Longest day of our lives

The neurosurgeons were able to pull off a small amount of blood with the tube they placed. Soon after the flow stopped and they said that there was still a large amount of liquid and clot left. After some issues on a CT scan location (they had to bring someone back in to open the scan thats on the same floor - usually only open during the day) they confirmed this. They said the next and only option besides leaving the clot, and any brain damage in place, was to operate and remove the clot. At this point moving the tube was not an option because the portion that was clot could not be removed with the tube. Lalo went to the operating room at 11:45. The operation took about two hours. They where successful in removing the clot and he was stable after the surgery. No one should have to go through this ordeal let alone approve and then just sit and wait. The doctors have been very reassuring that a baby such as Lalo has the ability to rebound from this type of trauma, but there are many unknowns and if he can survive the CDH surgery next we will not know the affects of this surgery for many years. Please pray for him to have the strength and ability to rebound from this.

The neurosurgeon just stopped by to look at him and was happy that both of his pupils reacted to light (one was not responding before surgery) and that he was responsive to touch. Sarah just helped the nurse to give him his first bath and he was also responsive to that. They will take him for another CT scan later in the day. One of things they are concerned with after the relief of pressure on his brain is swelling. Swelling is the natural reaction, but too much will just put us right back through hell.

Lalo

Wednesday, September 30

Sarah's sister Ellen...
Routine scanning done overnight showed bleeding between the skull and the brain. This is pressing on and crowding the brain. The doctors need to place a drain to relieve the swelling. To do this, Lalo needed to be separated from his "conjoined twin" (i.e., come off ECMO) and be taken off heparin (blood thinner) so he doesn't bleed too much from this procedure.

He seems to be doing a good job of "holding his own" off ECMO. He's on a respirator, but doing some of the work himself. His kidneys are also giving a good effort, with a little help from medication. Right now he doesn't need medication to keep his blood pressure up and his labs are good.

They did a CAT scan after he was taken off ECMO. This confirmed a large pool of blood and some darkened areas indicating injury. There is no way to know the ultimate impact of this. The newborn brain is in the best shape of any to adapt to any injuries, but a few prayers wouldn't go to waste here.

The effects of the blood thinner have decreased enough to place the drain, which should be done shortly.

We'll update when we have more info.

Sent from my iPhone

9/28

> Lalo had some improvements over night. He has been peeing some on his own and the heavy antibiotics seem to be helping. He is still extremely swollen from several days of his kidneys not really responding. But he is way less pink than he was yesterday and his hands and feet are a much better color/temperature (yesterday they were gray and ice cold).
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> They have had to increase the settings on the ecmo to help him fight off the suspected infection as well as the extra stress that the fluid puts on his lungs.
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> The fellow showed a lot less stress in her face when she gave me some info after rounds. She is happy his kidneys are starting to pick up and overall seemed like he was showing some progress. But she didn't want to say any of that around little Lalo bc he likes to try to keep her on her toes. Sounds like our boy! The surgeon also was very cautious and said we need to just hope and pray that he has a couple more good days like this. We are still not confident, but today is a better day than yesterday and we'll take that. Please continue to pray that Little Lo can stack up a few more good days.
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> Sent from my iPhone

A new week

>> More of the same roller coaster ride over the last 2 days. Unfortunately, just when we think we are making progress, we fall back behind or encounter a new issue. Lalo's kidneys continue to be a big issue for him. The drs seem to alternate approaches every couple of hours, but at the moment they have turned off the ultra filtrate (the kidney on the ecmo machine), turned off the the dialysis (did we ever mention that they started that over the weekend), and continue him on a medication to encourage his kidneys (basically like caffeine for you or me). So far not doing the trick but we are still hoping that this starts working.
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>> Our new issue is that they believe Lalo has an infection. Yesterday he got really red, his heart rate increased, and the ecmo machine gave some other indications that he may have one. He initially responded very well when they started him on antibiotics, but then continued to show symptoms. They are working on adding several antibiotics to help fight whatever is causing this. So far none of his cultures have come back positive, but they often take 48 hrs, so they treat it regardless. Unfortunately, these antibiotics are also not kidney friendly so it just makes the hurdle more significant.
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>> One positive note is that the attending this morning was pleased with his lungs while looking at his X-rays. We just really need to get over these battles, pray for our little man to have some added strength to fight these issues.
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>> Sent from my iPhone

New ecmo machine #2

So after having dinner with Caleb, playing, and putting him to bed, we called the hospital to check in on how things had gone since we left at 6:30. Much to our surprise, they told us they had made the decision to replace the ecmo circuit again. I guess they became worried because of some clots in the machine and the fact that they still weren't getting any urine output for the day. This blindsided us a bit since last time there was at least some discussions we were aware of in the hours leading up to the switch. After waiting an hour to call back (we didn't go back since they kick you out anyways so they can create a sterile field) we finally breathed a bit. They said the switch went great and his levels all stayed good throughout the change and they even got some pee!! (here's to hoping that one day Little Lo can be super embarrassed about how much info I put about him peeing on the Internet).

Another issue we came across today was that there was some blood leaking from the cannulas in his neck. Any extra bleeding is worrisome bc one of the biggest risks about being on ecmo is that you are on blood thinners to help prevent clotting. This can cause serious bleeding issues. When we called back though the nurse had gotten through to the pediatric surgery dept and they decided they weren't concerned. Let's hope this remains the case.

Sarah & Lalo

Cutie pie

Sat 9/25

No major updates for today. Our surgeon told us yesterday that any day that something bad doesn't happen is a very good day. We know that in our minds but our hearts wish for more progress. This is day 8 on ecmo and from rounds this morning, it sounds like there are no plans to try to come off in the next 48 hrs.

As you pray for Lalo, please include the 3 other babies at the hospital that are on ecmo. One of the techs the other nite told me that this is only the 2nd time ever that all 4 ecmo machines have been in use at the same time. They actually have 5, but for a safety measure they always keep one as a backup. Scary to think about what happens if another baby needs it. I know what's now at the top of my list for what to do after we win the lottery.

Thank you everyone for all of your prayers, love, support and help. We feel incredibly fortunate to have so many wonderful people in our lives. Not to mention, incredibly lucky to have such great doctors and nurses.

Keep praying for little Lalo's kidneys, they seem to be what's holding us back at this point.

Sarah & Lalo