Tuesday, August 16, 2016

In Gratitude for Joseph's Heart

Dear Family and Friends,

What a blessing it is to be home...  seeing Joseph grin ear-to-ear as we drove up the driveway, sleeping in our own beds, getting back into a "normal" routine and watching Damien back in his element, not having to stop Damien from crawling (on the hospital floors), eating a delicious dinner (thanks to Nick's students), and just knowing that we're on the other side not only of this heart surgery, but at the end of this thirteenth surgery - the last that is scheduled.  We are so thankful!!!

We did not expect (but are so thankful) that Joseph would be discharged this quickly.  The surgery went incredibly well, but even with that knowledge, the chest tube drainage from this procedure can vary greatly.  On Saturday, the docs and nurses told us that Joseph's drainage was beginning to slow down... it looked like he was going to fall on shorter end of the spectrum.  They pulled the tubes on Sunday, did a chest x-ray, blood work, EKG, and we waited to hear whether all of the tests would look good enough for Joseph to go home.  They did!  The only thing we are watching is Joseph's heart rhythm.  It is still in an abnormal pattern, but he seems to be tolerating that pattern just fine, so his cardiologist will be able to monitor at follow up appointments.

Please continue to pray for Joseph's recovery and pain management, for freedom from infection, and especially for the many kiddos that are still at Mott with their families.  In particular, please pray for Ethan, a little boy who suffered a brain injury.  The doctors estimated that he would be in the hospital recovering for another nine months and are uncertain what functions he will regain.  Your prayers were a source of great strength and grace for our family... we cannot thank each of you enough.

With all our love and gratitude,
Nick, Rachel, Joseph, and Damien

Here are some photos to give you a glimpse into our last 12 days:

Just before surgery.. Brave little JoJo!
Resting and healing

Exploring... Joseph decided to knock on the door of the "Team Room" - the doctors let him have a look around :)
Riding around and feeling better

And finally, here are the words we prayed and reflected on often over the course of Joseph's surgery  -

"Your child is first of all God's child; your love for your little son is nothing, absolutely nothing at all, beside God's love for him.

When you watch him strutting round, showing off, troubling you, when you look at him in his sweetest moments and are moved to tenderness, when you see him excelling in games and lessons and are proud of him, you are not alone, far from it; God is watching him with the intent, absorbed love of a father for his only son.

When he is sick and you stand by the bedside shaken with fear, when he sleeps and you lean over him held by the amazement of seeing this little boy who has your life, God is there too; indeed all this love of yours is only God's love which you sense vaguely. He, the true father, is there; He is around and above and below the child; He is in his heart. You only love at all because God loves infinitely more."

- Caryll Houselander, The Reed of God



Monday, August 15, 2016

Home

Dear Family and Friends,
We are home!  Joseph was discharged from the hospital in the late afternoon. We will be sharing more details tomorrow.

In gratitude,
Nick and Rachel

Sunday, August 14, 2016

No Tubes

Dear Family and Friends,

We are excited to share that Joseph had his final two chest tubes removed today. He now is only checked for vitals and his pain medication is decreasing each day. If all goes well tomorrow with his lab results, chest x-ray, and echo, we may be discharged tomorrow afternoon. We will keep everyone posted!

Please pray for -

- Protection against infection
- A seamless transition back home for both boys

In gratitude,

Nick and Rachel

Wednesday, August 10, 2016

One Less Tube

Dear Family and Friends,

Earlier today Joseph had his central line removed from his neck. He now only has his chest tubes left. Generally the tubes will remain in his chest cavity until there is no more drainage. The heart will continue to produce this drainage for another three to seven days. There really is no way to predict where Joseph will be on the spectrum. Once they are out though we can go home!

As for prayers, please continue to pray for -

- Protection against infection
- The drainage in his chest to stop sooner rather than later
- His desire for food and drink to increase more and more
- Damien as he continues to adapt to our ever-changing hospital routine

St. Joseph, pray for us.
St. Francis, pray for us.

In gratitude,
Nick and Rachel

Monday, August 8, 2016

A Good Day

Dear Family and Friends,


We had our first glimpse of the little boy we brought into the hospital on Thursday morning. Though there are no guarantees day to day on how Joseph will do... we were grateful for a good day today.


Here are some highlights -


- He ate and drank the most post surgery today
- He requested to take several walks today using his walker
- During a music therapy session with other pediatric patients Joseph got to play drums and shake a morocco


Please continue to pray for Joseph's overall well being, for protection against infection, for his continued desire to eat, and for his hospital anxiety to remain low.


St. Joseph, pray for us.
St. Francis, pray for us.


In gratitude,
Nick and Rachel

Saturday, August 6, 2016

One Tube At A Time

Dear Family and Friends,


We are grateful to report that Joseph now has two tubes less than yesterday! Each day brings more alertness from Joseph and in turn more relief for Rachel and I as he progresses. We tell him each day that he has to be tube free before we can go home.


In addition to Joseph we also received a couple of good surprises -


- A room at the Ronald McDonald across the street for the remainder of the time which will help tremendously in caring for Damien.


- A surprise visit from Sr. Mary Andre who is staying in Ann Arbor for the summer before she heads back to Washington D.C.


For prayers, please continue to pray for -


- Protection against infection.
- Adequate rest for  Joseph as he recovers.
- The ability to have his pacer wires and chest tubes taken out sooner rather than later.


In gratitude for all God's blessings,
Nick and Rachel

Friday, August 5, 2016

Post-Op Update

Dear Family and Friends,
We made it through the first post-op day!  Joseph had some great stretches of restfulness throughout the day.  For the brief periods when he was alert, Joseph desperately tried to read his books, even with his eyes closed :-)  His heart function looks good, and we are beyond thankful for that!!  The doctors are continuing to monitor Joseph's blood pressure (which has dropped low when he's sleeping) and the output from his chest tubes (this time around, he has three).  Please keep praying for Joseph!
St. Joseph, pray for us.
St. Francis, pray for us.
In gratitude,
Rachel and Nick