Friday, February 23, 2024

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.  


Monday, February 5, 2024

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.  


Sunday, December 31, 2023

Caregiver fatigue

It's real.  It's hard.  It's consuming.  I'm tired.  Not tired like I haven't slept tired (but that's true too). The mental and physical stress of being a full time, rarely get a break caregiver is weighing me down.  I've said this before, but in case you don't remember...Lillian cannot bathe, bathroom care, or feed herself.  She can dress herself, but the choices are not always the best.  Most of my days are spent from one end of her mood to the other end.  One end being she's mad at me for taking care of her to no personal space love.  Aside from personal care giving, there is medications, treatments, doctor's appointments on end.  I.am.tired.   Of course, there is constant concern regarding illness and am I doing what's right and yada yada yada....never.ending.  

I am so grateful, we have managed thru December without hospitalization.  I have experienced joy and peace throughout the season while walking through tough days.  I am grateful but I'm tired.

I did not want to go to church today.  I received a text from a friend who is in her own caregiving battle.  My first thoughts are that she must be tired.  I told her how I felt and asked her how she felt.  We know the Lord is our strength.  Most of our days, though, are fighting uphill battles with those we love the most.  We got into church just as the praise songs had started.  We are sitting in the balcony to avoid the crowd.  I miss physical contact and greetings with my church family.  So I often holler from the balcony to blow kisses and air hug those that I miss.  

I wanted to take E to see a movie over Christmas break, but I have to think and look at showtimes and try to go when I hope the rest of the world won't be attending, in the end, I will let Matt take him and I'll be on duty with L for the duration.  I know you might be reading this and thinking, that's not such a big deal.  Having your family constantly divided it exhausting.  

Thank God for his neverending mercy and grace, because I need it.  I NEEEEED it.  

Friday, December 15, 2023

Over the hill and how about that CT?

 Lillian is doing better, still needing frequent treatments and still has a good cough, but definitely over the hump I believe.  We saw her plastic surgeon today for the results of the cat scan and her entire left frontal sinus is blocked all the way to her nasal septum. He does not believe it's a tumor.  He's referring her to ENT because she may need a surgical procedure to drain it...oh and she has to have another head CT to see, if by chance the steroids helped at all. Long day...long week...long couple of weeks.  

Wednesday, December 6, 2023

17...sick...and no scope next week

 So Lillian had her 17th birthday and it was so much fun.  She enjoyed herself so much!   A week later, she got sick. A respiratory infection, I'm sure. I had to go up on her treatments every four hours and prayed things would not get worse.  She had an appointment today with her pulmonologist that they added us on to so he could give clearance for the scope.  He did not clear her.  So the scope we have been waiting to do for well over a year to check her Crohn's disease is not put off until March. I'm fine with that, really...I don't want her under anesthesia sick and neither do the doctors.  

Now, to say everything was smooth sailing...it wasn't.  I had to leave here (have her fed and treatments done and have Ezekiel to school by 8) as soon as I dropped off Ezekiel to get to her 0930 appointment.  Guess what, she wasn't on the schedule.  I recently got a new phone and I couldn't log in to mychart to show the messages that clearly stated she had a 0930 appointment.  After quite some time, a young woman came out apologizing over and over that she put the date in the system wrong and we could go ahead and see the nurse practitioner...(in this case, I would have preferred her doctor but what. ever. ) Immediately, I was near tears, which is cray.zay.  Why should that make me dissolve into tears???  Lord help me be more gracious....ugh.  

They are putting her on a round of steroids and if there isn't significant improvement by Monday, I'm to call back. I'm also to increase her inhaled steroids for the forseeable future.  She's supposed to have an infusion next week and I'm thinking that's not going to happen if she's still in this condition.

I'm tired.  It's been a long busy weekend through today with my husband at work.  I'm so grateful she's not in the hospital.  I can't help feeling a bit discouraged.  She's never cleared up from this previous nasal issue either.  I'm rambling.  

That's the story for today.  Pray for her.

Friday, September 29, 2023

Lest you EVER think our life is boring...Gross out warning.

 For months, and I mean months, Lillian has been dealing with some very thick, green drainage from only one side of her nose.  Perhaps since June or even May.  It's super odd because usually when she gets drainage of any kind her asthma flares and sometimes, she even ends up with pneumonia.  So, this drainage is so thick it just sits there, and it seems to never end.  When she does happen to sneeze, it is unreal.  I'll spare you the details.  So, in August, her doctor put her on antibiotics.  Did not help.  I called a week and a half ago and got her in to see him.  He described that nostril looking like someone caulked her nose with snot.  Just the one side. He put her on another antibiotic and said we'd look in 10 days because he didn't want it to abscess.  (there's something my brain never considered) I took her back Thursday and there was no improvement.  Her doctor is going to be gone for 2 months.  He put her on the antibiotic course again and put in a referral for her plastic surgeon because she might require revision surgery for lesions because of all the surgeries she has had in her mouth.  He also has us doing aggressive nasal washes.  I barely kept it together all the way home.  I cannot even fathom her having another mouth surgery.  Those were terrible.  TERRIBLE.  Not prepared in any way, shape or form for that possibility.  

Today, this afternoon, I found a large abscess behind her ear.  At the bottom of her lobe. She needs prayer friends. I need prayer.  I'm not afraid, but I'm discouraged.  I know the Lord is already there.  

This is stressful.  

By the grace of God, she is tolerating the nasal washes like a champ.  I'm soaking the abscess in hopes it will recede.  

Friday, August 18, 2023

Out of sorts and edgy...and Dr GI appointment

 That's been my day.  That is how I've felt.  Can't really say why.  That is not my general disposition.  I'm tired and haven't slept well in months for several reasons which I won't go into, so why don't I just quit whining and get to the update.

We saw Lillian's GI dr today and dietician.  When the nurse took us in the room, she stated a med student would be seeing us first and then the Dr.  I was not thrilled.  I didn't want to go through her entire history with a new person.  And I almost said as much, but I bit back my words.  When the student walked in, I knew her immediately.  She had been on Lillian's team the last two times she was admitted.  She remembered Lillian when she saw her name on her list this morning.  It was nice to see her outside the hospital setting.  

So....she is going to be scheduled for another scope to see if she's in remission.  He still wants me to try to collect stool samples.  Good times never end here...HA! Now I will have to contact her pulmonologist and hematologist to see what they want to do medication wise prior to the procedure because she will be under general anesthesia.  Due to her history, she will also likely have to have a 24 hour stay just to be on the safe side. 

She gets her infusion this coming Wednesday and after the scope we will have a forward progress plan.  

In other news, I didn't blubber like a baby this time. I told him I was pretty stable today and he was like no it's ok, you can breakdown it's fine....LOL.  He probably has to pep talk himself when he comes to our room.