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!
Friday, May 23, 2008
Tuesday, May 20, 2008
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.
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.
Monday, May 19, 2008
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!
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!
Saturday, May 17, 2008
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!
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!
Subscribe to:
Posts (Atom)
Posts
