Well, the past 24 hours have changed things again for us! The biggest update, is that we are being discharged tomorrow afternoon some time! The reason this is so crazy is that the Dr. who was on the floor yesterday, was telling us she wanted to keep us here for the entire first month of Jack's treatment. We had begun to think through how we could do this as a family and all the changes that would entail.... and then our nurse came in this morning and told us she was pretty certain we were going home, as early as today if we wanted!!
Let me tell you about the past three days that lead up to this decision of our doctor. Firstly, you should know that when Jack was diagnosed with Leukemia, he had a blast count in his blood of 37. That count is now at ZERO!!!! After the central line was put in on Thursday, they began his chemo treatments Friday. He had been having a fever up until that time. He has responded so well to the chemo, and other medications, that he has been fever free since. He is also no longer attached to his IV all of the time as well, but only when he has to get some meds!
When they took him off of the IV yesterday, it was like our little boy was back! He was bounding around the room, laughing, jumping (on the bed a little), and just overall so joyful. We walked the halls and just had a great day. We played with playdoh, cars, coloring, watch cars and few times... it was a sweet day.
He has also gotten quite used to being touched and looked at, although he still does not like it too much, he does not scream when they come in to take his blood pressure. He has even been able to sleep through a few of his middle of the night vital checks they have done, when his nurse has been particularly gentle.
Jack also received another dose of a different Chemo yesterday in his thigh. It is a shot called a Peg, which kids can have allergic reactions to, but sweetie pie boy did perfectly. Praise God! He was pretty upset about getting poked again, but after a few hugs and a new toy, he was back to his happy self again.
So the Dr. yesterday told us that she felt that she wanted to keep him here for an extended time and on antibiotics, even though she knew that his fever was due to the Leukemia and not an infection, it was a more conservative approach. She said that another Dr. might not agree with her, but that was her decision.
So we prepared ourselves to stay put for the next 3 weeks. Then this morning, our nurse told us they were taking him off of the antibiotic and we would be able to leave whenever we were ready! My mind started racing at this point! Not with fear, but with the millions of things we had wanted to get done before we come home to prep our home for him!
Thankfully, we are not getting kicked out today! They are spending much of today teaching us how to care for his Broviac (the tube inserted into his chest) and how to keep it clean each day and the meds I will need to use for this. They are also helping us to get a clearer picture of what the new "normal" is going to be. And there is an army of servants helping us ready our home for his return, so my mind is now at ease.
I think the biggest things that fill my mind during the day, are wondering when we can expect sickness, hair loss, and big side effects from the chemo. I think we are planning on cutting his thick hair short by the weekend, so that if it starts to come out sooner, we are more used to this look on him. My heart gets heavy at the thought of my bald baby, but I know that there will be grace for that time, as well as grace for any sickness we will face. Once we get home, we will be keeping a vigilant eye on any fevers or illness that might creep up, as a fever will send us back to the ER for antibiotics.
It amazes me that so much has happened in just 1 week. One week ago, we were on our way to the ER at Shady Grove and now we are in a much different place. I know that the Lord has been near to us each step of this past week, and I know I will need to be reminded that he is very near to us, as we walk through the next 3 years to full recovery for our boy. He has always been faithful and I know he will continue to prove his goodness to us in the night watches, in the sickness, in health and when we are weary.
Thank you again friends, for the prayers and care and practical needs being met. We are so grateful for all you have done and are doing.
Comments
Jenny (Peters)
yay! Can't wait to see you guys at HOME!!
-Eva
-Susan and the rest of the Nelsons!
"Mercy awakens expectations. I am eagerly waiting for the next scene. The designs of mercy are not exhausted. The deeds of mercy are not all told. The display of mercy must reach higher than ever yet dawned upon my imagination."
We know God is a merciful God. His display of mercy on the cross can not be surpassed. However, we can expect His mercy to be revealed again and again through our lives. It is His character to be merciful! Looking forward to seeing His mercy displayed in and through your family... and praying to that end.
I know you said he will be losing his hair...could we send him a couple of baseball caps from sports teams in Texas? Might be fun to ask others to join in to build a collection for the little buddy. That way he can see how many people are praying for him. Thoughts?
meghann hasty
~ amy davidson
Jon and Lory Payne
"In You is grace to sustain me, and wisdom enough to guide my way, mercy enough to fogive me, and power to finish what you began. All that I need is in you, Jesus, a fountain of grace that overflows. All that I need is in you, Jesus. You are my only hope."
With much love & grace,
Colleen Martin
Blessings,
Nadia