Still No Surgery Date

We met with Jereth's cardiologist again today. She is quite frustrated with Primary Children's because they still have not scheduled a surgery date. If we don't hear from them with a date by tomorrow (Friday) she will contact a pediatric heart surgeon from Portland and we may end up in Oregon instead of Utah for the heart surgery.

On a positive note, Jereth is now 9 pounds and 12 ounces (4.4 kg) and Dr. Walker increased his food intake and the amount of his heart medications to match his new weight.

A Little News - But Not Enough

We got a call from Jereth's cardiologist's nurse today. The Utah doctors need to know Jereth's blood type and Dr. Walker did not have it. The nurse wanted us to go to the hospital to get his blood typed, but I was sure that had been done during one of Jereth's hospital stays.

Later the nurse called back to say that St. Luke's had sent her Jereth's blood type - one less poke for our sweet baby boy. At least we know that someone in Utah is thinking about getting Jereth's surgery scheduled or they would not have worried about getting his blood type.

No news is NOT good news...

It's been over a week since our cardiologist told us the doctor in Utah was working to schedule Jereth's surgery, hopefully in February. She has not heard back from the Utah doctor and neither have we, so I'll be very surprised if the surgery happens in February.

On another note, Jereth did very well last weekend, going two days and nights without needing air. Then he started struggling to breathe again, so he's back using air assist. He had a couple of really tough nights, but seems to be doing fine again.

Surgery News

Jereth without the tubes and wires... for a few minutes.

We met with Jereth's pediatric cardiologist on Thursday. She said there is a cardiologist with Primary Children's that is taking the lead on getting Jereth's surgery scheduled. His goal is to have the surgery done by the end of February. Our doctor here said it will more likely be early March. We're hoping to have a definite date soon -- again.

Heading Home Again

We're heading home today. Jereth will need continued airway support when he sleeps, but can be without it while awake. We'll use the oxygen monitor to decide when we can decrease the air flow and when it needs to be increased.

We'll be following up with the cardiologist on the 10th, but according to the PICU doctor the echocardiogram (ultrasound of the heart) showed that the hole in the atrial wall is decreasing, but the bigger hole in the ventral wall is the same size. Dr. Walker should have something more about a date for the surgery when we see her. I'm hoping it will be a definite date, but won't be too surprised if there is still more "wait and see".

Getting Closer

Airway support was off for most of the morning and Jereth was able to keep his oxygen levels up where the doctors want it. Around noon he had the echocardiogram he would not settle down for on Monday, and the sedation hasn't worn off yet.

While sleeping his oxygen levels dropped and stayed down for several minutes so he is back on air support - right now it's at 1/2 liter per minute, but he still keeps setting off the alarm, so it will probably go up a bit before we go home.

The plan is to send us out to the main pediatric floor this afternoon and then home tomorrow.

Here until Thursday

It looks like we'll be here at St. Luke's until Thursday or Friday while they see just how well Jereth's airway has healed. The rate of flow will be slowly decreased until we determine just how much support he needs. Once that rate is determined we can take him home.