Urology update

 I've been up since five.  Can't find rest to relax and try to sleep again as my mind swirls around yesterdays visit.  Wasn't a *bad* visit, but again, not something I was expecting.  I'm struggling to know if I should just "unleash" my thoughts or keep it straight to the point.  UGH...the more I type, the more I feel conflicted. Here we go:

She had an ultrasound at 1230.  Her appt with her NP wasn't until 2:30, because why would we want to schedule them back to back...that would be too easy, am I right?  I digress,  we get there and by the time they get to the bladder portion of the ultrasound, Lillian is about to rupture and the tech says, oh my, if you are ever that full, please say something, I'll do the bladder first so she's not miserable.  Now, in 12+ years, no tech has ever, EVER said that.  We have even rolled in there and said, she HAS to go and they pretty much ignore me.  Anyway,  we muddle our way through this area of KY, and find a place to eat. My mom graciously treats us to Olive Garden, one of Lillian's favorite places.  They literally bring me a bowl of chicken and gnocchi soup with no chicken and no gnocchi, seriously.  That was easily taken care of, but funny nonetheless.  Before we leave the restaurant, we always do a potty break, head back to the hospital for her appointment.  The NP comes in, there is sediment in her bladder can we give them a urine specimen.....this could mean a number of things, does she have a UTI, could this be from holding your urine for a long period of time.  Are you adding this up yet?  So, we head to the bathroom for a clean catch sample and me bent over being assaulted by the deadly gas my child has, holding the tiniest specimen cup, Lillian is only to give a couple drops, which is only enough for a dip specimen.  Not a culture.  Can I get her in to the pediatrician tomorrow to drop off a sample?  At my suggestion, their office makes the call to the pediatrician and gets us an appointment, about this time I get a seymour phone number coming up on my phone.  I answer, it's the school nurse, Ezekiel appears to be having a little RAD event and the nurse is very concerned.  I'm, literally talking to the school nurse and the NP in the dr office at the same time.  Such chaos.  I finish the phone call, feeling stretched.  At this point the NP starts asking me if we've seen Nephrology before, I say no. She says are you sure, I thought we sent her before.   I say, no.  She peruses the computer to make sure I'm right and suggests that due to some of the things showing up in her urine consistently, she'd like her to be seen by Nephrology.  It is at this time, that my own internal dialogue has started.  I'm thinking a multitude of thing, mostly along the lines of "she's got to be kidding me right now".  Many, many thoughts racing through my mind.  She stops abruptly, looks at me, and says why are you looking at me like I grew three heads?   I giggled off and on all the way home. Clearly, I have no poker face.  Eventually, after some questions I tell her I'd love to add another doctor to our list.  Mind you, she doesn't *think* she has the specific disease she suspects, but she wants them to have a look and make sure. By the way, did I mention they scheduled the "pee" appointment for the same time my husband has to be at therapy in our town?  (it's been worked out *deep breaths*)

We get out to the car, I call the pediatrician and explain what has happened with E and can he been seen when I bring in Lillian and her response is, they can't give me an appointment this day, I will have to call in at 8 in the am and sit on hold for a sick appointment.  ??????????

SO, this is where I end this blog.  I think that's all I need to share at the moment.  My emotions are running high, so I will stop here. Thanks for hanging in if you're still reading this book of a post.  

Final final blood "disorder" results and other stuff

 The hematology team has made the decision that Lillian does not suffer from any bleeding disorders.  All of the tests they have in their abilities at this time indicate she does not.  They are going to make her diagnosis bleeding tendency and see her yearly.  They will also be updated for any surgical procedures so they can order medications to slow bleeding if need be preop.  So, praise be to Jesus.  It does test my thinking though, in a way, they kept doing the same tests over and over until one was normal.  Of course, I'm no doctor, but how can a test be abnormal multiple times and then be normal?  Oh well.  Again, I'm no physician.  We have follow up with her Urologist on Thursday.  That will be a long day in KY.  

Matt update: he is doing well at home.  Thank the Lord he is finally home.  We are rolling into a week of dr follow ups and continued physical therapy.  Cardiac rehab should start in another week or so.  He is easily exhausted.  I am so, SO grateful things are going as they should.  Lillian and Ezekiel seem to be hanging on some viral bug and I feel like we are living in a petri dish.  It seems as all my fatigue is catching up to me and I'm tired.  

Keep praying for healing.  I am so grateful for our friends and family who are rallying around us.  There will never be enough words.  

One week update and how am I

My husband had his surgery on Tuesday the 14th.  When I woke that morning at 4:15am as my feet touched the floor, I heard the Holy Spirit speak "there is another in the fire".  I felt calm, I felt strong.  Two things I haven't felt since the news dropped on us about the condition of his heart.  You see, Matt has always been the calm, unworried, silent strength.  I tend to be more vocal, extroverted, emotional one.  Ask anyone who knows me. 

In a matter of moments are lives changed, again, so quickly and dramatically it was hard for me to wrap my brain around.  Even after I sat in his room on day 2 post op it felt surreal.  He was barely coherent, yet there he was giant wound down his chest, wounds in his legs, wires and tubes from ev-er-ry place. 

 My big breakdown came that night.  I could not get a grip.  I cried out to the Lord.  Songs flowed in my mind calling out to the almighty.  After about an hour maybe, I called a dear friend and she came and sat with me and I cried even more.  Ezekiel had been emotional that night, Lillian couldn't quit crying simply because I couldn't quit and her trying to comfort me only caused me deeper sorrow.  My friend stayed with me for at least two hours.  I told her over and over we've never been surrounded with more support so why was I so overwhelmed?  Exhaustion is not my friend.  HA!

Matt is doing well from a surgery standpoint.  He remains in ICU awaiting transfer to inpatient rehab due to physical limitations he struggled with prior to surgery and have been worsened by the fact that he cannot use his arms for 12 weeks because of sternal precautions.  He did wind up having five bypasses.  His disease is extensive per the surgeon.  My husband has never drank or smoke, he is not obese, far from it but he does have a family history.  

This is overwhelming and the exhaustion I feel is not comparable to anything I've ever felt before, even with all we've experienced.  This is so very different.  The Lord is faithful  The Lord is good.  If you are struggling, I pray this gives you some hope that you are not alone.  I remind myself, daily, that the Lord already knew this was coming and he already paved the way.  Now, I think my windshield cracking all the way across on my way to hospital Thursday would have been a stress I could have lived without this week...but such is life, right? All of this drives me to my knees for him and intercessory for so many others who are suffering.  

So, how am I?  I'm overwhelmed, I'm exhausted, this is hard.  I'll continue to tuck into the shadow of his wing and reach for his hand.  Thank you for your continued prayer and support. 

Specialized blood test and Infusion

 We traveled to KY two days in a row.  Tuesday for a specialized blood test and today for her infusion.  Both procedures went well, they were able to get her with one stick both times.  Lillian seemed to experience a lot more pain with them this time.  I was very grateful she only had to get two sticks.  We are supposed to meet with her GI dr next week to have a check up and schedule her next scopes because as of now, she has been getting treatment for one year. It is time to see if she is in remission. That might have been a real milestone, I think, had the coming events not be in place.   That being said, in my last post I mentioned my husband and the fact that he was having a heart catheterization.  He did have it and the results were not what we hoped for.  All the chambers of his heart have high levels of blockage and currently the plan is that he will have open heart quadruple bypass surgery on Monday the 13th.  

This is incredibly overwhelming.  We are also supposed to meet with her blood dr to see about the results of the specialized blood test.  All of this will have to wait or can wait.  My brain can barely comprehend what is coming.  A road I would choose not to take, but I road we will travel nonetheless.  I continue to  put my hope and trust in the One who already knew this would happen.  I choose to be grateful that they found it before he had a massive heart attack and could not be saved. I choose not to think about what I can't control and pray for God to work it all out.  The surgery, the timing, the unknowns, the financial hardships...He's already working things out.   This is hard. Hard for everyone, his family, my family, our children.   So, so hard.  Keep us in your prayers.  Might be a hot minute before I'm back here.  

And the coughing begins...again

 I sit here this morning, mouth burning, deep throbbing, pressing an ice pack to my face, after a difficult extraction on Tuesday.  My hormones are raging,  I haven't slept through the night in I don't know when because of sickness and/or pain.  I'm feeling a bit grumpy.  (is it obvious?) As I type, Lillian coughs.  She started coughing on Tuesday.  I ramped up her treatments on Wednesday, it seems to be helping.  As I mentioned in my previous post, I'm just not my best self at the moment.  My thoughts shift to a friend whose son's body is losing its earthly battle, my friend with MS is crippled in pain and has been for years, another friend is struggling with an aging parent.  Another friend stuggles with serious health issues and watching her husband's mind slowly deteriorate due to the cruel disease of Alzheimer's.  A missionary we support has buried a brother and father in the last three weeks.  Life is hard.  I ache for them and many others.  

 I read an article this morning from Key Ministries.  It is a group dedicated to caregivers living with special needs parenting.  It was about the sins we, I face, being a caregiver.  She listed the top 4.  They were, discontentment, envy,  pride, and ungodliness.  Well, let me tell you, I was a little shocked when I read the title.  As I read, though, I could see how some of these issues applied to me.  Envy and discontentment. Shots fired.  Raising my hand. ( Now let me back up a moment.. I have a few friends who have seriously shared their souls on facebook.  Sharing things that were honestly, quite shocking to me.  My thoughts have been,  I don't think I could share that with the world.  ) Well, here I am world, sharing my sins.  The Lord showed me many months ago my sin of covetousness.  I confessed to him, now I'm sharing with my fellow believers so you can hold me accountable in the future.  I do struggle with envy and discontentment.  Not all the time and not often but sometimes it burns through me.  And as I sit here, in not my best self, grumpy, self pitying, tired of hurting, stressed with a potential illness looming....tears sting my eyes.  Forgive me, Jesus.  Holy Spirit rise up in me and conquer all these things.   

Pray for us.  Pray that Lillian does not get sicker. 

 After a very rapid string of events, my husband with be having a heart cath in 6 days with a strong possibility of stint placement.  Of course, as murphy's law would dictate, they scheduled it the day of Lillian's next infusion.  While I can see her Crohn's symptoms increasing,  her infusion will have to wait another week.  Well, you know what ?  Murphy can have his law, because I have Jesus and that's all I need.  Thanks for hanging in for this hodge podge, somewhat jumbled mind dump I've created here today.  Keep us in your prayers as I know you faithfully do.  God is good.  

A rescue : a day in the life

So, Friday started out like any other day.  Getting up, getting lunch ready for Ezekiel and just the morning routine.  I had time, this particular morning to get Lillian's feeding in before we left for school.  She was upstairs playing. I called her to be fed and her newest response is, "ah berighdow" translated, I'll be right down.  Five minutes later, I call her again, same thing, "ah berighdown".  Five minutes later, mom voice "Lillian it is time to feed you, come down!" She trots down and begins to cry, telling me she's mad at me and telling me not to talk. I am used to this.  This happens more often than it doesn't.  I know this.  But, this day, I was just frustrated and tired of it.  She tries to get as far away from me as possible, but that's a problem when she's connected to a feeding tube.  We get in the car, head to school, drop off Ezekiel, and head home.  I *think* there is probably enough time that I can speak to her and she refuses to speak to me.  Again, I know this, but it gets old, and tiring, and somedays, I'm just not my best self. I call my oldest daughter and tell her I'm dropping off the sullen teen she ordered.  She laughed.  We came on home.  An hour later, big sister comes to the rescue.  Picks her up and they had a fun, sister day.  She hung out with Bethany and Bon Bon (Bethany's neighbor).  I'm expecting her back when Bethany picks up E from school. Bethany happens to mention lunch in front of her and then she wants to go to lunch.  So, she has gotten herself a lunch trip with Bethany's family and mother-in-law and sister-in-law.  As soon as they arrive at the pizza place, Lillian tells the MIL,  she's there for lunch because she's tired of her mom.  HA!

Basically, Lillian spent the majority of the day with Bethany.  They had a fun day.  Bethany even gave her a bath.  She rescued us both.  I'm rarely, very rarely alone.  I read my bible and prayed out loud.  It was even a sweeter time with the Lord.  

I'm grateful for my adult kids and the love they have for each other and the kindness they demonstrate to their littler siblings.  Whether they know it or not, that blesses me beyond measure.  

Saturday Shenanigans?

 Not good ones, either.  My son played a basketball game this past Saturday and my mom came up to watch.  The game went as planned and my mom took us out to lunch. We had just finished up eating lunch and Lillian sneezed.  About 20 seconds later I saw blood on her lip and thought she bit her lip.  Turned out to be a gushing nosebleed.  She's never had a nosebleed before. So, I perform basic first aid, get ice from the waitress (after I pulled what was left out of my cup) and pinch.  Blood is just soaking through to my finger.  Mom starts timing and this thing is not stopping.  After at least 15 minutes, I reach out to our dr who instructs me to do what I'm already doing and proceed to the ER in 10 minutes if it has not stopped.  The bleeding started to slow but was still coming.  So, after another 15 minutes, it finally stopped.  Mom was looking stressed; I was feeling stressed.  I prayed over her multiple times for the bleeding to stop because that's what I do.  Things like this, for Lillian, are just not ordinary things.  I was internally shaky and nauseous afterward but extremely grateful it stopped.  Mom hung out for a couple hours which was a blessing.   I contacted her Hematologist that day and let her know what happened and if this type of bleeding would be considered normal...I mean, I don't know these things.  She directed to take her to the ER if there was ever a bleed lasting longer than thirty minutes (in the future).  We also got the results from her genetic blood test about Von Willebrand disease, and it is negative. We are still planning a repeat platelet function study test in the next 4 weeks to see if that test comes back normal this time. This girl keeps her mom on her toes for sure.  

Just another little peak into the life we walk.