“Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.”
It was a rough evening last night. It’s been a rough week, but what’s new?
We met with hospice on Thursday, and they began care. It doesn’t mean we are at the very end, but it means that we (Josh and I) will have some help with Tage’s care, immediate answers to our questions in the middle of the night, and only one number to think to call when we come on a new situation. We are grateful to have the support.
We think all this has come at just the right time. In the past two weeks, Tage’s breathing difficulty has increased and he started using a nebulizer (which he hates, of course), we have given him pepcid for some reflux he was having, and we had started to give him some pain killers…all which have allowed him to sleep through the night for the past three nights. And we have had family helpers here in the evening so that Josh and I can also get some sleep! And yet I still walk around in a tired fog. But I can only imagine it would be much, much worse if it weren’t for the sleep that we are getting.
The hospice nurse arrived yesterday afternoon as Tage was really starting to experience some pain. Because he can’t cry, we had to go by other symptoms of pain: distressed sounds, back arching, increased irritability. He was definitely in pain. She increased the frequency of his OTC meds. She told me that the onset of mild seizures (which started a few days ago) as well as all the other new symptoms were concerning for her, and she will be honest with us about what she sees, but she thinks she needs to see more of his progession before she could give any time lines.
Then, around 5:30 last night, Tage was inconsolable. His back was constantly arching; he couldn’t catch his breath; his eyes were huge and full of terror, he made sounds the most like screaming I had ever heard him make. We got on the phone with hospice to get something stronger for him.
Around 7:15, after an hour and a half, we hadn’t heard anything, so we called again. When they called back, they let me know that the nurse was on the other side of town. It would still be at least an hour and a half before she would get to our house with meds. She said, “I’m sorry, I don’t have anything else to tell you to do to keep the little guy comfortable.”
We felt so helpless as our baby writhed in pain.
Eventually, around 9pm, he was so exhausted that he fell asleep. Thank you, Lord. The nurse arrived around 9:30.
She gave him Vicodin, because the doctor thinks it’s nerve pain. That didn’t help. So she also gave Morphine. And though Tage was calmer, he wasn’t able to sleep yet, which he desperately needed. He’s a little fighter, that Tager Tot.
Finally, around 10:30, he fell asleep. And he slept all night.
He has continued to sleep much of the morning, and we are still trying to manage his pains with meds.
The Lord’s mercies are new every morning, and I am continually reminded that as the Israelites as they wandered in the desert for 40 long years, the Lord only provided enough manna for each day. Never more. And so, each morning, we know He will provide what we need to get through each new day, which is probably a good thing because we can’t deal with more than one day at a time right now anyway. Apparently, He knows what’s best for His children after all. Huh.
Thank you for continuing to pray. Pray for peace in our hearts and rest for our bodies and minds. Pray for wisdom as we move forward and care for Tage the best we can.
We are so grateful for your prayers and messages to us last night. We are grateful for good doctors and medicines. We are grateful for our Lord who never abandons us, especially in the midst of storms.
His mercies are new each morning, and He is faithful, even when we don’t understand His plan. He loves us. His compassions never fail. We are not consumed…even by the darkest nights.
Help us to trust You at Your word, Lord. And please place Your hand on Tage’s body.