A Very Scary Day

Today was a very scary day.  Today, I saw the color leave Lucy's face as it turned blue during an intense seizure. Today has been taxing on all levels, and I am forever grateful for the messages, emails, texts, phone calls, and prayers you have sent on our behalf.

Lucy has been dealing with a bad ear infection, as some of you know.  Ear infections are a big deal for Lucy and she's been hospitalized several times for this very thing.  They are hard to treat in her, and because of NKH, she doesn't respond well to antibiotics.  Lucy's been on an antibiotic since Monday.  She's now received three rocefin shots (an additional antibiotic).  This would knock out most anything in a "typical" kiddo, however NKH can make the smallest thing become life-threatening, as we have seen in Lucy and in Ellie Kate.  In fact, last year at this time, Lucy Belle was hospitalized next door to her Big Sissy because of a nasty ear infection.

Last night Lu Lu was crying in pain from her little ears.  This morning she was a bit lethargic, so I gave her pediatrician a call.  Our very wise and kind doctor encouraged me to take Lucy in to be seen once again before the weekend and before the bad weather hit.  Our plan was to pick Henry up from school and take both kids to the clinic (Henry needed to be seen again for his asthma).

Nurse Mindy buckled Lucy into her seat and we anxiously waited for the car to warm up, as it was starting to sleet outside.  I looked back and saw that Lucy was having a seizure.  This one was different and she was stiff all over.  Mindy hopped out to check on her, and I hopped in the back to assess Lu Lu myself.  I realized that her eyes were rolled back into her head and she was completely stiff.  Mindy raced inside to get our pulse-oxymeter and I lifted up her shirt to see if she was breathing.  She wasn't.  I don't know why, but I put my mouth over her mouth and her nose, as if I were doing some sort of CPR.  I kept thinking, "It won't hurt her if I breathe into her mouth.  It can only help.  It won't hurt".  I was frozen and that's all I could do.

Mindy got back to the car, unable to find the misplaced pulse-ox, and immediately undid Lucy's car seat, picked her up and ran her inside the house.  I fumbled to find my phone and called 911.  By the time I got inside, still on the phone, Lucy still wasn't breathing and was getting more and more blue, eyes still rolled back.  I was scared.  I wasn't ready to see see my Baby Girl pass away.  I wasn't ready to see her on a ventilator.  But, I didn't have much time to think.  I tried to call Mike but instead had to text him.  How terrified he must have been.

Within just moments the firemen were there.  How reassuring these sweet men were!  Strong and strapping and calm - just what me, Mindy and now Henry needed!  They watched Lucy intently and Mindy told them about Ellie Kate.  They were so tender-hearted and even joked with Henry, asking him to get them some snacks.  Instead of being scared, I think Henry enjoyed seeing the firemen in his house.  He even gave Lucy a kiss when they had the oxygen mask on her, and by that time she had woken up out of her seizure.

We decided to have Lucy taken to OU Children's Hospital since we've never seen a seizure like this before.  Would it happen again?  Is there something bigger going on causing this?  It was sleeting as we rode in the ambulance, so the ride there was quite slow.  I knew a dear friend and fellow Hope Link momma was also in the ER with her daughter, and another Hope Link momma was there for an appointment.  Knowing that I had some friends right there meant the world to me.  And I did yell at Heather (Kelsey's mom), as we ran by her room upon arrival.  How good God is to do special things like that!

By the time we got to our room, Lucy was back to baseline and was her happy self.  We talked to the docs and agreed to be admitted.  Blood work and tests were done (although we don't yet have results), and Lucy was a trooper.  My Sweet Husband was there with a Dr. Pepper in hand for me as I arrived, as well as a big hug (Oh, how I love that man!).  Everyone took a big sigh of relief that Lucy was stable and her vitals were strong.

Mike and I then realized that we hadn't packed any of Lucy's meds or formula with us.  We talked to the doctor because we knew some of those things aren't always kept on hand at the hospital (especially the non-FDA approved drugs and formulary meds).  We wanted to make sure the plans would start being made to get those meds and that formula ready for Lucy.  But, that couldn't happen.  By that time it was a skeleton crew and non-necessary folks at the hospital had been sent home.  No one could get the formula and no one could make the meds we needed.  So, we came up with plan B.

Plan B meant that we could go home, and that is where we are tonight!  We will have 24-hour nursing care until Monday so that Lucy is constantly watched.  We of course can give her formula and meds.  She's received as many shots of antibiotics as possible.  If anything happens or changes, we will go back and be admitted upon arrival; but for now, we get to stay home!

I know I didn't have to go into detail on the stories from today, and I may have even bored some of you with the length of this post.  I just feel as though many of you are family who have followed us this entire journey.  Many of your hearts are knit with ours - especially this time of year, especially in light of Ellie Kate's passing, especially with the upcoming Month of Reckless Love.  I like sharing many details with you because of that, and it is also healing to my heart to have it all written down.

Please continue to pray for Lucy Belle.  She's had several of her strange and new seizures since we've been home this evening, although she hasn't once stopped breathing.  We trust our nurses and we know the Lord and His angels are watching over her.  Still, it's hard not to be too hyper-vigilant with our Baby, especially with . . . well, with everything going on right now.  We covet your prayers.

May you be richly blessed for praying for us and encouraging us, Dear Friends.  

The Crazy Day

What a day!  Last night was a bit scary.  Henry wasn't breathing well, despite his inhaler and the nebulizer.  It was so scary listening to him struggle to breathe.  It brought back too many memories, and I was on edge the entire night, watching his every breath.  By around 7am, we decided to take him to the ER.  His fever was so high and his breathing so rough.  They got us right in and got to work on Henry Mac.  

It looks like Henry just has bad allergy-induced asthma, as well as a virus and a bad case of the croup. He is such a trooper and took his steroid shot, his breathing treatments, etc.  We were so proud of Henry, so we let him choose one little gift in the hospital gift shop.  He was excited to get in and quickly started piling up girl toys and gifts.  He told me that he was picking out gifts for Ellie Kate.  I wasn't sure what to say or do, so I just watched silently as he carefully picked out special gifts.  Did he forget that Ellie was dead?  Was he confused because of his sickness?  But then he ran up to me and said, "well, these would be the perfect gifts for Ellie if she wasn't dead".  Oh, my heart!  Sweet boy LOVES his sister and I think being back at Children's made him think of her.  He's been drawing pictures of her all day.  

At the time that we were at the hospital with Henry, Stan was undergoing his heart surgery.  Thankfully, Stan's surgery went well too and he is actually at home tonight!  We are so grateful for your prayers for Henry and for Stan. I think Mike is completely worn out from being at two different hospitals and going to work today.  I'm still trying to lay low with the new blood pressure medicine and the virus it feels like I'm coming down with (I think I'm just coming down with Henry's sickness).  Fun times.  

It's always something, right?  I know it's like that for everyone.  Makes you long for Heaven doesn't it?!  Lord, let your return be soon!

Ryan