Tuesday, August 16, 2022

6 Blocks later

 Today Lillian had her bone density scan, which was a very quick, noninvasive procedure.  It all went like clockwork AFTER we got where we were supposed to be. I'll be brief.  Basically, I was told multiple times that this test is done at the "hospital downtown". My assumption was that it was the children's hospital.  I should never assume.  After the very kind receptionist in the Radiology department walked us several blocks to a "pavilion" building, (not in a hospital)  we made it to our destination.  Test done and we hoofed it back to our original destination.  My mom treated us to Olive Garden (Lillian's choice).  We had a little retail therapy (thanks to a gift card I was gifted)  and headed back.  I've prayed and prayed this test is normal.  I am CLAIMING a positive result.  

This morning was hard.  Lillian has really struggled with her gut since her last, cycle, flu, treatment. Her stomach is very bloated and I'm not getting much air.  Her site is leaking and breaking down her skin.  I had to put gauze in there at lunch today.  She cried when I touched it to do her first feeding today.  We finished and I cried.  Well, the tears were there, but I had to hold them back.  I said some prayer and tucked all my crazy back in.  I can't cry openly, it bothers her so badly. My heart is fragile because I hurt for my child.   The words of a friend from church floated through my mind, "He's already there, Michelle".  

I got several texts on my way home, sweet friend left some main dishes in a cooler at my door, Another friend sent a text because she sensed spiritually that I needed it.  A family member checked in just to see how I was.   Sunday another dear friend, gave me a plaque that is just so kind and touching.  My sweet sister-in-law brought me a vase of flowers from her garden and blessed Ezekiel with more shoes and back to school items.  I am loved.  He sees me and sends his love through others.  I am blessed.  

Wednesday, August 3, 2022

Infusion #6 and Hem/Onc followup

 Lillian's infusion went like clockwork.  They had us in a tiny cubicle but later moved us to a closed room which was super nice.  They got her IV on the first stick, (I've been praying ahead) and were able to pull all the blood they needed which was A LOT as the Hematologist had added on numerous more tests. I think they took 14 vials this time.  They are getting to know Lillian and everyone LOVES her.  

We saw the hematologist after her infusion appointment.  The first set of tests didn't answer any  questions.  She still has a very, very elevated PTT.  (this is a bleeding time test) This indicates to them that there is something definitely wrong going on in her body that isn't related to any of her other issues.  One of the tests they did today was extremely elevated as well, so they are ordering another test that needs to be done at another hospital location, which we are scheduled to be at early September.  It is just a blood test, but I do have to schedule it.  If her current blood tests they are still waiting on don't provide answers, there is a genetic test they want to run which is complicated with insurance. We shall see.  

I discussed with her our visit with Peds Gyn.  I told her I have decided against the IUD unless her bone density scan (DXA) is bad.  Lillian does not want to go to surgery and she has so little choice in all that she faces.  If the shot gives us the desire we need in suppressing her cycles, then I'm ok with that.   And I cried a little...and I don't know why....except that, it's just a lot of stress. We did escape July with no cycle, but she did start today on our way home...a little disappointed, but knew it would not work immediately. Also explains why she had a total melt down yesterday over me brushing her teeth.  I told Matt yesterday, she is so emotionally all over the place...it's mentally exhausting.  I told him it's a good thing I don't drink or he'd come home to a drunken wife.  Funny, not funny.

  We did learn today that if she requires any surgery in the future, she will need extra IV meds to protect her from bleeding out.  

Somehow, (can't imagine why) I managed to get behind on our toll bill.  Yesterday, I was paying the deficit and putting more money into the account so we still get the lower rate and I thought...add this to the list of things I never knew I'd need to do.

Lillian got a haircut Friday and I'd say she cut at least 4 inches off.   She let our hairdresser wash her hair in the sink, which a huge thing.  She was highly anxious, but she got through it.   I'm pretty sure I know who the generous soul was, but when we were finished, I was told our bill was taken care of.  Once again, blessed, once again a wink from God that he sees us and uses so many to bless us.  Every kindness, the cards in the mail, the texts, an army of 10, ...I walked out on my porch yesterday to find a corn shucker left for me.  Prayers upon prayers that I know are spoken.  Do you know Him?  Can I tell you about Him?  HE IS FAITHFUL.  I can trust Him.  My heart is heavy sometimes and I sometimes long for a bit of solitude, but know, these feet don't hit the floor without HIS strength.

Friday, July 29, 2022

Overwhelmed and Blessed?

 Can the two coexist?  I say yes.  I sat here this morning thinking on all the things.  Well, first off this is a bill pay/budget day for me.  That can be overwhelming in and of itself at times.  My mind started running,  school about to start...the layers of "stuff" that will add to my load.....no longer having respite care because my daughter moved on to a full time job.....the layers that will add to my days...can I face the challenge of hiring a person I don't know to help.....a new job for my husband which is great but no overtime....can I serve in making a dish for a church dinner......what will I have prepped for our dinners the next two weeks....how can I use what I already have.....the lists....needs of my children....the looming infusions and hematology and pulmonology appts ahead and what will I do with my son, and who can pick him up from school that day......am I making the right choice for her care....I am aware that these are ALL things that face every other person in the world.  I don't feel sorry for myself, but I am overwhelmed.  Although,  everyone faces these challenges, not everyone is faced with a medically fragile child to care for as well.  The tears start to flow and I pray.  God help me.  I need wisdom, I need guidance.  Help me release the panic I feel. The blessings flow in to remind me, I am not hidden.  Random acts of kindness have flowed over us in the past week and a half.  Some of them specific to me others for our family.  They come in the form of an Aunt  who takes my son shopping for school shoes and buys him school clothes, a daughter who purchases school supplies out of love, a mom who takes us three out to lunch and sacrifices time to sit through appointments, friends who show up with ground beef and a gift card, a sweet friend who hands me a gift bag of goodies, friends who listen and take me to dinner, financial helps from a coworker and friends and our church.  All of it helps and reminds me He sees me.  He sees us.  

I'm struggling with the unknown and to be honest what will be known. I continue to trust the Lord and that He does.  I am sad that my child continues to face struggles.  Sometimes, the thought creeps in, how much can this little girl take before her body can take no more.  I do not linger on these thoughts, but I'm just being honest here, they do come.  But at the end of the day, the Lord is there.  He knows and he fights for me.  I need only to be still.

Are you struggling today?  My advice, "the Lord will fight for you, you need only to be still" Exodus 14:14

Friday, July 15, 2022

Dr.Gynecologist Visit

 Today we saw a new dr.  A new -ologist in our lives. First off, to those traveling via I65, do not drive to the other end of town to get on 65 as the on ramp is closed.  Let's just say I've now been to the actual towns of Dudleytown and Union town.  Took me 45 minutes to get to the Uniontown exit and travels through the countryside I have never seen, thank heavens I left extra early...thank you Holy Spirit for that prompting....back to your regulary scheduled update....

I did make a brief post on facebook last night about our "heavy" day.  It felt weighty to me.  We got to our appointment exactly on time.  They did her vitals and ushered us into a room where we sat for over an hour after her appointment time.  After I stuck my head out the door and asked if we were forgotten, the doctor arrived about five minutes later.  Of course, steam was slowly escaping my ears because I KNOW they would never hold her appointment time for an HOUR if we were that late, (that drive was stressful) I digress,  I relaxed and delved into the medical history of my child.  Why I think it will be an easy fix.  I, in fact, sat there wondering why we were even here.  I mean we got the shot going,  that will help her cycles, why are we here?  And then, the ball drops. The doctor starts informing us. 

The cycles are so heavy due to the Crohn's inflammation.  Her preferred treatment for Lillian specifically would not be the shot due to the fact that long term use of the shot causes osteoporosis.  Due to the fact that Lillian is so small and has little muscle mass, it's an extra risk.  She would prefer to place a medicated IUD under general anesthesia.  My next response is, if we go to surgery why not a hysterectomy or ablation?  I was not expecting her response at. all.  Those surgeries are major abdominal surgeries ( i know this) however, what I did not foresee was how extra dangerous it is for someone with Crohn's disease.  She said there is so much inflammation it would be very unsafe to perform a hysterectomy.  An ablation, which is where they cauterize (or burn) the inner lining of the uterus would only be effective for a few years and would cause a lot of scar tissue and would result in needing a hysterectomy in a few years anyway.

When we started discussing surgery, Lillian became very scared and started crying and was hanging on me for dear life.  I couldn't even talk about it to anyone later because the words surgery threw her into complete anxiety and tears. 

She is going to be scheduled for a bone density scan.  She's also already scheduled for an abdominal pelvic ultrasound in early September to prep for IUD,  

I don't feel settled about any of it.  I'm gutted, she has no choices and I have to decide which is the least worst option...not the best...no the least worst.  I'm sad.  This is hard.   Help me Jesus....this is hard.

The drive home was also a mess.  Delays on the interstate, nearly running out of gas, (although I left home with more than enough) more back road explorations....such a long day. I'm grateful for safe travel and that I did, in fact, make it to a gas station in time and that my GPS was actually accurate this time.  

One foot in front of the other and Jesus beside us.  That's what I hold on to.  Peace be still.

Thursday, June 23, 2022

Is it well?

 Yesterday, I told myself over and over, in prayer, whatever we learn today, it is well with my soul. All day.  I chanted it over and over.  I got home, felt tears come and go but nothing every really came.  As I prepared for bed, I continued to talk with the Lord.  All I could think about was the woman with the blood issue that reached for the hem of his garment and was healed.  I had updated a prayer warrior friend and as I lay there, the tears, the sobs, they came. All I could say to the Lord is, it isn't well ..i lied. I had no other real thoughts other than I think the stress just poured out of me.  As I lay there, trying to cry quietly, (as one can who is sobbing) so as not to alert Lillian, my phone rang and my prayer warrior friend was calling.  She talked and I cried harder...silent mostly...I think.  She began to pray and as I listened to her words the sobs subsided, the tears slowed.  She asked me what she could do to help me and I know she meant it.  Honestly, I just don't know what help to ask for...if that makes any sense.  I remember telling her all I know how to do is keep moving forward.  Trust the Lord, keep moving forward.  

It takes me a little bit to wrap my mind around these situations.  I need to get a grip on them.  I don't mind sharing our journey, but I need to absorb and process it so I'm not crying about it. If anyone knows me at all, they know I'm not ashamed or embarrassed to cry, but I just need to process...

I had a stressful dream, but I do understand them as it applies to my current situation.

Life is hard.  God is good. I shall come forth as gold.

 We went to her appointment and there were no solid answers.  I gave a great deal of information about her history and basically answered questions. They repeated the blood tests that were done by the other hospital and got a lot more.  We won't have answers for about 6 weeks.  I messaged her today for some clarification on some things we talked about yesterday, but she is out of the office today.  

Wednesday, June 22, 2022

Hematologist Visit

 We spent an hour or so with the Hematologist Nurse Practitioner today.  (just got home) Basically, the drew the same tests plus a bunch more.  If the PTT they drew comes back high then she definitely has a bleeding disorder which could fall into a number of categories, which will require even more blood testing.  She did give the ok to give the depo shot for her cycles but also would like us to start seeing the pedicatric gynecologist due to the abnormal cycles she is experiencing.  That test will take 4 weeks to result.  The other test that was elevated is an indication of inflammation which is indicative of the her Crohns?  I'm not sure.  We will follow up with hematology in 6 weeks with a a somewhat better picture of where we are heading with all this.  

Wednesday, June 8, 2022

Remicade #5 plus some

 Lillian had her fifth infusion today.  They had quite a bit of trouble getting her IV in, but thankfully another nurse was able to get her on the third stick.  (who knew I'd be praying over needles?? Seriously, though, I've been doing that a long time)  The infusion went well after that, (can you feel the but?) BUT, she started having more bleeding today in her stool.  Her bloating seems to be worse this last week.  The doctor has asked us to keep a watch and hopes that this infusion will curb any further bleeding.  I am supposed to keep up with them and let them know how she's doing over the next several days.  His thoughts are that perhaps eight weeks is too long between treatments.  So, please continue to pray over her these next few days as we see what unfolds.  This is mentally and emotionally difficult.  

I struggled over the weekend as we received several new hospital bills relating to my ongoing urinary issues and Matt's new diabetic diagnosis.  We had received an unexpected financial gift the previous week to help with all the added expenses of the extra trips and meals, directly after that we got the hospital bills.  Tears stung my eyes as I spoke to the Lord about my frustrations.  We can't seem to get ahead without being knocked down in some way, shape, or form.  I cannot express my thoughts and frustrations adequately.  I spent the evening in worship in my living room and then Sunday morning the guilt of my doubts swept over me.  I asked him to forgive me.   I know He is already there but I get my ownself ( as my facebook friend would say) in the way.  I fail everyday, but he never does.  A hundred dollar bill was slipped into my hand that same day as a thank you for serving.  

Today, as I've managed the calls and messages between nurses and the dr about the new bleeding....I'm just tired.  I DO NOT want her to go through this again.  Period.  Yet, here we are. Taking pictures of poo and wondering. 

We got home without hitting any serious weather praise the Lord.  There was a letter on the counter in the mail and a financial gift had been given to us to help cover gas costs.  Friends came over last Friday and scrubbed my main floors and various other cleaning duties that get neglected in the day to day of our hectic season.  Another friend is bringing us dinner tonight.  I might cry on her as I share our day.  I had to spend the day in the courthouse yesterday having been sequestered to jury duty.  I did get called but they excused me as soon as they questioned me regarding my inability to serve on the trial that would take place today.

Blessings are everywhere and I'm grateful. Thank you for continued prayers.