EN’s Beat no. 7

EN’s Beat no. 7

There and Back Again

Hello family,

Last you heard I was at home, happy and content. There was food and rest. It took a little getting used to. I couldn’t keep up with the extended visitors. Resting, I was Keeping up all right. We thought, perhaps we will stay for awhile. I had a wonderful few days at home. God filled my days with plenty of family and Friends. We are so very happy that, for those few days I felt okay. My breathing, for the most part was flawless.


I was at home for a grand total of Four Days.

Where do you think I am now?  I am Back! Back in UCLA, back in, the PICU. Back to the land of the sick. I was admitted a week ago, Monday night.

Monday was terrible, all day I was hacking-coughing. I was also throwing up pretty much everything I ate. My stomach would not hold food. When we were leaving the doctors told us to call them if I threw up more than twice a day.

I threw up  after every single meal, how many times did I throw up?

Anyway, we called the doctors. I was still feeling sick at this time.


I remember sitting in my new adjustable bed, (Greg from HB Mattress and Furniture gave us a good deal!) and mom came over,  “Doctor Alejos said you need to be admitted.”  After a couple minutes my answer was another full bucket. What a night!  While my mom massaged my head, I napped. In my sleeping mind I thought I was still at home. When I woke we were at the ER here at UCLA and I barfed again. In the Lobby a nice man admitted us and walked us to the PICU.

BACK AGAIN: Monday night we were here, again.  Although I am back, God is still taking care of me and I had visitors by Tuesday morning!


Tuesday night I could not breathe, again. I had a lump or something else obstructing my breathing. We prayed for it to go away. But it stayed there, unmoving for pretty much half the night. I was also having PVCs, which are Pre Ventricular Contractions, some what like a little flutter of the heart, here and there. Suffice it to say we were up pretty late on Tuesday just trying different things to help me sleep. Eventually we put on an oxygen tube that sprayed lots of air into my nose and they also changed my meds a little.

God took care of me, making me feel better, calming me. He Let me rest leading me beside quiet waters and green pastures. The happiness came from places where God leads me.

Everyone is dying, I am afraid I am right.


P.S. Someone named Kristen Wiig came to visit me…maybe some of you know her. She counted off day 15 on the list!


Momma Note: Thank you for enjoying my son’s blog and loving us through this long journey.

It was good to be at home, even though we were nervous  without all the medical help. We all got to sleep in our own beds, with the whole family under one roof!  Micah could hang out easily on Ian’s bed. Joey came to watch movies and play cards two days in a row. Randy and I could sleep in our big bed just a few feet away. When we got back to the hospital Ian said, “I wish I could go back home.”

Despite having those unmet longings, he is being a great patient and learning to make his needs known in helpful ways with the doctors, nurses and even Mom. On Tuesday’s episode he worked hard to explain his difficulty breathing and received immediate and excellent care. We both can’t imagine being a baby who can’t explain, or a child without their parent near by to advocate for them. Please keep those kiddos in your prayers. Ian is really helping our doctors know what it’s like for other patients who can’t express themselves.

FYI, he has also become very sensitive to smells. So when you come visit, please help yourself to a piece of gum, (or deodorant if you think it might be necessary)!!

Thank you for the help to rest. With all of your support and prayers, I had 4 nights at home after this difficult episode for Ian.  It was refreshing and cleansing to be outside, take Kaiya on a date, get a massage, vent, walk, buy too many groceries to carry home on my walk, get rescued by the Kawatas so I could get those groceries back home, cook low sodium pizza with Auntie Viv, regroup, get lots of prayer, and more prayer to come back and do it all over again.

Thank you for your kindness and generosity each and every day.  I can’t keep up with all the thank you notes, but we are very very thankful! I never knew it was possible to “Pray without ceasing” but I get it now. You’re doing it for us and I believe it is like worship to God’s ears to feel so entrusted with Ian’s heart. He is trustworthy.

Psalm 34:4-5 “I prayed to the Lord, and he answered me. He freed me from all my fears. Those who look to him for help will be radiant with Joy; no shadow of shame will darken their faces.” 

In July ,when the Lord asked what I needed from Him, I asked for two things, “I need to know You are near, and I need Joy for the journey.”

  1. Last night when I asked Ian what gave him Joy that day he said, “My picc bandage change went well.” OMGoodness! Thank You, Lord for answering our prayers! He freed Ian of his fears and gave him Joy! He is doing this for us a little bit every day.
  2. Kaiya asked, “When Ian get’s his new heart is he going to say, ‘Who are you?’ ‘Who are you?’ ‘Who are you?'”
  3. When some boys asked Micah what was on Ian’s arm he said, “Oh, that’ his pick up line.”
  4. Baaa haa haa ha ha! I love my kids to pieces! They are my Sunshine!

Looking for Radiant Joy and freedom from fears and shame,



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