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!