Sleep Deprivation...It's a real thing
Tuesday, May 26th will go down as one of the most memorable nights in the history of our hospital visits. I want to be careful to not sound pesimistic, ungrateful, or foolish; I know God was in complete control of each minute of my night. I truly do trust in His sovereingty and many times throughout the night took comfort in that fact. However having said that, I wanted to record the events that unfolded so that we can look back some day and laugh at the night I barely survived...
The Schedule
12:00pm — Jake and I decide that it might be best for me to head home for the night to spend some time with Graham, and get a good nights sleep. I committed, knowing a boy sometimes just needs his mommy. :)
6:30pm — I pack up, give Linden a kiss, and head out with tears in my eyes. It's so hard to have to choose one child over the other. I know Linden won't remember, and most likely Graham won't either but it makes my heart ache always being away from one of them.
6:45pm — I call Jake and ask him if he locked the deadbolt because I knew I didn't have a key to it. He said yes, but that he left me a key and told me where it was.
7:15pm — I pick up Graham from our friends house and head home. Upon arriving home, I grab the key and realize that he had left me the garage key and not the deadbolt. Oh my word!! At this point, I haven't showered all day, haven't eaten since 11:00am, and Graham and I are both sleep deprived. I call Jake and we figure out a plan — our friends were visiting Linden and he was just going to send the key back with them. Great, now I just have two hours to kill. So Graham and I jumped in the car and decided to go get some dinner. Well, while in the car he fell asleep. I know how it is to wake the kid after he's sleeping and it would not be worth my efforts.
7:45pm — I decide to start heading back to Peoria to get the key, giving Graham a chance to sleep and avoiding driving around Bloomington for 2 hours.
8:00pm — I talk to Jake and he says Linden isn't a happy camper. So I decide to stay the night at the hospital with her (she's very much a mama's girl), and Jake then would go home with Graham.
8:30pm — The swap. At this point, I was completely taxed and ready for bed.
8:35pm — Walk into Linden's room where she is sound asleep, until she hears me walk by her bed and wakes up with a sweet smile on her face. I won't lie...I was very happy to see her smile, give her a kiss, and lay her back down. Linden had different plans....
9:00pm — Linden is still awake and her nurse lets me know that they will do her anticibiotics shortly.
9:15pm — I give her the oral antibiotics, while her nurse sets up the IV antibiotics.
9:30pm — The nurse is still trying to get the antibiotics to flow.
9:45pm — She realizes the problem could be the position of her foot and so we reposition Linden, in the midst of her screaming and crying.
10:00pm — The nurse pulls the tape and bandages off of her IV to get a closer look.
10:05pm — The nurse leaves the room to get new bandages and Linden pulls the IV out of her foot.
10:10pm — The nurse realizes the IV was bent so it wasn't going to work anyway. She lets me know that they will put another IV in and to just give her a minute to set up.
10:20pm — We head down to the procedure room to poke her for an IV.
10:25pm — They can't get the IV in so the nurse calls for another nurse to help.
10:35pm — The second nurse finally gets it and Linden has completely had it.
10:45pm — After what seems like two rolls of tape, the IV is secured and we are headed back to our room.
11:00pm — She starts the IV antibiotics and they still won't flow — yeah.right.
11:10pm — She finally gets thee antibiotics working and leaves the room.
11:10pm — Linden decides it's party time and wants to play.
11:30pm — Linden is finally asleep.
11:40pm — IV machine beeps and antibiotics are finished, waking the sleeping babe.
11:45pm — Nurse returns after 5 minutes of a beeping machine, flushes Linden's IV and starts fluids.
12:00am — Linden is back to sleep.
12:30am — I fall asleep (still unshowered and starving).
2:30am — Our wakeup call from the nurse to draw blood and check vitals. I give Linden one more bottle before she is NPO for her sono.
2:30 - 3:00am — Linden cries
3:00am — Back to sleep she goes.
4:00am — The nurse comes in to empty the garbage and wakes us both up....true story.
4:15am — Linden is back asleep.
5:00am — Linden randomly wakes up and I put her back to sleep.
5:30am — Nurse comes in to give antibiotics.
6:00am — Linden is back asleep.
6:30am — Nurse comes in to tell us transportation is here to take Linden to her sono. While telling me this, Linden wakes up.
6:45 - 8:00am — Sonogram. This is literally a traumatic experience for both of us, which includes me literally having to hold her legs and arms down while the sonogram techs does her thing. She cries, I cry...it's a disaster. And we got the same lady from our first experience (<a href=\"http://www.loveforlinden.com/lindens-story/\">see Linden's story).
8:15am — Back to our room to find out we have our favorite nurse for the day...yay! And I feed Linden a banana, and her smile appears again instantly.
8:20am — Jake arrives and I breath a sigh of relief, knowing I have some backup (and can maybe eat and shower).
It was seriously one thing after the next, I can't tell you how many times I prayed during the night. In.sane. However, Linden survived...I survived...and we had a good day today. :)
Current Status
So Linden's current condition is...
She has been diagnosed with acute cholangitis, which is an infection of the common bile duct. In Linden's case, the common bile duct is her surgery site. This is her second time having cholangitis and she will probably get it again, as it's very common with the kasai. Her doctor is treating it with two antibiotics, one oral and one IV.
Tomorrow, she will get a picc line and we will go home with IV antibiotics. Her doctor is saying that we should get to go home tomorrow, but if not then it will be on Friday.
Linden is in happy spirits and has spent most of her day riding around the halls in her red wagon, smiling and waving at everyone. So thankful for her typically sweet demeanor.
Prayer Requests
1- SLEEP! Please pray that Linden gets a good nights sleep tonight. Although she doesn't act like it, she is very very tired.
2- NO FOOD! Linden isn't able to eat 8 hours prior to the picc line procedure. Please pray that she handles that well and is able to rest and relax with an empty stomach.
3- THE PROCEDURE! The picc line procedure requires sedation, which is always a little unsettling. Please pray that she would respond well to the anesthesia and the procedure would be seamless.
4- HOME! Please pray that we will be able to go home tomorrow. We are craving sleep in our own beds and to be a family again.
So many friends have sent me scripture to meditate on during the last few days. I would like to share two of my favorites.
Psalm 91:1-2---He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, \"My refuge and my fortress, my God, in whom I trust.\"
Matthew 11:28---Come to me, all who labor and are heavy laden, and I will give you rest.
And lastly, thank you all for the encouragment and compassion you've shown our family, even some whom have never met us or Linden. The love that we feel from you all is so humbling. Our hearts are grateful.