Waiting

April 6th
We meet with Dr. Robertson today who at first didn't recognize us until we mentioned that we first meet in the NICU back in January. He hadn't looked at the reports from the CT or echo's but took a good listen and looked at her and with a confused look on his face said "she looks good... she's beautiful!" He repeated this the entire visit. He told us that he's on call all weekend. We also spoke with Dr. Bodani (Jr.) She was very understanding of the fact of what we that was going on with her and her temp spike and she fully agreed with us. We seen her a few times through out the day and she agreed to get us out of isolation as soon as the swabs come back.
Well, Erica had a cranky day until about 6 pm when she finally fell asleep she tossed and turned until about 7:30 and the then of course her med's were due at 8:30, so she was awoken with the cold scalp i.v. med's. So we told the nurse to just do her vital's and assessment now as she's half awake now instead of coming back in an hour and bugging her again. This way she could sleep a good bit of the night.

Erica's stat today were
SPO2 (oxygen saturation) - 1.75L/min gave 95-100% saturation
Resp's - 23-70
Heart rate - 120-180
weight - 4.34kgs (9lbs 9oz)
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April 7th
Erica is still in isolation only due to the fact that they LOST her swabs (This seems to be a regular occurrence with Erica's swabs). This happened in the NICU the last time we were here in Saskatoon as well. They apparently didn't make it down to the lab. So they re-did the swabs and hopefully we'll get back into regular ped's by tomorrow.
Erica had a "fit" this early morning according to the nurses. They suctioned her nose out. (We told them not to as she hates it and then we end up with her "spells" (fast heart rate/breathing and de-stats /looses her o2) So they gave her some tylenol but still they needed to up her o2. Well the nurse left and I looked at the oxygen setting and seen it was cranked to 2.25L/min! Her gut was so extremely large when we got here, it looked as though someone took the air tank and pumped her up. She wasn't needing the 2.25L/min of oxygen you could tell as her stats were great! so the extra oxygen we figure was going straight into her gut! So I turned it down to 2L and she was still doing good. Then Dr. Robertson came in to check on Erica, as she was working quite a bit this morning (5 am ) So I asked him if her quite massive blown-up tummy was due to the oxygen that she wasn't using was being blown straight into her tummy. He figured it could more then likely cause it as it's all connected. So he turned her o2 down to 1L and her stats were still great (hadn't changed) Then he said that some of the nurses here get a little excited when it comes to stats and o2 levels, and just crank it up. He also lowered Erica's o2 levels to be anything greater then 92%.
At 1:00 Erica's nurse Carolyn came in to give Erica her oral Lasix, do vitals and change her bum. Erica started gagging shortly after the oral lasix and started getting pale. So she right away cranked up Erica's o2 again back up to 2L and then started fettling around with her stat probe, which we've asked countless times to get changed to the neonatal probe as it fits her better and gets a better reading from it. She replied to me "No it's not the probe they're reliable..." Little does she know we've fought with the probes before and every time an infant probe was placed on her the less accurate it has been, we've always switched it back to the neonatal probes. and we've been doing this for 5 months already!
At 3:00 Erica was finally turned down to 1.5 L and is stating at 98-100% again with resp's between 30-70 and a heart rate of 115-122. She's asleep again and slept about 9/10 of the day today!
Dr. Robertson and Pharis both told us that if she needed any other tests done that she'd be sent to Edmonton for them because they didn't feel safe enough to do any other tests on her with her pressures so high that if she needed emergency life support they are better equipped at it in Edmonton as they come by these type of situations (generally speaking) more often then Saskatoon.
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April 8th
Today was a pretty uneventful day. We made it through the entire day without having to go up on oxygen. Erica even had Uncle Jon and Uncle Gerry come to visit. Erica stayed awake even for the whole afternoon 3-930. At 9 the nurse came in to do her assessment and give med's. However she was unable to flush Erica's scalp I.V. which freaked us out a bit as Erica first off hates getting I.V. med's and second if it (I.V.) didn't work she'd get tortured with getting a new i.v site. So the nurse grabbed the charge nurse who was a wonderful nurse and got it working again. Thankfully!
It was quite the afternoon in the hospital today as there was a bunch of arguing between a physiotherapist which comes down to do chest physio on our neighbor girl (which to watch if you didn't know what was happening you'd think he was beating the child.) and a nurse who said they worked 16 hours a day and didn't have time to do the chest physio, not that they didn't know how to, but that they didn't have time to. Mean while they lounged around talking about their vacations, when there next one is, and which nail salon was the best to go to all day long was ok to do, The physiotherapist was quite angry to come down and do it while he could be up-stairs working on his other patients as the nurses down here were quite capable to do what he was doing. It was all quite comical! Mean while, while all this was happening our other neighbor boy was screaming, and they didn't come to check on him for the longest time. Finally they came in gave him his soother, and left. They his parents came back and the nurse told his parents that the kids was good no crying, just resting the whole while.
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April 9th
Erica's o2 was up again this morning 1.9L/min The nurse said she was freaking out because she lost her soother (however she's never freaked out because she's lost her soother, she really didn't care to have her soother) she also said that they had to suction her out. With the previous way we seen the one nurse lie to his parents the other day I am sure we aren't being told the truth.
Erica did have another spell however. She was awake and playing and it was time for vitals just as she was trying to fall asleep. She first started to cry and then got really stuffy, so the nurse suctioned her nose which she got a lot of boogers, but it in turn made her even more upset and raised her heart rate to 200 and yet again turned blue/extremely dusky. So we up'ed her o2 from 1.5 (I had turned it down) to 2L It took her quite a while to settle down, and a few hours later she was still at 2L and her stats sat around 150-160 for her heart rate, 97% oxygen saturation, and 60-80 for her resp's. All while at rest (sleeping) Her last swab still has yet to come back, and they got an admition today (our new neighbor is a 1 year old boy named Ozzy)