The CT scan

Ian AdatiaWell today was the CT scan. It was the day where we were to get confirmation, a plan, a diagnosis, and instead we got a bunch of confused Dr.'s and Surgeons.
The CT scan had shown that Erica had apparently grown a 5th vein. One of her pulmonary veins had branched off into another vein (however it's tiny and unusable)  The CT had also shown that she has 2 veins going into her right atrium and 2 going into her left. Only the 4th vein looked to be very stenosis 'ed, and by the view of the other stenosis veins they looked more stenosis 'ed the pressures on the cath procedure on friday had told them. The CT had also suggested that she may have some lung disease as they can't tell if it's solely the affect of the blood "back-filling".
They were thinking of  doing an extubation on her (taking out the breathing tube) after the CT today however because the CT made them more confused they are keeping it in. { We both thought of this as well and also mentioned to the nurses that as much as we would love to hear our sweat angel again, with pending surgery and her needing to be intubated it didn't make sense to cause more trauma with intubation and extubation repeatedly}
They are going to have their BIG tuesday meeting again tomorrow and Dr. Ashok Kakadekar is requesting Dr. Ian Adatia to weigh in on her case as he's a pulmonary hypertension specialist with offices in California, Edmonton, and Winnipeg.  They are also going to consult a Pediatric lung specialist.

A pretty uneventful weekend

Sounds not too bad... right?
Saturday Erica had slept most of the day. Well she slept unwillingly. They ended up having to sedate Erica as she was getting pretty up-set, probably for multiple reasons... Being unable to eat (they still kept her NPO [nothing by mouth]), having being aware that she had a tube down her throat forcing air, and she must have not been feeling well, as she was running a temp 39*

Sunday was a bit better, her temp was gone and she seemed to be less annoyed about the tube. She still got some sedation to keep her calm and sleepy but she wasn't completely knocked out to the point where we couldn't wake her.
We sat all day chilling out watching Erica sleep trying to prepare for the CT scan tomorrow. Towards the end of the afternoon Erica threw up, so we were able to hold her mid air so the nurse could change her sheets and then we had to set her back down. It was the hugest tease. There was nothing more I wanted to do then to cuddle and hold her again.
She was also pretty gunked up in her tube with loads of secretions being constantly suctioned out which we were told is normal with being intubated and having a heart condition.

Finally some answers

We meet with Dr. Pharis this morning to talk about the procedure. What they were looking for and sign the consent form. It was nerve wrecking as Dr. Pharis was hoping that if they found this stenosis he hoped that it wasn't total stenosed veins as if they were there was absolutely nothing they would be able to do for them as it they were total stenosis 'ed they would be small from tip to tip and the lung side goes deep into the lungs where they can't fix as the lung is very spongy delicate tissue. The procedure was to take approximately 2 1/2 - 3 hours long.

They needed to sedate and paralyze her for the procedure. So we waited on pins and needles as the hours went by. Finally a little over 4 hours later They came in to tell us that she was on her way back up and that it went well.
We sat down with Dr. Kakadekar and he explained that they were able to get everywhere they wanted to except for one pulmonary vein (top right). She did need a transfusion of 60 cc. Which apparently is quite a bit for a little one. He said however that her stenosis is very small, but that they where able to tell that her lower right pulmonary vein had formed to the right atrium instead of the left where it should be. The PDA was still very large, she also has what they think is a medium/large ASD (however it looks to be shunting the blood flow in the wrong direction), really high pressures in her lungs and pulmonary artery. They were fairly certain however that the "shelf" in her aorta (coarctation of aorta) isn't causing any major problems. 
Because of the fact that they weren't able to see the top right pulmonary vein and where it was going to, they wanted to do a CT scan to reconstruct her heart and confirm the cath results. 
It was a huge relief as he was very convincing that it all sounded fixable, and she was going to be fine. 
  
Angiogram
Pulmonary Vein Stenosis
Coarctation of Aorta
ASD 
PDA
TAPVR/ PAPVR
Pulmonary Hypertension

A calm day

We came early this morning to see Erica. She was pretty sleepy as she was sedated for the ride up to Saskatoon but other wise she seems to be doing pretty good. They still have her off of feedings and wont resume them until after the angiocath tomorrow.
She had another Echo done today and another X-Ray both had confirmed what was electronically sent and the x-ray had showed that her lungs looked better.
They decided later on today that they want to make her first case instead of second. So her angiocath will be at 8:30 am.

To Saskatoon we go

We got the call and were to go to Saskatoon by air at 1:00 pm. We call to see if they had left or are still scheduled to leave by 1:00, however they were unable to get the plane any more, so they needed to make alternate arrangements with the ground ambulance, which they ended up getting and they were then to leave by 3:00-3:30pm. We dropped Emily and Brayden off at grandma and grandpa Aschenbrener's, called the hospital again, just to make sure as it was nearly 4:00 and they hadn't called yet to say they left and they said that she was leaving shortly. They were having some problems with getting the CPAP machine to work, so they needed to intubate Erica in order to get her to Saskatoon safely, after they intubated her they needed to take an X-Ray and do some blood gases to make sure it was all in the right spot and working as it should be. So we told them to call our cell when she was leaving as we were on our way to Saskatoon ourselves.
We ended up calling them back multiple times as they hadn't called and each time I got the same answer nope she hasn't left yet we are waiting on the gases. We made it to Lanigan and decided we better sit and eat as she still hadn't left Regina and we were already half way there. So we ate and then left again for Saskatoon. finally at 6:15 the NICU called
"Sweet Little Miss Erica has left the building" said her nurse
Erica arrived at the Royal University Hospital NICU in Saskatoon at 8:30pm. They placed her under a "disease precaution" for 24- 48 hours until her blood work came back negative, because she came from another hospital
Erica's Saskatoon admission weight was 3.31 kilo's 48.5 cm long (19 inches)

The BIG Meeting

Today Erica is 44 weeks gestation and 70 days old! She weighed in last night at 3.25 which is 7lbs 2 oz! GO ERICA GO! Tonights weigh in was 3.28 kilos which is 7 lbs 3 1/2 oz! Lets hope it's all weight and not fluids this time. 


Today was also the BIG MEETING day with the Cardiologist of North America. As to what they've discussed she is to go to Saskatoon for a angiocath  in which they'll inject dye through an artery in her groin and take a scan to view the blockages, leaks, pressures, flow, etc. to her heart and organs. 
They want her there tomorrow, so she will be air lifted tomorrow afternoon to the PCIU in saskatoon university hospital, then on Thursday they'll do another echo, and on friday  Dr. Ashok Kakadekar and Dr. Faris will do the procedure. 


There are definitely mixed emotions right now. We've wanted them to not really find anything because the thought that something is wrong with her child's heart is unbearable, but yet I want them to find something that's minor and can be fixed easily and none or at least minimal  invasively because then all our guessing games are over. She wont be the mystery baby... She'll be "fixed" and can come home, where she belongs! 

New Year's not starting off too good

We got a call on New Year's Eve 3 hours after we left, says she took a turn for the worst. She ended up D-Sating and turned blue while her breathing got really heavy and fast (140-160 bpm) So they took an X-Ray and it showed she had massive Pulmonary Edema. So they moved her back into the critical NICU section (spot 5), were giving her more diuretic's and putting the nasal CPAP on her and if that doesn't work then they'll incubate her.
When I got there the CPAP seemed to be working and is still working today but they do have her in the incubator with the top up just incase. They also called her cardiologists and they are having a meeting with all the cardiologists in North America on Tuesday (Tomorrow) for her (U.S and Canadian top surgeons) and then HER Cardiologist will be coming down on Thursday so do another echo and hopefully be able to figure this out.
They aren't thinking her heart conditions are causing this as her pulmonary veins are only slightly narrowed and the PDA was nearly closed and not causing any effect on the shelf in her aorta, however they have nothing else to blame for her symptoms as all her blood tests and scans have come back great even her gases. The Dr.'s said that they really don't know what's going on with her that all they can do is make her comfortable until they can figure it out, and that hopefully they can figure it out soon, because she's not getting better she's getting worse and has been getting worse since she was born :(