We took Lillian to Kijabe on July 28th for her operation. When we got there a different doctor looked at her MRI and said that he didn’t think that she had a tumor in her spinal cord and sent us for a second MRI of her head and spine. We hurried to Nairobi to get the scans and went back to Kijabe with the results the next day. The doctors told us that her shunt hasn’t been working this whole time. When babies start showing signs of hydrocephalus their heads begin getting bigger because the pressure causes their soft skulls to expand. Now that Lillian is older her skull has hardened and all of that pressure is stuck inside. The doctor explained to me that what they thought was a mass in her spinal cord is brain matter that is being pushed down into her spinal cord due to the pressure. He said that she needs an operation immediately, but because of her breathing problems they couldn’t do it that day because the anesthesia would be too much for her little body to handle. So they sent her for a chest X-ray and said that everything looked fine and sent us home with some medication.
After two weeks her condition worsened quickly. She began having more seizures and lots of difficulty breathing so we took her back to the district hospital in Kitale. She has been there for three weeks and has been on and off oxygen. The doctors originally said that it was pneumonia, but because it is not clearing up are suspecting that it might be related to her neurological issues. The tricky part is that she can be fine one minute and gasping for breath the next. The doctors have been trying their best, but still haven’t found a treatment that works.
One positive thing that I can say about all of these challenges is that so many of the doctors and mothers of the other patients at the hospital have seen God’s power working in Lillian. On Sunday it looked like it was going to be her last day on earth. The doctors tried oxygen and breathing treatments and nothing helped leaving her gasping for breath the whole day and night. Then suddenly on Monday morning she just started breathing normally. Several doctors have told me that our prayers for Lillian are working because they don’t know how she came back from that. Her mother, Elizabeth, constantly tells Lillian how much God loves her and that He has a purpose for her life. Even the mothers of the other patients come up to say that God is with Lillian and is keeping her safe.
Since Monday morning she was doing a bit better and has only needed oxygen once, but is starting to have seizures more frequently. We were told to go back to Kijabe this Sunday so that they can do an operation to replace her shunt. We were hoping to be able to go, but last night and this morning she has been on oxygen again. I called the emergency line at Kijabe Hospital and they told me to wait until her condition becomes more stable and then they will give us a new date for her surgery.
Please keep us in your prayers. Pray for Lillian’s condition to stabilize and be consistent so that her shunt can be replaced. Pray for Elizabeth and Lillian to feel God’s strength, peace and comfort.