Samuel is still in the hospital, but making progress. He is having more awake hours and even some blocks of time when he is more like his old self. On Thursday he had a 3-hour "upper GI study with small bowel follow through" to rule out any physical causes of his lack of appetite. I think everything looks okay, but I haven't heard the final report. Samuel is seriously malnourished and it is affecting his body's ability to heal, grow, and feel well. His new "job" is to consume a minimum of 1500 calories each day. He has started taking some medication that is intended to stimulate his appetite. His incredibly caring doctor brought him 2 boxes of Pop-Tarts to tempt him with some high calorie food!
The docs continue to monitor the fluid collection via ultrasound and x-rays. The pocket of fluid is much smaller, but there is still more that needs to be drained. None of the cultures has grown any bacteria, so for lack of a better explanation, they believe it is lymphatic fluid and are calling it a "non-infectious intraabdominal fluid collection". At one point, the plan was to remove the drain on Friday, but it is still in there.
Samuel had a torturous time with restless legs last night. He finally fell asleep at 2:00 in the morning with the help of some drugs. I was awake until 3:00 waiting for lab results and keeping an eye on him. We were roused at 6 a.m. this morning to go down to dialysis. Ughh!
Our family is spread far and wide this weekend. Esther left yesterday with some dear friends to spend a few days at their beach house in southern New Jersey. Tom left early this morning with Katie, Grace, Lydia, and the camper for the Massachusetts Sheep and Wool Festival. Grace and her dog, Click, are competing in their first-ever sheep dog trial. Grace has a very special relationship with this dog and has done an amazing job of training him in both herding and agility. I'm sad to be missing this important event in her life. We had also made plans to meet up with Katie's donor, Kelly, at the festival. I'm sorry to be missing that as well! Faithful Hannah is home manning the fort and feeding the animals. Samuel and I had a nice visit with her here at the hospital this afternoon.
Well, the eyelids are very heavy so I'll sign off. Thanks for your continued prayers!
News and musings...both notable and mundane
A KIDNEY IS A BEAUTIFUL THING TO SHARE... Have you considered being an organ donor?
Tom's kidney, though no longer functioning, still resides in Samuel
Interested in learning more about being a living kidney donor?...Call the toll-free donor hotline at Fletcher Allen Health Care... 877-467-5102
For more information about living donor paired exchange, visit the National Kidney Registry's website.
Would you consider sharing the gift of life with others?... Register to be a deceased organ donor at DonateLifeVT.org.
For more information about living donor paired exchange, visit the National Kidney Registry's website.
Would you consider sharing the gift of life with others?... Register to be a deceased organ donor at DonateLifeVT.org.
THE SMITH CHILDREN AND THEIR VERY SPECIAL DONORS
Samuel and his sister, Hannah
Hannah donated one of her kidneys to someone on behalf of Samuel as part of the world's largest paired exchange ever performed at a single institution. The paired exchange, which took place at the Methodist Specialty & Transplant Hospital in San Antonio, TX, included 16 pairs of donors and recipients. Samuel received a kidney from someone else in the chain who was donating to him on behalf of a loved one. All 32 surgeries took place on November 11-13, 2010.
Esther and her 1st cousin, Katherine
Katherine came all the way from California to share a perfect match with Esther!... 9/16/09
Katie and a new friend, Kelly
Without knowing our family beforehand, Kelly (on right) heard of the need and offered to donate to Katie... 4/16/08
Samuel and his dad, Tom
Samuel's tragic first transplant... 10/31/07
LINKS
- 12/23/10 "Historic Kidney Swap Gives VT Teen His Life Back" WCAX's story about our kidney adventure
- 11/22/10 "A Chain of Miracles" Commons News Story
- 11/12/10 "Extraordinary S.A. Kidney Operations Make History" Pre-op Interview with Wendy Rigby of KENS5
- 11/12/10 "VT Family Part of Kidney Transplant Chain" WCAX Airing of Pre-op Interview
- 11/11/10 "Giving, Giving, Giving Gifts of Life" San Antonio Express' article about the exchange
- 11/10/10 "Kidney Chains Link Strangers" Katie Couric's story about the NKR
- Send an email to a patient at Fletcher Allen Health Care
- Our family's website
- October 2007 Kidney Update Letter
- Watch a kidney transplant
ABOUT US
For those of you who don't already know us, we are the Smith Family...Tom, Nancy, Katie, Hannah, Grace, Samuel, Esther, and Lydia. We live on a small farm in Charlotte, Vermont.
I am Nancy, the author of this blog and the mother of these great kids. I started this blog in 2007 as a way to share our kidney adventure with family and friends.
Three of our six children were diagnosed with Familial Juvenile Nephronophthisis in the spring of 2007. FJN is a rare autosomal recessive pediatric kidney disease. My 3 children with FJN also have retinitis pigmentosa. The combination of this specific kidney disease and RP is called Senior-Loken syndrome.
The members of our family's "kidney club" are:
* Katie, age 23
- Diagnosed April '07 with 25% kidney function;
- Began dialysis July '07 with 12% function;
- Both native kidneys removed April 14, 2008;
- Transplanted 2 days later with great success on April 16, 2008 after 9 months of dialysis;
- Katie's living donor is a young woman named Kelly, who was once a stranger, but who now has become a dear friend;
- The first 18 months post-transplant were very difficult for Katie as she suffered from some nasty medication side effects;
- In May 2010, Katie completed her B.S. in Business at Vermont Technical College.
- In December 2010, Katie started a full-time job as a customer service rep at a local bank!
* Samuel, age 17
- The first of our children to be diagnosed in March '07 with 5-10% kidney function;
- Began dialysis 2 days after being diagnosed;
- Left native kidney removed September '07;
- Transplanted with complications Oct. 31, 2007;
- Kidney from Dad was irreparably damaged after Samuel had an anaphylatic reaction to an immuno- suppressant drug administered during the surgery;
- Multiple doses of epinephrine used to resuscitate Samuel ultimately raised his blood pressure too high, causing the iliac artery to pull away from the newly attached renal artery which then resulted in a traumatic bleeding episode and more hours of surgery to repair the damage;
- New kidney from Dad is irreparably damaged after suffering "multiple insults" during the transplant surgery;
- Renal biopsy on December 6, 2007 marks the beginning of a 2 1/2 month hospitalization;
- Right native kidney removed December 7, 2007;
- Laparoscopic nephrectomy is converted to an open nephrectomy after discovery of significant bleeding from previous day's biopsy, Samuel ends up with a large midline incision;
- Spent Christmas & New Year's in the ICU;
- Transplanted kidney starts working enough to be off dialysis at the end of December, though Samuel is still hospitalized;
- Exploratory laparotomy (abdominal surgery) performed January 31, 2008 in hopes of discovering why Samuel is not getting well;
- Finally discharged February 18, 2008 after 75 days in the hospital;
- Restarted dialysis treatments May 13, 2008
- Hospitalized again starting May 18th for 11 days to drain a collection of fluid in his right renal fossa and to address his malnutrition;
- 200th dialysis session November 18, 2008
- 6-inch incisional hernia repair December '08;
- 300th dialysis session July 8, 2009;
- Listed with the National Kidney Registry March 2010;
- "The call" we've been waiting for came on October 15, 2010... possibility of a transplant through a paired exchange;
- 500th dialysis session October 18, 2010;
- Quick trip to San Antonio, TX to meet the team at the Texas Transplant Institute October 23-26, 2010;
- 3rd anniversary of Samuel's first unsuccessful transplant;
- November 5, 2010, traveled back to Texas to prepare for a transplant as part of the largest paired exchange ever to take place at a single institution...16 pairs of donors and recipients!
- November 12, 2010 Samuel received a new kidney!
* Esther, age 14
- Diagnosed April '07 with 50% kidney function;
- 40% function a year later in April '08;
- 30% in July '08;
- 28% in October '08;
- 24% in November '08;
- Had a surgical procedure to create a fistula for future dialysis use December '08;
- 19% function in February '09;
- Esther's name is added to the organ bank's waiting list for a kidney, April '09;
- 12% function in June '09;
- Started dialysis June 24, 2009;
- Bilateral nephrectomy and surprise appendectomy September 14, 2009;
- Short 2 1/2 month dialysis career ends on September 16, 2009 with a transplant!!
- Donor is Katherine, Esther's first cousin once removed. Amazingly, these two young ladies are a perfect match, both sharing the exact same 6 antigens! A priceless gift made even more special. Thank you, Katherine!
- Esther was hospitalized for the month of January and a week in March 2010 before she was diagnosed with Myfortic toxicity.
I am Nancy, the author of this blog and the mother of these great kids. I started this blog in 2007 as a way to share our kidney adventure with family and friends.
Three of our six children were diagnosed with Familial Juvenile Nephronophthisis in the spring of 2007. FJN is a rare autosomal recessive pediatric kidney disease. My 3 children with FJN also have retinitis pigmentosa. The combination of this specific kidney disease and RP is called Senior-Loken syndrome.
The members of our family's "kidney club" are:
* Katie, age 23
- Diagnosed April '07 with 25% kidney function;
- Began dialysis July '07 with 12% function;
- Both native kidneys removed April 14, 2008;
- Transplanted 2 days later with great success on April 16, 2008 after 9 months of dialysis;
- Katie's living donor is a young woman named Kelly, who was once a stranger, but who now has become a dear friend;
- The first 18 months post-transplant were very difficult for Katie as she suffered from some nasty medication side effects;
- In May 2010, Katie completed her B.S. in Business at Vermont Technical College.
- In December 2010, Katie started a full-time job as a customer service rep at a local bank!
* Samuel, age 17
- The first of our children to be diagnosed in March '07 with 5-10% kidney function;
- Began dialysis 2 days after being diagnosed;
- Left native kidney removed September '07;
- Transplanted with complications Oct. 31, 2007;
- Kidney from Dad was irreparably damaged after Samuel had an anaphylatic reaction to an immuno- suppressant drug administered during the surgery;
- Multiple doses of epinephrine used to resuscitate Samuel ultimately raised his blood pressure too high, causing the iliac artery to pull away from the newly attached renal artery which then resulted in a traumatic bleeding episode and more hours of surgery to repair the damage;
- New kidney from Dad is irreparably damaged after suffering "multiple insults" during the transplant surgery;
- Renal biopsy on December 6, 2007 marks the beginning of a 2 1/2 month hospitalization;
- Right native kidney removed December 7, 2007;
- Laparoscopic nephrectomy is converted to an open nephrectomy after discovery of significant bleeding from previous day's biopsy, Samuel ends up with a large midline incision;
- Spent Christmas & New Year's in the ICU;
- Transplanted kidney starts working enough to be off dialysis at the end of December, though Samuel is still hospitalized;
- Exploratory laparotomy (abdominal surgery) performed January 31, 2008 in hopes of discovering why Samuel is not getting well;
- Finally discharged February 18, 2008 after 75 days in the hospital;
- Restarted dialysis treatments May 13, 2008
- Hospitalized again starting May 18th for 11 days to drain a collection of fluid in his right renal fossa and to address his malnutrition;
- 200th dialysis session November 18, 2008
- 6-inch incisional hernia repair December '08;
- 300th dialysis session July 8, 2009;
- Listed with the National Kidney Registry March 2010;
- "The call" we've been waiting for came on October 15, 2010... possibility of a transplant through a paired exchange;
- 500th dialysis session October 18, 2010;
- Quick trip to San Antonio, TX to meet the team at the Texas Transplant Institute October 23-26, 2010;
- 3rd anniversary of Samuel's first unsuccessful transplant;
- November 5, 2010, traveled back to Texas to prepare for a transplant as part of the largest paired exchange ever to take place at a single institution...16 pairs of donors and recipients!
- November 12, 2010 Samuel received a new kidney!
* Esther, age 14
- Diagnosed April '07 with 50% kidney function;
- 40% function a year later in April '08;
- 30% in July '08;
- 28% in October '08;
- 24% in November '08;
- Had a surgical procedure to create a fistula for future dialysis use December '08;
- 19% function in February '09;
- Esther's name is added to the organ bank's waiting list for a kidney, April '09;
- 12% function in June '09;
- Started dialysis June 24, 2009;
- Bilateral nephrectomy and surprise appendectomy September 14, 2009;
- Short 2 1/2 month dialysis career ends on September 16, 2009 with a transplant!!
- Donor is Katherine, Esther's first cousin once removed. Amazingly, these two young ladies are a perfect match, both sharing the exact same 6 antigens! A priceless gift made even more special. Thank you, Katherine!
- Esther was hospitalized for the month of January and a week in March 2010 before she was diagnosed with Myfortic toxicity.
Posts
OUR THANKFUL LIST
- Esther's donor, Katherine, for her life-changing gift of a kidney!
- Katie's donor, Kelly, for her precious gift of a kidney!
- All the amazingly generous, caring, selfless people who have offered to donate, but who were unable to for various reasons. Thank you all for your willingness to give such an incredible gift!
- God's faithfulness to our family
- The many, many people all over the world who are praying for us
- Dr. Guillot, our awesome nephrologist
- Our great team of caring dialysis nurses who, time and again, go above and beyond
- Joanne, our dear friend who has faithfully disseminated our prayer requests
- Uncle Warren, our hero - how would we manage without you??
- That God preserved Samuel's life during the complications of his transplant
- The many, many delicious meals that have been made for us - what a blessing it has been!
- Our family, church family, and homeschooling community for their love, prayers, food, and financial gifts. We are so grateful!
"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus."
Philippians 4:6,7
Philippians 4:6,7
1 comment:
Nancy,
We are thinking of Samuel, you, and all of the Smiths. We send you many warm wishes from Ohio. You are a model of courage, strength, and love.
Love,
Hilary & Ryan
Post a Comment