Drainage Issue

Taylor had a really rough go last night. She started crying hard around 11pm and didn't settle until nearly 1am. It was very similar to the way she cried a couple nights ago before she had the old man farts and relieved herself. Only last night she never got the relief, she just cried and cried and cried until eventually I think she cried herself out. I actually got right into the crib with her trying to rub her tummy, hold her, bring her knees up. Tried everything I could think of to comfort her without any success. She was up again upset around 2:30am but settled quicker that time. Again a few hours later, and again at 8am. She calmed quicker those times, and at 8am when I put the soother back in she fell back asleep and had a very peaceful sleep until 11am.

The OT was supposed to come at 8:30am to watch Taylor eat breakfast, but because she had such a bad night we decided to put formula through her tube, let her sleep, and the OT would come back before lunch. When the docs came for rounds I told them about her night and that it seemed to be bad gas pain, but she never got any out. When the doctor felt her tummy he said he could feel that she was pretty constipated. Wonderful. So they ordered an enema to clear her out. Mom arrived just as rounds were wrapping up.

Before they start a tube feed they draw out stomach content and test the pH for tube placement. The pH this morning was quite 'basic' when it should be 'acidic'. We got sent downstairs for a quick abdominal x-ray to check tube placement as well as to see how backed up Taylor was in her bowels.

When we got back from x-ray, Jadi was here leaving me a note. Jadi is one of the 'special' moms I met last month. Her little one Clare had a Neuro appointment today so they came by to say hi as she knew we were in the hospital. Thank you so much for the food, I really appreciate you thinking of us and taking the time to bring me food when you already have your hands full. Jadi has had far too much experience with Clare aspirating and dealing with NG tubes. I just hope that Taylor's test on Tuesday is good and that we don't need to go home with a tube. Otherwise I will most certainly be calling on Jadi for support and an understanding ear.

Next up was Taylor's enema, Francis arrived just in time to be here for it, what timing! She handled it very nicely, no tears, no wiggling. A few minutes later things started to move, and move they did...full speed ahead! No need to be too descriptive here, let's just say Taylor's drainage issue has been fixed!

The next pH check was back to normal, so the enema fixed more than one thing! When the x-ray was looked at, it was confirmed that the tube placement was still good, and that taylor's blockage was quite low down, so the docs feel that the one enema was enough. Hopefully that's what was causing her so much pain last night, and tonight will be better for her.

Because of the x-ray, our OT session got moved a little later. She came in just before 1:30pm and observed the same gurgly noises in Taylor's breathing once she started feeding. So she still believes that the swallow study on Tuesday is the best plan of action. Taylor only ate a third of her lunch and she wasn't interested in the bottle, but she had just finished a tube feed, so she was probably just full.

This afternoon Francis' sister and parents came to visit. They were all so happy that Taylor was having a 'cuddly' day cause it's not too often that they get to hold her for that long without her fussing. So they enjoyed the snuggles. And Taylor must have enjoyed them too because she fell fast asleep in Auntie Myriame's arms. Thank you Myriame for the cute Halloween bear and the beautiful dress you brought for Taylor. Paul & Grada, we are so very grateful for you coming out this week to take care of Marissa while I'm in the hospital. I know she really put you through the ringer yesterday, I'm sure having today off duty was better for you.

When supper came tonight I mixed Taylor's food together and she ate every bit of the meal. Next I tried the bottle. I fully anticipated that she wouldn't be too interested and that it would need to go through the tube. But Supergirl proved me wrong. SHE DRANK THE ENTIRE BOTTLE!!! And it was a big bottle too...230mL to be precise. Way to go Miss Taylor, so proud of you! She had some gurgles and coughs which made me nervous every time I heard them, but what a big step drinking that much by bottle. Up until now the most she drank out of a bottle was 65mL. That swallow study can't come soon enough. I just want to find out right now where things stand with regards to whether or not she is aspirating. Please oh please let her be okay.

Lana (Taylor's aide) came tonight to see us, she arrived right at Taylor's suppertime and was so pleased to see Taylor eat as well as she did. She sure misses Taylor and was most happy that she got to have some cuddles with the little princess. Lana almost didn't recognize her because Taylor has lost her tummy since she went on her eating strike. She is just oh so tiny around her waist. She's gone from 11.4 kilos last Thursday morning, to 10.7 kilos today. That's 1.5 pounds which is alot for a little person. Thanks for the visit Lana, was nice to see you.

When Taylor settled tonight I popped over to Starbucks and brought back a chai latte...mmmmm. Just finished up this post as I took the last sip. Time for bed. Nighty night :-)