4 weeks

>> The plan changes once again. The neurosurgeon had his chance to chime in on the timing of Lalo's repair surgery. He felt strongly that we should wait another week. As far as we know, this is not because of a specific issue with Lalo, but because 3 weeks would be a more ideal recovery time before yet another surgery. So it sounds like we are now looking at next week. They will work on getting as much extra fluid as they can off of him before that.
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>> In a meeting we had with the doctors on Monday, we raised the question of whether there had been a recent look at his heart. Prenatally Lalo was diagnosed with a small vsd (ventricular septal defect). He had an echocardiogram of his heart the day after he was born (during the Hopkins shooting lockdown), and it was still present, as well as a pda (patent ductus arteriosis). However, Lalo soon got a lot sicker and needed to go on ecmo, so these issues quickly fell off of our radar. Since they had not looked at it after he came off ecmo, they decided to get another one. Good news, both the vsd and the ppa are no longer present. He does have a small pfo (patent foramen ovale), but that is not a concern as 20% of people have that and it does not require surgical repair. Also, they saw lower pressures on the right side of his heart than the last echo. The right side of your heart pumps to your lungs and he had very high pressures after he was born as a result of the diaphragmatic hernia. They are still higher than normal, but lower than the initial echo, which shows improvement in the lung function.
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>> There was also discussion among the drs after Lalo experienced a blood clot in his leg while on ecmo, that he may have a clotting disorder, basically the opposite of a hemophiliac. It is highly unusual to get a clot while on ecmo, because of the blood thinner they give you. They also noted that he clotted through 2 different ecmo machines rather quickly and he required a lot of blood products while he was on it. Yesterday we got the results back from the hematologist of his labs and they did not indicate that Lalo has a clotting disorder, which is good but still leaves us with unanswered questions.
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>> Little Lalo was quite awake when I got here this morning. He was looking all around and moving around. Overnight they had also removed the sensors on his forehead that give a measurement of how much oxygen is getting to his brain. The nurse said that now that he is more awake, the numbers aren't very important. It is more significant when a patient is heavily sedated or unconscious and they have nothing else to go by. Plus, she said they are very expensive - $250/day! A step in the right direction! Plus, he looks much more handsome without them.
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>> Sent from my iPhone