12/21/2009

Today was a better day. A much better day.

I got to the hospital JUST in time for rounds. I like that I'm getting into a routine with Dr. Engle where he kind of gives me an update as far as what to expect for things coming up on the horizon. We have our little chat and update and THEN the nurse practitioner gets to do her rundown of the last 24 hours and recaps the meds and different gas and blood levels, all the technical stuff ;). Usually if I am unable to make it to rounds, I can speak face-to-face with either the NP or doctor sometime that afternoon as they may walk through our module. Even if they are on a mission, they are more than willing to take the time to answer questions and tell you any concerns they have for your child at that time.

Malachi's heart rate was much lower today. Instead of the 220 range that he was in, he was in the 90-110 range. He was a SLEEPY boy. Understandable though. Yesterday they decided to do the central line around 11:15a or so. They stopped the feeds at that time. Actually, they were 15 minutes or so into his 11:00 feeding and they stopped it and pulled the formula back out. POOR GUY!!! He was NOT happy. Even a dose of Versed wasn't able to sedate him at that time. He was hungry all day and probably didn't sleep for more than 10 minutes at a time. Today was a catch up day. He was out all morning and I loved every minute of holding him in my arms.

Even though his heart rate is back to a normal range, cardiology is definitely not out of the picture. Dr. Engle is concerned that his heart may be contributing to his low oxygen saturation levels. Cardiology is to take a look at the last couple echocardiograms to see if they can get a better look at the blood flow in the sano shunt that they placed during open heart surgery to take blood from the heart to the lungs. If they cannot get reliable enough info from the echo, then they will most likely schedule a cardiac catheterization for a more detailed analysis.

While he is intubated, they did an MRI of his brain today. They are looking at the brain as a whole and also the brain stem more specifically. Dr. Engle also stated that he is curious to see the texture of his brain and whether it has the proper peaks and valleys, or if it's somewhat smooth. We will hopefully get the results of this tomorrow or the following day. Also, at 8:30 tomorrow morning, he will have a upper GI small bowel follow through to evaluate his reflux and other digestive system things. If his reflux proves to be a problem, they will be doing a Nissen fundoplication with the gastrostomy tube. Also, before he is completely anesthetized for the g-tube surgery, they will do a flexible bronchoscopy to evaluate his ability to move air through his airway. If this proves to be a troublesome area for him, then while he is in surgery at that time they will do a tracheostomy to help him breathe.