I’m pretty sure I got a glimpse last night of the sleep torture techniques they used in Guantanamo Bay. Just as I felt my brain shutting down into the delightful state of unconsciousness I would be yanked back up into the confusion of how there could be possibly yet one more issue to attend to. Vitals are at 8pm, 12am and 4am. The IV pump must be flushed and Allistaire’s double-lumen Hickman catheter checked every two hours. She get’s antinausea medicine every four hours and a round of antibiotics once in the night – both through her IV, however, once these are done going through the IV pump the IV will alarm to inform the nurse that it is finished. If not attended to in a few minutes the volume goes up on the alarm which essentially feels like someone’s yelling in your face. At home one diaper can last 12 hours – not so in the world of IV fluids constantly being pumped through your body and nurses who check it somewhere from every 2 to 4 hours. And then of course, there is the little lady herself. Let’s just say the miss-cranky-pants of a few days ago has disappeared and Allistaire has regained her giddiness. From about 2:30 – 4:15 last night Allistaire was up, playing with the label on her arm bracelet she is required to wear. She tears it off then gets upset that it’s off. I put if back on, she takes it back off. She was having a hard time falling to sleep and because she’s been eating so little I thought she might be hungry so I offer her the sippy cup of milk which she seems to be enjoying. I go back to sleep. Drifting away and then what? Allistaire is running the sippy cup back and forth across the metal slats of the crib like she’s a prison inmate. I go to her side and inform her as sternly as I can that it’s time for nigh-nigh. She giggles and wants to play – who can resist? I finally decide she’s just going to have to cry a little bit but nurses are sweet and well-trained and come running to see what’s wrong. I know, I’m torturing you just telling you all these details. Needless to say, we’re both tired but we’re working on better communicating our needs and streamlining what needs to get done during the night. We definitely appreciate your prayers on this subject!
As I mentioned, Allistaire’s little, silly, happy self has returned. She is still more tired than before and has significantly diminished her race track laps around the unit. Never-the-less, she is happy to play silly, coy games with all the nurses, doctors, social workers, etc. she encounters. It really is joy upon joy to have her cheerful spirit returning. Thankfully she has continued to be fever free (afebrile) since Monday and her blood cultures still have not grown anything. Our latest concern is a fair amount of stinky poopers which could indicate a GI-tract bug she may have like Roto virus. If they decide it necessary to test her stool and it comes back positive, she will be in isolation until she is completely free of sickness. This could be a week or more. Please pray that this doesn’t happen! Isolation means she cannot leave her room and Sten and I cannot access our refrigerator food or the microwave on our own; the nurses would have to do all of this for us. In addition, we would not be able to have any little people under 10 visit – this would be awful as our sweet nephew, Haaken, who is 5 1/2 is literally on his way as we speak driving with Sten’s brother, Peder, and our sister-in-law, Jess, from Montana to visit us.
Allistaire continues struggling to eat. She is eating so little it is astonishing to me. The doctors say this is totally common and to be expected with her counts so low. We are supposed to keep track of what she eats so that the dietician can asses her nutritional needs and calorie intake, but good grief when you eat 5 cheerios, 6 wee tubes of macaroni and a chip – what can it amount to?
And so, on to the sad news. The expected news. Allistaire’s hair started to fall out today. It’s on her clothes, her pillow, her hands (which means it gets stuck in her mouth because of sucking her thumb) and on her food. She refused to eat more than a few bites of her cheese this morning. I kept trying to get her to eat it. When I finally relented and picked it up to throw away, I discovered it was covered in hair. Hairy cheese? Yeah, I’m with Allistaire – not too enticing. I have to say it’s pretty sad. Here is an outward sign that chemo really does kill stuff. One of our sweet doctors encouraged me to just go ahead and cut it, to make it easier. After Allistaire’s bath I took the scissors and cut off two locks. Then Sten held her as I cut off most of the length. Now we know what it would look like if we had a boy. She really is such a cutey and tonight when I was putting her finally to sleep, I had to smile when I realized she looked like a blonde version of Sinead O’Connor which really is one of the most beautiful shorn women I can think of.
Your words and pictures are great! Please keep them comng and we will keep praying for all of you to have hope, strength and loving support ! ( and a good night’s rest!)
Love you all!
Roger & Tera
Glad you got some rest lst night. Allistaire looks cute with her hair cut. thanks for the pictures! love you jai.
After reading all of that, Steve’s response is “Sten, you have a beard.” Men. LOL. Your short haired sweetie is adorable and we are glad she is smiling again. We will be heaping on the prayers that it is not noro-virus. Love to you.
Hair is totally over-rated. The eyes say it all and what I see is beyond beautiful!!! (even if I was only speaking of physical beauty) But her sweet, sweet little face, all of it-her twinkling eyes, the way she holds her mouth and lifts her eyebrows-all of that conveys the beauty of her spirit! As you said, joy upon joy she’s still her happy little giddy Allistaire that we love beyond words! Thank you, God!
And thank you again, dear daughter, for taking the time to encourage all of us by your words and the pictures-what a gift it is when we can’t be there everyday!
Many, many people at our church are praying-we’re receiving lots of cards-so encouraging! We’re praying for stamina and strength for you and Sten!
So glad to hear she hasn’t had a temp and that she’s cheery again. It does a mama’s heart so good to see our babies acting better. Hope you can get some better sleep but glad your awakened to her playing and not crying:). She is such a little cutie… Shorter hair and all!
Jai, we love to read your blog here at Bridge Disability Ministries. I especially like that you are taking the fear and moments of woe and transforming them into something beautiful with your writing skill. You are doing what God does, reponding to the bad with the creative act. For you, it is telling the truth,in love, and daily faith. Thank you for this gift! Of course, you have our prayers.
Patty – thank you so much for writing such encouraging words. I have to tell you, your statement that God responds to the bad with the creative act – wow, I feel there must be great depths there to delve into – riches to mine. Thank you – I look forward to pondering that. Thank you too for your continued prayers on our behalf! Oh, I also was thinking today about Nouwen’s book “Adam” – I think God had me read that at just the right time – something more to ponder as I daily care for Allistaire’s flesh. It might need a reread. Thanks for suggesting it! I hope you and your family had a wonderful Christmas!
I am glad that you got some laughs today. It is always a good feeling when sick kids get some happeness back. My mom has lost all her hair that has been hard for her but she is getting us to it. My friend is making a hat for Allistaire. She lives is NC and makes hats for the cancer kids there so I asked her to make one for Allistaire. If she is anything like my Alison that also 15m she might not wear it but the hats are so cute. Plus all the money goes to cancer research in kids. I will let you know when I get it so I can get a good address to send it too. Also I saw that kid bounze in Issaquah on Jan 16th was having a bounce all day from 9am til 6pm and they are raising money for Children’s Hosptial. We are planning on going. I will always keep praying for your family. Michelle Brunner
You know I was just thinking maybe when the hats come I could vist. If the kids are healthy maybe we could all come. Conner is 5 yrs and Alison is 15m, The kids could play. We will see how things are going that day. Talk to soon
Michelle – thanks for helping me to make the connection with you and Nick and Marta. It amazes me how the Lord so quickly and significantly can unite people who have never met. Thank you so much for your continued prayers and for the sweet thought of the hat – we’ll look forward to it. We’ll see if it stays on – is that something we could pray about? Just kidding. Anyway, yes, let’s see if you could come for a visit some time. It would be nice to finally meet in person. Maybe you could bring a picture of your mom too.
It was a joy to hear that Emily and Dave were able to come visit you last night. I am so thankful you have her in your life to love, encourage, and pray for you. 🙂
We continue to pray multiple times a day for you, Sten, Allistaire and precious Solveig. I am thankful for your encouraging words and love for Jesus. It truly is inspiring.
those eyes!!!! I like the shorn look for little A…. she can fully carry it with those irresistible eyes!!!!
And, not funny, but hilarious blow by blow of getting through the night.
Thanks for reliving it so we can ‘enjoy’ that with you :).
jai, thanks so much for sharing all of this. we think of you all of the time, so glad you got to be with peder and jess and haaken. xoxoxoxoxoxox, ellie, ben, and sylvie
Ellie -Thanks for the love! Wish we could see your little lady! Miss you and Ben too – we are taunted we don’t live closer and get to hang out with you!