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!