Recovery has been hard. Much harder than Jacob expected. And much harder than I expected. We were both thankful to move to Children’s Hospital after a week at VGH. The nurses and doctors were good at VGH, but there really is no comparison to the care given at Children’s. The atmosphere is considerably more pleasant here too, as well as the building. We joked it was like moving from a Motel 6 to a Hilton.
Over the last 9 days, Jacob has hardly eaten anything. A feeding tube has been put in through his nose. Yesterday was tough on him getting used to it, but he’s already adapting and feeling a bit better about it all. The feeding tube is something that has been “threatened” all through chemo by the nurses and myself to keep him motivated to maintain his weight, and he has worked so hard to not have to have it – but like I started by saying in the post – recovery has been hard.
Rehabilitation has been incredibly slow and at times excruciatingly painful. To move Jacob from the bed to a chair or commode and back can take over an hour. The first time he sat up in bed unassisted took 3 helpers and almost an hour to get him holding up his upper body by himself for a couple minutes. Today’s move to the chair using a slider board, myself holding his leg in a steady position and the physiotherapist helping went really well. Everyone felt so positive, but once we moved him back he experienced the worst pain yet so far – he cried for about 20 minutes as I held his leg up as steady as possible because any shift up or down hurts him so badly. This process will be long. Because Jacob’s remaining thigh is only 8 cm there is little left to power his leg to move. His body has to relearn how to use the calf muscle that has been attached instead of his thigh muscle. His brain also has a lot of relearning to do and new pathways to make. His brain thinks that the entire leg is still there because the nerve was left intact. Jacob often has itches “by his knee” that he cannot scratch because the knee is no longer there. So far there has been no phantom pain, only phantom itches, which we are very thankful for.
Jacob’s oral blood thinners were changed to twice a day injections for the next 3 months. This complicates chemo a bit more from the drop in platelets that happens from the chemo. Preventing a blood clot is the priority. Many people have asked how long it will be until we go home or until chemo starts again. For now we really have no idea. Recovery is going significantly slower in terms of mobility than we expected. The dressings were removed over the incisions yesterday and he has developed a large blood blister which will also slow healing and can add to complications. The hope will be to get Jacob on his foot next week sometime, but as of today he is unable to do anything more than sit. Jacob is very quiet as he is processing all of this, and has times of being very “down” but overall continues to maintain his good attitude. He has really appreciated the letters coming in, and even received one from someone in Egypt. Thank you again to everyone for your love, concern, care and prayers.
Fight on, Fighter
For King and Country
I was there on the day that you were changed
You were scared, unprepared for the heartbreak
Everything you knew faded out of view
Stole a piece of you
If I could, oh, I would be a hero
Be the one who would take all the arrows
Save you from the pain, carry all the weight
But I know that you’re brave
Fight on, fighter
Don’t let anyone steal your fire
Fight on, fighter
The Spirit is alive in you.
Stronger than you than you ever thought
I know you’re stronger
Braver than you were before
You know you’re braver
Oh, no, you don’t have to be afraid
Together we’ll face it
So don’t ever stop no matter what ’cause you’re gonna make it. 💛