Elijah Update (April 19)

Dear Friends,

Since I last wrote we have had some very nice days with Elijah. Joel left for Ness City Sunday evening and Joel's mother, Grams, came to stay with Elijah and Judy Monday afternoon.

Grams stayed up with Elijah on Monday and Tuesday night. It is hard to do, miss a night of sleep, but it did give her some special time with Elijah. Grams is very good at singing, talking, and reading to Elijah. Elijah is the only one who gets to hear Grams sing. She stops when anyone else comes into the room. Her songs are just for Elijah.

During this time with Grams Elijah has been reaching for and grabbing small items that he can get his fingers around. The chest/abdomen shunt seems to be working and most of the time Elijah doesn't mind us pumping it.

On Wednesday the doctors decided it was time to remove the right chest tube and his central line. They took out the tube because the shunt is working so well and they took out the central line because it was starting to be problematic and they decided that it is time to start giving him formula again. Elijah still doesn't want to suck so we are feeding him with a feeding tube.

Elijah seemed so happy to be rid of the central line and the chest tube. I'm sure it makes him feel much more free.

Grams returned to Ness City and Joel returned to Wichita on Wednesday evening.

Today, Thursday, started out very good. Elijah was wide awake in the morning and the surgeon was excited about the fluid in Elijah's chest. She took the left chest tube off "suction" so it will drain just when there is a lot of fluid. We thank and praise God for this exciting improvement.

We have been giving Elijah some formula by mouth. He doesn't eat much and sometimes he has trouble keeping it down. We talked about this and his irritability with our doctor and the similarity to his actions before or during his brain hemorrhage so the doctor ordered a CAT scan. The scan showed an increase in fluid in his brain so the doctor "tapped" the reservoir that is on his head with the shunt that goes down into his ventricles. You can see the bump the reservoir creates on the top left side of Elijah's head. It really isn't very visible. Anyway the doctor tapped and drew out 10 cc of cerebral-spinal fluid (CSF). We were amazed at how clear the fluid is now. It is supposed to be crystal clear and it almost was. The last time the CSF was drawn it was as darker than weak tea. This is a wonderful reason to Praise God. This shows that the previous closed off drain tubes from the brain to the spinal column has been opened and the fluid has been flowing freely and there is no blood clot in the brain. The doctor suspects that some breaking down blood clots from his blood vessels may have clotted the CSF tubes. But they should break down quickly and be destroyed. The CAT scan also showed that there has been no more hemorrhaging.

Elijah responded well to the tapping initially, but then became irritable again. He just doesn't seem comfortable, able to sleep easily, and still doesn't want to eat. As I write this I am very thankful for all that God has done for our son, but I am sad that Elijah is acting so sick right now. It is so hard to see the end right now. I'm glad I don't have to see the end just know that God is in control and he knows what is best for Elijah and will see him through this.

After supper tonight Judy was holding Elijah and he became very irritable, similar to the way he acted previously after a CSF tap so we put him back into his crib. Elijah just wouldn't be calmed so Judy fixed him a wee bit of warm formula. At first Elijah had a hard time drinking, but then he gobbled up the formula like he thought it was the best stuff in the world. After he finished that Judy made him a wee bit more. Again he had trouble starting but then drank it all down. Elijah was much more calm after this and seemed to rest peacefully.

That was how we left Elijah after praying for him. So we will see how the night goes.

Judy's mom arrives tomorrow afternoon. We are very excited to see her again.

Thank you so much for praying and praising God for our Little Man.

Joel, Judy, and Elijah