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| Arriving at St. Vincents |
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| Prepping for surgery... yep we are always THAT pale and tired |
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| Getting the IV put in (she likes to watch... I don't understand how she can do it)
8 May 2019 - Surgery Day
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| "Will you hold my hand?" |
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| Post op - And the beloved "pain pump" |
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| A message for Hurley.. .she kept asking how he was doing.... |
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| Waiting, waiting, waiting in recovery... |
9 May 2019 - Jen's DETAILS.....
Report to St Vincents by 11:00am - I actually woke up early again....The RMH is amazing...but we only have two towels and I wanted to grab a couple more from the store. I snuck out while Lena was still sleeping and made my way to make my lemon/apple cider vinegar/hot water down in the totally stocked commercial grade kitchen. I then decided that to avoid the saltine stealing debaucle of the day prior...I probably should find myself some breakfast. Since Lena was fasting until surgery (and she can't really eat anyway ) I decided a smoothie or acai bowl with protien would be great. Consulted Googlemaps, found a place that looked good, and made my way to "Broadway St at Yale".
The RMH is located about a 1/2 a mile from Yale University in New Haven- and I unknowingly arrived to park in a super quaint area that clearly has alot of Yale student traffic (lotsa backpacks wandering the same direction.) Parked too far down the street and found myself on a lovely morning walk past the Yale Bookstore, a cool church, etc. Took some pics, I'll put them at the end of the post. Proceeded to the Tropical Smoothie place and ordered a flatbread/peanut butter/granola/banana/and honey sandwich and a blueberry power smoothie. Um. The flatbread was something that brought me alot of joy. Yum yum. Definitely heavy enough to get me through the morning. Stopped at Target on my way back and grabbed the towels and some snacks for the day.
Prep and Surgery at 1:00pm p(actually took her back about 1:23pm) - They remembered "the bracelet" this time. We were ushered up to the 3rd floor and a few minutes later they took Lena back to prep her. They said it would be about 25 to 30 minutes so I ran out to the car to grab my water bottle. In the process, ran into the other mom of Lena's "surgery buddy" Jessica....who was at that time already in surgery a good 45 minutes. Carol and I had a good discussion regarding the pre-op, getting to know each other a bit, and after a few minutes made our way back to the surgery waiting room. By that time they were ready for me to head back to be with Milena.
She was all gowned up and had her "warm blanket" and "grippy socks" on. She looked relaxed, but tired, pale, and ready to "get started". Dr. Hsu stopped in, then the nurse anesthestist, then two nurses that would be in surgery with her. Another nurse started her IV (left arm, in the underside of elbow...) and we waited just bit longer before the nurse anesthetist returned with "the cocktail". And off they went.
Earlier in the day pics, all from Broadway Street (I think it's called "The Shops at Yale on Broadway"...)
The RMH is located about a 1/2 a mile from Yale University in New Haven- and I unknowingly arrived to park in a super quaint area that clearly has alot of Yale student traffic (lotsa backpacks wandering the same direction.) Parked too far down the street and found myself on a lovely morning walk past the Yale Bookstore, a cool church, etc. Took some pics, I'll put them at the end of the post. Proceeded to the Tropical Smoothie place and ordered a flatbread/peanut butter/granola/banana/and honey sandwich and a blueberry power smoothie. Um. The flatbread was something that brought me alot of joy. Yum yum. Definitely heavy enough to get me through the morning. Stopped at Target on my way back and grabbed the towels and some snacks for the day.
Got back, Lena was all ready. I was amazed at how relaxed we both felt about the entire process and morning. Actually left on time, (if you know me, you know that rarely happens...) We made it to the hospital with 5 mins to spare.
Prep and Surgery at 1:00pm p(actually took her back about 1:23pm) - They remembered "the bracelet" this time. We were ushered up to the 3rd floor and a few minutes later they took Lena back to prep her. They said it would be about 25 to 30 minutes so I ran out to the car to grab my water bottle. In the process, ran into the other mom of Lena's "surgery buddy" Jessica....who was at that time already in surgery a good 45 minutes. Carol and I had a good discussion regarding the pre-op, getting to know each other a bit, and after a few minutes made our way back to the surgery waiting room. By that time they were ready for me to head back to be with Milena.
She was all gowned up and had her "warm blanket" and "grippy socks" on. She looked relaxed, but tired, pale, and ready to "get started". Dr. Hsu stopped in, then the nurse anesthestist, then two nurses that would be in surgery with her. Another nurse started her IV (left arm, in the underside of elbow...) and we waited just bit longer before the nurse anesthetist returned with "the cocktail". And off they went.
I wandered out to the room, again, kinda surprised that I didn't feel more anxiety about the entire process. I felt like she was in great hands. I spent the next hour or so talking with Carol and Jessica's dad...(Dr. Hsu had finished with Jessica prior to coming in to Lena's pre surgery meeting...so they were just waiting for her to wake up from recovery....) We had been warned that in the case of THIS surgery...that they do not rush waking up the patients. If vitals and breathing are good, they just let them rest for a while since it is so invasive and traumatic on the body. Dr. Hsu came out about 3:30 and summoned Jessica's parents in to see her. Then he returned to talk with me.
Mom meeting with Dr. Hsu afterwards - Here was the gyst of the post-op conversation with Dr. Hsu:
"Everything went well. I removed the ligament bands. It was interesting: She has the fragile, delicate arteries of a 14 year old, but the nerves of a 90 year old. Her anatomy is a little bit different. It shouldn't cause her any problems later on, but she has an extra branch off of her celiac artery. A normal anatomy has 3 branches," (he then explained which direction each branch goes and what they lead to....I got lost there...), "But Milena has a FOURTH branch that leads to the liver...I chose not to dissect it because there was no reason to mess with it...but the surgery took a little longer since I had to go under it like a bridge...."
Dr. Hsu then literally spent like another 25 minutes in casual conversation with me, answering all and any questions I had...which were mostly about how the heck do we spread the word and get more recognition for his approach to Neurogenic MALS??? I'll save that discussion for another post devoted to MALS awareness....BUT this surgeon is a class act, easy (for me) to talk to, honest and confident provider. So, so, so grateful.
Post op - I wandered down to get a bite to eat after talking with Dr. Hsu...as I had been warned that it could take 2 to 3 hours for her to wake up. I had some mediocre grilled squash and herbed sole from the Cafe...Talked with Annika briefly...
OH YEAH - ONE HUGE MOM FAIL....
Backtrack to Lena going into surgery. I carefully created a group text so that our closest family members could have up to the minute info on her progress. From Surgery prep on....I had been sending pictures, updating and communicating with the extended family. I knew Erick, Ture and Annika were all busy and so it didn't surprise me that they hadn't responded with questions or comments. Until, I noticed Annika sent a text that read, "What time is Lena's surgery?"
Yeeeeaaaahh. I actually didn't put Erick OR Lena's actual siblings on the group text. They had no clue how she was doing. MANY apologies and "copy and paste" texts later, they were up to date. I'm so much less than perfect. Intensely flawed actually. Sheesh.
Ok, now the REAL Milena focused post op info: When I got back from eating, I didn't even have time to sit...they took me back, and she was calling for me and saying, "Hurts. Hurts." The nurse (aid) who will from now on be referred to as THE LPN THAT I NEVER SAW PUT ON A PAIR OF GLOVES or perhaps "gloveless nurses aid" took her own sweet time hooking up the pain pump. She said that we shouldn't try to talk to her because she didn't want to get distracted and do it wrong ?!? Do these sorts of things ONLY happen to us? Once she was finished she had to call for a "real" nurse to check her work - and she hollered from the edge of the curtain like she was maybe calling for "CLEAN UP ON AISLE 6!!" I didn't blame the other nurses for ignoring her. I then got a thorough training in how Lena would HAVE to push the pain pump HERSELF and that I could remind her but that I couldn't push it FOR her. She made a big deal that my pushing "wouldn't work". I totatly mentally questioned the validity of this. Really? (Like was there some James Bond technologly that recognized Lena's fingerprints but would reject mine? I had a feeling gloveless nurses aid was making this up....) Made sense but as in many situations I find myself in...I was thinking, 'people actually DO that?' I totally wanted Milena to control her own pain releif.
So the pain pump was a little hand held device with a green "firefly" light on the top. When it light up, the pain is available and the individual can "push" the medication (in this case Dilaudid). Man Lena wasted NO TIME pushing that thing once it got in her hand. I mean it had taken almost 25 minutes before they even handed her the pump. The medication was available every 15 mins. Within two pushes, Lena had figured out that the light synced up with her BP cuff measuring so that was her indicator when it was ready to push.
By now it was well past 5pm...and although Milena had already been assigned a room, and it seemed she was stable enough to be move (gloveless nurse aid said so) - BUT the little hospital was HOPPIN with activity and transport wasn't showing up. We waited about an hour and finally made it up to Room 1043 by around 6:45pm.
Earlier in the day pics, all from Broadway Street (I think it's called "The Shops at Yale on Broadway"...)
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