18

 An evening spent with family and dearest friends.  Pizza, Cupcakes, presents...JOY!!!! Lunch at Chili's and shopping until you drop with Grandma.

Thank you Lord.

Pulmonary, Infusion, Endocrinology, and warts, OH MY

 It has been a busy couple of weeks. Lillian followed up with two specialist and also had her infusion.  That's a lot of trips to KY, y'all.   Pulmonary added zyrtec to her meds as she seems to be struggling since we've had some outside time.  It helped immediately, but unfortunately brought on a rough, long nose bleed on Saturday, so trying to find a balance there.  It's a vicious cycle.  Drainage equals irritation, irritation equals inflammation, inflammation triggers asthma.  Sounds like she has to stay on pulmicort nebs twice a day now to manage her asthma.  Discouraging as it indicates worsening lung function.  

Endo ordered spinal xrays due to worsened DEXA scan results.  No fractures from what I read but I haven't been officially notified by the team.  She wants to see her again in 6 months.  Could not pin her down on her thoughts on giving depo closer together.  

Gynecology won't write us a script for depo to be given every two months, she wants me to notify her every time the dose is due to see how she's doing.  (super easy and convenient, right?)

Lillian has been dealing with warts on her toes for some time so we are going to need to add another specialist to the list because despite all of the efforts I've tried, they have failed.  

Immunology wants to check her again in 6 months as well, as she didn't respond very well to the prevnar vaccine.  Her IgG is still low as well.

We no longer have a respite care provider.  So there's that.  

Our little Sunny is very close to getting to come home.  Please keep Sunny, Rebecca, Aaron, and Sloan in your prayers.

Immunologist

 Today Lillian saw a new dr for Immunology.  They are going to run some blood work at her next infusion, to check and see if she might have the CVID.  It will likely turn into this coming blood draw on the 18th, and addtional blood draw 8 weeks from then to coinside with her Remicade infusions.  If, they determine she has this, they can start her on IVIG infusions to help build her antibodies.  It would be tricky with the remicade, but she says it can be done.

I'm tired.  TIRED.  It is such a long day driving down and back, home for 30 minutes or so and back to pick up.  And today, I almost got sideswiped by a box truck and a big pick up truck cut me off and almost hit me.  

There are times when I have done her bathroom duties so many times in the day and night, I just grow weary.  I'm grateful, but weary.  Today, for unknown reasons, I was struck with a grief wave that she will never fall in love or get married or have her own family.  It sounds stupid to even write, but it's true.  

In other news, our most recent granddaughter, now 5lbs from 1lb 5 oz, is still hospitalized, but miraculously has no serious complications.  Feedings are the issue, currently.  Our daughter is frustrated and ready to have her whole family home.  I know the feeling.  It's hard for me to watch others suffer.  It is especially hard to watch my children suffer. 

Our dinner calls for me attention.  

Hab. 1:7 The Lord is good, a strong refuge when trouble comes. He is close to those who trust in Him.  

Rheumatologist Update and other updates

 We had our follow up appointment with the Rheumatologist today.  He had no significant findings that require treatment.  The thought on her joints is that it came on with the Crohn's.  It shouldn't get worse, and it is not likely to be reversed.  (possibly with OT and paraffin therapy with stretching but maybe not) 

He does suspect she might have an additional underlying immune disorder called CVID, common variable immunodeficiency.  It lines up with a lot of her history and there are treatments available, but that will have to wait until September to see them for that.  

I had to go re read my last blog post because so much has happened in just a few short weeks.  She had her appointment with the Urologist and they have ordered a urodynamic study to check the pressures in her bladder.  I'll spare you the details of the procedure, but I will tell you it won't be a pleasant event.  

My second oldest daughter gave birth to our 7th grandchild, a little girl...emergently.  She weighed in at a whopping 1pound 5 oz.  She was life flighted to Riley and on day 3 of birth and remains there in stable condition.  She is a miracle.  Her name is Sunny.  Pray for them all.  Pray for all of us.  This is hard.  

To add to the "excitement" of our lives, our water heater went out Friday night and that is not a cost we were expecting to incur.  

I'm struggling in this season.  I can see an obvious decline in Lillian's health and stamina.  It can be discouraging.  She has been struggling with some type of cold that has required around the clock treatments and she's just starting to come out of that.  

I spent days and many messages and phone calls to get Lillian a new travel nebulizer (which apparently isn't covered by insurance) Her liquid stomach med they want her on isn't covered by insurance.  The professionals who are supposed to help with these things basically throw it back to me when they don't want to make more than one phone call.  I could go on and on and that is just TWO of the issues I've dealt with recently on her behalf. 

 We did have a very dear friend donate the rest of the money for her attorney in regards to her guardianship.  I'm so grateful. I keep telling myself things are going to improve.  If we can just get through some of the next obstacles. 

Transparency: I am not ok.  My heart is heavy.  

When I am weak, He is strong.

Scopes, Rheumatologist, Infusions...

 Lillian finally had her long overdue scopes and it revealed that her Crohn's is in remission.  She did have a few minor issues but overall he was not concerned. Well, mildly concerned, but had no answer to the issue.  She will continue with every 8 week infusions.

She saw a new doctor, a  rheumatologist, and it was a very long appointment.  He had no answers per se, just lots of questions. He did mention some other diseases he wanted to rule out.  He did a very thorough overview of her history.  He ordered some blood tests and about 20 xray films.  It only took them four sticks and 2 additional hours to get all that done. We see him in June again.  I should, by now, be used to going into appointments and coming out a bit overwhelmed.  It's just more.  More to deal with.  More to process, just MORE.  We already have a new a new dr (immunology) added to the list since some of her blood work came back. More.  

We have an upcoming appointment with her urologist.  She'll be delighted that we never got the testing the Nephrologist wanted because it is nearly impossible to collect her first urines of the morning three days in a row and run it to the hospital within the hour. 

Also, there is something weird growing on her big toe and we'll be seeing the regular doctor for that tomorrow.  #winningatmothering (yeah, it's been there a while and we thought it was athlete's foot..but it's not)

She had infusions today which went fine after 3 IV sticks.

She's currently holding a grudge against me because I bought her a dress at goodwill and I bought me a dress at goodwill, she thinks (today) mine is hers.  It's been a great evening. *insert sarcasm*

Prior to all this, I was connected with a woman at the ARC of Jackson County.  It's an advocacy agency for disabled individuals.  Lots of good changes will hopefully be coming our way, but everything is a process and I'm the one doing the leg work to keep things moving.  For the first time in 17+ years, I can finally see that our lives might look a little different. I feel like I have someone in my corner helping me navigate all that is coming.  The agency has connected us to an attorney for the legal guardianship and t we were able to apply to the agency to help cover half the cost.  That, alone, is HUGE.  If that had been the only thing that came of that day, it would have been worth it, but so much more on the horizon.  God willing. Most of all, I hope to have a personal friendship with this woman as our children our similar and walks are too. Meeting someone like us is like catching a life preserver in the ocean.  (to me.  don't get me wrong, we have a lot of very faithful, giving, praying, loving, there for us, friends.)

In other news, one of my daughters is experiencing some very serious complications with her pregnancy.  If you could lift her and our little baby girl to the Lord, we would be so grateful.

Let me tell you, friends...our Lord is faithful.  Transparency...I'm struggling.  I'm just feeling weighed down.  I know the Lord faithfully holds me up.  Life is hard.  This is hard.  God knows, He sees, He hears, He answers.  Keep looking up.  

We're a go...maybe??

 Lillian's scopes have been scheduled for 5/21 pending a blood test result and the approval of pulmonary and cardiology.  That's Dr Lungs and Dr. Heart.  We had a work in appointment with Dr Blood Monday morning at 900am.  He was a new to us provider in the group.  I liked him, he did not rush and took his time with us which I didn't expect.  He also questioned my about her some of her physical issues such as her brachial plexus palsy and her crippled fingers. He decided she should see a rheumatologist.  Yet another specialist. I kind of laugh as I contemplate it.  

By the way, she'll be 18 this year.  We will need to get a lawyer and become her legal guardians.  I'm not sure how that will work considering we don't have money to pay an attorney.  Pray about that would you? It is something we HAVE to do. There isn't an option.  Also, turning 18 makes her a legal adult.  I'm learning that her specialists may all have to transition to adult medicine.  I'm just telling you, all of this is overwhelming.  It is A LOT.  I'm writing about it so I can unravel some of it from my brain.  

By the way, 18!!!  She'll be 18.  I'm grateful.  God is good.  

Dr GYN and Dr GI visits

 Lillian had a visit this week with her GYN dr.  She has missed mutliple appointments for various reasons on their end as well as her being sick.  They have decided to give her depo shots every 3 months to see if that helps reset her body and then space the shots back apart.  If that does not help her they want us to consider an IUD.   Secondarily, she ordered another bone density scan because Depo can affect the bones.  

We saw Dr GI today and he felt she looked good and blood work has been good.  As we left, they gave us a letter giving us the date of her scope.  It is May 21.  Please pray she is able to get this scope done.  It is well overdue.  Again, due to recent illnesses her pulmonologist has not cleared her for general anesthesia.  

We left and scheduled her follow up appt and went to lunch where she had a total breakdown with huge tears as she questioned me about the procedure.  She also doesn't want to stay in the hospital which is a possibility depending on her other specialists.  This is not typical for her.  I told her not to cry because it wouldn't hurt and then I said, go ahead and cry, it's ok to be afraid.  Heart.  Wrenching.  

He asked us before we left if we had any fun summer plans.  How do I answer that question other than no.? No, we don't.  

In case you're new here, I have been Lillian's primary caregiver her entire life.  I could not return to work after her birth.  By the grace of God and his provision over the years through friends and family we have stayed afloat.  And that is still true today.  

That's the update this week.  Please pray for her to stay healthy.

Cancelled appointment, Infusion, Is anyone among you in trouble...the cough and snot express

 I know the title is a bit of a ramble but stay with me. HA!  Let's start with the cough and snot express.  For over a week and a half Lillian has battled a nasty sinus infection, which inflames her asthma, which requires more treatments.  Today, she is slightly improved, and by that I mean I have not needed to give her round the clock mucinex.  We tried to take a walk today and about 10 minutes in her coughing was so bad we had to stop at my daughter's house and have another daughter take us home.(after baby snuggles, of course).  In light of her feeling so crappy, I canceled her one year appointment with the hematologist.  It is already rescheduled, so that lies ahead.  She had her infusion, where they put us in isolation because of her copious drainage. ( the team still wanted her to have her infusion).  I wish every infusion ran so smoothly.  One IV stick.  Everything flows so well, but man it makes for a LOOONNNGGG day.  It doesn't help that sleep has been pretty sketchy with the CASE.  (figure that out? See title) I'm tired.  Can you tell? A little punchy, I might be. 

So this morning, I called in her inhaled steroid for refills, as we ran out over the weekend and they don't deliver on the weekend anyway since we now have to get her Pulmicort from UofL pharmacy.   The very nice lady calls me back and tells me it's being rejected by insurance.  I was literally sitting at the table spending time in my Bible and study and I was reading this scripture when she called me with this information, "Is anyone among you in trouble? Let them pray." Now that is only a portion of James 4:13-15.  Not to get too lengthy, but I struggle with growing short with people when things are constantly a problem.  I just kept laughter in my voice (we've gotten this med from the same pharmacy for the past two months no issue) and in the back of my mind kept thinking the Lord is going to work this out.  I prayed because I was in trouble.  She needs that medicine.  The girl put me on hold for over 20 minutes and as I attempting to place Lillian on her vest and breathing treatment, my cheek hung up the phone.  Now, no one called back most of the day.  I check my email and this girl has emailed me to say everything is fine and the meds will be here Wednesday.  

I recently, tearfully shared with a friend that I feel like I'm having a harder time handling all the things.  I don't know if it's aging, discouragement, lack of sleep, financial hardship, medical hardship or just all of it.  All I do know, this life is temporary. My struggles hopefully help to bring forth the kingdom principles. Because we know that all things work together for good to those who love the Lord and are called according to his purpose.  Romans 8:28 He knows tomorrow.  I don't.  He's the provider, I am not.  He is the healer.  I'll keep my eyes on him and try not to look at all that other stuff.  

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.

Life in the fast/slow lane

 The week following Lillian's hospitalization, we had two return trips to KY.  One for follow up with a new ENT.  (that there is a very long story, but not necessarily needing repeated as it still brings me to tears) After seeing the ENT it was determined she would start a 20 day course of antibiotics a week after the current antibiotics finish, (we are waiting until the Sunday to start) after that, she will have a repeat facial CT scan to determine if the treatment affected her completely blocked ethmoid sinus.  If not, we will discuss two surgical intervention options.

The next day we returned to KY for her infusion.  We did not have back up (my mom) so it was me and her the whole day in down there.  Ezekiel had his basketball game Thursday night and then we were off to Columbus on Friday to follow up with her pediatrician post hospitalization.  Her bloodwork had basically returned to normal, and he thought she looked great.  

Life just doesn't stop when things turn upside down.  We just have to keep rolling with it.  Finding time to recoup and process for me took a bit longer than usual due to the busyness of our week home.  

She has multiple appointments coming for March, including her GI scopes which will be an overnight hospital stay.  Please keep those prayers coming for days ahead.  We could not survive this without the Lord and your prayers.  

I trust in God, my savior, the one who will never fail.

 There is a song by elevation worship and these are a few of the words.  This is the song that came on the radio as I drove on to the interstate bringing Lillian home from a five day  hospital stay.  I had to reign in the tears as I contemplated the prior week.  Our son had gotten braces and the day after he came down with strep throat. He was super sick and I took him to urgent care Saturday.  He got better after two doses and life seemed to move right along.  On Monday evening, Lillian came down with a high fever and vomiting.  We couldn't get anything into her and the night just got worse.  I had been keeping in contact with her pediatrician and ended up taking her to see him Tuesday afternoon, all while she continued wretching every 15 to 20 minutes.  He gave her a shot of rocephin and then I had to go to walgreeen and pick up IV phenergan and take it back to the office so they could give her a shot of that.  The night did not get better.  She couldn't sit still, or lay down and the wretching would not stop.  Her face was very swollen.  I rubbed her down with all kinds of oils over those two days...she was up again all night.  At 530 wednesday morning, she vomited blood.  I hit the shower, called my hubby home and packed as quickly as I could manage and headed south to the children's hospital.  Her wretching continued total on into Thursday.  After some testing, it was determined she would need to stay.  By afternoon, about eight hours of being in the ER, she was admitted to a room where she continued to wretch.  The medical team came in, examined her and after quite a bit of conversation, they ordered  a CT of her face and neck and ultrasounds of her abdomen, more blood to test her pancreas and liver.  They suspected possible appendicitis or pancreatitis or abscess in her sinus.  What came back was a complete shock to the team.  She was diagnosed with epiglottitis.  A rare and dangerous condition that escalates quickly. It is brought on by viral and/or bacterial infection.  Given the inflammation marker tests they had done, it was determined she had a bacterial infection.  She continued to struggle the entire night.  They ran two heavy hitting IV antibiotics and by the next day started IV steroids.  We started seeing marked improvement after steroids were on board.  This turned out to be one of the scariest hospital stays of her life.  

Blessings : thank God he gave me the urgency to pursue help right away.

                  we had an excellent ER nurse who was able to start two IVs after one stick each

                  She had excellent nurses on the floor.

                  Her pediatrician giving her that shot likely saved her life

                  She was supposed to be on a room hold, but we got in a room after roughly 7 hours in the ER

                  I had a full tank of gas and we had safe travel

                  All of my kids pitched in with food and deliveries to the hospital

                  My friend sent money for food

                  I was gifted a visa card at the hospital

                   we forgot to get parking validated, but they waved the $40 fee and let me out

                   our sweet friend sent her a basket with her favorite snacks

                  my tribe has surrounded us with meals for the next few days and I couldn't be more grateful

                   Most of all, I know there was an army of prayer warriors on our behalf.

You can trust the Lord.  He never fails.  He's good even when our circumstances are not.  Even when things don't turn out the way we plan.  We make our plans but the Lord determines our steps. 

 Thank God.