Day 13 - CONTINUED
Redden had a fever through the night last night that caused me to go into a minor state of emergency. But by 9am this morning it had gone away and he was looking more like his normal self. The cultures haven't come back yet to determine if he has a virus but they have ruled out pneumonia and respiratory viruses, which is a big sigh of relief (this is their, and our, biggest concern currently).
A few times throughout the day and this evening he was spitting up a bit, which is new, and we are trying to figure out if his body is rejecting the antibiotics or if this is a symptom of chemo, or what. More things to worry about...
Today was overall a restful day for him, despite the minor hiccups. He seems to be more comfortable now, and even when he is awake, he is calm and content. His team is very optimistic about how much his tumor has shrunk, and assure us that he is making progress, little by little. They are pursuing a couple additional measures to help get some of the extra fluid out of his body, idea being that it will assist his lungs in pulling in better oxygen and displacing more CO2. These are the last two pieces of the puzzle that have to fall into place before he's ready to get off the vent. We discussed with them some of the 'what if's' today, like, what if we can't get him off the vent soon? The answers were hard to hear... tracheotomy, surgery to remove the tumor, etc. Once I picked my heart up off the floor, they assured us that these are not going to happen, and that we will go after additional chemo to shrink the tumor further, long before we'll talk about alternative options to the ventilator.
What makes this whole thing so confusing is to see how well he appears to be doing. They keep his sedation level light enough that he can open his eyes and interact with us a little, but that he's not in pain or fighting the vent. Developmentally he's at the stage where he's reaching for things, like our hands, or his cords. The nurses love that (haha). His color is absolutely beautiful, and when he looks at you just feel this gut instinct to scoop him up and hold him. Like he's totally normal and everything is ok. I constantly fight that urge.
He's putting on weight like a champ, coming in at almost 14 pounds, which means that by the time we leave the hospital he will have grown out of all of the cute clothes I have stacked up at home. I'm a little sad about that, but not sad about all his chunky, healthy rolls.
I continue to be thankful we are in good hands. I continue to struggle with patience. I continue to be confused about what time of day, and day of the week it is. And I continue to hope and pray for our little warrior.
Comments (12)
I love your team of doctors. And wow - 14 pounds and reaching out for things! Thanks for keeping us updated. Sofia and I say a prayer for Redden and you all every night (at least).
We are praying for you constantly. I found out today that one of my colleagues lives in your neighborhood. Such a small world. She and her family are praying for you guys, too. I am encouraged and amazed by sweet Redden's strength and resilience. He is such an amazing fighter! He has blessed so many people already in the short time he's been on this earth. This kid is something else! Hang in there. Know that you are not alone in this. We are with you, even if we can't be with you physically. We are sending you so much love!!
Praying for all of you.
Walking with you, friend. Big hugs from SC.
Beri- Each day brings new challenges but keep in mind that he is showing some positive signs, as well. Remember that army of people praying for him ? They continue and increase by the day--- all positive energy coming his way!
The depth of your faith, hope ,strength.....and yes patience..is inspiring. And yes...redden is my super hero( along with the rest of you Irving's:) Will continue to pray, send love and energy your way...and share your site with many more , you can never have too many praying for you. Xoxo
It seems like you have a team of awesome doctors that are focused on positive thinking. So happy to hear he is becoming a happy chunky monkey. He must be a very special little guy. We are always thinking of you all.
Beri/Brian and I sending you guys so much love and support from this end. I pray those tumors are shrinking and that you guys continue to have patience, courage and any amount of comfort you can muster through little wins. I am so grateful to hear Redden is doing well and growing!! So cute. many hugs and we are here if you need anything!
It is refreshing to hear such cheerful news (given the circumstances). I am continuing to pray for Redden and for all of you.
Beri, give yourself some credit for those sweet baby rolls. Your dedication to pumping milk for him is huge! I'm a high school friend of Lauren's who is pumping for my own little one. Lactation ain't for sissies! You will continue to be in my prayers. Hope there are better days ahead.