feel better, to breathe better, to be able to enjoy life without fear of collapse. I want to know "where we are at" and have a plan.

Oh me of little faith.

Monday, I was preparing to call the "pediologist" office to check on scheduling when my phone rang with great news.

They just "happened" to have a cancellation for Monday, September 26. Alrighty then, two weeks is way less than two months. And there is not ONE SOLITARY THING on my calendar the whole week. Nothing, nada, zippo, zilch.

Thursday we went over to the big city to meet with the cardiologist in the practice who does the catheterizations. He was a little less optimistic and a lot more realistic than Dr. M.

With God all things are possible.

Would you pray that Joshua's heart will be able to function at a level that allows him a better quality of life?

Whether that means surgery or medicine or therapies, it matters not.

We are at peace with the process and the outcome.

Would you pray for safety in the procedure on Monday at 7:00am?

Joshua is at greater than average risk with the catheterization and the anesthesia because of his anatomy and his frailty.

I think Joshua is having irregular heart rhythms that are stressing him out and causing profuse sweating.

Would you pray for answers to his uncomfortableness?

We are at great risk of stressing our support system out. Not really, but it's hard to be humble and ask for help.

Our kids have experienced trauma in their lives. They silently carry around a lot of worry and anxiety.

Would you pray that those at home would feel safe, loved, and confident in our Father's plan?

Our schedule:

Saturday night we hope to skype with a friend who speaks Mandarin. We are hoping to let Joshua know exactly what is going to happen. I know he is very nervous and angry. How does he know we aren't going to go and drop him off somewhere? I can't imagine his confusion.

Sunday evening, drive over to the Ronald McDonald House and check in. We decided to stay near the hospital because of the distance and the language barrier. We would have to get up around 3:30am if we left from home and I couldn't stand the thought of not being able to explain to Joshua why he cannot eat or drink. Food is VERY important right now and something that he has control over.

Monday morning we will wake the patient up at 5:45 am and immediately take him to the hospital for a 6:00 check in. We may take turns sneaking downstairs at 5:30 for some coffee. We can stay with him until he is in the cath-lab and mostly asleep.

The procedure should take two and a half hours. My husband will keep me from going off the deep end. He is very good at that.

We will most likely stay the night on a monitored bed. We are hoping to see several other specialists while we are in the hospital. I will remain with Joshua and Bob will go home Monday night to monitor the heartbeat of the family and then go do that thing called "work".

We are headed for the next step.

May God go before, behind, and around all the people and places, preparing hearts for His will.

I might even let him wear the outfit since he loves it so.

No Walking Needed/ The Joshua Factor

No need to walk across the room.

Seems like, these days, I only need to be in the room.

Our entire church is studying "Just Walk Across the Room" for 4 weeks. The culmination will be in October when instead of church proper on Sunday morning, we will go out and serve our community building relationships and showing the love of Christ with thought, word, and deed.

The small group study helps us think about getting outside our box. Visiting our neighbors. Seeing where they are at. How we can we help them, love them, serve them: a challenge to step out and be the hands and feet of Jesus.

What I wasn't prepared for was the Joshua factor.

I have been wondering for awhile when it might be our turn to give back. We have been at the parenting thing for a few years and 19 kids have crossed our threshold. The time may have arrived.

I did not realize that having Joshua would give us an opportunity to share our faith and our hope.

But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect... 1Peter 3:15

I wrote for Phoebe's post:

Joshua was the only adoption that we "went after" in the words of the social worker. In fact, I always mocked those people who dreamily said when they saw the picture of a certain child, they just "knew" he/she was theirs. I thought that a bit sappy until......it happened to me. Having R (a foster child) for a year did pique my interest in the Asian culture as she is biracial Indonesian. I NEVER wanted to adopt a little girl from China when that craze went through years ago. It did not appeal to me in the least. Other than that, there is no particular reason we adopted Joshua other than the strong feeling of knowing that this adoption path was the one of least resistance.

How do I help people understand that my life is hard, very hard, but to turn my back on what God has laid out for me would be harder. We have more bad days than good. No glamour life here but the eternal rewards and the daily joy is worth it all. Hands down.

Every day God seems to give us another person to encourage, a chance to tell our story, to bridge the "I could never do that" gap.

For example:

Yesterday, we went to the big city for a pre-op appointment and a tour of the Children's Hospital. (* More on that tomorrow. I want to give you an update and specific prayer requests.) Afterwards, Bob headed back to work and I took the kids out to lunch. Yes, us and the seniors at the buffet. My kids LOVE buffets.
What a combo? Who do you suppose discovered this?
A happy boy!
Jello with fingers, those silly slippery little things.We met the sweetest girl working at the Hometown Buffet. Her name is Zulma. I heard her say "God Bless You" to an extremely cranky lady. This lady wasn't having a good day. She insulted her husband, was demanding, and just plain cranky. I am hoping it wasn't because we sat down next to them. Probably not, because they stayed quite awhile hanging out after they were done eating.
Anyway, this girl blessed me. She greeted every table with a smile and a hello. Sure, her English wasn't perfect but it didn't stop her from being a light to each and every person as she worked the room. And did she ever work hard. Done with that plate? Whisked away. Halfway through our meal, I realized she was doing her job as unto the Lord.
She admired the kids and before you know it, her story spilled out. Her husband was one of nine. Her father was one of nine. She, herself, wanted four kids. But she had a miscarriage last January so she and her husband are still waiting for the blessing of children. Zulma grew up in Columbia and has only been here for 3 years. She started in Minnesota but the cold was too much so she landed in Portland somehow and she likes it much better.

I asked if I could take her picture. She thought I wanted her to take a picture of all of us. I told her no, she had blessed us and I wanted HER picture.

I am grateful for the chance to share our story with the doctors, nurses, office managers, hospital staff, grocery store clerks, and waitresses: a message of acceptance and love.

But today I realized I have much to learn from people like Zulma.

Humble yourself, therefore, under God's mighty hand and he will lift you up in due time. 1 Peter 5:6

After such a sweet encounter, someone topped off their meal with quite a creation.
The master creator.Double sweetness!
I truly didn't see it coming.

My life is changed forever.

Another One Hits Double Digits

Cora has a smile that lights up a room and her giggle is beyond infectious.
Cora got to pick out her own cake. Store-bought. Sigh. Cora has been such a wonderful sport about her birthday. One of these years she will get a hoop-lah of a party to make up for two adoptions ON or near her big day.
What do I do now?
Can't you just hear her laughing?
After the delicious gold cake with a choice of chocolate or vanilla ice cream, the boys kind of went wild with the chopsticks.


Not to be left out, our resident chopstick expert played along.
Happy birthday to our dear Cora.

May your next decade be a time of God love found and dreams fulfilled.

A Marvy Mom

What a privilege.

Phoebe over at Running My Mouth featured little old me as her Marvy Mom Monday.

She is a super cool mom herself and one of many growing up in a family a lot like ours. I met her Mom and was she ever an inspiration to me just in the 20 minute conversation we had.

So, if you ever wanted to know what I might have thought about this crazy life 25 years ago..... head on over the Phoebe's blog and check it out. She is a good interviewer and an even better writer. She made me look good. (Blush).

Thank you, Phoebe, for letting me tell a little bit of our story.

Be blessed.

Five on Five

Update on Joshua

Five consecutive days.

Five doctor/hospital lab visits.

One very cooperative young man.

For the most part.

Wednesday, we headed north to the pediatrician and although I had called ahead to explain Joshua's needs before we left for China, the doctor was still in shock. After about 10 minutes he made it clear that one appointment wouldn't be enough. Then two EKGs, two x-rays, and two hours later, we walked out with lab and x-ray orders in addition to our "goody bag" to check for parasites. That was a new one for me, another fun job to check off my parenting list.

Thursday we headed to the hospital for a specialized back x-ray and a ton of blood work. A ton means 6 vials. I was halfway through filling out extra forms before I realized what they were for, those not so nice diseases. I often have to put N/A or Unknown and that makes me sad for my kids who will never know their history.

The bloodwork was as expected. The first arm gave 3 vials. And Joshua was quite unhappy. But nothing compared to what he thought when they had to go to the second arm for the rest. HE WAS MAD. I apologized to everyone in the waiting room, "It really wasn't as bad as it sounded."

Friday, we headed back to the pediatrician for a followup and to develop a plan. Here is what we know so far: Joshua does have scoliosis. It may be a part of his rib cage expansion because of his enlarged heart. He will need to see MANY specialists.
* Orthopedist
* Geneticist
* Endocrinologist
* Opthamologist
* Audiologist
* Developmental Evaluation
* Possible testing through the local school system.
We didn't see all that coming because we were focusing on the heart issues. We got the right guy for the job though because this pediatrician is GREAT. He is willing to coordinate much of the care and will try to schedule a lot of the specialists when Joshua is hospitalized.

Joshua also had two of his five immunizations. I have a rule that I will only allow my kids to get a maximum of two shots. The doctor and I came to an understanding, I think.

Monday, we headed an hour south to the pediatric dentist for an evaluation. Although the schedule was a little grueling, I was happy to be gathering so much information. Poor Joshua has 10 things to fix and is a candidate for a couple hours in the hospital. I am not sure they understood that we could not go to the local hospital and make that happen.

Tuesday, we were back up north to the pediatric cardiologist's satellite office for an evaluation and an echo, an ultrasound of the heart. Good news and bad news. There were no surprises and Joshua's condition is what the cardiologist surmised by the information we had gotten from China.

So we had the talk.

About quality of life.

That is where we are.

If God chooses otherwise, we will witness a miracle.

I told the Dr. M that there is surely a reason Joshua has survived this long.

He said Darwinism.

I made it clear I wasn't that kind of believer.

We will head to the hospital for a 3-5 day stay in the near future for a heart catheterization and possible MRI. We will try to see as many specialists as possible while we are there thus avoiding a billion other appointments. We will also try medication and get it regulated before we come home.

My single goal right now is to see Joshua breathing better. His respiratory pattern hurts my mother's heart. It is hard to watch your child work so hard to breathe.

We have the BEST cardiologist. He explains everything and is incredibly patient with our questions.

For your viewing pleasure. It has been quite entertaining to tell people that he speaks no English. They don't know quite what to say. Fortunately he is very cooperative and with my poor Chinese and a little sign language, we muddle through.
Why does every doctor want to know the names and ages of siblings? I have spent considerable time on that zebra bench.Managed a cleaning. Yeah, Joshua.There you have it.

An update on our boy.

Only God knows what the future holds.

And I'm okay with that.