I would love to meet whoever coined the phrase “just take one day at a time” and put them in our shoes for 48 hours. I would be curious to see if they would modify it for those with disabled children. Let me give you a brief update of all that has happened over the past two days.
Yesterday we were out the door at about 7:45 am to get James to an ultrasound of his spleen at 9:00. The doctors wanted to make sure that his spleen was okay and wasn’t a contributing factor to some of his other issues. So, what exactly does a spleen do? It acts as a filter for the blood in your body by only allowing healthy blood cells to pass through. Blood cells that are detected as being unhealthy are broken down and removed from the body. Another function of the spleen is to help fight certain kinds of bacteria that cause meningitis and pneumonia.
The technician that read the ultrasound noted that his spleen “borderline enlarged”, and also noted that “for a 3-month-old patient, the spleen should measure no larger than 6.0 cm in length; for a 3-6-month-old patient, the spleen should measure no larger than 6.5 cm in length”. James is currently 3-1/2 months old and his spleen measured 6.1 cm, so the doctor didn’t consider his spleen enlarged.
After the ultrasound, we had a meeting with the neurologist at 11:00 to discuss this new little “quirk” that James has been doing lately. It’s hard to explain, but he throws his arms up, and his head jerks from right to left. After this happens, he cries like it upset him. Sometimes it’s just one or two of them and then he stops. Other times there is several of them. The neurologist wants to start with an EEG to see if we can catch one of these “quirks” as they are happening and to rule out infantile spasms. He gave us a brief description of what infantile spasms are, but didn’t want to go into all of the details about them until we knew for sure that they are infantile spasms. Stacy and I did a little bit of research on infantile spasms when we got home to find out more about them. Children’s Hospital of Pittsburg probably had the best description:
“Infantile spasms (IS), also called West Syndrome, is a rare type of epilepsy in children. This syndrome is considered an epileptic encephalopathy or severe brain disorder. Without early treatment, IS can cause problems with your child’s:
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- Cognition
- Learning
- Development
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The seizures with this type of epilepsy (called “spasms”) look like quick body jerks, sometimes with head drops or extended arms. These seizures are brief, but they can occur in clusters. At first, many parents think these spasms may be colic, reflux, or “sleep jerks” until they become more severe or frequent. These seizures begin in infancy, around four to six months of age. They can occur in children both with and without known brain injuries or other health problems. With IS, you may notice your child is:
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- Smiling less
- Less interactive and engaged in their environment
- More irritable
- Unhappy
- Inconsolable
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Doctors often confirm the diagnosis of infantile spasms with an electroencephalogram (EEG) test. An EEG shows a specific type of abnormal chaotic brainwave pattern called hypsarrhythmia.”
We have an EEG scheduled for Friday so we’ll have to wait a few days to find out if these “quirks” are infantile spasms or not.
Last night was a little rough for James…and for us. We had been doing a lot of suctioning, but he just kept sounding gunky. Around 10 pm Stacy called home health and asked for a nurse to come over to listen to his lungs. We wanted to make sure this gunk was not going into his lungs. The nurse said he sounds congested, but his lungs sound clear. Stacy and I worked in shifts watching over James. He was on about ½ liter of oxygen just to help keep his sats up. He seemed to sleep pretty peacefully, even with us frequently suctioning him.
This morning we went to see the pediatrician to have him listen to James. His lungs are still clear. His nose is just so stuffy! I guess we will just keep on doing what we’re doing and try to keep him out of the hospital.
So, going back to the first paragraph, how are we supposed to “take it one day at time” when there is so much going on in a typical day? Is every day going to be like this? Does it get easier? Fingers crossed that it does!
