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.