10/27/10

Matthew is asleep; sleeping so peacefully. That has been one thing I have furiously protected while in the hospital. The nurses have been told that midnight-6 am is sacred. No interruptions, no vitals. Everyone has been so good; if they need to do something in the middle of the night, they are so quiet, if fact I don't even hear them. Matthew has kept his schedule so nicely; which is something that doesn't always happen in the hospital.

Today, Matthew's MRI was scheduled for 2:00 pm. Around 9 am the anesthesiologist came to talk with us. He said we were going in 10 minutes. I was a bit shocked but happy to get the MRI over and done with. Matthew was back around 12:00 and did wonderfully for the procedure.

Here's the updates for the day:

Urology: did not come through today. Kidney US was fine as reported by the hospitalists (they are like the general pediatrician while you are in the hospital). We don't need anything further from them.

Pulmonology: did not come through either. His CT scan was okay from yesterday, and we have started Matthew on CPT (chest percussion therapy), which basically is a machine that is put over his lungs and vibrates. It helps shake the gunk out of his lungs so he can cough it up, thus helping prevent a pneumonia. We will go home with one of these devices.

GI: we started Matthew's feedings back up after the MRI, and GI is starting a changing out a med with a new medication that will hopefully help with the vomiting cycles he's been having (called "cyclic vomiting") This med comes highly recommended by his Minnesota epilepsy doc. He says he sees this help a lot of kids that have similar issues as Matthew. We also adjusted calories for Matthew with the help of the hospitalist, as she feels he is getting too many calories; and gaining weight too quickly (first we can't gain weight and then we gain too quickly; geesh)

Neurosurgery: The resident came through this afternoon. The hospitalist had me come out to the desk to read the MRI while we were figuring out calories for Matthew, and the result came back saying he had a tethered cord AGAIN!! This would explain why he hasn't been able to empty his bladder again, and is having "poopy" issues. His symptoms mimicked those he had this spring prior to his tethered cord surgery. I was told by the neurosurgeon last week the recurrence of his type of cord tethering was "virtually medically impossible". Leave it to Matthew. The resident stated he would relay this information to our neurosurgeon, Dr. P, and get back with us. I waited all afternoon, with no site of Dr. P. The nurse finally called the resident around 7pm and he told the nurse that Dr. P would be by in the morning, but that he did not agree with the radiologist's findings, and will maybe do a "prone MRI" (Today's MRI was a "sacral and lumbar MRI".) I was really hoping to see the neurosurgeon today and get surgery scheduled ASAP; as in tomorrow. I'm not sure what will happen with this tomorrow.

From a vomiting standpoint, Matthew has done well. No vomiting for 48 hours and he is at his full strength of feedings for home. The hospitalist asked me today if I would be okay working on upping the rate from home; as his current regimen he is off the pump for 6 hours during the day. I excitedly said yes. So if it weren't for the whole bladder/questionable tethered cord thing, I think Matthew would be ready for discharge tomorrow. But I also want to get to the bottom of the urinary retention stuff too.

This evening, Steve went to parent teacher conferences, and I got to join in via speaker phone from Steve's phone. It was wonderful to hear all the good things my kids are doing at school. Their grades are good, and the teachers all had such positive things to say about them. It made the end of my night great!! Steve took them out for ice cream afterwards to celebrate. I am so proud of my kids!

As I sit here tonight, I am reminded of where were a year ago. Today started the anniversary of Matthew's 40 day stay in the hospital last year. That was a very scary, scary time for us. Tomorrow will be the day 1 year ago when Matthew was emergently taken to the PICU and put on a ventilator because his seizures would not stop and he was so sedated that he couldn't breathe on his own. I went back today and with tears in my eyes, read about our day, and relived it in my mind. What a scary time. Even though we are in the hospital, I am so glad it feels different this time. SO GLAD.
Here is a link for those of you who would like to re-read (or read for the first time;) the ordeal that started 10/27/09