Friday, November 25, 2022

Sweet 16

 Happy Birthday sweet Lillian. Happy sweet 16. I'm not sure how 16 years have gone by.  They surely did not pass quickly, but they have passed.  This past year has been full of new challenges for Lillian's health.  A new chronic illness, multiple hospitalizations, another broken bone....highlights you don't intend to chronicle, but the highlights that are.  

I cannot say, "I can't believe it, or I can't believe she's 16"  (only for the same reasons that my other children have had the milestones of growing up as well)  Not every parent is afforded this gift.  For this child I prayed and the Lord has extended her life well beyond the years we were told by doctors.  I will rejoice and be glad.  I will not look to the past struggles, but to praise God for his mercies in all of them.  I will look forward to the years to come. I will continue to pray for her health and well being.  I will be grateful she is standing here, rubbing her head on mine, meowing like a cat.  HA!  (mind you, she's not a fan of real cats)  I will rejoice in the fact, that the Lord in his wonderful love, uses her life to draw me closer and closer to Him and the understanding of where true joy is.  Not in my circumstances, but in Him.  

She wants to go to Chili's for a late lunch with her sisters, so we will.  We will celebrate on Sunday with family and cake.  

I wanted to make a big celebration today with everyone that would want to be with us, but given health concerns, it will not happen.  She won't know the difference and she will LOVE every minute of the days to come.  


Wednesday, November 23, 2022

This is the day...

 repeat. this is the day..that the Lord hath made...that the Lord hath made that the Lord hath made, we will rejoice, we will rejoice, and be glad in it...

This was a day, for real.  So,  three days after Lillian came home for her last hospital stay, she fell down our second floor stairs, vaulted over the gate at the foot of the stairs, landing on her head, butt in the air.  After a very quick assessment, it was clear that she broke something in her hand/finger on her brachial plexus arm.  We took her to our local ER because KY is just too far to drive for a traumatic fall.  Thankfully, praise the Lord Jesus, she only had a broken finger.  Thing was, it was rotated way away from her other fingers and twisted.  The ER doctor informed me and two of my adult daughters that broken fingers are no big deal, they don't do anything for them and we could see an ortho or follow up with our pediatrician.   So, me being me, and not a big fan of the ortho group here, for her (we have been there and done that with her broken leg) I called our pediatrician. I was told by staff he would review the films and get back to me.  That was Monday, the day after the fall.  The ER gave no after care instructions other than pain relief medication.  I was told by our pediatrician staff we could remove the splint in a week.  I, on Monday, think everything is in hand, no pun intended.  By Wednesday evening, 9pm, Matt notices a prolific rash all over her torso and back.  I make a few phone calls to trusted friends and family and take their advice and get on the phone with the pediatrician Thursday morning.  Remember,  Lillian has multiple medical conditions and is on a biologic infusion which is an immunosuppressant.  She already has an immune disorder and all the other host of issues she has.  Life has been a little crazy these last two months.  Back to the phone, I am on hold at 8am being the 14th caller in line.  I remain on hold and eventually I'm caller 8 and I've been offered, by their call system, that if I wish I can leave a message and my call will be returned.  So, I did.  They called my back at 9 and I give them all the pertinent information, and they tell me they have no appointments, and I should have stayed on the line waiting.  Who knew?  They ask me to send a pic in the patient portal.  So, I did.  I, then reach out to her GI team to see if this is related to the treatment she had the prior two weeks ago.  By 5pm,  GI has said no connection too far apart.  I get a return email in the portal needing an explanation of the picture, which I did not know had not been relayed.  I was simply asked to send a picture.  I have a late night conversation with our pediatrician and the consensus is that it is viral.  Mind you, the rash is spreading daily and ugly.  I send more questions in the portal friday regarding the rash and the broken finger, with no response, which ok, I get it it's a friday and these things take time, I know ALL this.  I decide she must have a bath and ask my oldest daughter to come over to re wrap.  Well, I'm no doctor, but looking at that finger I jsut can't figure out how a splint is going to make that thing straight again.  I call the ortho doc in town and I try to take her to walk in clinic and as we are in the car, the school calls me to pick up Ezekiel because he is not feeling well.  Ortho visit thwarted. After getting no response on Monday morning, I drop my son off at school and head straight to the ortho walk in clinic.  They take her straight back and the clinician seeing her is almost berating me for waiting a week to bring  her in, wait for it....because this finger is going to REQUIRE SURGERY. Him" I saw this report last week and didn't understand why you didn't bring her in" Well, let me tell you, I felt absolutely sick to my stomach. SICK.  They scheduled her the next day to see their hand specialist. We returned home and I sent another message in the portal, shared my heart with those same trusted friends and family, left a phone message with the ED director, and off we went to head out to her chiropractor appointment.  As I was driving, I started to cry and didn't know if I'd be able to stop.  I started reciting in my head, help me Lord over and over because words would not come for how I was feeling, and rejoice and be glad was floating around in there too.  After about 5 miles, I started to say, you are sovereign, Lord.  You already knew all this and I will trust you.  

Enter yesterday, (I leave messages for our pediatrician practice manager and the ED director, again) I call her pulmonologist to tell them she's going to need steroids for surgery, because she needs them 3days prior to surgery.  I spoke with his nurse and was reminded that her pulmonologist won't approve surgery for her in a non-pediatric setting due to her health issues.  Well, my walls came crashing down, tears fell.  I hung up with her not knowing what in the world to do and feeling more of the failure that comes along with being failed by people who we depend on to help us make decisions for her.  I get online and start calling the pediatric orthos in KY.  I get directed to the right practice and am told an urgent message is being sent to the clinical team and someone will call me back.  

I then get a call back from the pediatrician's office and I share my concerns with her.  Longer story shorter, we wind up in the pediatrician's office at 1145 to be seen for the rash that continues to consume her tiny body.  They mono tested her but that was negative.  Nothing gels with it being viral or an allergic reaction.  (two doctors are now evaluating).  We leave to get some lunch and just about 10 minutes after our food arrives, at 118pm, the practice from KY calls to get her in at 220.  We beelined it to KY where after xrays and discussion with the dr there, he feels surgery is best to avoid given her extensive medical history.  They numb her up (which was absolutely horrible) which was probably a matter of minutes but what seemed to last eternally.  He came back and spent some time manipulating (reducing the fracture and rotating the bone back) and voila, it was straight again.  They sent us downstairs and made a custom arm and finger brace for her.  We go back in three weeks.  We left home yesterday at 1045, we returned home at 7pm, I think.  Barely having had lunch or eaten any dinner.  

The bottom line is, Lillian gets great care from her pediatrician.  She got great care in our local ER.  She got awesome care at the Louisville Hand and Arm specialist.  The problem, sometimes, lies in communication.  Let me tell you, I've done a lot of communication the last several days with the powers that be.  

When we arrived home last night, I had a message from PA who saw her in the office at our local ortho, concerned about me cancelling her appointment.  Even though, I explained the entire situation to the staff, HE wasn't given the information.  

Everything moved quickly yesterday.  I was not expecting to do any of that.  My hair was greasy, missed our hair cut appointments, but broken finger fixed, check, rash- still a mystery. I am thankful that we had safe travels,  I am grateful for prodding of the Holy Spirit.  I am thankful for my friends and family that are available to listen to my tears and to help advise me.  I am thankful for doctors who listen.  I'm hosting thanksgiving tomorrow and my house needs works.  Kids have eye appointments today that I scheduled weeks ago.  Life does not stop.  I could be bitter or I could be better.  I will rejoice.  ( I might cry some too)

Thursday, November 10, 2022

When life gives you lemons....

 sometimes you just get something sour.  You may or may not know Lillian spent 7 days in the hospital in late September.  She came home and developed Cdiff in her bowels which took another whole level of treatment.   She then had a few appointments with her GI doctor and Pulmonary doctor.  Those seemed to go fine.  GI has decided to continue treatment for another 6 months and then he will see her and plan another scope.  

So, Saturday morning, she woke up and started having the very same symptoms she displayed on her last admission.  We treated her at home for 24 hours and contacted the GI team.  I took her to the ER and she was taken back almost immediately.  In general, testing indicated infection and she was admitted.  We were discharged Wednesday.  Right this moment, we're not sure if she had a viral infection, a blood infection, or this was a Crohn's flare up.  They kept saying that the remicade is great for Crohn's, but really bad for the immune system.  (and she already has a physical immune disorder).  

This is not the picture I had in mind when we got on this Crohn's journey last year.  Last admission was definitely worse than this one.  She was sicker for several more days before she was improving.  I just kept thinking and saying, I can't believe we're here again.  She was extremely dehydrated after 24 hours, her potassium levels were very low and her inflammation markers were very high.  

The chaplain visited us on Monday morning, and it was wonderful to have someone, in the flesh,  to pray for us in our time of need.  She quietly listened to me and that was the only time I cried while we were there.  Immediately my spirit was quieted, and I came to the realization that, if this is how it is, then this is how it is.  I am only human, but what a joy to know the God of all.  My thoughts are rarely "why me" or "why her".  As I've studied the bible more and more it's clear to me that God is the God of all things, and He loves everyone of us, and rain falls on the just and the unjust.  


I have determined to make my mantra, this is the day that the Lord has made, I will rejoice and be glad in it.  You know why?  Because not one of us is promised tomorrow.  So, I will rejoice and be glad.  It's hard and it's mentally and physically exhausting walking this road, but I WILL rejoice in it.  As I sat in the hospital, each time a negative thought would attempt to come into my mind, I would silence it and declare a blessing or declare something I was grateful for in the situation.  The night they hung the antibiotic she reacted to, it was 10pm.  It was going to run 3 hours and I was so, so tired and I started asking the Lord, how am I going to stay awake for this long.  I laid there thinking and praying and all I could come up with was perfect love casts out fear.  I can trust the Lord to keep her safe.  I dosed off after an hour and woke when the med finished so I could silence the pump. (she hates the beeps of the pumps and monitors....high anxiety) We do have a choice where we let our minds go.  

We came home and I was so thankful but coming home brought its challenges which led me to crying in my lunch of popcorn and I really didn't even know why.  A friend purchased dinner for us from Cracker Barrell and I told her I was just crying and didn't know why, and she said "He's worthy of it all" so go ahead and cry.  I was reminded of scripture in Psalms of how the Lord can and wants to hear the raw and painful things and we can give him those along with our gratitude.  She hugged me with those words.  

This morning, in my time with the Lord, this verse spoke to me, yet again, " When the storms of life come, the wicked are whirled away, but the godly have a lasting foundation" Proverbs 10:25

Then I traveled over to Psalm 94 where these verses jumped out to me, "unless the Lord had helped me, I would soon have settled in the silence of the grave.  I cried out, " I am slipping!" but your unfailing love, O Lord, supported me.  When doubts filled my mind, your comfort gave me renewed hope and cheer. (17-19) (22) But the Lord is my fortress; my God is the mighty rock where I hide.

These are just a few of the ones I wanted to share.  I hope what I'm getting across is, I can do NONE of this life in my own strength.  There seems to be struggle after struggle after struggle. There is also blessing after blessing after blessing.  I will rejoice and be glad.  

Thursday, October 13, 2022

Endocrinologist visit

 Today Lillian saw her new Endocrinologist.  I really liked him, very nice doctor.  He spoke to Lillian, which is always a bonus to me.  So, all good news to report.  Her DEXA scan is actually in normal range for her.  He did xrays to check for any spinal compression fractures and there were none.  He recommended another DEXA scan in a year to see how the depo may or may not be affecting her.  We don't need to get with him again unless she starts having weird, unexplained fractures.  He said she's high risk simply because she has chronic illnesses.  It is so refreshing and rare to have such a positive appointment.  Changed my whole day.  

Her pediatrician contacted me directly yesterday to apologize for the missed lab test.  I'm supposed to text him again if she doesn't seem to be responding to the med they put her on.  

In two weeks, we follow up with her GI and pulmonary doctors.  


I was struggling today.  I can't quite put my finger on why other than the general frustration I feel when she's failed by the professionals we are supposed to depend on and the fact that no matter what I cannot change it or even vent my frustration about it.  Maybe it will help with some other child, I hope, who won't fall through the cracks.  Sometimes, I feel there is a rage buried deep inside, with nowhere to go.  Noone wants their child to suffer needlessly and that creates a helplessness inside that is heart breaking.  And now, there are tears stinging my eyes and a lump in my throat.  

Today was a good day.  This is the day that the Lord has made.  I will rejoice and be glad in it.

Monday, October 10, 2022

One week home.

 We are home now for a week.  She is weak, but getting stronger.  She could be stronger if she wasn't plagued by cdiff.  I took her to the dr last wednesday, fearing she had prolapsed her rectum.  She is just sitting on the toilet bearing down for all she's worth for pure water to come out.  I suspected she had cdiff, which a bacterial illness that can get in the bowels once you are on antibiotics.  We turned in a stool sample and the dr said it was not her rectum, but the largest hemorroid he's ever seen on a child and it might require surgery.  She is on a steroid cream for that, and so far, I've seen little to no improvement.  We're also rinsing her with a peri bottle, which just do you know, you can't buy in a store anywhere around these parts.  So, we did some substitutions which were not altogether pleasant for me, but I'll spare you the details.  

I did not hear from the dr the rest of the week, so I assumed she was negative.  However, I have believed due to the symptoms she is having that she probably did.  Well, I called today.  She does have cdiff.  The have had the results since the 6th and noone has bothered to call or anything and our dr happens to be out of the office all week this week.  I have spent the bulk of this afternoon in contact with the office, with her GI dr and I've been notified, finally, that something should be called in before the pharmacy closes, but at this point, I just don't know.  

I am frustrated.  I am sad.  She is/has been miserable and there is nothing in my power but prayer to help her.  I keep telling myself, there is nothing new under the sun.  

I attended church Sunday for the first time in two weeks. It was good to be back.  

I feel emotionally/mentally exhausted.  

On a better note, after Matt had a discussion with his HR rep, they made accommodations for us to get Lillian's prescriptions at our local pharmacy.  When I went to get her med that costs us 60.00, I was shocked to be told we owed nothing.  Cain't HE do it???  (that's a little phrase my daughter picked up from her college roommate) God is good.  " My heart and my flesh may fail, but God is the strength of my heart and my portion forever."  Psalm 73:26 

Friends, know this: when you make a declaration, the evil one is going to strike with a vengeance.  Also know this: GOD WILL PREVAIL!  

The Lord will fight for you, you need only be still.  Exodus 14:14

Monday, September 12, 2022

It is overwhelming.

 But don't just listen to God's word. You must do what it says. Otherwise, you are only fooling yourselves. For if you listen to the word and don't obey, it is like glancing at your face in the mirror. You see yourself, walk away, and forget what you look like. But if you look carefully into the perfect law that sets you free, and if you do what it says and don't forget what you heard, then God will bless you for doing it. " James 1:22-25

This is part of the scriptures I studied Thursday morning. I felt led, right away to share it on facebook , so I did.

Later that day I tried to reorder one of Lillian's meds only to find it was denied being filled. After several calls, I found out that our insurance will no longer allow us to utilize retail pharmacies. We MUST use their mail order pharmacy. They also, after several calls, informed us that they would not bill her secondary insurance. I lost it. Another thing was going to be added to my list. By evening I made my peace, knowing that I could go through the whole reimbursement process, I didn't have a choice. The next day after long phone calls, I found out  medicaid won't allow us to submit for reimbursement. After I exhausted all resources and shed a few tears. Peace kind of washed in. We would put it on a credit card and have to deal with it. That's going to be roughly and additional 200.00 out of our pocket. I try really, really hard to not complain about money. The reality is that we have struggled in this season. Unforeseen circumstances, such as medical bills and more medical bills...this is the first week in years I hadn't enough money to pay for groceries. As I made my bed, wondering how this was going to work...I decided to put an application in a local grocery store. I went onto the website twice to apply and the link was broken each time. I gave up. This is just how it's going to be. We can and will scrape by. We will. As I made my bed Friday, I said in my brain, how amazing would it be if  1000.00 dollars came in the mail. Then I giggled. Reality check crazy lady.

Saturday morning came and went and as we sat down to lunch a knock came to the door. A group from the 1010 project stopped by to see if we needed any work done. (a local church organizes groups of 10 and each person brings 10.00 and they go around town in prayer going where God leads them. ) She handed me some money, and in my mind I thought, this is awesome I can get more groceries. They prayed with us and left and as I made it in to the other side of my house, I flipped the money over to find a 100.00 bill, one after the other....adding up to 1200.00. I was undone. Overwhelmed. Noone knew this information except us and God.

I could tell a million stories like this one. Oh how HE loves us. Oh how HE loves you. Reread that scripture....just completely ovewhelming.

I shared this testimony at church on Sunday, hoping the message was clear that this wasn't about money, but a God who is in every detail. By the end of service we were donated an additional 1000.00 dollars. Then a sweet lady, who I don't know, came over and gave me what I presume was her only 7.00 in her purse and told me it wasn't much, but it would buy an ice cream.

This is a hard, hard season, but it just pushes me closer and closer to the One who knows it all. Draw near to him. He will draw near to you. Be blessed today.

Tuesday, September 6, 2022

Updates

 We saw the pediatric gynecologist today.  She also had an ultrasound prior to the visit, in which I went to the complete opposite end of the complex and office and had to drive to the other side and then we were late....I digress, she was pleased with the ultrasound and said  her organs looked really good.  (We don't hear that too often) She would like to divert to the orthopedic and endocrinologist in regard to how they feel about continuing depo shots.  At this point, she will get another depo shot at the end of the month and we will see the new docs in the coming weeks.  There were a lot of I don't know the answer to those questions because Lillian is not a "typical child"  in size or in all her specific medical issues.  Bottom line, no IUD for the time.  

I'll interrupt here to tell you that this is possibly the first time in almost 16 years that I forgot to grab her feeding supplies and didn't remember that I forgot until we parked in KY. There's some MOTY status, right there folks.  I like to stay on top, you know.  Back to our regularly scheduled update....


We got to her blood draw appointment and the tech asked me if they gave me a kit.  I'm like, a kit?  No, no kit.  My brain said here we go.  Apparently, the Dr Gut put in a order for stool samples and I needed a kit to collect and bring them back within 24 hours.  After some conversation, we decided to try to get one while we were there and she was like "oh no I don't collect it"....poor new girl...LOL They stuck her 3 times before they got the draw and then she was able to give me a large thick liquid stool which was so delightful to dispense into tiny containers with a tongue depressor.

  Don't hate me for my glamorous life, y'all.  

All in all, a good appointment today.  I felt relieved.  I dreaded this visit, and it turned out mostly positive.  I *hope* this blood work gives us some definitive answers.  Her next infusion is the 28th and we see the hematologist as well.  Thank you so much for your prayers and support.  They are needed and they are felt.