Infusion update

 Not much to say except the infusion went well aside from needing more than one stick to get her IV.  The nurse really dug around trying to make the first stick successful. It amazes me that even with the use of a vein finder shining right on the vein, they still couldn't get it.  The second stick was a quick success causing quite a mess, but at least they got it.  I pray they whole time they are going in for a poke.  Next week she sees a new doctor in our ever growing list and then she follows up with her pulmonologist the next day.  

In other news, we were supposed to have had a ramp and rails built onto our house at least two years ago.  That, for a number of ridiculous reasons, has not occurred.  When Matt had his open heart we desperately needed that ramp.  After Matt went through therapy (and still is) he was able to manage getting into the house with the rails and bars a very generous family member installed.  The local Lion's club got involved in volunteering to install a ramp.  Once Matt was home, I told them that while a ramp would still be useful, I didn't want to take away from a family that was more in need.  Present day, I get a message from the builder of the ramp stating a what they are able to do.  In the mean time, since Matt has been home our sewer line completely occluded with tree roots and to be dug out and replaced. A huge expense that we had to take a loan out to afford to have done.  Now, here's where it gets really good.  Had that ramp been built prior to Matt's homecoming, it would have been destroyed in order for the sewer to be fixed.  So, while I'm sick over the sewer expense...I grateful that God is in control and already knew that ramp could not be installed at that time.  

I know my last post probably sounded jumbled and messy, but that is how life is sometimes.  But, God.  Matt has been out of work with no pay for almost 8 weeks.  But, God. I was led to Acts 12 in my reading yesterday and was quickly reminded to pray, to believe what I pray that he will answer, AND be grateful when the answer does come.  

While life's circumstances continue to try to beat me down....

 Ok, I admit it, last night I was tired and discouraged.  Tired of advocating, tired of fighting, tired of financial complications and unexpected life things.  As I sat at my desk, head in my hands, tears flowing, I would silently ask a question..."why did he do that?  how can this happen?  how will we manage to? will he be ok going back to work?  where will the money come from?  how will this month play out with all her appointments?  how can I take anything else?????" Even as the questions flowed, scripture flowed back, then words,  "I will provide".  Sometimes it's hard to pray so my prayers sound more like questions and needing/wanting answers.  It's hard in the waiting.  It's hard trusting when there are no tangible answers.  I "sucked it up" got about dinner and nighttime things, went to bed and read a book until my eyes ached.  I laid down and the tears began to fall again.  When Matt came to bed I asked him if he was discouraged and simply said "no".  I guess that was all it took me because I felt reassured.  I don't want to burden him with my thoughts....but I did and I was able to rest.  

So many good things God continues to pour out on me, on us.  With each good thing there is, there is a bad thing that follows.  

I spent the day yesterday serving at a funeral.  The funeral of a man who meant so much to my family and served us faithfully even when we no longer were a part of his "fold".  That was how he loved.  Noone is perfect, but he loved and served the Lord up until his last breath.  Even his funeral was solely pointed to Jesus.  I had the privelege of loving on his family.  

Lillian has a lot of appointments this month with several back to back trips to KY.  Pray for safe travel and good results.  I think I'm dreading the GI visit more than anything because I know she will need to be scoped again and that means anesthesia/surgery.  

So I want to encourage you, as much as myself maybe..."in my distress I prayed to the Lord, and the Lord answered me and set me free. The Lord is for me, so I will have no fear.  What can mere people do to me? " Ps 118:5,6  

Ps 119:143 As pressure and stress bear down on me, I find joy in your commands.

Ps 120:1 I took my troubles to the Lord; I cried out to him, and he answered my prayer.

Pray for our safe travels to KY tomorrow and that her infusion goes without complications.  

Tiny update

Lillian has had a rough few days this week.  She has had a stomach bug of sorts, I think.  We pulled an all nighter Wednesday thru Thursday with a solid 3 hours of vomiting and her crying out in pain.  By 0330 I had started to dress because she rarely complains of pain and the screaming just about had me undone.  I can never just assume we have a stomach bug.  It was a rough, I mean rough night into 0730 that morning when she started another episode.  She seems fine today, but I'm really not certain that this wasn't a flare.  She had a vomiting episode Tuesday evening and was fine all through the day Wednesday.  

Matt had a follow up with the surgeon today and the NP is pleased with his progress.  He will go back in two weeks to follow up with the actual surgeon.  

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.