Hunter's today reads very similar to Hunter's yesterday so I want to take a minute to share our short-term goals for him. Hopefully, achieving these goals will allow Hunter to be discharged into outpatient care here in Seattle. It almost seems silly to be sharing these after Hunter's brief visit to the ICU for VOD this past week. However, we are looking forward with all the positivity we can muster.
1. Engraftment (2 consecutive days with an ANC greater than 500) - Check. Hunter's ANC this morning was 948.
2. No fevers or active infections - Check. Knock on wood.
3. Tolerating some food - Hunter hadn't eaten in days until this morning. It might not seem like much but he ate four grapes, a bite of banana and a bite of graham cracker, a virtual feast.
4. Tolerating oral medicines - This has been a slight (tongue in cheek) struggle. Generally, Hunter only has one oral medicine in the morning and one in the evening. He fights us tooth and nail every step of the way. We take away his pacifier and security blanket among other items to get him to eventually comply (I know, I know, we're mean). It appears we have a way to go since he will have eight to fifteen (ish) oral medicines when we're on the "outside."
5. No IV narcotics - We scaled back Hunter's IV pain drip yesterday, but did not today. At times, he cries and we aren't sure what ails him: fatigue, pain or a combination of the two. I think it will take us some time to get a handle on, or a feel for this without trepidation or second guessing ourselves.
Subscribe to:
Post Comments (Atom)
hey guys
ReplyDeletethanks for posting. wonderful to hear your soo optimistic....we are delighted to hear the news of hte engraftment.
we were especially thinking of our dear hunter today since ollie has been wearing his brown GAP combat style trousers and tan stripy top which hunter has passed down to him. every time i looked at him i thought of hunter. he did look very cute too i have to say
hang on in there guys; it certainly sounds like things are brighter and looking much more positive...fingers crossed they only get better from now on.
all our love and hugs xxxxx
I'm really happy the transplant worked ! Now I'm crossing the fingers to stop these GVHD too...
ReplyDeleteI guess #4 will be the last thing to be check on your list ! And I'm not even sure: Hunter is such a nice baby, he could decide to take all his medicine without trouble by tomorrow :)
Bonjour à vous,
ReplyDelete2 sur 5, c'est un résultat encourageant. Quant à le faire manger : voulez-vous que nous lui envoyions quelques douceurs françaises (bonbons, chocolats, gâteaux), ce serait Noël avant l'heure ?
On vous embrasse mille et mille fois,
Sylvie et les garçons
He's getting closer!!!! I am so happy to hear that, he is such a strong little boy and you guys are amazing!
ReplyDelete--Gina
What a strong boy, what wonderful parents. You guys are so inspirational. Bruce and Willam
ReplyDeleteI read your blog this morning and had tears running down my eyes. After having 4 children and now grandma to 5, you have got to be two of the best parents ever! I remember those times of discomfort in a child and still feel the same way with my smallest grandchildren! Your putting it into words is so incredible! I pray every day for Hunter and know God is there for all of you! Much love, Darlene
ReplyDelete