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.