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11/24/22

 When Taylor was in treatment I struggled with updates when things were bad… like how honest and raw do I get?  I didnt want to be too much, but I didn’t want to sound like a Pollyanna either.  Anyway, I’m dancing that line with this whole situation again.  I also don’t want to bash medical staff who are helping us, but I feel led to say a bit about yesterday and last night.  When we got admitted they put us on the oncology floor because of Taylor’s history.  The cancer team was communicating with the GI team and things took forever and got lost in translation, and I think very overlooked at times because the oncology nurses didn’t know what to do??  I’m not sure, but yesterday during the day, I feel like Taylor was taking a nose dive because of nurses and doctors not being on top of the situation, because of all of the above.  Again, I’m not bashing anyone, but we were frustrated.  Her doctor and nurse last night were truly an answer to prayer, the doctor came in and had blood and flu
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The start start 11/22/22

 Taylor had another bleeding/loose stools episode while we were waiting for her to be transported.  After it she got so weak she literally started falling like a wet noodle.  The nurse and I together held her up until a wheelchair came.  She was soooo pale.  Transport finally came and we are now at childrens mercy.  The doctor came in and let us know right away that he didn’t think this was cancer related.  So that was a relief.  He’s not sure what’s going on though.  They are going to run a few tests and we are going to hang out until the bleeding stops or they know what’s wrong.  The sickness the family and Taylor have is Flu A.  She feels pretty terrible.  Blood is also on the way, that should help her perk up some. Her hemoglobin is down to 4.2 😳😳 she’s going to be getting 2 units of blood!
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1/16/23

 Taylor had 2 bleeds this morning, so we headed to the ER.  We are waiting in a triage room right now to find out the plan.  We packed bags, anticipating an admission.  She is starting to feel the blood loss weakness.  We were soooo close to making it to the surgery day without a bleeds.  😭😭😭 I will keep ya posted on what goes on 💕 (surgery will still happen, just a great big bummer to be back at the hospital before it happens) We got into a room at about 5.  Taylor had 2 more bleeds (4 total so far this time).  She had to get two IVs because of a medication that they are running around the clock.  She’s not thrilled about that.  There is some talk about maybe moving the surgery up if they can.  Since we are here and IVs are done, we might as well.  We will know more tomorrow when the liver team is here.  We are all for that!  When Taylor had her first bleed she started crying and saying she just wants her surgery (so that she doesn’t have to deal with all this anymore).  I was wai
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1/13/23

 We had a looooong day of waiting today!  Taylor’s liver doctor wanted her to get an MRI of her liver, to make sure it is healthy enough to make the rex shunt surgery work.  Since she had that nodule he wanted to see if she had more.  She just got done with the MRI and we are waiting for discharge!  He came to talk to us after the MRI got done and wanted to check them “unofficially” from what he saw it looks like her liver isn’t as unhealthy as he thought it might be.  He showed us the MRI scans and what he thinks is going on with her veins that go to the liver.  It looks like they are all over the place in kind of a messy-mess with a possible blood clot.  For some reason the blood isn’t getting to her liver like it should, which we know, but don’t know exactly what’s going on.  He also thought he could see the spot that’s causing all her bleeding.  So that was interesting.  He can’t know for sure until the surgeon opens her up, but it will be cool to find out what’s going on there.  T
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1/12/23

 The scope went well!  She didn’t have any banding done.  She does still have the active bleeds below her stomach in the lower GI tract.  She, of course, still has the Varices in the upper GI, but none were bleeding right now that needed banded.  The doctor seemed pleased with where she is right now.  He explained the banding as poking fingers in a dam.  It’s a very temporary fix for a huge problem, so it’s fantastic she is getting this surgery soon!  He said if surgeries or scopes are canceled or scheduled right now the wait is MONTHS out!  He said something about not enough surgeons.  Anyway, all that to say, please pray we all stay well until she has this surgery!!  I have found out more about the surgery from the page I’m part of.  The average hospital time seems to be 8-10 days.  After that kids go to the Ronald McDonald house for 2 weeks.  What I’ve also read is the surgery is complicated and recovery is rough, but it saved the kids’ lives who got it.  The doctor told me it’s suc
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1/12/23

 Taylor has a scope today, with possible banding (if she has any bleeders).  We are scheduled for an overnight stay.  She had her bags all packed and ready to go this morning (the girl is not a light packer, lol).  She’s been feeling pretty good.  We had a wonderful time as a family on our little get away.  God kept her well for it and we are so thankful!  We have a pre surgery physical and meet with the surgeon on the 18th and then her big surgery the 23rd.  I found an online community of people with the same condition as Taylor (portal vein hypertension which causes esophageal Varices) and it’s helped us know what to prepare for.  Taylor isn’t excited about the surgery but she’s ready to get it done.  She even saw photos of what will happen, and it’s pretty intense.  She handled it like a champ, she’s the bravest girl I know!  Let’s do this 💪🏼#TayTheFierce
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Bad things kept happening 12/25/22

 I’ve been told, by more than one person, to share our “series of unfortunate events”.  I didn’t want to, because I don’t want to sound like I’m complaining or using Taylors situation to make people feel sorry for us… but I feel like maybe I should, to say “look how God has taken care of us, despite allll these things going on!!” And say THANK YOU for those that have prayed and given and encouraged us! So here it goes, it’s long and it starts to get almost humorous because it’s SO MANY things. It all started about 4 months ago.  Across our whole basement and through our garage a giant crack appeared (like broken cement, ran deep!!).  Right around that same time our washing machine, and dishwasher also quit (what should have been a simple installation of the dishwasher turned into a 3 day ordeal!!).  Then both suburbans decided to have twin problems and they both needed new brakes and fuel filters (randy fixed both things on both vehicles).  Not long after that the red suburbans engine
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