Dr. Lungs checks in

 Lillian saw her pulmonologist today.  She is not going to have her scopes next week due to the recent sicknesses she has endured.  They want at least six weeks of wellness from the time of steroids before anesthesia is administered, and since she will be fully anesthetized, it's a no go.  We are able to stop every four hour treatments as of Friday and she is back to her twice a days.  She is finally behaving like herself, playing in her room and no longer a fixture on the couch. (which I can tell you does my my heart a world of good)

We attended church Sunday for the first time in weeks and we rejoined the main congregation.  As I went forward to praise at the altar, the tears slowly fell.  Next thing I knew, I was on my face on the floor wailing with body racking cries.  There were many hands on me.  I cried to the Lord for help because weariness was heavy on me.  I use the word tired a lot.  Turns out, it's not really being tired...it's weariness.  The physical and mental exhaustion of caregiving mixed with the love and concern I have for my child is heavy.  The good news is, He is truly the one carrying me. My feet would not hit the floor if not for His strength.  Grateful does not seem to be nearly a strong enough word when I say I'm grateful.  Grateful for the Lord, grateful for my family, my church, the prayers you all give.  I released a weight that I'm not able to do in my home because it is too heavy for my girl to bear.  A dear friend, prayed over me before and during that time and she said to me, I wish there was something I could do.  I told her that was my problem, I wish there was something I could do.  I *feel* helpless, but I'm not hopeless.  

Do you need hope?  I can tell you where to find it. just ask.  He's waiting.

"And now Lord, for what do I wait? My hope is in You." Ps 39:7

It has been a week

 Many of you know Lillian started running a fever last Saturday (1 week ago). By Sunday evening, I realized she was needing every four hour breathing treatments.  When she gets a fever, she vomits.  Always has.  That creates the inability to feed her.  ANYTHING.  So, as long as we could keep her fever down, we could feed her.  It has been touch and go all week.  Four hour treatments around the clock is exhausting. Additionally, she looked terrible.  By Wednesday I took her to the pedicatrician for a work in appointment.  (i bet the office loves us ha!) They tested her for 2 flus, covid, and possible UTI.  All of that was negative.  I asked him to add a steroid to help with the asthma, and he did.  She's been on an anitbiotic since Saturday to try to treat her impacted sinus.  We divided that into two doses instead of one.  Thursday we had elders come and annoint her and pray over her.  By Thursday I was falling apart.  Just sheer exhaustion.  Friday, i contacted her Pulmonologist and talked with them and they said we are doing every thing we can do.  I did increase her fluids after feeds to help battle dehydration.  As I was up with her through the night, she was drenched in sweat each time.  Today, she has acted more normal then we've seen her in a week.  She literally hadn't left the couch.  This has been a trying week.  I am so very grateful she appears to be on the other side.  I'm so thankful for our praying warriors and God who pours out His strength for her and me. I'm so grateful for Tina and her bringing us dinner and crispy cokes. I'm thankful for daughters who grocery shop for me and take and pick up Ezekiel.  I'm thankful for each text and offer of help from my tribe! So, today I'm food prepping in between  treatments and cleaning, and feedings.I've also reached that place of exhaustion where I have to write down all the treatment times because my brain is fried. I'm still tired and I still have days of round the clock treatments to do, but praise God for His healing.  Thank you all for praying.