More special visitors came to see Supergirl. Granny and Grandad came out just before lunch. Followed shortly by Daddy, Marissa, and cousin Jeff. Had a nice little visit and chance to update them, took a few pictures...Taylor slept through much of it. Marissa was happy to go to the playground with Jeff.
Marissa was a little more adventurous today with Taylor, she got right into the crib and investigated all the things around her, and even had kisses for her. She loves her little sister so much.
They were all still here when the pediatrician (Dr. Bernard) came to give us an update. She was able to sit down with the Radiologist and look at the ultrasound regarding the liver that looked inflamed. I can't remember entirely what she said about it, but it doesn't look like there's any fat around the liver, and any inflammation that may be there is insignificant, and has been ruled out as being a possible explanation for Taylor's pain.
She is taking Taylor off isolation. They did a nasal suction on Friday to test for RSV (Respiratory Syncytial Virus), which is a common cause of colds in winter and early spring. The results came back today that she does not have RSV. So the docs and nurses no longer need gowns/masks/gloves when they come in. And I can take Taylor out of the room to go for a walk!
She's also going to lock off Taylor's IV. Taylor has been receiving fluids through it, but instead they will give her water requirements via the NG tube. They've left the IV in just in case it's needed again, but at least it's not attached to anything and Taylor is free to maneuver around her crib without getting tangled. Freedom!
Dr. Bernard (pediatrician) also suggested that we try offering her solids today to see if Taylor would take something orally. She does not want me trying a bottle until OT comes tomorrow because it's much easier to aspirate liquids, if that is in fact what is happening. Let's hope not. This afternoon a meal was sent up for me to try with Taylor. I mixed it up well, took her out of the crib and held her in my lap. She was nice and calm. I put a bit on the spoon and held it to her mouth so that a bit went onto her lips and pulled it away. She moved her lips around a bit and then relaxed her mouth, so I brought the spoon back to her lips and then she clamped them shut. Stubborn little turkey. I tried this several times but with no success. She certainly knows what she doesn't want. Why oh why won't you eat my sweet? I even think she's hungry. Her regular intake is 700mL of formula, plus three meals. All she's been getting through the tube is the formula. So there's a lot of calories that she isn't getting right now. Dr. Bernard has put in an order for a consult with Taylor's dietician tomorrow to see what we can do about beefing up the calories in the formula, and make sure that we're on track with her water requirements.
So the big plan for tomorrow is focused around the OT (Occupational Therapist) coming down to do a feeding assessment on Taylor, and depending on her findings we go from there. If she thinks Taylor may be aspirating, that will need to be investigated further. The Gastrointestinal folks are ready to get involved but they are very interested to see what the OT has to say first. There could be inflammation in the esophagus that's causing Taylor pain. That could be from acid reflux. Taylor does spit up a fair bit and it is pretty sour smelling, so that's possible. Some kids aren't bothered by reflux and some are. So we'll wait and see what happens tomorrow on the feeding front and the search for answers will go on.
I must say I was very proud of Marissa today, Dr. Bernard was updating us on all this with a full room, and Marissa was extremely well behaved and quiet. Granny and Grandad left shortly after the updates, then Marissa had a quick sandwich here in the room and then her, Daddy and Jeff left too. Thanks for the visits you guys!
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Later this afternoon I was very surprised to see Ruby come through the door. She's Taylor's respite caregiver and she just wanted to come and see how Taylor was doing. She sent me downstairs for a little break and had some cuddles with Taylor. I was so touched by her wanting to see Taylor, thank you Ruby for thinking about us.
Francis' parents drove down from Medicine Hat today. With me being in the hospital with Taylor, they're going to take care of Marissa for a couple of days anyways. Marissa was pretty excited when Daddy told her that Oma and Papi were coming! Thank you Paul and Grada, we really appreciate the help.
Since we are now cordless I put Taylor in her wheelchair tonight and we went for a walk. So nice to get out of the room together! We walked around the main floor and spent some time sitting in front of the fish tank. For some time she was just staring sort of blankly, but then I noticed her eyes start following the fish that were swimming near the top. Way to go Taylor! They were sometimes hard to notice because the tank isn't very bright, and some of the fish were darker. Nice using your vision Supergirl! She didn't find Nemo though...he was hiding in and around the rocks at the bottom of the tank!
Today Taylor was holding her left arm up high in the air many times, while she was lying in the crib on her back. I was impressed with this too because it's the arm with the IV in it. There's a board taped to the underside of her arm for support and a cloth wrapped around it all. With all the extra weight and bulk on her wee arm, I think it's pretty cool that she went against gravity and held it up so well.
She slept alot again today, but her awake times were often pretty unsettled. She had a particularly bad spurt tonight for over an hour, not as bad as the extreme irritability that brought us here, but still hard to see her so get so upset. I was able to calm her down a couple of times in my arms which was so nice, she usually doesn't let us cuddle her. Her tube feeds were put a little off track today due to a kitchen delay making the formula, so as I type this post her last feed is being pumped into her tummy as she sleeps. She is so peaceful she looks like an angel...
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| My Sleeping Beauty...xoxoxo |
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