Dental visit recap

Thursday, Lillian had her quarterly dental appointment.  It went terribly.  She was screaming, crying, fighting me, tell me "no tah" which means no talk.  After what seemed like FOREVER..much longer than it should have been, her hygienest looked at me and said, "this is the hardest time I've ever had cleaning her teeth." She said, "you know when you told me you had to fight her to brush her teeth?" I said, yes.  She said " I now understand what you meant".  I think, perhaps, she thought I was exaggerating.  I was not.After it was over, I said I needed medication and she said well, you don't have to fight her and I was said oh yes I do. I feel very shaken, physically...internally.  It's hard to put into words.

  Anyway, we left and decided we would grab some fast food before finishing the errands I had to do in town.  As we go in, Lillian has pulled off her mask .  She and her older sister are fussing about it and I haven't even had a chance to get it back on her and the lady behind the plexy glass is shoving a mask at me urgently, loudly telling me she needs a mask (which can be seen in Lillian's hand).  Without even thinking I barked at the woman that she had a mask, she has special needs and then proceeded to replace the mask, take a breath and place our order.  When we sat down, I felt regret.  I didn't mean to sound snippy, but I'm sure I did.  Not only was I still in recovery mode from the dentist, I was probably a little hangry, and if you read my last post, you know I'm not in a great mental state. So, lady in LJS, if you happen to read this, I'm sorry.  It wasn't you,  it was me and I'm sorry.  I hope my extra kindness after our initial meeting showed you I'm not an evil hearted person. Ironically, she served us our drinks, us unmasked at a table, no plexy glass, closer than when we arrived at the counter. Think about that for a minute...

She will see her pulmonologist this week for a routine visit and she's due for her cardiologist as well.  I expect nothing new.  Dr. Pulmo will probably be my last post before Christmas.  

When it's hard to be grateful for "normal"

 December has been a hard month for me.  Emotionally, I've been kind of a mess.  Perhaps it is indeed "COVID fatigue" or maybe not.  Maybe it's just the circumstances of life feel heavier.  I'm not sure.  Tears are readily available  these days.  As the mother of five daughters, I've experience puberty many times with girls and all the changes that come along.  When it comes to Lillian, I've heard a variety of stories from doctors and nurses stating puberty comes sooner for kids with special needs or she's so small I don't expect puberty until much later.  Lillian is walking thru this new season.  I am sad with a capital S.  It is so dreadfully unfair that she has to walk through this and of ALL things why does this have to be her "normal"  for her hard fought life?  The irony of the whole thing is not lost on me.  The prayers, the days, the nights. I've longed for something "normal".  A lump is gathered in my throat and tears are leaking out.  I never liked that my other girls had to venture these waters either, but you know, it's a part of being a woman and eventually, God willing, it allows them to experience motherhood.  The dagger slides deeper....or that's how it feels at least.   The body grows and changes and her mind doesn't.  It's not fair.  It hurts.  Choices are not mine.  It's hard.  That's all.  

So, if you're reading this and are walking through a hard time, I'll leave you with this and I'll keep looking up.

Isaiah 43:2

When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you.

HAPPY 14TH BIRTHDAY

 I stand in awe at the grace and mercy of God.  14 years we've been given.  The years have not passed by quickly.  The days have been long and sometimes weary.  BUT!!!  Look, look what the Lord has done.  

I could look at 14 years and see all the pain, all the hardship, all the tears.

Instead, I see beauty, I see perseverance, I see strength, I see hope, I see goodness, I see compassion,  I see unwavering, unfailing, never ending LOVE.  

Happy Birthday!

One Month Later-Mom update

 Exactly one month ago I got sick, which most of you know.  I never really ever felt well.  On August 10th I went back to surgery for laser lithotripsy and new stent placement.  Less than a week later, still not feeling great all week, I started to feel really badly.  Simultaneously, my temperature spiked and I consulted the doctor who directed me to return to the ER.  My vital signs were crazy high, heart rate, bp, temperature...I felt absolutely terrible. Believe it or not , I was severely septic again with kidney infection and UTI.  After a CT and some discussion about transferring me out to a different hospital, it was determined I would not need surgery again and I'd be readmitted to the ICU. They were having extreme difficulty trying to get sticks on me for anything.  I hate ABG"s....they draw those from the arterial line in your wrist, and she failed getting the first one.   Believe it or not, this time was actually worse than the last.  I ran a 103+ degree fever for well over 24 hours with body shaking chills. The lactic acid in my body kept me physically tensed up.  Medication did not even touch the fever.  I was moved into a "regular" room Monday evening with all the same things going on and I also got a catheter placed as soon as I was in ICU. After my fever seemed to have broke, I became so nauseated I could not think about, look at, or even  consider eating and the dreaded headache had also settled in.  I felt ravaged.  By the early morning hours of Wednesday, nausea turned into vomiting and I was starting to lose it mentally.   They finally gave me a "cocktail" of drugs that pretty much just knocked me out and when I woke I did feel somewhat better.  By evening, they wanted to see that I could eat and they let me decide if I wanted to go home, which I did.  Matt was home one day and had to return to work Friday.  Thursday, I became so bloated, it appeared as if I was nine months pregnant about to give birth.  Saturday night is the first night I could sleep in my bed, and my ankles had turned into elephant feet with sever swelling.  Nausea has been bad each morning, but seems to pass pretty quickly.  

I felt pretty good yesterday until I had to go in for the stent removal.  About an hour after that I had severe pain and lots of cramping for the rest of the afternoon/night.  Could not sleep on my right side.  Today, I'm exhausted.  Mentally and physically worn.  Thank you for your encouraging words and prayers and cards from those who have sent them.   They urologist extended my antibiotics an additional week in hopes of this not happening again, he said the risk was high because the bacteria could be attached to the stent and stone fragments.  The general consensus is that they never cured me of the bacteria in the first place and when they did the laser surgery they just stirred it all up again.   I will need to have a renal ultrasound and KUB xray next month to check the health of my kidney and see the urologist again.  

Dentist Appointment

 Lillian had a routine dental appointment today, our first since quarrantine.  It wasn't her best appointment, but it wasn't her worse either.  Her tooth is still broken, but it doesn't appear to be changed since her last check up, which I thought was good.  They put a special coating on it to help protect it each time.  I just wish she wasn't so terrified every time.  I wish it didn't make me feel so stressed out that she's so terrified.  At least I didn't feel like I needed medicated after it was over.  Her hygenist is so amazing.

On the Mom front, my recovery had been pretty terrible. I had the "normal" pain associated with having a stint and stone I guess, but I also started to suffer from debilitating 12+ hour headaches.  I'd have maybe a four to five hour break and right back to a pounding headache.  My adult children convinced me to go in to my PCP and wouldn't allow me to drive, which is probably wise.  They, of course, couldn't really zone in on any one issue and they COVID tested me...which was negarive.  They did advise to call the urologist to ask if they could change my antibiotic.  It was another full 24 hours before they called back and they discontinued my antibiotic.  I woke up the next morning, mostly headache free.  I had surgery again this past Monday to remove the stone, however, it stubbornly would not be moved with their basket technique, so they did laser lithotripsy and put in a new stint which gives me incredible pain off an on.  It comes out next week in the office.  I want it out, but I'm dreading having that done in the office...if you get me drift.  

I will officially resume all of my at home meds tomorrow and yesterday as much as I wanted to drop a blood pressure medication, my blood pressure was off the chart yesterday, so...I shall continue.   That's the news form home at the moment.  Still staying home...Ezekiel is in remote learning at least for a semester and day one was ok, but today found us both in tears...it's stressful.  Thank you for your continued prayers.  

When Mom gets sick

This past Saturday, shortly after declaring a break from my beloved facebook, ( in our current life, I've always felt FB helped me feel connected to people since I was mostly distanced from them, but with the current climate and rampant negativity, I just couldn't take anymore. ) I started feeling very uncomfortable.  While we've maintained being sheltered in place due to Lillian's health concerns,I have had to make a very few minimal trips into the public, and that previous Thursday I had done a major grocery shopping trip  for the first time in about 6 weeks.  So when evening rolled around and my temp started to rise, you know, of course, what I started to think.  I would then remind myself that I asked the Lord to protect my household and children from the virus and I declared it would not enter this home.  Nor the homes of my children.  I stood on that trust in the Lord, so each time the thought came, I would give it to God.  I also ached with fever and a bit of localized back pain for over 24 hours and by 6 am Monday morning I could find no relief, and I was struggling with breathing and yawning.  I drove myself to the ER and told them I needed to be seen for back pain.  ( set the scene for you, I'm in mismatched pajamas, flip flops and looking about as rough as ever and they asked me if I was there to visit someone...maybe i didn't look as bad as I thought after all???)   I'm just going to pause here and say, I'm writing this to remind me of God's faithfulness.  I'm also a detail person and I want the details to be right and people to know, from me, what happened so there is no confusion  So, after what seemed eternity to me, a CT, three shots of zofran and three shots of dilodid, which felt akin to sugar water, I was diagnosed with a high kidney stone.  There was a lot of urgency and an undertone of seriousness and I was only getting deeper into the pain the journey.  When the urologist came, he told me I had a very precarious situation as I had a lot of infection and I would be going to surgery as soon as they had a time, stint first...then come back later for stone therapy.  His words, repeatedly.  Right after he left, the nurse came in and whisked me to surgery just as I had finished texting Matt and my Mom that I was going to be going to surgery.  It was right at 10am.  I sat in the wheel chair and the tears started. I was nervous.  I didn't tell my kids I loved them before I left, or my husband and here I was headed to surgery, ALONE.   I had told the dr I ate four bites of cereal to take my meds that morning and I knew that would push things back (shoulda kept that to myself LOL) In preop I was told 12 would be my time because I had eaten.  I am not a person that lies, but was wondering to myself why in the world did I open my big trap....but my medical self knows better.  Stupid, honest, medical self. *eye rolls*   My pastor called at some point and I have little recollection of that phone call except he asked me why i was eating stones (bless his humorous heart)  and he prayed for me  Pain intensifying and me thinking how can I focus elsewhere??  So I opened my bible gateway app and turned to Psalm 23 and turned on the speaking function.  I was about 6 chapters in when I switched to instrumental praise music and the comforting hymns of my youth became a period of focus, now, at 1130 I started to shake and my teeth were chattering like they were going to fall right out of my head, I called for pain medicine.  The nurses came and and bless them, one gal stood beside me and just tried or reassure me and the tremors grew so intense and I couldn't relax nor could I take a deep breath with out excruciating, knife like pain adding to the whole ordeal.  All I could think was come on 12 o'clock.  I said, 12, right?  they said I think it's been pushed to one since you ate this morning...well, I thought I was just going to lose it all right then.  The one nurse left the room and finally came back with versed and fentanyl. I sat on the edge of the bed until the administered the versed and then laid down for the fentanyl.   I remember my teeth clenching again and then I remember going to OR, I wanted someone to pray, but didn't ask.   I asked them to take care of me because I had babies to go home to.  Next, I was in OR and things were not going too well and what was supposed to be an overnight stay (pre surgery), now i wsa hearing, she's tachy, her bp is very low, her temp is 104, get some ABGs.  I remember saying I hate ABGs, I heard septic, I heard ICU...you're stable but you need ICU...  there are other details, but none that need to be shared here, I'll spare you...lol.  And here I am now . Three days in the hospital and it's Thursday and I'm home now with a more procedures ahead.  After my full course of antibiotics, I'll have some sort of stone removal to go through, it is a 7mm stone, which as I understand is very large and will not pass on it's own.  At some point, after the "stone therapy", there will be another procedure to remove the stint.  I have brief periods of dizziness and nausea, and a walk around my house is enough to wear me out completely.  I have periods of intense pain associated with using the bathroom which I hope is just the effect of moving around more.  I had a catheter inserted for the length of my stay, so I've not been going on my own very long if you pick up what I'm laying down, you know? 

Honestly, I have persevered through 13 plus years of a difficult medical situation, but I, myself, enduring this for only about 6 days makes me realize how much stronger Lillian is than me. I have an even greater heart for those who are chronically ill.  This is the worst pain I've ever experienced in my life. I'm thankful for the Lord continues to give strength and am grateful for the faithful prayers of friends and family.  I know I would not be where I am without Him and the intercession on my behalf .  Do you seek to know the Lord?  He's waiting for you.  If you are far way from him, he's waiting .  IF you want to know him and the peace he ONLY can bring.  Reach out, let me share him with you.  

When the days are different.

On Monday, our day started out as usual.  Feeding, vest, treatments, school time.  By the afternoon Lillian was doubled over in abdominal pain.   Crying, hanging on to me, begging me to stop the pain.  I pulled every trick out of my book to help and then I prayed.  This went on for several hours.  We skipped her "lunch" feeding and she sat in painful cries and tears.  By evening, I think she had thrown up or dry heaved several times, I think out of sheer pain.  We talked and decided to give her half of her next feeding.  She never had any huge results of anything by way of a bowel movement or gas and by night she took her whole feeding and slept.  Her sleep seemed a bit more restless, but beyond all that she seems to be fine now.  It was such a stressful few hours.  I think we were all highly concerned. She seems to have had no other issues since.  By night, once I had time to quiet, I became frustrated.  Fear tried to rise up.  It is so so so so hard to care for someone who can't really communicate.  Let me rephrase, it's hard to care for my child who can't communicate.  Thankfully, i guess, I've learned to ride the wave.  I've learned patience in waiting.  While all I really want is the "easy button", one just does not exist.  

In my crazy, I started to think about all the kids who are home for the time making their parents crazy with all the talking and no doubt fussing and all the things and I was jealous but for a moment.  

Multiple issues have arisen in my house over the last couple weeks, not to mention grieving the death of my aunt.  I've felt battered and sad.  I've focused on this verse in particular, "So we don't look at the troubles we can see now, rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever." 2 Cor 4:18 (nlt)   

I can't control the tiny body that my child struggles in, but I know the One who does. I can only do the best I can to protect her and take care of her and that's where I'll rest, for someday, she will be free from what ails her (as will those who have given their heart to Christ).  I can't say I'm totally always at peace with a life that may not include her.  My aunt loved Jesus, she gave her heart to Him.  She was still afraid of dying.  I get it.  My heart understands it.  I will focus on what lasts forever.  

Ramblings

So, we have a friend who had a baby very prematurely.  He's done so well and he finally got to come home after a lengthy stay in the NICU.  Their latest updates are letting folks know he can't have visitors and they are posting tons of pictures.  For some reason, his birth and life in the NICU have affected me so deeply.  I would read their updates which were good, but still my heart ached for them.  I would find myself in puddles of tears as I connected with the situation they were now living in with their very fragile newborn. Everyone's story is different, however, if you've been a NICU situation you can connect.  I was beyond thrilled he was thriving and I'm beyond thrilled that he is home.
 I look at his pictures and I see little Lillian, the trach, the fragility.  I remember my fears and at times can't even fathom that 13 years have passed and I'm in puddles.

Lillian still has Christmas and birthday money she's been holding on to.  This girl loves her baby dolls and there can never be enough clothes.  We have found that preemie baby clothes often fit her dolls so last night big sisters Bethany and Madeline took her to Walmart and she bought some clearance baby clothes for her dolls, and then they hit the Mcdonald's drive thru for a coke.  She had SO much fun.  (course crazy town mom asked second sister to go for extra eyes and attention ) For a moment, Lillian lived a "normal".  I mean, I know most 13 year old girls are not out buying baby doll clothes. but for me, she was out there shopping with her sisters and having a girl's night even if it only lasted less than an hour. 

I'm also experiencing a "normal" sibling rivalry.  All the big sisters have adored Lillian.  Never competed with her...just pure love, adoration, and protection.  Having had a a younger sibling now, and now that he's older it's quite funny to see him react with a little jealousy and give her some sass.  He told her this morning "she is nevva going to go with me when I go somewheya with  my sistas"   Little bits of normal have slid in and oddly comforted my aching heart. 

The last week has been stressful and filled with some PTSD.  Seriously, tough on me this week.  I know God is in control and I'm praying and seeking his will for what steps to take next.  I *think* we are going to resume speech therapy for swallowing and go from there. At the point, for me, I'm not willing to risk any type of surgery.  There are no guarantees and even a 50/50 chance is not good enough for me and honestly, they can't give me a guarantee of anything.

Today, I'm thankful for a pictures of a healthy, healing,  growing baby boy, for the snipits of somewhat "normal" events, and the love that comes from a phone call checking in on me.

Drs, drs, and more drs.

Yesterday, Lillian saw her pediatrician for her 13 year well child appointment.  I really had no concerns, yet I left and cried most of the way home.  Basically, we discussed lots of STUFF.  Feedings, puberty, rashes...STUFF. ** shout out for a 6% BMI**    Basically, what got my tears a rolling was a "let's talk to ENT and see if there's anything that can be done in her mouth to help her swallow".  Maybe nothing can be done, but maybe something can.  Well, the history of her life started rolling in and all those mouth surgeries and the difficulties of them flooded me.  Even though I knew this was just a "let's see", the past overwhelmed me. Add to that the gentle yet glaring reminders of her developmental delay in ALL ways, and the way she's choosing to cope when she's hurt or sick....TOO MUCH for my Mom heart and mind.  I am trying to make this brief here...give you the highlight reel (terrible attempt at humor much?) and is that high light, highlight, or highlite??? I digress...By about 4:15 I was getting a call for an appointment for today for an ENT and she already had her appointment scheduled for her pulmonologist down there this afternoon. They want me to come at 830 am, I eventually tell them I cannot do that. so they put us in for an appointment at 1130 nearby Dr. Lungs.  I was totally dreading the whole entire thing.  So, after arriving early and waiting nearly an hour and a half past our appointed time, we were taken to a room.  Let me set the mood, it's almost one oclock, I've had nothing to eat, so I'm hangry, and I'm about to be late for her next appointment in an unfamiliar area, AND I already have stress mounting up.  THEN, they come in asking what her difficulty breathing issue is...UM HELLO, that is not why we're here.  They ask again, and then I express to them that I'm not sure why the insisted we be there today when they clearly don't have time for us.  I really have no idea where the miscommunication came from, certainly not me and I'm not even sure the ENT had a clue what I was talking about.  Her "assessment" was that her mouth looked like it should for all the work that's been done in there and we could ask her plastic surgeon to see if he thought a scar retraction surgery would be beneficial...  and then somehow she rolled into her needing a sleep study and a speech eval from the ST that works with them OH and do we want a hearing test and gosh those tubes maybe should come out that have been in her ears for 12 YEARS.....and all mind you in a rush rush rush bc she knew we had another appointment right around the corner. She (DR ENT) did perform a scope while we were there, which I wasn't anticipating and couldn't prepare Lillian for....basically, I'm supposed to get back with her when and with what I want to do to proceed...and NONE of these things could turn out to help and could actually make things worse, the scar retraction surgery for speech and swallowig.  

So, head over to DR Lungs, of course I have to write down her new tests and we've now had  a head CT and a scope up the nose.  ( which by the way the scope showed everything wide open, whatever that means)  I finally start to cry, but reined it in.  (I had ugly breakdown at church with some friends before I left last night and they all prayed with me)  He didn't feel a sleep study would be beneficial or necessary....and I'm over here like how did this whole day turn into a breathing issue?  I guess the only real outcome of this day is that we are going back to her gentamycin year round because she's had a rough winter with having sinus problems which then lead to asthma problems.  She's also suffering from some perioral dermatitis and DR PEDS ordered a cream for that

Her eye is STILL bruised.  Her glasses were reordered and came quickly.

I'm tired.  It's been an emotional and exhausting two days.  Thanks for reading this book if you're still hanging in there.