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.  

Influenza A day 6

 This is a different experience for me.  She is way sicker than her last hospital stay.  I guess  benefits to the hospital are there are nurses keeping track of medicines and machines tracking vitals and oxygen.  Never thought I'd miss the monitors, but in these last several days, I do.  Nights continue to be very bad.  Breathing treatments, mucinex, and vest treatments being given every four hours and tylenol as often as needed, along with all her routine meds plus tamiflu.  I'm hoping her last night sweat out was her final break in fever, but time will tell. She can barely speak due to her throat pain and wretching. To add to her unpleasant days, she started her period.  She was due to have her shot today.  The office called yesterday to reschedule and it worked out that a church friend (a very knowledgeable retired nurse) came over and gave her the shot, which Lillian handled the best so far.   She is still fairly miserable, tearful, and mad at me A LOT.  I guess that might be considered an improvement.  She is also taking a few minutes in the bathroom to write on the mirrors as that is where I'm charting meds and treatments.   Keep us in your prayers.  We appreciate them all so much. 

So, in seeking to be positive, We have been SO very blessed by our church family. Matt made it to work safely.  Ezekiel is doing better today. Lillian is not any worse. (i think) the power is on and there is sufficient food in the house. We are warm and safe in refuge of His wings.  None of this is a surprise to Him.  He is faithful.

 Merry Christmas.  

Influenza Day 4

 Nights are rough, days are rough. Asthma is in full swing, which for her means coughing until she can't breathe. Fevers are still raging.  I  gagged and dry heaved this morning simply because her harsh gagging started me gagging, ;which led to other unpleasantness that I'll spare you the details of.   I am throwing EVERYTHING at her.  Oils, meds, more oils, more meds, prayer, prayer, more prayer, pleading prayers, crying prayers.   She's begged me to take her to the hospital.   Crushing.  Guess what, being home is just as exhausting as being in the hospital, my couch is just as hard in places as the pleather beds...HA! I am grateful to be home, though.  My shower is far overdue, but I can't leave her long enough to do so, because of all the constant snot and wretching. ( I sleep some when Matt gets home) I'm keeping notes of med times on the bathroom mirror because in my fatigue, I can no longer keep track of times.  Food in the house is sparse and I mean sparse because I haven't been to the grocery store.  We do have bread and milk and peanut butter and some very gracious church family are bringing us meals this week at supper time.  I've set an alarm on Alexa so I can give each of her meds spread out so that I can then give her her first feed. At least 3 friends called yesterday and prayed with me. 

 Thank you for your continued prayers and support.  There's my timer, time to medicate.

Influenza A

 In the early morning hours of Sunday, Lillian spiked a high fever. She woke me in the bathroom gagging.  Gagging and vomiting have always been a tell of a fever for her.  Sunday, she was miserable.  Unable to swallow, wretching, and nonstop fever. This has continued all through the day and night and into today.  After contact with our pediatrician, I got her in to see him this morning.  She tested positive for Influenza A , negative for Covid and possibly strep throat.  The rapid test for strep was negative, but her throat looked very bad.  She is in the window for tamiflu, so the race was on to find somewhere who had it.  I will save you the details of how long it took to get it and the difficulty it involved, but we remained in Columbus for some time before we got the meds.  After I initially dropped off the scripts, I ran to a drive thru to grab lunch as it was approaching 1pm.  I pulled over into a parking lot and tears overtook me.  Fatigue + my miserable girl  = crying in a parking lot.  I parked the car and praying a turned up the radio.  I had turned on KLOVE even thought I'd been listening to an all Christmas station since Thanksgiving.  The song on was Gratitude by Brandon Lake.  One of my favorites.  Next, Raise a Halleluiah...another great one...song after song seemingly curated for me by my creator at that very moment.   My family and friends are moving mountains in prayer and dinner is being provided today and tomorrow.  

I started to speak the blessings . He is near, He knows it all and He is Worthy of it all.  Our Christmas might look a little different this year.  That's ok.  We will praise Him in the storm and be grateful.

Ortho and Hematology update

 Lillian had a busy day in KY today with doctors.  First, we saw the ortho guy.  They x-rayed her finger, he came in and (I could already see with my lay eyes, or so I thought) said, it's healed.  No more brace. WHOOP WHOOP!!  Praise the Lord!!!He said that joint would be stiff but just encourage her to use it normally.   We sat and waited for a restaurant to open and had lunch then headed downtown KY to see her hematologist, which was going to be at least another hour wait.  But, praise the Lord, she got the message we were already there and she saw us right away!!!  The best news, her elevated PTT isn't an issue due to the fact that her Factor XII blood test is off.  Factor 12 is a a genetic issue often inherited by the parents and there is no treatment or any concern there any longer. Now, her platelet function aggregation studies need to be repeated because it is not normal.  She says 80% of patients who have an abnormal study and the test is repeated, it comes back normal.  It was a great day full of good news and I am so grateful.  

She is delighted to be freed from her splint and so am I.  We will have another round of blood tests in the near future and see the hematologist again in March.  Thank you for your continued prayers.  

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.  

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)