Happy New Years!

Seems like it was just Christmas and now it is New Year's Eve already!

We are almost 3 weeks out from the hernia repair and Samuel has turned a corner in his recovery. His appetite is back and he is not falling asleep on the couch as often. The incision is healing well and the Dermabond (tissue adhesive) that was used to glue the outer layer of skin together is beginning to flake off. The last 2 sets of blood cultures drawn just before Christmas never grew anything (PTL!), so the 1000 mg of Vancomycin that he has been getting intravenously with each dialysis session has effectively done its job. All in all, things are settling down nicely and we are excited to be celebrating the new year at home with some dear friends.

On a sad note, today is the funeral for my cousin's wife Hope Severance. She died on December 28th from cancer. She will be greatly missed! Please continue to pray for her family.

Merry Christmas to All!

It looks like we've got our Christmas miracle! Samuel's cultures that were drawn on Monday have not yet grown anything!! That means he didn't have to have his catheter pulled today after dialysis. What a relief! Thank you, Lord!

This Christmas is even more special for us as we remember how difficult it was to have Samuel in the ICU at this time last year. We are grateful that we can all be together this year.

While we are thankful for so many blessings, our hearts are also heavy for my cousin's family. His wife, Hope, is in the hospital with cancer and is not expected to live much longer. They have three children ages 19, 11, and 9. Please pray for Eric, Justin, Emelie, and Nathan. It is a heartbreaking situation.

We would like to wish each of you a most blessed Christmas. May you be surrounded by those you love, may you remember the reason for the season, and may the joy of His coming touch your life and bring peace to your heart.

With love,
Tom, Nancy, Katie, Hannah, Grace, Samuel, Esther, and Lydia

Line Infection Update

Samuel had blood cultures drawn for the third time today. At the moment, it appears that the bacteria may only be in the arterial line of his catheter. If anything grows in the next 48 hours from the cultures drawn today, Samuel's catheter will be pulled on Wednesday after dialysis. If nothing grows, the catheter will stay. Either way, antibiotic treatment will continue for one month.

We were planning to activate Samuel on the organ donor list over the month-long Christmas break in hopes that a kidney might become available for him. Unfortunately, the fact that he has this infection means that this plan is no longer an option. He will remain on the donor list as "unavailable" and continue to accrue time.

In the meantime, Samuel has made the difficult decision to get a fistula. Up until now, he has been violently opposed to any such suggestion. Thankfully, his reason and logic have overcome his aversion. The surgery is scheduled for January 5th. Again, it will take several weeks before the new fistula could be used, but once it is up and running and the dialysis catheter is removed, the chance of an infection interfering with a future transplant will decrease significantly.

Happy Birthday, Esther!!

Today is Esther's 13th birthday! How thankful we are to have her as part of our family! We love you, Esther!

Here is my sweet, brave girl on Monday when she was waiting to go to the operating room.



And here she is on Tuesday with her favorite younger sister, Lydia.



Esther's wrist is still quite sore, but it seems to be healing well. She is under doctor's orders to baby her left arm for a few weeks and so has been excused from loading the woodbox, carrying heavy loads, and other such activities that might put a strain on her arm and endanger the development of the fistula.

Regarding Samuel's recovery....we are, as usual, having to deal with complications. It seems he has a blood infection. His ever-attentive doctor ordered blood cultures on Thursday after Samuel's temperature was a bit elevated. We got a call this morning saying that one of the three cultures was growing a Gram-positive bacteria. We relunctantly abandoned our birthday plans for Esther and headed up to the hospital where Samuel received a whopping dose of two different antibiotics through his catheter.

The blood cultures (and antibiotics) will be repeated again tomorrow in dialysis. A course of action will be determined once we have a little more information. It is very important to get rid of the infection before it has an opportunity to settle anywhere else in Samuel's body. Our prayer is that the infection is localized in only one of the catheter's two lumens and that the antibiotics will be able to clear it out. Unfortunately, grim reality and past experience leave us with little hope that the catheter can be salvaged.

The bad thing about removing a catheter is the discomfort and inconvenience of having another one put in. With Christmas on Thurday, the requirement of negative blood cultures before a new catheter can be placed, and a limitation on how long Samuel can go without dialysis, the timing of putting in a new catheter will be tricky.

My coping mechanism of trying to find something good in every situtation leads me to be thankful that we now have a likely explanation for Samuel's slow recovery. His surgery was a week ago today and I can finally say that he has actually eaten something more than half a slice of toast.

Esther has so graciously and selflessly given up her birthday plans today as I dealt with Samuel's issues. I feel badly for her, but am also very proud of her mature response! By this evening, we were in the midst of a blustery snowstorm so ended up cancelling our plans for a birthday dinner out at a restaurant. Instead, we have nestled in and are having a Pride and Prejudice movie marathon - all 5 hours of the A&E production. It is one of Esther's favorite movies.

Tuesday's Patient Report

Esther's surgery yesterday was a piece of cake. She did great! The artery that the vein was connected to is unusually small so the vascular surgeon is not sure if it will be able to do the job. We'll just have to wait and see.

Meanwhile, Samuel is having a slow recovery. He is moving very slowly, battling nausea, and hasn't eaten anything since Saturday. He is hurting, but is choosing not to take as much pain medication as he could. The car ride and the time at the hospital for dialysis took a lot out of him today.

Please keep praying!

All is well!

Samuel is home and doing well! He is moving slowly and begging us not to make him laugh. What a relief to have him back!

Let the healing begin!

Photos from Thursday and Friday

Now that I'm back at home with a faster internet connection, I thought I would post a couple photos....

This is the group of young men who visited with Samuel in dialysis on Thursday. They had a great time playing Risk. Thanks for coming, guys!




This second photo was taken the next morning while we were in pre-op with Samuel. He is sporting a nifty thermal hat designed to keep one's head warm in the cold operating room. He put it on and was being goofy.


We had had some snow and ice overnight and things at the hospital were running late as a result. Tom, Samuel, and I played Skip-Bo to pass the time. Samuel was happy and relaxed during the 3-hour wait. When it finally came time to go to the OR, I suited up in a special outfit and walked alongside as they wheeled him down. He had picked up an issue of Reader's Digest in the waiting room and was reading me jokes from it as we went down the hall. When we got into the operating room, he had me read jokes to him for a few minutes while they got him arranged on the table. They started administering the propofol to put him to sleep and at the last second before he was out, he said cheerily, "Bye, Mom!"

Three hours later in the recovery room, I sat with a very different young man, who was focusing all his energy into staying relaxed in the midst of great pain.

Let's all remember the happy, smiling Samuel and pray that he is with us again soon.

Surgery Report

As usual, things didn’t quite go as expected. A small incision to repair one hernia turned into a 6 or 7 inch incision to repair multiple hernias all along Samuel’s old midline incision. This is now the third time in the last 12 months that his abdomen has been cut open in the same place. The surgeon used a 7 x 15 cm piece of mesh to bridge the gaps in Samuel’s fascia. This polypropylene monofilament mesh material, called Atrium C-QUR Mesh, will provide the reinforcement needed to keep his insides where they belong. The mesh has a coating of bioabsorbable fish oil to promote healing. At my request, Dr. DiCarlo kindly saved us a scrap so that we could see what is now inside of Samuel. A drain was also placed in Samuel’s abdomen to keep fluid from collecting under the skin.

A bigger incision means more pain and a longer recovery time. Instead of coming home today as originally planned, Samuel will be staying in the hospital a little longer – hopefully only one more night. Pain management was a challenge this morning, but by this afternoon he was much more comfortable even though he was taken off the narcotic IV pain meds. He ate well this afternoon and was able to get up and walk around a few times.

This evening is a different story. He is very nauseous and not able to eat. Sleeping and throwing up have been his only activities since about 5:00 this evening.

I’m heading home now and leaving Tom to manage things here with Samuel. Hopefully, it will be a quiet night for both of them.

Samuel to Have Surgery Tomorrow

Okay, since we had our fun on the blog yesterday, we can now get back to the unpleasant stuff.....

Samuel is having hernia repair surgery tomorrow. He has an orange-sized hernia just above his belly button were things didn’t heal properly along his midline incision. The problem is attributed to having had that midline incision cut open two times last winter, having been malnourished in the months following the second surgery, and having been on a certain immune-suppressant drug which inhibits healing.

We are expecting (and praying) that it will be an uneventful surgery with a short one-night stay in the hospital. If everything goes as it should, Samuel will have the surgery on Friday morning, spend the night on the pediatric floor, dialyze on Saturday as usual, and then come home. Tom will be spending the night with Samuel for some quality male bonding time.

Please pray for Dr. DiCarlo, the transplant surgeon, who will be doing the repair work. The poor man has had too many bad experiences while operating on Samuel. For both their sakes, we’d like things to go well this time around. We are not afraid to place Samuel in Dr. DiCarlo’s capable hands.

The next item for prayer is Esther. At her appointment with the pediatric nephrologist in November, Esther’s creatinine was 3.50. That translates into a kidney function of 24%. That is down from 28% the month before.

Esther is having her fistula surgery this coming Monday, the 15th. It is a 1 ½ to 2 hour procedure performed by a vascular surgeon. She’ll be in and out the same day. It usually takes about 3 months before a fistula is ready to be used for dialysis. We are still hopeful that a transplant can be arranged before Esther needs to begin dialysis. We will all be very thankful if she never has to use her new fistula!

Well, we’re off to a museum this morning with some homeschooling friends. It is right next door to the hospital, so Samuel and I will walk over when it is time for his dialysis. Esther and Lydia will stay to make Egyptian jewelry with the group. A friend or two (boys who aren’t into Egyptian jewelry) may join Samuel in dialysis for some fun and games. It sure does help the time pass quickly when we have visitors!

Smith Family on Stage

I promised myself a while ago that I would post something fun before I shared any more discouraging kidney news. It is my new strategy to make the blog less odious to me in hopes that I won’t avoid it as I am now wont to do.

So here is the best I could do at the moment. It is a video clip from our homeschooling program that meets on Mondays. Each week, one family presents something during the opening program. Our turn was back on November 3rd. You’ll be able to see how well Samuel is doing. At the time of our presentation, we had only been playing the tin whistle for 3 weeks. That is my excuse for choking! :)

After you’ve had a chance to savor the Smiths doing some normal, fun stuff, I’ll come back and post the discouraging news that you’re used to reading here. But beware, you may have to get used to reading more boring normal stuff because good things are ahead for us. I’m sure of it!!

One Year Anniversary

Today marks one year since Samuel had his kidney transplant. Someday I should probably explain in more detail what took place, but really I would prefer to forget the whole thing. When it is all said and done, I just have to thank God that He spared Samuel’s life twice that day.

I have received many requests to keep the blog going and I will try to do that. I have to confess that it is hard for me to come back to the blog….so many bad memories.

To bring you quickly up-to-date…

Katie is doing well. She’s busy with school and running her grandmother’s book business. She struggles with some side effects from the medications that she has to take and has had some trouble with her potassium being too high and her white blood cell count being too low. She has been hospitalized for both issues over the last couple months. We continue to be grateful for Kelly's gift to Katie!

Samuel is still going to the hospital 3 days a week for dialysis. He recently had a blood infection and his dialysis catheter had to be removed. He was tubeless over the weekend and a new catheter was put in on Monday this week. They will continue to treat him with IV antibiotics for a month.

Overall, Samuel is doing very well. Dialysis is hard on him and he still has some physical challenges, but most days he is a happy, funny guy. He is enjoying his studies and is especially grateful to be able to participate in the homeschooling program that we do on Mondays. Samuel's new kidney (Tom’s old one) is not functioning and he needs another transplant. We are hoping it might happen shortly after the school year ends, but we still need to find a donor.

Esther is moving into a new stage in her personal kidney adventure. She has gone from 50% kidney function when first diagnosed in April 2007 to about 40% function in April 2008 to 28% function now in October 2008. She recently began preparing for her future transplant by having lots of blood drawn for tissue typing. The information from these tests will help the transplant team determine the right match for Esther when the time comes.

Esther is scheduled to have vein mapping done in a couple weeks in preparation for a surgical procedure which will create a fistula in her arm allowing vascular access for dialysis. Here is a brief explanation of what a fistula is: http://tinyurl.com/6b97ws.

Samuel has been (and continues to be) adamantly opposed to having a fistula. That is why he has the catheter in his chest and has to deal with the risks of infection. Unlike many doctors who would insist on a fistula, Dr. Guillot has graciously allowed Samuel to continue with a catheter. We are still hoping that Samuel might change his mind.

It can take about 3 months for a fistula to mature enough to be used for dialysis. Esther needs to have the procedure done in the near future so that it will be useable when she needs it. No one knows for sure exactly when Esther will need dialysis, but it seems to be coming up sooner than we'd all like. Typically, when a patient reaches 20% kidney function, they are in need of dialysis or a transplant. Our hope has always been for Esther to have a pre-emptive transplant, meaning she would skip dialysis altogether, but she may need to be on dialysis until a donor can be arranged.

Tom is doing very well with his one remaining kidney. He hasn't experienced any difference in his energy level, health, or life in general since his donation one year ago today.

Which leads me to this request.....

If you would consider donating a kidney to Samuel or Esther, please contact me at smiths@smithfamilyfarmvt.com and I will connect you with a transplant coordinator who can answer your questions. We would be forever grateful.

~ Nancy

Another Long Day at the Hospital

Yesterday morning at work, Tom very suddenly came down with a fever and severe headache. Twenty-four hours later, he had not improved. So....this morning I brought Samuel to dialysis and Tom to the ER.

After lots of waiting, a chest x-ray, and a urine sample to rule out other things, the docs agreed that Tom should be tested for meningitis, just in case. Unfortunately, it took 4 lumbar punctures to finally succeed at getting some spinal fluid to test. Ouch! Praise the Lord, Tom does NOT have meningitis! He received 4 liters of IV fluid to get rehydrated (we need to keep that one remaining kidney happy!).

I sure did get my exercise today going back and forth between the ER on the 1st floor and dialysis on the 4th floor. I especially dislike having more than one family member in the hospital at the same time!

After dialysis, Samuel got a ride home with his grandparents who happened to be in town. His grandmother had been in the hospital since Tuesday night for routine monitoring while they adjusted her heart medications. She was discharged today, just in time to help with our crazy day.

Tom and I eventually made it home at 7:30 this evening! Tom still has a high fever and is quite sick, but now we can just wait it out without worrying. I’d be grateful for your prayers that Tom would be able to keep his germs to himself! None of us would enjoy being sick, but it could be particularly dangerous for Samuel and Katie.

All is well!

Sorry to leave you hanging! All is well! Samuel came home from the hospital on Wednesday and is doing great! I will try to catch you up on the details when I have a chance. Life is galloping along and I am hanging on for the ride!

Friday Report

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!

Wondering and Waiting

On Monday morning, Samuel had a drainage tube placed through his back and into his right renal fossa. The long tube has a JP drain at the end of it which applies a gentle, constant suction to draw out the fluid collection. Before putting in the drain, the docs used a needle and syringe and were able to draw out 50 milliliters of a very thick pus-like substance. Studies done so far have not been able to identify it. They have set up cultures and are waiting to see if something will grow, but under the microscope, there were no signs of bacteria or white blood cells. This would seem to indicate that the fluid collection is not an infection. At the moment, we do not know what it is, where it is coming from, and why it continues to reaccumulate. Always too many unanswered questions! Until we know for sure, Samuel is receiving two intravenous antibiotics.

Samuel had dialysis first thing this morning and got a migraine-like headache early in the session. I have to say he looked awful. He spent most of the day sleeping. He was a little more interactive this evening, but still feels terrible and is not interested in food. Walking is very hard for him....too many things hurt. I'm not sure what the docs have planned for Samuel. For now we are just waiting.

Katie is beginning to feel a little better. The antibiotic that she started on Sunday seemed to make her sicker, so on Monday they switched to a different one. She is slowly improving.

More Bad News on Sunday

Samuel continued to have a fever this morning (Sunday). He also had a new pain in his right abdomen/side. Our first thought was appendicitis! Dr. G. thought it would be a good idea to get him checked out so I brought Samuel and Katie into the emergency room. I was already planning to bring Katie to the hospital on Sunday morning after speaking with the doctor on Saturday night. We suspected that she had developed a bladder or kidney infection and the doc wanted her to be seen. The three of us went to the emergency room while Tom took everyone else to church.

The short version of the story is that Katie does have an infection. They will grow a culture to find out exactly what type. Meanwhile, she got a prescription for antibiotics and drove home. She is feeling pretty lousy, but should perk up in a day or two.

Samuel, on the other hand, spent a very long day in the emergency room. He eventually had a CT scan which showed that he has a pocket of infection in his right renal fossa....the same site where he had so much trouble last winter. The size of the infection is about 2" x 2" x 5". They are planning to place a drain through his back into this pocket in order to drain it. Samuel has, in the past, had two other drains in the same spot. Both previous drains were very painful for him. We are hoping that this time will be different.

After hanging out in the emergency room for 10 hours, Samuel was admitted and moved upstairs to the pediatric floor. Tom came for a visit and brought my computer, a toothbrush, and some clothes. Some of the Conchieris also came to cheer and to pray. Thanks, guys!

With the help of Benadryl and some pain medication, Samuel is now sleeping. The drain placement is scheduled for first thing Monday morning.

Samuel is VERY discouraged. We covet your prayers!

Good News and Bad News

Four weeks have passed since I last posted. Katie continues to heal with great success. Her creatinine is absolutely normal!! She is making fantastic progress, even reducing some of her medications. She "graduated" this week from once-a-week clinic appointments to once-a-month visits. Katie will still have to have her blood drawn each week for monitoring, but won't need to see the docs unless there is a problem. She is already picking out classes for the fall semester and is excited about getting back into life! This is the miracle of organ donation! How grateful we are to Kelly!!

Unfortunately, the report for Samuel isn't so exciting. He really hasn't been well since he was discharged from the hospital in February. He has been battling Clostridium difficile (C. dif), an overgrowth of bad bacteria in his gut, and has been through several courses of antibiotics in an attempt to knock it out. He has also been plagued by debilitating back pain and nausea. He has just been one sick boy! His labs have gotten progressively worse as his kidney function has declined. We've known for a few weeks now that Samuel was headed back to dialysis, we just didn't know exactly when that would be.

Last week on Friday, Samuel had to take a special medication because his potassium was dangerously high. On Monday this week, with a creatinine of 4.62 and his potassium and phosphorus high, Dr. G. gave Samuel the option of starting dialysis that day or the next. He chose to wait a day. It was quite a disappointment for Samuel (and all of us!). He was pretty quiet and withdrawn most of the day, but by dinner he was back to laughing and enjoying his sisters.

On Tuesday, May 13th, Samuel went in to the hospital to have another catheter placed in his chest. He was the most relaxed and chatty in pre-op that I've ever seen him. He told me all about the latest book he was reading until his throat got so sore that he had to stop talking! The procedure of placing the ash split catheter took just under an hour. Samuel was in the recovery room only a short time before they rolled him up to dialysis still asleep. The dialysis nurses welcomed us with smiles and hugs. The same nurse who did Samuel's very first dialysis run back in March '07 was there to do his 120th session!

After three dialysis sessions this week, Samuel still isn't feeling much better. He is having a hard time getting comfortable with the new catheter. He continues to sleep a good part of each day and has no appetite. He is discouraged with the whole scene and is losing confidence in the medical team. He just wants to feel better! He had a bit of a fever when he went to bed tonight, so we'll have to wait and see what tomorrow brings.

I'm trying to psyche myself up for the ol' three-days-a-week-to-the-hospital routine. It is a hard schedule for everyone in the family. I would ask you to pray for us as we make the adjustments and especially for Samuel as he struggles physically and emotionally.

Thank you!

Katie is home!

After two surgeries and only five nights in the hospital, Katie is home! She still has lots of healing to do, but is off to a great start! Praises be to God on high!

Katie has to go back to the hospital to have her blood drawn both on Sunday and again on Monday. Her creatinine level will be monitored very closely at first to watch for any signs of rejection.

I am also very happy to report that Kelly was discharged from the hospital yesterday. She is staying in town and resting up at the hotel until her follow-up appointment with the surgeons on Monday. We are looking forward to spending some time with her and her husband tomorrow.

Not much more to say at the moment. My brain is tangled up in excitement, relief, gratefulness, and exhaustion.

Just One Day After the Transplant....

and Katie is cruisin'!! Amazingly, her stay in the ICU lasted less than 24 hours! She is now settled happily in Baird 686, at the other end of the hall from Kelly. The new kidney is working beautifully and making lots of great urine. Her creatinine is lower with every blood test. Katie has been up walking twice today and had a full meal at dinner. Wow, when a transplant works, it REALLY works! Please rejoice with us! I was able to say it when things were tough with Samuel and now I can say it when Katie is having such a speedy recovery....God is good!!

Many thanks to all of you who emailed Kelly today! I understand she got quite a pile. You guys are great! Thanks for giving Kelly a glimpse of the special family and friends that we have! Please continue to pray for Kelly's recovery. She is having a hard time.

Transplant Report

Well, it was a long and exhausting day for all parties involved, but I'm so thankful to be able to report that both Katie and Kelly are tucked in for the night and resting. Katie is in the ICU and Kelly is up on the surgical floor. It was a very hard day for both of them. The Lord graciously granted us an uneventful and uncomplicated transplant. Let the healing begin!

I thought it would be great if we could do an email blitz for Kelly. I'll need your help. If you'd like to participate, please click on the link below. You'll need to type "Kelly Lamere, Baird 693" in the subject line. It would be best to write between now and 2:00 p.m. on Friday as emails aren't delivered on the weekend. Any emails that might arrive after Kelly is discharged will get snail mailed on to her by the kind volunteers at the hospital. Kelly has given a most precious gift and deserves to be recognized and honored. I'd be grateful if you all could help shower Kelly with words of love, encouragement, and appreciation.

Patient.Messages@vtmednet.org

I'm sure that Katie would also love to hear from people. Just type "Katie Smith, ICU M306" in the subject line. Katie will have a new room number in a couple days when she is able to leave the ICU but, again, those great volunteers will track her down and see that she gets her mail. Of course, you can also communicate with Katie through our family email address: smiths@smithfamilyfarmvt.com.

My eyes are refusing to stay open, so I will sign off. Many, many thanks for all the prayers, calls, and emails. The Lord has used you all to bless and encourage us! Thank you!

Between Surgeries

I am very happy to report that Katie’s surgery yesterday went very well! Hallelujah!! Today is a little harder as she is experiencing some possible side effects from the pain medication (itchiness, blurred vision). Lord willing, she had her last dialysis session this morning. Yipeee! This afternoon she was able to get out of bed and walk a big loop around the unit. It was a bit of an exertion, but hopefully she’ll be up for another walk this evening. After that, the prayer is for a good night’s sleep!

Grandpa Ed is going to sit with Katie tonight while the rest of us gather at the hotel with Kelly and her family for some pizza. We are excited about meeting Kelly’s 13-year old daughter, Amberle. Poor Kelly’s last meal was at lunchtime, so she’ll only be able to drink while the rest of us eat.

The big day tomorrow starts early for Kelly. She has to check in to pre-op at 6 a.m. She will be the first one into the operating room between 7:30 and 8:30. It will probably be a couple hours later before the surgical team is ready for Katie.

We would be grateful for your prayers for a safe, uncomplicated surgery for both of these precious young women.

Transplant Scheduled for Katie!

Time to fire up the blog again! Over the next week, I'll try to catch you up on some of the highlights from the last 7 weeks, but the exciting news for this post is that Katie has a donor and is scheduled to have her kidney transplant on April 16th!

Katie’s donor is a wonderful young woman named Kelly. We had the pleasure of meeting Kelly and her mom for the first time on February 26th when they came for dinner after a long day of testing at the hospital. Kelly lives in Massachusetts. She offered to donate her kidney after hearing about Katie’s need. We are unspeakably grateful to Kelly. Please pray that we might be able to minister to Kelly and her family as she makes sacrifices to give this incredible gift!

Katie and her amazing donor Kelly

Katie was originally scheduled to have both her kidneys removed on March 19th (a bilateral nephrectomy), giving her 4 weeks to recover before the transplant on April 16th. Unfortunately, she got a serious infection in her dialysis catheter and the nephrectomy had to be cancelled. On Friday, March 21st, after her dialysis session, her catheter was removed. She was tubeless over the Easter weekend (and for her 21st birthday!) and had a new catheter put in on Monday, March 24th, before having dialysis again. Katie is finishing up a course of antibiotics.

The nephrectomy has been rescheduled for April 14th. Katie will get to “recover” on the 15th and then get wheeled back into the OR for the transplant on the 16th. It is a less-than-ideal plan, but the docs have decided it is the best one given all the factors. They feel that combining the double nephrectomy and the transplant into one surgery would just be too long and risky.

Please join us in praying for an uncomplicated, uneventful transplant experience for both Katie and Kelly.

Samuel's home!!

Praise the Lord!! This battle is won! Be sure to check back now and then. You never know what new adventure the Lord might have in store for us!

No time to write more.....I'm too busy enjoying my family!!

Packing Our Bags!

This morning, Samuel finally had no detectable level of Vancomycin (an antibiotic) in his bloodstream. He continues to remain fever-free!! We have the green light to go home on Monday if he can get through Sunday without spiking a fever.

Home is within our sights! God has been so gracious to see us through this ordeal. Please rejoice with us!

Happy Valentine's Day!

It is day #70 and Samuel is doing well! Last week on Saturday, three of his medications were stopped because of the downward trend of his white blood cell count. All three drugs have a possible side effect of suppressing white blood cell production. Yesterday, his count made its first move upward. This is a good thing. Samuel has had a HEPA filter running in his room since he was first admitted, but now we were very close to the point of people needing to wear gowns and masks around him. Praise the Lord, it didn’t come to that!! The plan is to start a new “cocktail” of immune suppressing drugs once Samuel’s white blood cell count has normalized. The transplant team is researching just the right combination of drugs. In the meantime, Samuel has received two doses of a drug that should hold him for a couple weeks until they start the new regimen.

Before Samuel can head home, there are a couple more things to be accomplished. He needs to be able to drink enough in a day to keep himself well-hydrated. For now, he is still receiving IV fluids. He also needs to be fever-free for two days once there is no longer a detectable level of antibiotics in his blood stream. Today’s level was pretty low, so it is possible that tomorrow will start the countdown to going home!

Samuel is getting stronger every day. He has been working with a physical therapist here at the hospital. Today he was well enough and strong enough to stand and play table foosball in the teen room. Despite his physical disadvantage, he creamed me! :) It is so great to be once again laughing and playing together!

A Quiet Day

Not much to report today. Samuel isn’t quite as perky as he was yesterday. He slept most of the afternoon and didn’t eat much.

His white blood cell count is even lower, which is not good. No medication changes were made today. The docs are just waiting and watching. And so are we.

Birthday wishes for Hannah and a great day for Samuel!

Yesterday was Hannah’s 19th birthday! Back in 1989, on our 3rd wedding anniversary, I was in early labor while out on our celebratory dinner date. My contractions progressed and our waitress was stressing when she found out why I was sitting quietly with my eyes closed every four minutes or so. It wasn’t a problem for me….one can eat a lot in four minutes! We eventually made a phone call and arranged for Katie (then 22 months old) to spend the night with our friends who were babysitting. Then, much to our waitress' relief, we went directly from the restaurant to the hospital. It was the next day by the time Hannah made her appearance, so now every year on February 9th, we celebrate the gift of Hannah! And what a gift she is!!

Thoughtful, sensitive, caring…Hannah has been an invaluable help during this ordeal. She has kept things running at home and has stepped in as surrogate mom to Esther and Lydia. Hannah, you are great! We couldn’t have survived this without you!!

Yesterday was a hard day for Samuel. After a long night, he was feeling very sick and weak. He has been asked to take at least two walks each day. He did this faithfully yesterday despite feeling so ill. I wasn't sure he was going to make it back to his room. It was hard to see him struggle so.

Because Samuel's feeding tube was clogged, instead of having his pills crushed and flushed down the tube, he had to swallow them whole. This was a challenge for him because of his intense nausea.

The surgeon decreed that his feeding tube had to be removed because it was irreparably clogged. Samuel chose to pull it out himself….brave boy!! The plan was to put a new tube back in on Monday. But the Lord may have another plan!

Samuel is doing SO well today! The difference between yesterday and today is incredible! He has no fever, no nausea, and is eating!! If he can take in enough calories on his own, he won’t need another feeding tube. He took three walks and a wheelchair ride today without too much difficulty. He also had no trouble swallowing his oral medications.

There are still many unanswered questions….What caused his recent fever? Why has he been so nauseous for so long? Why is he suddenly not nauseous today? Why is his white blood count now so low?

Yesterday, only 3 of his 14 daily lab tests were in normal ranges. Today two more are normal, but just barely. The docs are fiddling with his medications, including withholding one of his anti-rejection meds.

Meanwhile, I am just thrilled with Samuel's progress today! Thank you, Lord!! We’ll continue to wait and pray.

News from Friday

Today Tom and I celebrated our 22nd wedding anniversary! Where have the years gone? I guess it must be true....time flies when you're having fun! There have been some challenges sprinkled in with all that fun over the last 22 years, but God is good and He continues to bless and strengthen our relationship. I love you, Tom!

Hannah stayed with Samuel while Tom and I spent a few lovely hours together. Samuel asked me to be back by 10 p.m. It is the first time I have left his side since this all began. Leaving him in the hands of Hannah and an especially great nurse made it a little easier.

It seems Samuel had a roomful of visitors to entertain him while I was gone! Praise the Lord, it was just the distraction that he needed after this afternoon's discouragement of having two peripherial IV's placed....one in each arm. Ouch!

There was no discernable sinus infection to be seen on yesterday's x-rays, so today the PICC line was moved to the top of the suspect list and the docs wanted it to be removed. Rats! The usual policy is to establish new venous access before removing the old. The new IV's went in just before I left on my date with Tom. The docs wanted to wait until I was present before removing the PICC line, so when I returned at 10 p.m., the IV nurse came and took it out. It was not a fun experience for Samuel. The tentative plan is to put in a new PICC line once he is afebrile (without a fever) for a couple days.

Despite some heavy duty doses of antibiotics, Samuel managed to have a fever again this morning. By late afternoon, his temp was down and he was feeling a little better. By this evening, he was perky enough to really enjoy his visitors.

Today's new surprise is that Samuel's white blood cell count is now too low! The docs aren't sure what that is about, but are making some adjustments to several of his medications.

Samuel's creatinine is back up to 2.50, but knowing that it was once able to get as low as 2.15 gives me hope that he'll get there again.

Prior to Samuel's surgery last week, his tube feeds were running 24 hours a day. When the tube feeding was restarted a couple days after last week's surgery, the plan was to run the feeds for only 12 hours in hopes that Samuel would get hungry and eat more on his own. Unfortunately, the fever has increased Samuel's nausea and decreased his appetite. The nutrition team decided today that he is not getting sufficient nutrition and the tube feeding time has been increased to 20 hours a day. Assuming his tube is functional......

I started writing this post at 11:45 p.m. It is now 4 a.m. I am still up because one of Samuel's midnight meds (that gets put down his feeding tube with a syringe) has clogged up the tube. The nurse has been working without success to get it unclogged. She tried putting Pepsi down the tube in hopes that it would eat away the obstruction. When that didn't work, she called the transplant team. The resident on call suggested that she try Coke instead. He said that it is known to work better. And people drink this stuff?? No success yet. The resident is supposedly coming to check out the situation as soon as he is done stitching up someone in the ER. Meanwhile, the "food" has been disconnected. Presumably, they'll leave it be for tonight and will sort it out tomorrow. I'm going to try and get some sleep.

Here we go again!

After a couple good days, Samuel is ......... can you guess what I'm going to say?? .......... having some setbacks. He had been doing so well! Dr. G. even used the "h" word (home) yesterday and thought we could aim for a discharge on Tuesday or Wednesday next week. Wow! That was exciting to hear! We'll have to wait and see what kind of impact (if any) today's issues will have.

I won’t bore you with all the details. The worst of it is that Samuel woke up this morning at 2 a.m. with a fever. Shortly thereafter, the nurses drew blood to start some cultures to see if a specific virus, fungus, or bacteria will grow. If something grows, it can be identified and the treatment can be targeted. Each culture bottle gets 5-10 milliliters of blood. They started six bottles this morning. I have lost track of how many times we have gone through this routine in the last 63 days. It is necessary, but unfortunate for Samuel, who is struggling with anemia. He doesn't have any red blood cells to spare.

At 7 a.m., he went downstairs for a chest x-ray to check for signs of pneumonia. Thankfully, his lungs look great!

The risk of waiting to treat the fever until the source can be identified is too great, so until a specific infectious agent can be identified, they will treat Samuel with broad spectrum antibiotics. He was started on two “big guns” this morning. I am grateful that we have these drugs to use when necessary, but it grieves my heart to think about the negative impact these antibiotics have on Samuel’s body.

Late this afternoon, Samuel had a series of sinus x-rays and we are waiting for the results. He has had a feeding tube in place for about 7 weeks now. It goes up his nose and down his throat. People with these types of tubes sometimes get sinus infections if the tube has been there a long time. I’m actually hoping that the problem is “only” a sinus infection. That is much better than some of the other possibilities.

The docs were going to pull out Samuel’s PICC line this morning as it is high on the list of infection suspects. With all the persuasive charm I could muster, I negotiated with Dr. D. to leave the PICC line in place until we could be certain that it is not a sinus infection. He agreed!! There will be untold misery and discomfort for Samuel if they have to take it out, replace it with a peripherial IV for a few days, and then put in a new PICC line.

Samuel says he is doing fine emotionally. He just feels awful physically. Both of us are exhausted. We didn’t get much sleep last night. Please pray that Samuel has the necessary reserves to fight yet another battle. His big enemies right now are fever, headache, and nausea. Thankfully, his pain is under control most of the time. Please pray that the source of the infection will be identified soon.

Day #60....Surgery Report

Sorry to leave you hanging for a couple days. I just needed a break. Now to get you caught up….

Samuel’s surgery on Thursday night went well. He was in the operating room for just over 2 hours. Despite his elevated white blood cell count and what the CT scan showed, the surgeons did not find an abscess in Samuel’s right renal fossa. That is good news! A bit confusing, but good! There were plenty of adhesions and some inflammation in his abdomen, but no obvious pockets of “traditional infection” (meaning pus). The surgeons had to separate some of the adhesions to be able to work, but some adhesions they left alone, including the bit of bowel that is now attached to Samuel’s new kidney. They used more than two liters of a saline/antibiotic solution to wash out his peritoneal cavity. Doing this disrupted the existing pockets of fluid that he had near his spleen and kidney. These collections of fluid are normal after an abdominal surgery and are, over time, reabsorbed by the body, but since the surgeons had the opportunity, they cleaned these pockets out also.

While they had Samuel open and could see what was what, the surgeons took a biopsy of the new kidney. This also allowed them to watch to be sure there was no bleeding after taking the sample. If you remember, Samuel’s last biopsy on December 6th bled significantly and created a whole set of problems. I’ve been told that the initial biopsy report looks good…no sign of rejection! More detailed information will come later. The surgeons also took out one of Samuel’s lymph nodes for testing. They don’t anticipate that there is anything wrong with it; they are just being overly cautious.

Samuel spent Thursday night through Saturday afternoon in the ICU. His blood pressure was incredibly stable and LOW!! Later on Saturday, he was moved up to the pediatric floor and, would you believe, he is back in his old room…Baird 587!

Sunday was a quiet day of rest. We watched a fascinating program about the history of some foods….chocolate, pizza, hamburgers and fried chicken. Very interesting! We also had a nice visit with Grandpa Hoot and Elizabeth. Tom came to visit earlier than usual so he could leave in time to watch the Super Bowl at home. Inspired by the television program we had watched, Samuel and I decided to order a pizza for dinner. Shortly before I went down to the hospital lobby to meet up with the delivery person, Samuel had an episode of muscle spasms, headache, and intense nausea. He was medicated and eventually fell asleep leaving me to eat cold pizza alone. I’m hoping he’ll be up for eating some leftovers later.

So, here’s where we are right now…..

Samuel has a large, nasty-looking incision down the center of his abdomen and his belly is extremely tender to the touch. Yesterday, he told me that he feels like he has been “cut up and put back together wrong”. His pain is being managed with a scheduled oral dose of Dilaudid, as well as a PCA (patient-controlled analgesia) pump that administers an IV dose of Dilaudid whenever he pushes his “pain button”. It will not allow him to have more than a programmed number of doses each hour. It locks him out if he pushes the button too often. He has had this set-up before so it is pretty routine for him.

Samuel’s blood pressure was ideal (systolic 110-125) on Friday, Saturday, and Sunday. It seemed that the surgeons had unwittingly adjusted some unknown BP thermostat while they were operating, but since this morning, his pressure has been a bit higher (135-149). He continues to be on four different blood pressure medications. We’ll have to wait and see where things go. It is a mystery why his blood pressure was suddenly so low and stable after the surgery.

Today Dr. Di Carlo told me that they have wanted to take Samuel back into the operating room for awhile. But without a clear reason to do it, they were hesitant to take such an invasive step. The combination of the elevated white count and the suspicious CT scan on Wednesday, gave them the excuse they were looking for. So even though they didn’t find the abscess that they “saw” on the CT scan, it seems to be what the Lord used to trigger the surgery. Dr. Di Carlo explained that sometimes a person, like Samuel, with a compromised immune system, isn’t able to mount an appropriate response to an infection. In these cases, it is possible to have an infection without rallying white blood cells (pus) or even having a fever. At this point, the assumption is that Samuel did have an infection somewhere in his abdomen. The washing out procedure has really made a difference. Samuel’s overall condition is greatly improved! His white blood cell count is now lower than it has been in a very, very long time! Today, his creatinine level took a BIG jump down from yesterday’s 2.50 to an all-time low of 2.15!! More of his labs are falling within normal ranges. Anemia is still a problem but, hopefully, that too will begin to turn around.

So today, on day #60 of this adventure, Samuel appears to be making great progress. He is chatting, reading, and eating (a little)….all good signs. We are grateful to the Lord for His goodness! Please rejoice with us and continue to pray for Samuel’s complete recovery.

Recovering in the ICU

Samuel is in the ICU recovering from last evening's surgery. I'm going to take a nap and try to recover as well. I don't have the brain to write much right now, but I wanted to let you all know that the surgery went well and that Samuel is fine....in pain, but fine. I'll write more later.

Thanks for all your prayers on his behalf!

Samuel headed to surgery

This morning the decision was made to take Samuel back into surgery. We have been waiting all day to be squeezed into the OR schedule. Samuel has been NPO for over 20 hours.

We just got word that they will be bringing Samuel down to pre-op at about 6:45 p.m. The transplant surgeons will re-open his midline incision that is just healing from his December 7th nephrectomy. They will perform an exploratory laparotomy (abdominal surgery) with the expectation that they will wash out the infected area and investigate other pockets of fluid near his spleen and transplanted kidney. They are also planning to do a biopsy of the kidney. I was told to expect it to be several hours before we can connect up with Samuel again in the ICU.

We covet your prayers.

Two Steps Forward....Three Steps Back

A lot has happened since I last wrote on Monday night! My dear German friend, Elisabeth, once wrote that she thinks the kidney blog is “better than any thriller”…. you just never know what is going to happen next. I am really feeling that way myself tonight as I write this. I can only shake my head and say, “Okay, Lord.”

As scheduled, on Tuesday morning we took two giant steps forward by leaving the hospital and going to rehab. Our three steps back came this evening as Samuel was transported back to the hospital and was re-admitted to the pediatric floor. We are back in our old room - Baird 587. Here are the details.....

Samuel had quite a send-off on Tuesday morning as he left Baird 5. Nurses, residents, and doctors lined the hallway and sang “For He’s a Jolly Good Fellow” as Samuel was wheeled out through a shower of bubbles. They clapped and cheered for him. It was very touching! I would have positioned myself to get a shot of Samuel’s face had I known what they were planning. I’m told he was grinning from ear to ear.

These are just some of the dear folks who celebrated as Samuel left Baird 5.




This is not such a great photo. Samuel is up ahead in a wheelchair. If you look closely, you can see the bubbles and a blue bubble machine on the left. Abby’s mom (remember Abby?) donated the bubble machine to Baird 5 a couple years ago after Abby spent four months in the hospital. Leslie thought that there should be a big celebration when a child is discharged from the hospital. She’ll be very happy to know that Samuel made his departure through a shower of bubbles. I must say, it did feel like a celebration!

Here is Samuel arriving at the Fanny Allen Rehab on Tuesday at 11 a.m. It is the first time in many weeks that he has had shoes on his feet.



The rest of Tuesday was terribly boring. We had expected to jump right into some physical therapy, but they hadn’t scheduled anything for Samuel. We spent the day just hanging out while all the paperwork and administrative details were worked out. Our room was nice, but it all felt a bit too much like a nursing home. Samuel and I both missed the bustle and energy of the pediatric floor. The nurses were very nice, but there were some medication snafus and other issues with the transition that caused me some stress. I also felt a bit unsettled not having Dr. Guillot directly involved in Samuel’s care. Shortly before midnight, Samuel complained of tightness in his chest and his blood pressure was doing some funky ups and downs.

By Wednesday morning (today), Samuel was in tears with big time chest pain. The doctor in charge ordered an EKG, but nothing unusual was detected. They drew some blood to check his labs. Everything looked fine except his white blood cell count – it was high and almost double what it had been the day before. They rechecked his WBC count again a few hours later and found that it was a little higher still. The next move was to order a CT scan of his abdomen to look for any signs of an infection. Before they could do the CT scan, Samuel had to ingest (via his feeding tube) a liter of the contrast that would enable them to get a better picture. That took a few hours, so at 7:30 p.m. they did the scan. An hour or so later, I got a call from Dr. Guillot who, thankfully, is once again running the show. It seems that, for a third time, a pocket of fluid has re-accumulated in Samuel’s right renal fossa (I think I don’t like that word anymore!). Dr. Guillot wanted Samuel back on Baird 5, so she made the necessary arrangements and he was promptly transported via ambulance back to the hospital where he arrived shortly before 11 p.m.

So….36 hours after leaving Fletcher Allen, we are back! In a warped sort of way, it feels a bit like coming home....familiar surroundings and people who know you and care about you. Samuel is currently NPO (nil per os, a Latin phrase meaning “nothing by mouth”). The doctors are leaving their options open for tomorrow in case they decide to do some type of surgical procedure.


Prayer requests

• That the surgeons would come up with a plan that would take care of this infection once and for all.
  
  
• That they would figure out what is causing Samuel’s chest pain. It could be referred pain.
  
  
• That Samuel would physically and emotionally overcome this setback. You can imagine his discouragement! He feels like he is back at square one.
  
  
• That I would know what to do or say to encourage him.
  
  

Praise reports

• That the infection was discovered before a fever or sepsis set in.
  
  
• That Grandma Peach and Grandpa Ed “happened” to visit today and were there to give hugs and help with the move back to the hospital.
  
  
• That Joanne came by for a visit this evening (before we knew about the infection) and just "happened" to bring me donuts. Praying and eating donuts has seen me through many a crisis! Needless to say, I have gained a few pounds during Samuel's hospital stay. Maybe this isn't a praise report afterall!

Stay tuned....we'll see what tomorrow brings.

Field Trip Day

After a good day with no complications, Samuel is scheduled to be transferred to the rehab hospital tomorrow morning. Thank you, Lord!! One giant step toward home!

To make the most of our last full day here, we made time to take some "field trips". I have been curious to see some of the departments within the hospital that have contributed to Samuel's care over the last 53 days. Unfortunately, Samuel hasn't been well enough to do much touring before now. Joanne and Kevin arrived just in time to accompany us. We got Samuel comfy in a wheelchair and headed out.

We first visited the mailroom where each piece of Samuel's mail is checked against the patient census to verify his current room number, then sorted by floor, and finally delivered to his room. The mailroom team of 2 (plus 1 part-timer) handles 15,000 - 20,000 pieces of mail each day!

Next, we went to the volunteer office where any emails that have been sent to Samuel have been printed out and then delivered by a volunteer. The volunteer office manages over 600 people who generously donate their time to do many, many jobs throughout the hospital.

Our next stop was the laboratory. Samuel was not at all interested in visiting the lab, but he graciously humored me. The laboratory is a huge, open room that bustles with people and whirring equipment 24 hours a day. We saw some incredible automated machines that are able to work more quickly and efficiently than the humans who used to do the same tasks manually. We had a little tour of the area where blood cultures are incubated and grown. The technologist kindly opened the large incubator for us....very smelly!! We saw several of the machines that are used to process and test Samuel's blood every morning. These blood tests provide the critical information that enables the doctors to monitor Samuel's kidney function and immune suppression.

Before I could get all my questions answered ....will that ever happen??.... Samuel ran out of gas and we headed back up to his room. Later in the evening, he took a long nap. Medically, Samuel is finally stable. Physically, he is very weak and deconditioned. The expectation is that his time in rehab will give him a jump start on rebuilding his strength and stamina. Despite his reserve, Samuel is excited about the next phase of his kidney adventure. He is hoping to be strong enough to play some pond hockey before the ice melts.

Weekend Ups and Downs

Samuel was SOOO much better on Saturday! He walked, talked, laughed, ate, and even took a shower! It was a great day and cause for much rejoicing! But before I had a chance to get too comfortable with Samuel’s newfound spunk, we were once again in crisis.

Just before midnight on Saturday, Samuel began an episode that included hypertension, slow pulse, irregular heartbeat, chest pain, and headache. It all happened very quickly with a flurry of doctors and activity. Samuel had a slew of blood tests done as well as an EKG, which showed some abnormalities. He was given some intravenous magnesium and calcium.

Samuel’s condition was serious enough to rouse Dr. Guillot from her bed. She arrived at the hospital about 1:30 in the morning and had Samuel transferred downstairs to the ICU. Once again, he was hooked up to a monitor and a Nicardipine drip. By 4 a.m., things had settled down enough that I was able to fall asleep for a few hours in a recliner in Samuel’s room.

Later on Sunday morning, Samuel was weaned off the Nicardipine. The new plan is to give a dose of a quick-acting drug (Nifedipine) whenever Samuel’s blood pressure gets too high. Hopefully, the doctors will come up with a medication combination that will keep his hypertension under control enough that we won’t need to use it often. Samuel has already had to take it twice today.

At 4:00 in the afternoon, Samuel was back up in his room on the pediatric floor. We are both very tired after last night’s excitement. I’m having a hard time keeping my eyes open as I type this.

Please keep praying! We still hope to get to rehab on Monday or Tuesday.

Friday Update

Well, we didn’t make it to rehab on Thursday. Samuel was down and out with severe nausea, dizziness, and a headache on Wednesday and Thursday. The doctors also weren’t done tweaking his meds, so the obvious decision was to stay put. We hope that Samuel will be well enough to be transferred to rehab early next week.

Since Tuesday, Samuel has been too sick to be up and walking. Based on the timing of this setback, it seemed possible that his difficulties were being caused by an increase in one of his medications. On Thursday, the doctor made a plan to slowly decrease the dose….it is a medication that can’t be stopped suddenly. This morning, Samuel woke up without a headache and was feeling less nauseous (yeah!), so I think we are on the right track with the medication connection.

Unfortunately, the new day also brought a new challenge. The lab results from this morning seem to indicate that Samuel may be having a mild rejection episode. Samuel will get some big doses of prednisone for the next three days. A second immunosuppression medication is being doubled. Please pray that the increased drugs will keep Samuel’s body from mounting a full-fledged rejection.

Samuel had a couple hours this evening when he looked really good! What a change from this morning! He enjoyed a visit with some family and friends. By 11 p.m., he was back to battling with pain and nausea. I'm praying that he will be able to sleep well tonight.

Today marks day number 50 in the hospital for Samuel. Who would have ever imagined?

There's Light at the End of this Tunnel

Slowly, but surely, we are getting closer to the end of our stay here. There are only a couple more IV meds to be changed over to oral. Yesterday, we caught a brief glimpse of the “old” Samuel…..he read a whole book in one day!

The doctors have set a goal of getting Samuel well enough to be discharged next week on Monday. Instead of going home, Samuel will be transferred to the rehabilitation program at Fanny Allen Hospital. We don’t yet know how long he will need to be there, but the goal is to get him strong and ready to get back into life. There is a chance that he could go to rehab as soon as Thursday. We just have to see how all the new oral meds settle in. They don’t want to admit him on a Friday or over the weekend, so if he is not ready on Thursday, he’ll go on Monday.

Samuel’s blood pressure was great for about a day. Since this afternoon it has been only okay. He is still having a lot of trouble with nausea. It is really holding him back. Nausea is on the list of possible side effects for most of his medications. His elevated level of blood urea nitrogen could also be a factor. Please pray that this issue disappears or becomes manageable. It is often debilitating for Samuel.

The big excitement for today was changing rooms. Our big room was needed for two babies with RSV, so we packed up and moved across the floor….back to Room 587. It is a familiar and cozy room. Unfortunately, Samuel wasn’t well enough to walk to our new digs, so we rolled him there in his bed.

Keep praying! We are almost there!

Happy Birthday, Grace!

For the first time since Christmas morning, our whole family was together today. Everyone gathered in Samuel’s hospital room to celebrate Grace’s 17th birthday. Grandma Peach and Grandpa Ed joined us and brought along a birthday cake and some delicious Spanakopita. After a rough morning, Samuel felt well enough this afternoon to sit up and play a board game with the gang. It was nice to be together.

This makes three birthdays and two major holidays that have been upstaged by Samuel being in the hospital. Additionally, my children have had to make many, many daily sacrifices over these last ten months. A lot has been asked of them.

Please pray for my precious children as the Lord challenges them and squeezes them. Pray that their hearts would be knit together as they love and support each other. Pray for me that I would rest in the knowledge that the Lord will use this season of difficulty for His glory and their ultimate good. Pray for Tom as he deals with the day to day stresses at home, at work, and at the hospital.

The birthday girl!

A roudy game of Clue

Mom, Dad, and a smiling patient!

Email Link

I have added a link on the right-hand sidebar that will connect you to the hospital's website where you can send an email to Samuel. His latest room number is Baird 524. Emails addressed to any of his old room numbers seem to be finding him just fine. The volunteers here are great!

Day 28

Seems we are still doing the two-steps-forward-one-step-back dance. After an unprecedented two good days in a row, we had a bit of a scare on Friday morning. Samuel woke up with a 9 out of 10 pain rating and was very specific about where it hurt.....his transplanted kidney. He also threw up a couple times and his white count was higher than the day before. A combination of pain killer and sedative helped make him more comfortable and able to sleep through most of the day. They dosed him with a load of prednisone (to reduce inflammation) and decided to wait it out. By evening, the pain was an 8; and by this morning it was a 6.

It is possible that one medication was inhibiting another medication from adequately suppressing his immune system which, in turn, allowed his body to have an inflammatory response to the foreign kidney. Samuel has blood drawn very morning at 6:00. The lab results help the doctors know which medications need to be adjusted. There is likely to be more tweaking as they transition Samuel to oral medications.

Today was a good day. Not much eating, but a little walking and a very little reading.....first book reading that Samuel has done in over six weeks! For those of you who don't know Samuel, he is rarely without a book to read. I know that he is really sick when he is not interested in reading.

Samuel's tube feeding formula was adjusted this evening to reduce the amount of protein he is getting in hopes of slowing down his rising blood urea nitrogen. His potassium has also gotten too high so he was given a dose of a potassium binder at bedtime.

In case I haven't mentioned this lately....Samuel's new kidney is really working....not perfectly (see paragraph above), but definitely working!! His creatinine level was down to 2.34 this morning!! A normal healthy level is about 0.6 to 1.2. After all that Samuel and this kidney have been through, this is truly amazing! Praise be to the Lord God Almighty!

Day 26....Out of the ICU!

This afternoon we moved back to the pediatric floor! We are blessed to have been assigned a wonderful, extra spacious room....Baird 524 for anyone who'd like to know. This is the 10th room that Samuel has occupied since we started this phase of our adventure 6 weeks ago!

Samuel has made some great progress in the last two days! Getting off the Nicardipine drip and out of the ICU was a big step! Despite lowering his pain medication dose (part of the process of getting him out of here), Samuel is moving around more comfortably and has been rating his pain most often at a 5 or 6 (out of 10) instead of the previous 8 or 9. He actually requested some food (watermelon and herring in sour cream!) and has had a few bites of something each day. He is steadier on his feet and able to walk a little farther. Yesterday we took an outing to the main lobby of the hospital. Samuel walked for a bit and then rode in the wheelchair the rest of the way. His nurse wheeled him outside for a few breaths of fresh, cold air.

In addition to getting weaned off the Nicardipine, another objective over the last two days has been to begin transitioning some of Samuel's IV meds to oral meds. That means he is now down to only one IV pole with six pumps instead of two poles with nine pumps. Having to manuever only one pole sure makes getting into the bathroom easier! Right now, about half of his 20 medications are oral and have to be dissolved in water and pushed down his feeding tube. Eventually, Samuel will be able to swallow them all in pill form. That needs to happen before he can be discharged.

This evening Samuel had a nice visit with Kevin and Tyler. He was able to sit up for about an hour and a half to play a couple games. He was wiped out for the rest of the night, but it is great to see what he is able to do on a good day. Lord willing, he'll have many more good days ahead in the near future.

Day 24....Day 40

Today is the 24th day that Samuel has been in the hospital since he was admitted on December 23rd. But it is the 40th day out of the last 41 days that he has been in the hospital. There has only been one day (Dec. 19) in the last 41 that Samuel has not been in the hospital.

Admission #1....Dec. 6th - Dec. 18th....13 days
Admission #2....Dec. 20th - Dec. 22nd....3 days
Admission #3....Dec. 23rd - ???....24 days so far

Total to date = 40 days out of the last 41

In honor of Samuel's 40th day in the hospital, I've been thinking about the significance of this number. There are many references to the number 40 in the Bible....during the flood it rained for 40 days and 40 nights; Moses spent 40 days on Mount Sinai; the Israelites spent 40 years wandering in the wilderness; Jesus fasted for 40 days; and many others. Some Bible scholars believe that 40 represents a period of preparation for some special action of the Lord; a period of grace before some major change or transformation. I sure could get excited about a major change in Samuel's status. Please, Lord?

Hair can grow a lot in 40 days, so a very kind friend came today and cut Samuel's hair. It was a bit of a challenge to do it with him lying down for most of it, but the deed was done and he looks very handsome. Thank you, June!!

Otherwise, there wasn't much progress today. Samuel felt pretty lousy (understatement) all day and the nausea was back to plague him. For a very short time this afternoon, the Nicardipine drip was off. At the moment, we are back up to the "5" setting (1.13 mcg/kg/min). In order to move from the ICU back to the pediatric floor, Samuel needs to be able to maintain a systolic blood pressure under 150 without the Nicardipine IV drip. If he can do it loaded up with a combination of other IV and oral meds, that is acceptable. He just can't be on the pediatric floor with the Nicardipine drip.

I know that we will get there, but the going sure is slow.

Day 23….A good day!

We saw some exciting improvements today….a little eating, a little walking, and a little board game playing....more awake time and no more JP drain! We are another day closer to going home!

The battle with Samuel’s hypertension continues, but eventual victory is assured.

Short post tonight….I need to catch up on my beauty sleep!

Day 22....Back to the ICU

I’m finding it difficult to write a post this evening. Sometimes I am tired of sharing bad news and sometimes I am just tired. Tonight I am both.

When I last wrote on Friday, Samuel was really struggling. Saturday was even worse. His red blood cell count was extremely low and his white blood cell count was rising again. He was very “out of it” and sometimes incoherent. He had spiked a fever, so they drew more of his precious few red blood cells to try to grow more cultures. They did an adrenal stimulation test to check his adrenal function. They sent him down to radiology for another thorough ultrasound. They wanted to check out his spleen, lymph nodes in his neck, the graft, and his renal fossa (and YOU know what that is!!). It was a long and painful exam for Samuel as the radiologist had to apply pressure on his tender abdomen and neck in order to get good pictures. Thankfully, they didn’t find any surprises during the ultrasound.

There were multiple brains engaged in trying to make sense of Samuel’s degraded condition. In the process, it was discovered that for the last week, Samuel has not been receiving the prednisone dose that they had intended him to get. It is possible that some of his issues have been caused by suddenly (and unintentionally) stopping the prednisone. To correct this, Samuel is back on some big doses of prednisone for 3 days and then will go back to his small daily dose. They also discontinued one antiemetic drug that might have been making him too drowsy. And lastly, they gave him 2 units of packed red blood cells.

Saturday evening, even before receiving the blood transfusion, Samuel’s blood pressure began to be too high. The nurse was in his room very often during the night monitoring both the transfusion and his pressure. There was just a little too much going on for me to sleep, so I took the opportunity to work on a project that Dr. Guillot had asked me to do. She wanted to see all of Samuel’s temperatures from the last 20 days plotted out on a graph. It is just the type of challenge that I enjoy, so it was a great distraction for me during the tense night. I finally went to sleep at 5 a.m. for a couple hours. Hence, my weariness today.

This morning, Samuel was more alert, appeared to be in less pain, talked a little more, and generally seemed much better....except for his blood pressure. It was dangerously high and the decision was made to send him back to the ICU.

So….that is where we are. We seem to be trying out all the ICU rooms. This is room number five for us. It is at the end of the hall where it is quieter, but the view isn't so hot. Oh, well! We hope not to be here too long. Samuel is on a Nicardipine IV drip which will be ever so gradually increased until his blood pressure is where they want it. Meanwhile, they have increased his other BP medications. Once those start taking effect, they will begin the process of slowly backing down on the IV dose. It is a tedious process of tiny steps up and down until everything is stable and where they want it. The process requires close monitoring and can only be done in the ICU.

To remind you of some good news.........

Despite all that Samuel's body has been through since the transplant, the function of his new kidney continues to improve! This is truly amazing! Glory to God!

Day 20

Early on in Samuel’s hospital stay, it was clear that he needed to feel that he had some control over his situation and what was happening to him. To help eliminate some frustrations that he was having, I encouraged him to make a list of things that he would like to communicate to the doctors and nurses. A sweet person from Child Life took the list and printed it out for us. It included a pre-transplant photo of Samuel with a big grin. I wanted people to catch a vision of the "real" Samuel, not just to see him as the sick kid who was lying in the hospital bed.

Samuel’s list has been taped to the door of each room that he has occupied. Many children at the hospital who are “long-termers” or “frequent flyers” have a sign on their door simply stating their name, interests, and favorite foods or movies. No one has a list quite like Samuel’s.

Samuel’s Manifesto

• I prefer to be called Samuel.
  
  
• I play the cello.
  
  
• I am active, involved, and knowledgeable about my care. Please be respectful of this when interacting with me.
  
  
• I prefer as much notice as possible before any medical procedures. I like to know what to expect during and after the procedure.
  
  
• Please tell me before doing anything to my body, including taking my temperature, putting medicines in my IV, or drawing blood.
  
  
• If you see that my eyes are closed, when you speak, assume that I can hear what you are saying.
  
  
• I prefer as few people as possible to press on my belly as it hurts me. If you absolutely have to, please do it gently and give me notice first.
  
  
• When it is obvious that I do not feel well, please do not ask me how I am feeling. It frustrates me.
  
  
• I prefer to have choices in my care. If you are doing something to me that I can have a choice about (which finger for a finger stick), please present it to me. If I do not have a choice, please tell me what you are going to do and ask me first if I am ready for you to do it.
  
  
• Please do not rub my back when I am throwing up!
  
  
• I am a Red Sox fan!!
  
  
• Please remember that I am a person and not just a patient.
  
  

The medical team has responded well to Samuel's list and they do their best to honor his requests. The only troublemaker was Dr. Di Carlo (a.k.a. surgeon/comedian) who wanted to know if there was any significance to the order of the list. He thought it was noteworthy that the statement about Samuel being a Red Sox fan followed immediately after the request not to have his back rubbed while he was vomiting. The man is from Montreal. What can I say!

Medical report….Samuel has spent the last two and a half days battling pain from the JP drain in his back. Today he was able to sleep most of the day, thanks to a combination of medications he is receiving to manage the pain. This morning, the doctors asked that he get up and do some walking. Samuel could have just laid in bed and refused to get up but, instead, he pushed through the headache, back pain, exhaustion, and low-grade fever to take two short walks in the hallway. I am very proud of him. He is an amazing kid!

Day 18

This afternoon Samuel was rolled down to radiology. He had a PICC line (peripherally inserted central catheter) placed in his left arm while under sedation. This PICC line will replace the two IVs that he has had in his right arm. These regular peripheral IV sites often become sore and irritated and have to be replaced every few days. Samuel has been keeping track of how many IVs he has had placed. He is sleeping at the moment (thankfully!) or I would ask him for the tally.

Externally, Samuel's PICC line has two lumens (lines) with a clave at each end where the IV lines or a syringe can be connected. Internally, the two lumens lie side by side within one catheter, which runs up a vein in his arm and into his chest, ending a little before the heart. This PICC line will be able to remain in place much longer than a peripheral IV. It can also be used for drawing blood which will spare Samuel being stuck each morning. To reduce the risk of infection, Samuel has a gauze bandage wrapped around his arm where the catheter enters. Overall, this new PICC line will provide better access and be much more comfortable for Samuel.

While Samuel's arm is happy, his back is not. Part two of today's procedure involved placing another drain through Samuel's back into the space where his right kidney used to be....his right renal fossa. (I recommend that you try impressing your friends and neighbors by using the term "renal fossa". It is fun to say and they will likely not have a clue what you are talking about.)

The ultrasound and CT scan that were done yesterday showed a reaccumulation of fluid in the same place where a drain had been placed on Christmas Eve. That drain was removed on January 3rd.

Before placing the new drain, Samuel was rolled onto his stomach and a small group of interested parties gathered to examine the area using ultrasound. I'm told there was some debating, discussing, and general head scratching as they tried to determine what they were looking at. Was it infection? Was it bowel? Was it Surgicel (http://en.wikipedia.org/wiki/Surgicel) left over from the last nephrectomy? It seems the answer was yes, yes, and yes.

At some point in the procedure, Samuel went from being sedated to being under general anesthesia. Guided by ultrasound, a needle was inserted into the area of suspected infection and some fluid was aspirated. It appeared to be pus and was sent off to the lab to be cultured. Hopefully, something will grow out of it and be identified so the infection can be targeted specifically, rather than being treated with broad spectrum antibiotics.

The JP drain (http://en.wikipedia.org/wiki/Jackson-Pratt_drain) was placed, secured with a couple little stitches and thoroughly bandaged. Any and all drainage is collected in a grenade-shaped bulb at the external end of the tubing. The bulb is uncapped, squeezed flat, and recapped. This creates a gentle vacuum effect which draws fluid down the tubing and into the drain. The whole set-up will be flushed multiple times a day in hopes of disrupting and dislodging any infection.

During the procedure, I had to sit out in the hallway and miss out on all the excitement. Dr. Di Carlo was very kind and came out several times to give me a play-by-play. By the way, I will now only be able to say nice things about Dr. Di Carlo and Dr. Guillot, as it seems they have taken to reading my blog. I'm both honored and intimidated!

Samuel went from radiology up to the PACU (post anesthesia care unit....a fancy name for the recovery room) where he woke up, received some pain medication, and went back to sleep. After a bit, he was rolled back up to his room in pediatrics.

This evening the lab results from the antinuclear antigen test confirmed that Samuel is not suffering from drug-induced lupus....a possible side effect of one of his blood pressure medications. Praise God!! The doctors feel confident that the recent decline in Samuel's condition can be attributed to the flair up of the infection. However, the cause of the infection and the reason for its reappearance remain a mystery for the time being. The expectation is that Samuel will start feeling better soon!

Day 17

Samuel has had a bit of a setback. The fever and nausea have increased. The doctor is exploring two possible causes. The first is that Samuel may be experiencing a side effect to one of his blood pressure medications. We should have lab results tomorrow that will give us more information.

The second possibility is that Samuel has something going on internally at the site of the abscess that was previously treated. An ultrasound this afternoon showed a collection of fluid and a possible thickened bowel wall. It needs to be looked at closer with a CT scan. Since 5:30 this evening, a contrast fluid has been going down Samuel's feeding tube. At midnight, he'll have an x-ray taken to determine if there is enough contrast filling his intestines. If not, they'll add more. If so, they will proceed with the CT scan sometime in the wee hours of the morning.

This will definitely be a long night! Please pray that we would get some clarity and get this boy well!!

Day 16

Two steps forward, one step back. I recognize this dance.

Samuel was down and out with a headache all day today. By 9 p.m. he had a fever and nausea. His white blood cell count has almost doubled since this morning. Blood was drawn for more cultures. Samuel's nausea is pretty severe. The nurse is doing all she can to make him comfortable.

Looks like it is going to be a long night.

Day 15

Well, fix one problem and create another.....

Yesterday, Samuel was started on another drug to control his nausea. The fancy medical term for this kind of medication is called an "antiemetic". At the hospital, instead of saying puke, throw-up, or vomit like ordinary people, they call the stuff "emesis". It comes from the Greek word "emein", meaning "to vomit". Just thought you might need to know this someday.

Anyway, this new antiemetic did a great job of curbing Samuel's nausea. Unfortunately, it came with a very unpleasant side effect. Despite being exhausted last night, Samuel had a difficult time settling down to sleep. His legs hurt and they just didn't want to be still. This morning, the restlessness only got worse. It was physical and mental torture for Samuel. He was quite distraught.

From Samuel's description of what he was feeling, it sounded to me like restless leg syndrome. I did some quick reading about RLS and came up with several possible causes that could apply to Samuel....iron deficiency, kidney failure, bleeding from the stomach, and use of some antiemetic drugs. I went to brainstorm with the pediatric resident and while waiting for him to finish a phone call, the doctor that has been working with us on Samuel's pain management plan just "happened" to arrive. I was able to share with him my observations and newly acquired information. He said he needed 10 minutes to do his own research and would come down to the room. Well, it only took him about 5 minutes to decide that Samuel was experiencing a side effect from the Compazine (Prochlorperazine) that he had prescribed yesterday. Thankfully, Samuel hadn't yet had his evening dose. Instead he was given pain medication and Benadryl and soon had significant relief. We were able to spend a pleasant evening watching a movie (thanks again, Ryan!) and even played a board game together!

Some other nice things that happened today....

This morning we moved from our tiny little room to one that is a tad bigger. It will still be a tight squeeze if all the girls come for a visit, but I'm grateful for the extra elbow room.

Speaking of visits, we had a nice one from Grandma Peach and Grandpa Ed today. They brought us a portable Sunbox light that we can use in our room. Samuel and I haven't had any direct sunlight for 2 weeks. I'm eager to get refueled! They also brought me some good food! Thank you!

The other exciting event for today was that I was able to do some laundry in the Ronald McDonald Family Room. Not too exciting for you maybe, but after so many days in the hospital, hot showers, hot food, and clean laundry rank pretty high on my top 10 list. This most recent hospital stint began back on December 6th when Samuel came to the hospital for a kidney biospy which was followed by a nephrectomy the next day. In the last 32 days between December 6th and January 6th, Samuel and I have slept in our own beds only 3 times. That many days away from home causes one to be immensely grateful for the basic amenities.

Speaking of beds, I would truly be insane by now except for the kindness of our dear friend, Mrs. Knox. Very early in this hospital stay, she gifted me with an air mattress and pump. My nights are often short and interrupted, but when I am able to sleep, I sleep very comfortably! Thank you, Katherine! I am forever grateful!

As I type this, Samuel is sitting in bed eating some chicken soup. Wow! We have really made some good progress today! We are one day closer to going home! Praise the Lord!

Change of address:
Samuel Smith
Baird 587

Email link: http://www.fahc.org/General_Public/Volunteers/email.html

Day 14

For one hour this morning, Samuel felt well enough to open some mail and read some emails. It was one short, precious hour. The rest of the day was a bummer. It is hard to see the progress from day to day, but if I look back to last week, we are definitely further along.

One big praise report in the midst of all this difficulty is that Samuel has not had dialysis since Sunday, December 23rd. This is fantastic! His creatinine is high, but holding more or less steady. His blood urea nitrogen continues to inch its way upward, but a high BUN alone wouldn't necessarily drive the need for dialysis. His carbon dioxide level was too low today (meaning his blood is too acidic) but, otherwise, his electrolytes are staying within safe ranges.

We will just have to continue to wait and see what happens.

Day 12....Moving up!

Today was Samuel's big move up to the pediatric floor! It is one giant step closer to home!

The doctors wanted to remove Samuel's drain before sending him upstairs, so after an ultrasound to check the status of the abscess, the drain was pulled from his back. That is one source of pain now gone!

Samuel's fever continues to come and go, but it is less often and not as high. Unfortunately, ongoing nausea and vomiting still contribute to his general misery. Medications and nutritional feeds are being tweaked and changed. A couple days ago, four of the antibiotics were swapped for three others on the chance that the fever is drug-related. So far the change hasn't seemed to make a difference, but the medications can remain in the body for several days. A decision was made this evening to discontinue all antibiotics as it is not clear that Samuel needs them and they could be contributing to the problem. Lots of trial and error! It is very possible that we may never know the real cause of all this trouble. We'll have to be satisfied just to have Samuel get well.

I am very grateful for all the emails that have been sent through the hospital! What great encouragers you all are! Thank you so much!

New address:
Samuel Smith
Baird 591

Day 10....Happy New Year!

Yesterday, Samuel made it a full 24 hours without a fever or vomiting! His big excitement for the day was an ambulance ride to another hospital to have the PET scan. It is actually a mobile unit that is on a tractor trailer truck. It comes to the area once a week on Mondays and every other Tuesday. The Medical Center doesn’t have a place where the truck can be set up so it parks over at Fanny Allen Hospital, one town away. The whole outing took about 4 hours. The scan showed no sign of a bone infection. Praise the Lord!


For New Year’s Eve, he ate some food for the first time in many days and watched some fireworks from a hospital window. It was pretty exciting to see him sitting up for a few hours. Unfortunately, the fever and vomiting returned in the morning.

Samuel spent the first day of the New Year sleeping. He is back to not eating and is too weak to walk the halls. We pray that his body will use both the rest and the medicine to continue the healing process.