Caregiver fatigue

It's real.  It's hard.  It's consuming.  I'm tired.  Not tired like I haven't slept tired (but that's true too). The mental and physical stress of being a full time, rarely get a break caregiver is weighing me down.  I've said this before, but in case you don't remember...Lillian cannot bathe, bathroom care, or feed herself.  She can dress herself, but the choices are not always the best.  Most of my days are spent from one end of her mood to the other end.  One end being she's mad at me for taking care of her to no personal space love.  Aside from personal care giving, there is medications, treatments, doctor's appointments on end.  I.am.tired.   Of course, there is constant concern regarding illness and am I doing what's right and yada yada yada....never.ending.  

I am so grateful, we have managed thru December without hospitalization.  I have experienced joy and peace throughout the season while walking through tough days.  I am grateful but I'm tired.

I did not want to go to church today.  I received a text from a friend who is in her own caregiving battle.  My first thoughts are that she must be tired.  I told her how I felt and asked her how she felt.  We know the Lord is our strength.  Most of our days, though, are fighting uphill battles with those we love the most.  We got into church just as the praise songs had started.  We are sitting in the balcony to avoid the crowd.  I miss physical contact and greetings with my church family.  So I often holler from the balcony to blow kisses and air hug those that I miss.  

I wanted to take E to see a movie over Christmas break, but I have to think and look at showtimes and try to go when I hope the rest of the world won't be attending, in the end, I will let Matt take him and I'll be on duty with L for the duration.  I know you might be reading this and thinking, that's not such a big deal.  Having your family constantly divided it exhausting.  

Thank God for his neverending mercy and grace, because I need it.  I NEEEEED it.  

Over the hill and how about that CT?

 Lillian is doing better, still needing frequent treatments and still has a good cough, but definitely over the hump I believe.  We saw her plastic surgeon today for the results of the cat scan and her entire left frontal sinus is blocked all the way to her nasal septum. He does not believe it's a tumor.  He's referring her to ENT because she may need a surgical procedure to drain it...oh and she has to have another head CT to see, if by chance the steroids helped at all. Long day...long week...long couple of weeks.  

17...sick...and no scope next week

 So Lillian had her 17th birthday and it was so much fun.  She enjoyed herself so much!   A week later, she got sick. A respiratory infection, I'm sure. I had to go up on her treatments every four hours and prayed things would not get worse.  She had an appointment today with her pulmonologist that they added us on to so he could give clearance for the scope.  He did not clear her.  So the scope we have been waiting to do for well over a year to check her Crohn's disease is not put off until March. I'm fine with that, really...I don't want her under anesthesia sick and neither do the doctors.  

Now, to say everything was smooth sailing...it wasn't.  I had to leave here (have her fed and treatments done and have Ezekiel to school by 8) as soon as I dropped off Ezekiel to get to her 0930 appointment.  Guess what, she wasn't on the schedule.  I recently got a new phone and I couldn't log in to mychart to show the messages that clearly stated she had a 0930 appointment.  After quite some time, a young woman came out apologizing over and over that she put the date in the system wrong and we could go ahead and see the nurse practitioner...(in this case, I would have preferred her doctor but what. ever. ) Immediately, I was near tears, which is cray.zay.  Why should that make me dissolve into tears???  Lord help me be more gracious....ugh.  

They are putting her on a round of steroids and if there isn't significant improvement by Monday, I'm to call back. I'm also to increase her inhaled steroids for the forseeable future.  She's supposed to have an infusion next week and I'm thinking that's not going to happen if she's still in this condition.

I'm tired.  It's been a long busy weekend through today with my husband at work.  I'm so grateful she's not in the hospital.  I can't help feeling a bit discouraged.  She's never cleared up from this previous nasal issue either.  I'm rambling.  

That's the story for today.  Pray for her.

Lest you EVER think our life is boring...Gross out warning.

 For months, and I mean months, Lillian has been dealing with some very thick, green drainage from only one side of her nose.  Perhaps since June or even May.  It's super odd because usually when she gets drainage of any kind her asthma flares and sometimes, she even ends up with pneumonia.  So, this drainage is so thick it just sits there, and it seems to never end.  When she does happen to sneeze, it is unreal.  I'll spare you the details.  So, in August, her doctor put her on antibiotics.  Did not help.  I called a week and a half ago and got her in to see him.  He described that nostril looking like someone caulked her nose with snot.  Just the one side. He put her on another antibiotic and said we'd look in 10 days because he didn't want it to abscess.  (there's something my brain never considered) I took her back Thursday and there was no improvement.  Her doctor is going to be gone for 2 months.  He put her on the antibiotic course again and put in a referral for her plastic surgeon because she might require revision surgery for lesions because of all the surgeries she has had in her mouth.  He also has us doing aggressive nasal washes.  I barely kept it together all the way home.  I cannot even fathom her having another mouth surgery.  Those were terrible.  TERRIBLE.  Not prepared in any way, shape or form for that possibility.  

Today, this afternoon, I found a large abscess behind her ear.  At the bottom of her lobe. She needs prayer friends. I need prayer.  I'm not afraid, but I'm discouraged.  I know the Lord is already there.  

This is stressful.  

By the grace of God, she is tolerating the nasal washes like a champ.  I'm soaking the abscess in hopes it will recede.  

Out of sorts and edgy...and Dr GI appointment

 That's been my day.  That is how I've felt.  Can't really say why.  That is not my general disposition.  I'm tired and haven't slept well in months for several reasons which I won't go into, so why don't I just quit whining and get to the update.

We saw Lillian's GI dr today and dietician.  When the nurse took us in the room, she stated a med student would be seeing us first and then the Dr.  I was not thrilled.  I didn't want to go through her entire history with a new person.  And I almost said as much, but I bit back my words.  When the student walked in, I knew her immediately.  She had been on Lillian's team the last two times she was admitted.  She remembered Lillian when she saw her name on her list this morning.  It was nice to see her outside the hospital setting.  

So....she is going to be scheduled for another scope to see if she's in remission.  He still wants me to try to collect stool samples.  Good times never end here...HA! Now I will have to contact her pulmonologist and hematologist to see what they want to do medication wise prior to the procedure because she will be under general anesthesia.  Due to her history, she will also likely have to have a 24 hour stay just to be on the safe side. 

She gets her infusion this coming Wednesday and after the scope we will have a forward progress plan.  

In other news, I didn't blubber like a baby this time. I told him I was pretty stable today and he was like no it's ok, you can breakdown it's fine....LOL.  He probably has to pep talk himself when he comes to our room.  

Grieving

 My 91 year old grandmother took her last breath last night. She was admitted to the hospital a week and a half ago with difficulty breathing.  She's overcome a lot in the last few years, breast cancer, a ruptured bowel and sepsis, rehab and then back to living on her own.  Several weeks ago she took a tumble down her concrete steps and had been in a lot of pain.  It's a long story, but the end is, she was relieved of her suffering last night.  

It has been a long week and a half.  She had her mind up to the very end until the morphine took over.  She knew it was the end. 

 The grief is suffocating.  

My grandma played a huge role in my life as a child and as an adult.  She was my safe, soft place.  Mostly. Ha!  

Lillian seems to understand, I think.  She cried as hard as I did last night and that was doubly awful.  So today, I'm trying to bite back my tears so she doesn't suffer too.  

Pray for my mom and my uncles.  This is hard.  She'd probably kill me for posting this picture.  Fairly certain she's holding Ezekiel in this one and that is a real smile!! 

Ecclesiastes 3:1-15

Some days are more difficult than others

Today has been hard for several reasons.  My kids turned into the bickersons the moment we got into the car.  Lillian's mood swings have been far and wide which is exhausting and her little brother just jumps on the antagonistic bandwagon.  Does not help that I'm sleep deprived from nightmares.  Maybe that's the whole problem to begin with.  (me!) 

There is an ongoing health emergency for my grandma.  

My heart is heavy for multiple children who are suffering.  

Fellow Moms/grandmas who are in the trenches of all that entails.  

Friends mourning.  

All I can do and the best I can do is pray.  In all transparency, I'm heavy hearted.  

I trust the Lord.

It's been a long day.

Pray for us.  

A barbie girl in a barbie world

 Lillian had attended the movies with her siblings some time ago and saw the ads for the Barbie movie.  She LOVES barbies. She told them on the way home that she wanted to see it and it be a girls night out with Grandma, Mom, and sisters that could be there.  She picked the dinner place, Panda Express, and then we headed to the movies.  

Turns out the movie was pretty ridiculous.  Do NOT waste your money or time.  Lillian didn't even fully enjoy it. She gave it a thumbs down halfway through.  

Big sister Bethany made our shirts which she was also displeased with wearing, this girl does NOT like any clothes with writing on them and never has.  

 The movie may have been a disappointment, but the memory will be a lasting one for me. 

Infusion day

 Yesterday Lillian had her infusion in KY.  It went smoothly, except for the IV which seems to always be an issue.  We got a nurse we knew and I'm starting to recognize people, which is interesting because this is only the second time we've actually seen their entire faces.  No masks.   We are due to see her GI doctor in two months and make some decisions about her next scopes.  They were not joking when they told us her immune system would be compromised.  I can't remember her being sick so much since she was a little girl.  I don't like it.  She's even gotten to the point that she begs me to take her to the hospital.  Heart.break.ing.  I'm not sure, at this time, how much longer we will continue to have the infusions.  

Matt is doing well, still in cardiac rehab and still not yet working full time.  He struggles with fatigue.  Pretty normal I think.  

After our all day event in KY, we had another BIG even to attend that evening.  Our fourth daughter, Madeline, got married to her long time boyfriend in a small, private family ceremony on her now,  Grandparent-inlaws property.  It was short and sweet which is what they wanted.  Hard to believe I have another son-in-law, though we treated him like family anyway.  We enjoyed getting to meet his parents and grandparents.  I cannot believe I have three married kids.  Lillian was not happy to not be involved in the wedding, but she quickly got over it and enjoyed being there.  

Thank you for continued prayers as we "juggle" a lot of stuff in our lives.  

Here's a little snapshot of last night.

And so it goes

All the "normal" milestones she missed.  I remember being ecstatic when she could lift her pinky finger....or the first time she actually smiled.  I also remember crying because she didn't smile at me first.  My heart believed she didn't see me as her mom, but as her "nurse".   May sound crazy, but hey I'm just giving you the truth as it seemed back in the day.  

There is a friend from church that Lillian identified as "one of her people".  When she does this, we usually don't know why...we don't know the reasons.  So, Sondra has been one of her people for a many years.  She seeks her out to hug her on Sundays.  One Sunday, when Sondra was at the altar, Lillian insisted on going up beside her and knelt and prayed beside her.  This past Sunday, Lillian left our seat, when the preaching started, gathered her things and went to sit by Sondra. A few weeks ago, Sondra sat in the same row as us and Lillian immediately picked up her things and went to sit down beside her.  It was not lost on me, that my "teenager" got up to sit with someone else on Sunday morning.  My heart took joy in it. 

I so appreciate the love our friends pour out on Lillian.  I love that they accept her and continue to try to build relationship with her even though she can be shy, sometimes difficult, and a lot of times difficult to just plain understand her communication.  I appreciate that they don't avoid her. I appreciate that they continue to make efforts to communicate with her.  She doesn't have "typical" friends.  I adore when other kids speak to her (even when she often ignores them) 

So, all that to say, thanks for loving us.  Thanks for loving her.  Thank you for adding joy to my days. You will never know how much I appreciate it.  

How is she doing and GI update

 While Lillian has improved, she is continuing to struggle with feedings and retching.  We are back to only pedialyte and she is still not feeling or acting the best.  We saw her GI doctor today.  He ran blood tests, did an abdominal film, he wants stool studies, and a urinalysis.  The stool samples and UA will have to be done here. 

He ordered meds for abdominal pain, a new stomach medication, and more antinausea meds.  Based on my limited knowledge, it appears her blood tests are fairly normal...but I'm no doctor.  Still waiting for his feedback.  I don't know about the film because their computer system got hacked and so there are issues there.  

There was no discussion about further scopes.  

I was trying really hard not to be tearful, and I was doing well. Then he asked me about something and I said to be honest there's been a lot going on in my house and he said like what.....well, that's when I cracked.  My mom chipped in about Matt's surgery but as most of you know there have been many other stressful issues in the house over the past several months.  

I want her to be well.  That is all.  Unfortunately, the fact that she is medically complex makes things so much more complicated.   

Having answers is hard.  Not having answers is hard.  I'm tired.  It was a long day.  

This could be stress, this could be her period, this could be a Crohn's agitation...this could be kidney/bladder driven.  This could be an intestinal infection brewing. So many questions unanswered.  That is where we are.  

Never ending

 Lillian woke me in the night Saturday, I failed to look at the time, dry heaving.  This continued for the entire night and all thru Sunday up to 11pm Sunday night.  We gave her some Pedialyte thru her feeding pump.  Yes, we still keep a feeding pump on hand for exactly this reason.  I prayed.  I prayed and prayed. 

I keep saying I'm looking forward to and I'm ready for a new season.  A season without sickness. My son was so sick this past Monday, Tuesday, and Wednesday, he had to stay home from school...all sinus driven.  He was miserable and could NOT stop coughing.  

Well, guess what?  I'm thinking that is just not my season, YET.  I'm struggling NOT to struggle.  It almost makes me laugh...you know, the maniacal laughter that might sound like I'm losing it?

I love making cards.  I have a long list of cards that need to be made...HAVE to be made. I find it so therapeutic, but I'm even having trouble getting my creative juices flowing. 

I guess that is where the enemy wants me.  

I'm know I'm not defeated.  I know life is hard.  I am grateful.  I guess I can't really describe the exhaustion of walking through being a caregiver 24/7. I could do it 8 hours a day when I was not attached....carrying empathy rather than sympathy.  In this walk, I carry it all.  The burden of suffering.  Watching my child suffer.  That hits so much different (as my kids would say)

So now, in my weariness, I'm grateful she is doing better now.  One feeding in that has not come back out.  She has bruised her lip from biting it.  Her stomach sunken in below her hips, vest hanging because that's how little it takes to ravage her.  (and ruining her favorite day of the week, Sunday)  

I see you, you can't have us.  We belong to the ONE. 

Pulmonary Update

 Everything went well with her Pulmonary doctor today.  Routine and simple.   On the way home, however, I thought I'd not use my gps to drive home because surely I can manage.  Wrong.  Thankfully, only about six miles out of the way, but I hit the toll bridges four times.   SMH.  

Thank you for your prayer for safety and your prayers in general.  Matt started part time back to work on Monday.  He's doing ok, just very tired.  We did hear today that the STD company approved him, so we should be getting partial payment, I think 40 percent but they failed to indicate when.  I *hope* they don't delay since we've been waiting so long.  

Thanks again for continued prayers.  

Nephrology Appointment

 So, apparently, Lillian has had high levels of protein in her urine for some time.  She does not have any other symptoms that would indicate that these are true test results...as in false positives. The only way to get true results is to collect her first morning urine once a week for three weeks and run them to the local hospital for results.  She is also doing some blood work at her next infusion in June to help make an accurate diagnosis for this.  We will see her again in three months for all the results and final final.  She was a wonderful doctor. A lot of this also revolves around the Crohn's.  (which I did not know) She also advised that we give her an additional 5 to 6 ounces of water throughout the day.  All in all, a great appointment.  We head back south tomorrow for her routine pulmonary visit.  Pray for our safe travels.  

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.  

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.  

Infusion a week delayed

 Lillian is almost completely back to normal.  She still requires a couple extra treatments a day, but that is par for the course.  This morning started rather differently.  Matt came to me with a huge red patch on his lower calf and pain above it.  The short version of the story, the doctor sent him for an ultrasound to rule out a blood clot and it was ruled out, praise Jesus.  He appears to have cellulitis, so if there is no improvement after a week of antibiotics, he'll need to be seen again.  We made it to KY for appointment right on time.  Sadly, they blew her vein 3 times before they got a good IV.  3 different nurses, 4 attempts.  That in and of itself added an extra hour to our day.  She had a genetic test and other labs being added by her hematologist and the nurse didn't put the blood in the right tube, so she had to come in and draw more blood off the IV which means the first mil has to be wasted.  Then the vein was positional so it didn't want to give the blood.  That took a hot, few minutes, literally about 10 minutes.  It has felt like the LONGEST day.  We had safe travel and my hubby is does not have a blod clot, so thank the Lord for his goodness.  Course, He is good no matter the circumstances.  Can I get an AMEN?  I am still battling the affects of the flu and felt so good yesterday but am feeling very exhausted today.  Going to hit the bed and rest.