Notes of encouragement needed

While the doctors focus on Samuel's physical health, my main job is to tend to his emotional well-being. While I do have some other important jobs like manning the throw-up bucket, fetching water, and turning the fan off and on, mostly I am just here for him. I am his advocate when I know what he wants and his voice when he can't speak for himself. I try to be his encourager....to help him see beyond this time and place....to find things to look forward to.

I am anticipating a time when Samuel's illness will lessen and his discouragement will increase. To help him get through this time ahead, I'd like to ask some of you to consider sending Samuel an email through the hospital's website....

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

I am told that the volunteers will print your note out on nice paper and deliver it to his room. You'll need to include the following information at the beginning of your email:

Samuel Smith
M315 PICU
Your name

If you'd prefer to snail mail him a note, the address is:

Samuel Smith / M315 PICU
c/o Fletcher Allen Health Care
111 Colchester Avenue
Burlington, VT 05401

I'm sure it would lift his spirits to know that many people are thinking of him and praying for him. With the Lord's help, and support from each other, we will get Samuel through this.


Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.
2 Corinthians 1:3,4

Day 8

Here's the good news for today:

• Samuel is not any worse.
• He does not have diffuse alveolar disease. Thank you, Lord!
• A change in the pain management plan is allowing him to be more comfortable.
• His transplanted kidney is holding steady - no dialysis since last Sunday.

Here's the bad news:

• Samuel is not any better.
• The doctors still don't know what he has.
• He is requiring extra pain medication to be comfortable.
• His transplanted kidney is not working as well as it needs to.

Dr. Guillot's plan for the next 2 days includes:

• Keep his blood pressure under control.
• Keep him as pain-free as possible.
• Keep his fevers from spiking.
• Continue to wait for cultures to grow from yesterday's bronchoscopy.
• Continue to monitor his liver function.
• Continue to monitor his immune suppression. Make adjustments as necessary.
• Run additional urine and stool tests.
• Decrease the amount of Nephro (the nutrition he receives through his feeding tube) in hopes his severe diarrhea will diminish.
• Add 2 more antibiotics to the regime. Rats! Samuel is now on 8 different antimicrobial drugs.
• Add probiotics to his Nephro. Yeah!!
• Change some PO (by mouth) meds to IV in hopes of better absorption.
• Have PET scan done on Monday.
• Start working on possible drug fever angle, if no improvements or new information from cultures by January 1st.

So....that's where we are for today. I am grateful for the specific list of plans that Dr. Guillot shared with me this morning. Knowing the plan makes the waiting a little easier. We are all impatient for some kind of resolution.

Day 6

Samuel has continued to suffer from fever and nausea over the last few days. Given that he is on 7 different anti-infectious drugs, it is a mystery why the fevers are still happening. "I don't know why" continues to be the response I hear again and again from the team of doctors. They are as frustrated as we are. One doctor described Samuel's case as "intellectually untidy". I thought she was describing my house! :)

Yesterday, the interjugular Quinton catheter was removed from Samuel's neck. The doctors want to eliminate as many possible sources of infection as they can. When/if Samuel needs dialysis in the future, he will have another catheter put in.

Samuel is being fed through a feeding tube that goes from his nose to his jejunum. I had to do a quick anatomy study to learn where that part of the small intestines is....stomach, duodenum, jejunum, ileum, large intestines, etc. Last night the feeding tube stopped working. This morning Samuel and his bed were wheeled down to radiology to have a fluoroscopy done (something like an x-ray in real-time). They could see that the tube was kinked at the far end. They inserted a tiny wire down the feeding tube and were able to unkink it.

Other activities for today included a white blood cell nuclear medicine scan and a CT scan. The WBC scan involved combining some of Samuel's blood with a radionuclide and then injecting this now radioactive blood back into his body. The white blood cells will congregate in any areas of infection. The photon energy that they emit shows up as bright white areas that the gamma camera can record. Two scans were done in a 4-5 hour period. Samuel's lungs were lit up like a 100-watt light bulb. The tentative diagnosis is diffuse alveolar disease. I don't yet understand it well enough to explain it. Samuel will have a bronchoscopy in the morning. He will be sedated for the procedure. Lord willing, the results will provide more information, including whether the diffuse alveolar damage is caused by a bacteria, virus, or fungus. This WBC scan also confirmed that the pockets of fluid that Samuel has in his lungs are pneumonia. Strangely, he is missing the cough and breathing difficulty that one would normally associate with pneumonia. He does have fever and chest pain. We will just have to wait for more answers tomorrow.

Encouragingly, Samuel had about an hour this evening when he sat more upright in bed and watched a movie (thank you, Ryan!). Unfortunately, that was followed by his fever and nausea returning with a vengence. At the moment, he is well-medicated and appears to be sleeping comfortably.

Tomorrow looks to be another long day.

Day 4

Samuel's fever is back and, once again, there are more questions than answers. The doctors are doing more blood cultures and have ordered an ultrasound. In addition to the all-over body aches from the fever, Samuel is in a lot of pain from the drain in his back.

I am needing to be reminded of a time when Samuel was healthier and happier so I have included the photo below. I have missed seeing his dimples!

Samuel and his nurse friend Betty
October 30, 2007
Day before his kidney transplant

Merry Christmas from the ICU!

Sorry to leave you hanging part way through my last post! I am just now able to get on the computer. We have had three very long, difficult days.

When I last posted on Sunday morning, I was in dialysis with Samuel. I had brought him into the Emergency Room at 6:30 a.m. because he had a fever of 103. Samuel was so weak that Tom had to carry him out to the car.

The doctor had called ahead to the ER so they were ready for us when we arrived. They knew what bloodwork the doctor wanted to be done so they got right to work. From the ER, they moved Samuel up to the pediatric floor. We were only there for a few minutes before the lab results were known. They promptly rolled his bed back out and down one floor to dialysis. While Samuel dialyzed, the doctors pow-wow'ed. They did not know what was causing his fever and making him so ill. They decided he needed to be in the ICU, so that was our next stop.

The rest of Sunday was spent running labs, starting blood cultures, doing an upper gastrointestinal study, and dosing Samuel with medication after medication. His fever went up and down from 102 - 104 degrees and he insisted on having two fans blowing on him constantly. He was delirious at times and spent the night tossing, turning, and throwing up.

Monday morning arrived with no answers. Samuel was not improving and the doctors were stressing. One doctor told me, "It is very hard for us doctors to say, 'I don't know', but that is the only answer we can give you right now."

They sedated Samuel and did a spinal tap, collecting four samples of spinal fluid to test. They also placed a feeding tube up his nose, down his throat, through his stomach, and into his small intestines. This will enable Samuel to receive the nutrition that he desperately needs.

The need to do a CT scan became more urgent as every other test failed to provide an answer. The doctors were hesitant to do the CT scan because the contrast dye that is used could damage Samuel's already compromised kidney. In the end, they decided that the benefit of finding out what was going on in Samuel's abdomen outweighed the risk of giving him the contrast. They made a plan to help his kidney flush out the dye and ordered a CT scan.

The scan showed that there was a pocket of fluid in the place where Samuel's right kidney had been before it was removed back on Dec. 7th. The pocket looked suspiciously like an abscess and measured 2" x 1" x 1". Finally, we had some answers! They arranged with radiology and anesthesiology to do the procedure of aspirating the fluid and placing a drain, if necessary. The scan also showed that Samuel has some pockets of fluid in his lungs. This is not something that they will do anything about....time and antibiotics should take care of it....but it could explain the pain that he is having in his chest.

At 6:00 p.m. on Christmas Eve, Samuel and his bed were wheeled down to radiology. The procedure was done under general anesthesia, which meant he had to be intubated. For the second time that day, Samuel was sedated. During the procedure, they confirmed that the fluid was pus and drew out as much as they could. They placed a tube in his back which will allow the abscess to continue draining. Once back in the ICU, the nurse did her best to keep Samuel comfortable and able to sleep during the night.

Christmas morning brought both new hope and new pain. Samuel no longer had a fever, which was a huge relief to everyone. Unfortunately, Samuel is now "feeling well enough to feel miserable." He was so sick and feverish on Sunday and Monday that he has very little knowledge of what went on.....thank you, Lord! Today he is very aware of what is happening and is overwhelmed with pain and disappointment. It has been a difficult day for both of us. Samuel requested that I not speak the words "Merry Christmas" in his presence and he wasn't feeling up to seeing any of our 4 visitors today. He is very sad to be missing the Christmas celebration that we traditionally share with our friends, the Bassettes. Tom and the girls are there without us today. It was a difficult decision to separate the family on this special day, but we are trying to keep things as "normal" as possible for the other children.

I am grateful for the friends and family who took the time to visit or call today. It helped me feel a little less alone. Two friends also brought me some wonderful food! Thank you for feeding both my spirits and my stomach!

It's time to end this long day and dream of better things for tomorrow. Merry Christmas to each of you!

Back to the hospital....twice!

Well, our time at home was short-lived. On Thursday 12/20, per the doctor's orders, I brought Samuel to the ER. He had had a low grade fever since leaving the hospital on Tuesday evening. He was just wiped out. His lab results showed that he was really needing to be dialyzed. If you remember, his ash split catheter was removed back on 12/12 when he was in the ICU with a fever. He has not had dialysis since the 12th. In order for Samuel to be dialyzed, he needed to have some type of access. They couldn't put another ash split catheter in on Thursday because he has been on anticoagulants that would make the risk of bleeding too great. So on Thursday evening, they put in an IJ Quinton catheter instead. It is very similar to the ash split except that it goes directly into the jugular vein in the side of his neck. It is very uncomfortable. Samuel was dialyzed on Friday morning..........

Gotta run.........I'll finish this post later. Bottom line is we came back to the ER at 6:30 this morning. We're currently in dialysis, but on our way to the ICU. Samuel is quite ill, but the doctors don't know why. They are running every test they can think of. I'll write again when I can.

Please pray.

Samuel is home!

After 13 days in the hospital, Samuel and I are back at home! We are still in wait-and-see mode with the new kidney. Samuel's numbers are continuing to creep upward, but he does not need dialysis at the moment. We will have a better sense of where we are headed after his clinic visit at the hospital on Friday.

Medication trivia....Samuel currently takes 60 pills a day. In addition, he receives 2 injections - 1 daily for a short time, and 1 weekly.

Tomorrow I head back to the hospital with Katie for her dialysis session. Afterward, we are meeting with the transplant team to discuss plans for Katie. Like Samuel, she also needs to have her native kidneys removed. The question is when. Before the transplant? Two weeks before or a few days before? At the time of transplant? There are several options. The trick is to figure out which will be the best one for Katie. She is feeling very ill and has decided she can't manage another semester of college in her present condition. She'd like to have a transplant as soon as possible and then restart school in the fall. We still need to find a donor for Katie.

I'm having a hard time keeping my eyes open as I type this so I should sign off. Can't wait to sleep in my own bed!!

Snowy Sunday

Today was a quiet, restful day. The snowstorm has kept many hospital volunteers and some staff at home. Tom also stayed at home today to dig out the driveway. Samuel and I are feeling a bit insulated from the outside world as we watch the snowflakes accumulate on the rooftops outside our window.

Samuel has had some good sleep today. The nurses are only checking his vitals every 4 hours, so he has been mostly left alone to sleep. His creatinine is still inching its way higher, but his kidney seems to be balancing his electrolytes and fluids. His red blood cell count is too low and he may need a tranfusion if it doesn't start picking up soon. He did have an EKG and a chest x-ray this morning to eliminate any heart issues as the cause of the chest pain that he is having. He is still receiving fluids, antibiotics, and pain meds via IV. All his blood pressure and immunosuppressive drugs have been switched over to oral meds. He ate a little and walked a little today, so we are calling this progress.

Abby is also a little better.....stable, but not out of danger. Her mom came upstairs to visit us today. It was great to talk and cry together. Abby is an incredibly couragous young woman. Her example helps me to understand that one's illness or condition or handicap doesn't define them. It is something that they have to live with and deal with, but it is not who they are.

On this snowy Lord's Day, I am at peace. I am getting a clearer picture of what it means to have children with a chronic illness. This is the path that the Lord has asked us to walk and I am confident that He will supply both the grace and the strength to do it. He has used (and will continue to use) many of you to encourage us, feed us, love us, pray for us, and walk through this with us. You will be "Jesus with skin on" for us. I am profoundly grateful.

As I read in the book of Psalms today, the testimony of David and the other writers is clear.....the Lord is faithful, gracious, merciful, righteous, and worthy of praise. He will supply all our needs. Blessed be the name of the Lord!

Please pray for Abby!

Abby is a 20-year old friend of ours who we met through 4-H and showing sheep at the local fairs. She is a tenacious young woman who has endured many health challenges, including a kidney transplant 5 years ago. She and her parents have been a great resource and encouragement to us in our own kidney adventure. They are very special people. Abby and Samuel share the same nephrologist and Abby sometimes visited Samuel in dialysis when she would come for a clinic appointment. She just graduated from photography school....an incredible accomplishment

On Saturday morning, Abby arrived at the emergency room very ill. She was eventually admitted to the hospital, but shortly after getting to her room, she was moved down to the ICU....into the very room that Samuel had just vacated!!

Please, please pray for Abby. She is in septic shock. I don't know much about sepsis, but I do know that Abby has some type of infection raging throughout her body, her blood pressure is dangerously low, and her transplanted kidney is at risk. I was able to visit her for a short while. She was pretty loopy from the pain meds, extremely talkative, and keeping everyone in the room well-entertained....so ill, yet so full of life!

I would be so grateful if those of you who have been praying for Samuel would also pray for Abby.

Day 10 - Big Move!

Samuel is out of the ICU!! But first let me catch you up with yesterday's news.

Friday felt like another step backwards, as Samuel was feeling so tired, weak, and ill. He still wasn't able to eat more than a bite or two of food. His nurse that day didn't even ask him to try taking a walk. He was just too wiped. His blood pressure was much too high most of the day despite the 1 IV med and 3 oral meds that he was receiving. The doctors eventually tried a new medication that seemed to do the trick. Some further tweaking will be required.

When Katie came on Friday for dialysis, she brought along Esther, who spent the rest of the day with me in the ICU. We did our best to make up for lost snuggling time. Esther has some pretty strong aversions to the whole hospital scene. She sees what is happening to Samuel with the knowledge that she herself will have to go through a similar experience. I am very proud of her for coming to the hospital. It was nice to have her company while Samuel slept so much.

Saturday morning started with a visit from our nephrologist and our surgeon. They really are not able to predict what Samuel's new kidney will do. It is working some, but not as much as Samuel needs it to. They expect that he will be able to go home on Monday or Tuesday. That was good news! Esther's 12th birthday is on Wednesday and we certainly don't want to miss it!

Later in the afternoon, we packed our bags and bid farewell to the great nurses in the ICU. We took a short trip two floors up and arrived at the pediatric department. The Child Life staff had done a terrific job of decorating Samuel's new room. It was colorful, festive, and inviting. They had even written "Welcome Samuel!" on the window. We have already met or worked with many of the nurses on the floor, so there were smiles and warm greetings as we arrived. Samuel fell asleep in his wheelchair about 30 seconds after entering the room. Eventually, he woke up enough to climb into bed where he promptly fell back asleep. I unpacked and got us settled into our new home away from home.

Later this evening, Tom and Lydia came for a visit. I haven't seen Lydia in 10 days! She looked so grown-up! While Tom was able to stay with Samuel, I went back down to the ICU to visit a friend. Please read my next blog entry and please pray for Abby!

What a difference a day makes!

After such a hard day yesterday, Samuel made some encouraging progress today. Both the nasogastric tube and the urinary catheter came out. Hurray, hallelujah, and praise the Lord!

The new kidney continues to make urine and is doing an okay job of balancing Samuel's electrolytes, though he had to be supplemented with potassium today. His blood urea nitrogen and creatinine are up from yesterday (after being dialyzed), but are still in a non-criticial range. His anti-coagulation medication is being transitioned from a continuous IV drip to a daily injection and will eventually be given via an oral medication. His blood pressure continues to be a challenge to manage. Everything is being monitored very closely.

Samuel was allowed to start a clear liquid diet this evening. Despite mentioning several times today that he was hungry, he only had a few sips of apple juice and a couple spoonfuls of broth. That is the first food that he has swallowed in 7 days. He is very weak, sore, and tired. He was able to take two walks in the hallway today. That is progress!

His spirits are better today. I wouldn't say that he is cheery, but the hopelessness and extreme pessimism of yesterday are gone. What a relief! Please don't stop praying for Samuel in this regard.

One step forward, two steps back

Today was a lousy one for Samuel. There were some setbacks and some disappointments. He started the day by throwing up, which was a clear indication that he was not ready to have the NG tube removed. He had really been looking forward to parting ways with that tube.

By mid-morning, Samuel had developed a fever of 102 degrees. That started a scurry of activity as blood cultures were drawn, a urinalysis was done, and a chest x-ray was taken in an attempt to discover the cause of the fever. Then, quite unexpectedly, Samuel was told that he would be dialyzed and have his ash split catheter removed. The doctors felt certain that the catheter was the source of the infection and that the risk of waiting for their suspicion to be confirmed by blood cultures in 2-3 days was too great. They wanted it out now. That ended Samuel's hope of being moved to the pediatric floor today.

This is an ash split catheter. It is a central line that is used for dialysis. It is tunneled under the skin in the chest, goes up and over the collar bone, and enters the superior vena cava at the neck. The end of the catheter is just at the entrance to the right atrium of the heart. The red and the blue ends have caps and clamps. During dialysis, the blood goes out one port, through the tubing and chambers of the dialysis machine, through the artifical kidney where toxins are filtered out, back through some more tubing, into the other port, and back to the body. Katie also has this type of catheter in her chest.


The sudden news that the catheter would be taken out was the straw that broke the camel's back. Samuel had had enough! So much pain, so many disappointments, so many things out of his control. He was wishing that he could die and be done with the whole mess. You can imagine how difficult it was for me, as a mom, to see him in this state. I did my best to listen, affirm, and reassure. Betty, one of Samuel's special dialysis nurses, came to the ICU with the big, portable dialysis machine on wheels. Betty had dialyzed Samuel his very first time back in March. Today was his 117th dialysis session. Wouldn't it be great if it were his last, also done by Betty?

After a 3-hour dialysis run, a team gathered at his bedside to sedate him and remove the catheter. It was a quick procedure. While he was asleep, they also placed two IV's in his right arm. They had previously been using his ash split catheter for all his IV meds, fluids, and blood draws. If Samuel should need to be dialyzed in the future, he will have to have another catheter put in.

Joanne Conchieri came for a visit and gave me a wonderful head and shoulder massage. Ahhhh! Tom and Hannah arrived later bearing clean clothes and food. It was a revitalizing visit for me.

At the moment, Samuel is not feeling quite so overwhelmed and pessimistic. His fever is bouncing up and down. There are signs that his intestines are thinking about restarting. The challenge for tonight seems to be keeping his blood pressure below 170.

Currently, it is 2:00 a.m. I started writing this post at 10:30 p.m., but have been running back and forth between typing and meeting Samuel's needs. He seems to be settling in so I will finish this post and head to bed as well. If Samuel can sleep comfortable for the next 4 hours, so will I. The morning routine begins again at 6 a.m.

We trust that the Lord has good things in store for tomorrow.

Tuesday Night Update

I have a few minutes to type while Tom is sitting with Samuel....

This is day #6 in the hospital, day #5 in the ICU. Samuel is doing a little better each day. His new kidney is making urine and doing an okay (not great) job of cleaning his blood. His creatinine is climbing (not a good thing), but at least it is not skyrocketing. Samuel was able to skip his regularly scheduled dialysis session on Monday and again today (picture me jumping up and down with joy!). He will probably be dialyzed tomorrow. There is concrete evidence that the kidney is healing and the expectation is that it will, with time, improve in function. For now, it may need a little assistance in the form of dialysis.

For the last few days, the doctors have been concerned about several issues with Samuel:

1. He was "too wet" and had excess fluid around his lungs. Slowly, but surely, the fluid has been pulled back into his vascular system and is being excreted. This is no longer a concern. Praise God!

2. Samuel has a nasogastric tube that goes up his nose, down his throat, and into his stomach. His intestines are not working and the tube drains out bile that collects in his stomach. You can imagine that Samuel does not like this tube. His throat is very sore, it hurts to talk, and it is difficult to understand what he is saying. The NG tube has been in place this long because Samuel's stomach has been bleeding. The doctors are treating him with a proton pump inhibitor drug to reduce the production of gastric acid. This seems to be working as today he had very little drainage. Thank you, Lord!

3. The doctors are continuing to treat Samuel's clot with an IV drip of heparin. This made for an exciting time today when his arterial line was removed. Because Samuel's blood is very thin, it took a stack of gauze pads and a bit of time for the bleeding to stop. We are playing a waiting game with the clot. If the new kidney were working well enough that Samuel no longer needed dialysis, they would remove the catheter that has the clot attached to it and that would be the end of it. Because he is not quite ready to give up his dialysis catheter, they will likely send him home from the hospital on an anti-coagulant medication like coumadin. Lord willing, this will keep the clot from growing and completely blocking the blood flow through the vein.

Samuel's accomplishments for today include walking in the hall twice and sitting in a recliner chair. Other than that, he spent the day sleeping. It seemed more like an exhausted-body-trying-to-heal type of sleep rather than a drug-induced-stupor type of sleep.....hard to explain, but I found it encouraging.

Tomorrow's plans include having the nasogastric tube removed and probably moving from the ICU up to the pediatric floor. After so many baby steps, these will be some exciting milestones.

Please pray for Samuel as his frustration level is very high. He is in a lot of pain and it is difficult for him to communicate. At the moment, it is hard for him see past the pain and disappointment. There are good things happening. Please rejoice with us!

Surgery for Samuel

Well, lots has happened since I last posted on Wednesday. It is late at night and I am sleep deprived, so I'll try to make this concise and coherent. I am typing this post from a computer at the nurses' station in the ICU where I am staying with Samuel. Here's why.....

Samuel was in the hospital on Thursday for his scheduled biopsy. While he was in the recovery room, it was decided that his remaining native kidney should come out sooner rather than later. We have known for a while that this would be a possibility. I'll try to explain why in another post sometime. Samuel's left kidney was removed back in September. At that time, the tentative plan was to take the remaining right kidney out when he had his transplant. The surgeons later decided that doing the nephrectomy (kidney removal) during the transplant surgery would mean Samuel would be on the operating table for too long. Given what happened during the transplant at the end of October, this was a very good decision....but that is another story.

So....on Thursday evening while Samuel was recovering from the biopsy, the surgeon made arrangements for him to have his right kidney removed the very next day on Friday. Samuel was moved from post-op to the pediatric floor late Thursday to spend the night. At 6:00 a.m. he was dialyzed and at 1:30 p.m. he went into surgery. At 4:00 p.m. the surgeon met with me to say that he would not be able to remove the kidney laparoscopically as planned. It seems Samuel had significant bleeding after the biopsy (one of the risks). The blood in his peritoneal cavity was obstructing their camera's view and had irritated his bowels, making them distended. This swelling restricted the space in which they had to work. To complete the surgery safely, they needed to abandon the laparoscopy and make a large incision in the center of his abdomen. It was slow and tedious work as they had to "unstick" the many adhesions caused by his 2 previous surgeries. They had to place a stitch here and there on his intestines where they were bleeding after being unstuck. Samuel was in surgery for 6 hours and received 3 transfusions that day. We met up with him again at 8:30 p.m. in the ICU. That was Friday night.

It is now Saturday night and if I don't finish this soon, it will be Sunday morning. Samuel is one hurtin' pup. Some things are happening with him that the doctors don't quite understand yet. This evening's bad news is that Samuel has some clots in a vein in his neck where his dialysis catheter is. This creates some very real dangers for him. They will begin dosing him with heparin to keep the clots from growing larger. Unfortunately, they cannot heparinize someone who has an epidural, so Samuel's was removed. This will make managing his incision pain a bigger challenge. Please pray that he would be comfortable enough to sleep and heal.

This is the short version of what has been happening in the last 3 days. There is so much more I could write about, but I haven't the brain for it and you would surely be bored with all the medical details. I would like to finish by sharing with you some very good news...

Because Samuel ended up having an open nephrectomy, the surgeons were able to take a good look at the new kidney. They say it looks great! They are feeling confident that it will eventually work enough for Samuel to discontinue dialysis. They don't know how long it will take to reach that point, but they feel sure that Samuel's dialysis days are numbered. The new kidney is actually making urine (hallelujah!!) and Samuel's blood pressure is being managed with only one drug instead of 3.

At this point, we have no idea how long Samuel will need to be in the hospital. There are many hurtles to overcome in the days ahead. We covet your prayers.

Tests today and tomorrow

Today Samuel had another nuclear medicine scan. It is also called a flow study or profusion study. This is a test that tells us how the kidney is functioning. A radioactive solution (MAG-3 and Technetium-99m) is injected through Samuel's catheter into his bloodstream. A very large gamma camera then takes a series of 124 pictures over 30 minutes - 1 picture every 15 seconds - to record how the radionuclide is taken up and excreted by the kidney. Samuel's job is to lie very still. The amount of radioactivity in the syringe is measured before injection and then again after the injection to determine exactly how much he received. The pictures are processed and many calculations are done to give us specific information about the function of Samuel's new kidney.

Samuel had his first nuclear medicine scan done on November 8th - 8 days after the transplant. That study showed less than 1% function. Scan #2 on November 12th showed a 15% uptake, but very little excretion. We don't yet have the test results from today. I'll write again when we know more.

Tomorrow Samuel is having a biopsy. This is to check for any signs of rejection. The biopsy that he had 3 weeks ago showed no signs of a problem. Praise the Lord! One-third of the sample that was taken was dead tissue and 2/3 was "viable and regenerating" tissue. That one small sample isn't necessarily representative of the whole kidney, but it was still good news - the first we've had in a while.

I'll let you know what we learn from tomorrow's biopsy. Till then.........

Genetic mutants

Please bear with me while I learn the ins and outs of blogging. Today I'd like to experiment with adding a photo to my post.

So....here is a real treat for you. A picture of the happy couple. The mom and dad of this crazy clan. The two genetic mutants who are responsible for this mess that we are in....

Tom and Nancy

Here goes..........

I have been inspired to start blogging about our kidney adventure. I hope that it will serve to keep folks up-to-date on what is happening. It can be a way to communicate both prayer requests and praise reports. Hopefully, I'll be able to make the time to actually do it!