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.