Toughest Days, 20 days
By Heather Hebert — 6 hours ago
Work woes. Friendship issues. Financial difficulties. None of these experiences hold a candle to yesterday, today, or the next 3 days to follow. I can handle stress. I'm built for it. Heartbreak is a different ballgame. It's a game with no rules, it's always unfair, and no one wins.
If you have been praying for Alexah, keep praying. Pray harder. Pray for her mental strength. Pray she fights physically and mentally.
Today was another trial of clamping the ECMO. Again, it went well. She is still battling her PH. It is still very severe. The remodulin was actually reduced today because she was struggling directly after increases. I believe the rapid increase was also contributing to her sad feelings and overall bad feeling. I am hoping the reduction in the remodulin dose will improve her progress until she is off ECMO. For now, the plan is to TRY and come off ECMO after the weekend, depending on her progress over the weekend.
After the discussion regarding the medical plan, the doctor asked if we could intervene with Alexah and provide a mental outlet for her. During this tear-filled meeting, he expressed that it was important for Alexah to be able to acknowledge and express her feelings about being sick. Knowing that coming off ECMO could go well or poorly, he wanted Alexah to be heard. Alexah will start with her specialist tonight. I pray this offers her some relief.
A clot was located in the ECMO today. A very scary moment for us, but the team, cool as usual, handled the situation before it could become a threat. Part of the line was removed and replaced with new line. These are the dangers of staying on ECMO too long.
As the room cleared out from the replacement, I returned to sit with Alexah. I held her hand. I whispered in her ear that she was going to get better, I was going to take her home soon, and we were going to play dolls and watch movies. She squinted her eyes shut and tears rolled out of the corners of her eyes. She shook her head side to side.....no. Heartbreak.
She can't give up. She can't stop fighting. She can't leave me. Not now. Not because of this unfair game.
Pray. Remember, God answers prayer.
By Heather Hebert — 6 hours ago
Work woes. Friendship issues. Financial difficulties. None of these experiences hold a candle to yesterday, today, or the next 3 days to follow. I can handle stress. I'm built for it. Heartbreak is a different ballgame. It's a game with no rules, it's always unfair, and no one wins.
If you have been praying for Alexah, keep praying. Pray harder. Pray for her mental strength. Pray she fights physically and mentally.
Today was another trial of clamping the ECMO. Again, it went well. She is still battling her PH. It is still very severe. The remodulin was actually reduced today because she was struggling directly after increases. I believe the rapid increase was also contributing to her sad feelings and overall bad feeling. I am hoping the reduction in the remodulin dose will improve her progress until she is off ECMO. For now, the plan is to TRY and come off ECMO after the weekend, depending on her progress over the weekend.
After the discussion regarding the medical plan, the doctor asked if we could intervene with Alexah and provide a mental outlet for her. During this tear-filled meeting, he expressed that it was important for Alexah to be able to acknowledge and express her feelings about being sick. Knowing that coming off ECMO could go well or poorly, he wanted Alexah to be heard. Alexah will start with her specialist tonight. I pray this offers her some relief.
A clot was located in the ECMO today. A very scary moment for us, but the team, cool as usual, handled the situation before it could become a threat. Part of the line was removed and replaced with new line. These are the dangers of staying on ECMO too long.
As the room cleared out from the replacement, I returned to sit with Alexah. I held her hand. I whispered in her ear that she was going to get better, I was going to take her home soon, and we were going to play dolls and watch movies. She squinted her eyes shut and tears rolled out of the corners of her eyes. She shook her head side to side.....no. Heartbreak.
She can't give up. She can't stop fighting. She can't leave me. Not now. Not because of this unfair game.
Pray. Remember, God answers prayer.
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