04/06/2024
4/6 Back to ICU. BP is out of control and ECHO shows heart function declined again (EF about 50).
BP has been drending up after 3/21 surgeries. Matthew had a lot of headache and We still don’t know the reason yet. 4/1 he had another anesthesia to revise the very tight stoma. The surgery went very well. But after the surgery, Matthew started to vomit more and more, like 15~30 times a day. Renal doctors increased dose and frequency and types of blood control meds (labetalol, isradipine, hydralazine) and BP bounced back faster and faster.
Luckily G-tube has been working very well and he seemed to tolerate feeding well. Brain MRI and CT on 4/4 ruled out any big changes in brain. CT and X-rays on 4/5 ruled out any dangerous issues in intestines and lungs. Cardiologists came and told us that they don’t think Matthew’s heart had any problems. His heart now is as good as normal kids. Just in case, they suggested an ECHO. However, the ECHO result on 4/5 came back alarming… Cardiac doctor said this time is different from the last heart failure since the situation is much better. But, he said the important thing three times, “bring the BP down, bring the BP down, bring the BP down!” And he brought up a good suggestion — get ICU involved.
Charge nurses also noticed 4/5 that they missed several dose of baclofen since Matthew’s G-tube was set to be drained and somehow his clonidine patch dose suddenly reduced to just 1/3 what it should be this week (there were three patches and suddenly one nurse realized there’s only one left) ! As what ICU doctor said when they came, “ weaning baclofen is no joke!” Meds weaning is the same as drug weaning. With these two meds messed up, it explains well why Matthew had such miserable days! Poor Matthew… 😭
We still don’t know the reason of the high blood pressure after March 21(kidneys issues? Anesthesia issues?). But at least we know why it got so bad in the past few days after the 4/1 surgeries (drug weaning on top of high BP). No matter what, the BP treatment is urgent. 4/6 Matthew is transferred to ICU where it is allowed to drip BP medicine continuously and adjust the dose on the fly to manage the BP.
I should have prayed unceasely…. I’ve been busy looking for a place in Boston for us to stay after Matthew gets discharged. Today when I grabbed food in the afternoon and finally sat down to eat, I felt exhausted. One verse came in my head “It is written, Man shall not live by bread alone, but by every word that proceedeth out of the mouth of God.“ — Matthew 4:4 KJV.
I put down my food and prayed. Human are so limited and make mistakes. How would I dare not to pray!!! God, please guide the doctors and nusrses hands for whatever they do on Matthew.
