Yesterday started out at 6am when we awoke to feed Lexi and then got ready to drive into Seattle Children's Hospital for our first of 4 appointments, starting at 9:30am.
The first one was with the surgeon that will be performing the surgery on Lexi to remove the Tumor on Friday 3/6. He explained how they would do it and all of the complications they may run into. The surgery is scheduled for 9am, but they move it up to 8am and it will take 4 to 6 hours to complete. Afterwards she will be in the NICU for a day or two and then she will most likely be transferred to the main floor for around one week or until she is eating, peeing, pooping and gaining weight. He informed us that the tumor is pushing on her main vain that feeds blood to the lower part of her body and it may be attached to it and if it is, this would increase the danger in the surgery. At this time the doctor scheduled an ultrasound specifically to look at this, so they have a better idea what to expect during surgery and he was able to fit it in between the anisteologist and cardiologist appointment at 1:30pm. We finished up by asking a few questions and this is when he told us that she would need to come in the day before surgery, so they can take some blood to make sure they had the exact blood on standby, just in case they needed to do a blood transfusion. At this point we packed up and moved on to the anisteoligist appointment.
During the anisteoligist appointment they inspected Lexi and asked us a bunch of questions and explained how they would put her to sleep and what the possible complications may be and due to her heart defect, this will increase those complications and they will need the cardiologist to sign off on their plan before they proceed.
By now it was around 12:10, so we thought it was a good idea to grab a quick bite before our 1:30 ultrasound. We went down to the University Village and we ate at the Noodle Bar and I have to say I was really disappointed with the Chicken Pho I had and I left there wishing I would have had something different. We headed back to Children's (still a little hungry) and I waited while Roxi fed Lexi. Once finished we went down to radiology, so we could check-in for Lexi's 1:30 ultrasound.
They were running a little late in this department and we didn't get in until 2:00, but it only took around 15 minutes, so we should only be around 10 minutes late for our 2:15 appointment with the cardiologist. We re-dressed Lexi, packed up all of our things and departed for the cardiologist appointment.
They were also running a little behind for our cardiologist appointment, so we didn't get in here until around 2:45. We met with the nurse first and she hooked Lexi up to an EKG machine to check her heart rhythms. I've never seen so many wires hooked up to someone before. There had to be around 15 wires hooked up to her little chest and abdomen. After this they checked her out a little more and let us know that the doctor would be with us shortly.
After 20 to 30 minutes the doctor arrived and he checked lexi out and talked to us about her heart condition and explained to us that with this heart condition, it's really important that she eats as much as she can throughout the day and night, because she is burning a lot more calories that a normal baby, due to the fact that her heart has to work a lot harder to keep her blood oxygenated. He also gave us a list of issues that we will most likely see over the next few weeks and when we do see them we need to bring her in, so they can get her on medication. The issues to look for are; Lack of appetite, sweating, and fast breathing, having to stop eating to catch her breath and lose of weight.
He wanted to schedule a follow up appointment for the day before the surgery on the 5th, so they could take a look at her heart and to make sure they still felt comfortable with removing the tumor on the 6th.
At this point it was around 3:45 and we were 45 minutes late for our echogram appointment and we were thinking we weren't getting out of here till 6 or 7 tonight. The doctor returned to our room to let us know that there is no reason to do the echogram today, because her heart still looks ok and we were good to go home.
We finally departed from the hospital at around 4:30, but it felt like 10:00. It was nice to get everything done in one day, but it was exhausting for Lexi, Roxi and I. Lexi and Roxi were fast asleep shortly after dinner and I wasn't too far behind them.
As of right now we don't need to return to Children's until 3/5, but we do have an appointment with Lexi's doctor, here in Monroe on Tuesday of next week.
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