Halloween 2010

Lalo had several little changes today. They weaned his hydromorphone (narcotic) a bit. This is a good thing, but also challenging because we have to watch him go through withdrawal symptoms like trembling and vomiting. They are also weaning down his oxygen slightly. Lalo is still having issues with the feeding including throwing up (hard to tell what's withdrawal and what's feeding related) and difficulty digesting. However, they did go up to 3 cc's on his feeds plus a few pieces of Halloween candy here and there ;-)

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Bumble bee

Trick or treating JH style

Trick or Treat

A nice Bmore sailor helped Lalo push the luggage cart this morning

New toy

Big Lo finally gets to hold Little Lo!

1 cc

Well feeds didn't go as smoothly as hoped. They had started on 3 cc's an hour continual feed thru the feeding tube. To give you an idea of how gradually they were starting, there are approximately 30 cc's in an ounce. It didn't take long before Lalo started regularly throwing up and in the middle of the night they stopped feeds. CDH babies have a real hard time with introducing feeding. Their bowels are used to being in their chests, and when they are placed in the abdomen they don't exactly replicate how they would naturally be in most people. So it takes a long time to get digestion to go smoothly. They started Lalo on a medicine called Reglan, which helps the tummy push food through. They then restarted him on 1 cc an hour at around 1 pm today and as of 9:30 pm...no vomiting! Baby steps...

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Chubby cheeks

Moved to a big boy crib and out of the sickest baby bedspot!

CPAP

Feet

Sweet dreams

Pumpkin

Ducks!

6 wks 1 day old

Little Lo was feeling a bit better yesterday. His fever broke Monday night and didn't return. He showed good respiratory signs so they made the switch back from cpap to nasal cannulas. Definitely a good step, plus it's way more comfortable for him. As the respitoray therapist said, Lalo worked his hardest to defeat the purpose anyways. The machine pushes oxygen into your nose, so he would just leave his mouth open to release some of the pressure.

After much back and forth, they have decided not to do a "cleaning" of his Broviac iv line. After some frustration with the whole thing, I finally emailed our surgeon to get the answer right from the source. He stopped by yesterday and made the decision not to do this method. It is a relatively new method and is typically only done when they don't think they are effectively fighting the infection. Because they feel like he is getting better, it is not necessary right now. They also were able to do the spinal tap yesterday, despite Lalo's best efforts to stop them. He threw such a fit for the doctors that he snoozed for hours immediately after. The results indicate that the infection did not spread to his spinal fluid, which is very good.

Big plan for today is to start feeds again! Let's hope that it goes a little smoother this time. They are also going to work on weaning some of his narcotics. Both of these are major projects for our road to getting out of this place!

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Cuddles

2 steps forward, 1 step back

It was confirmed that little Lalo has a bacterial infection in his blood. It is believed that it started at his central line going into his chest. This was placed during surgery and very soon after it looked pretty red. We questioned it, but it was not a huge concern because that is a natural reaction anytime you have a foreign object going into your skin. They were just watching it closely to make sure it didn't get any worse. Ironically, I mentioned to the nurse yesterday that it looked better. Well when the nurse put him back on his bed after I held him yesterday she mentioned he was warm. About an hour later after a change in position, she noticed puss from the central line. Not long after he developed a fever. So it began...

Overnight, he started struggling more with breathing. They decided to switch from nasal cannulas to CPAP, which is a little mask going over his nose to provide oxygen. This is the middle step before being intubated (back on the ventilator). He seemed much more comfortable. His fever came down slightly today, which is also good. He is on 2 antibiotics now, and after 48 hours they should be able to more specifically identify the bacteria to make sure they don't need to change medications. In the meantime, they decided to sample his spinal fluid to determine if the infection had spread that far. That would change how long he required antibiotics. They do this by taking a sample of spinal fluid from his lower back aka a spinal tap. They weren't able to get enough fluid from the first injection, but Lalo got too upset and started desating from the poor positioning of the CPAP while they had him in the position they needed. They decided to let him have a break and they will attempt again later. Poor baby!

Since they have a confirmed infection, they need to figure out what to do with that iv line. They are investigating a method of cleaning the line, where they run something into the line to break down the bacteria and then pull it back out. This is not commonly done in the nicu because most nicu patients don't have these lines, so there is no protocol on doing it. Therefore, they are still researching whether it's the best option and who should be doing it. It is fairly common and successful in older chemotherapy patient kids that frequently have these lines (Erin C. - if you are still following our blog and have any helpful info on this, email me sfrank218@gmail.com - I don't have your contact info and am not usually here nights). Unfortunately, they really need that access line because he is receiving all of his nutrition and medication intravenously. Hope this all resolves itself quickly so we can get back to move forward and closer to getting him home!

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Monday, Monday, love that day.

Today has been another eventful day for Lalo so far.  They have removed his arterial (art) line (a line used to give him meds and to take blood) from his right hand.  Now he only has a Hickman line (a large line in his chest that runs to his neck and then sits above his heart) and various sensors.  The art line has a sensor that watched his blood pressure and now they will have to manually take it, scary.  But this means that we are able to HOLD HIM!!!  Excited much? Sarah got to hold him today (41 days after he was born!! picture to follow), but I'm back to work so I have to wait until I can make it back there.

 

They also decided to start feeding him.  They have been able to hear GI sounds, which is a very good sign that his intestines are starting to work.  We can imagine that his is hungry!! 

But around 8:30 pm the phone rings with Johns Hopkins on the caller id...Unfortunately, about an hour after starting the feeds they noticed puss around his Hickman line. This is unrelated, but they stopped feeds while they addressed the new issue and started him on an antibiotic. Surgery came to investigate and decided that it looked okay. However, an hour later he spiked a fever and they sent blood cultures and added another antibiotic. The cultures take up to 48 hrs to fully develop, but one of the factors already came back elevated, which indicates his body is working hard to fight off something. They will talk tomorrow about whether to remove that line or not. Unfortunately, that is the main access they have at this point for nutrition and medications, so that would definitely be a problem. Just when we think we are completely moving forward, we manage to find ourselves yet another setback! Poor Lalito has a had a lot of hard work this weekend, but pray he has some more strength stored up to fight off this infection.

 

 

 

 

Working hard

Since getting the chest and breathing tubes out Lalo has been working very hard.  He is learning to breath and use his lungs on his own.  He is also learning how to swallow.  This was tough to watch because every five to ten min or so he would essentially choke on his saliva and eventually force himself to swallow, pump his little lungs to catch his breath and then slowly calm down and rest.  The nurse would allow him to do so, tough learning curve.  He has been doing very well and the first 5-10 hours off the breathing tube he learned fast.  His blood pressure has been slightly elevated since removing the breating tube, but has been trending down and as of Monday morning it is at good levels.  Every time he gets comfortable they will ween or adjust something, in a good direction, but it makes him struggle and he gets uncomfortable and has to work to catch up.  He has tolerated all adjustments and is working hard to get out of Dodge (Hopkins). 

 

 

No more breathing tube!!!

Going, going, gone!

Lalo moves too quick for us already! I had a post half written earlier today but never got a chance to finish it. Now it is way outdated because Little Lo has made a few changes...in the right direction!! We are breathing tube free!!! They continued to wean his vent settings down today and his blood gases remained good. At 3ish our respiratory technician said something about how they might try extubating him before the shift was over. I (sarah) made her explain it again because I just couldn't process it. Around 5:00pm they decided they were going to try it. Boy was he mad at all the commotion but it was a success!! I even got to hear a tiny raspy cry for the first time since he was born!

Overall, he is still remaining stable post-op. The surgeon said now the focus is on the repair holding. This time next week we should feel more comfortable that he will not reherniate, because that is usually how long it takes for scar tissue to form. They took the chest tube out earlier today too, which from my understanding takes away some infection risk as well as some pain. As a matter of fact, it seemed really night and day with it out. Soon after it was removed he was awake for almost 2 hrs just looking around and not at all agitated.

Also, they did not do the ct scan last night. It was decided it was not needed until Monday or possibly not at this time unless he shows symptoms of a change. Finally, something I feel like our questioning influenced.

Overall a wonderful, awesome, very good day!

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Before surgery caught a pic of his whole face while they were changing his tape - birth announcement picture?

Recovering

Little Lalo continues to be an amazingly strong little boy. All the doctors are very pleased with his recovery. His ventilator settings continue to be pretty low and periodically they wean him further. This is based on his blood gases which have all been fine. His abdomen does not appear to be overly swollen. Although his pain seems a little better managed than it was last night, he continues to have periods if time where he gets agitated and it is visible that he is in pain. They usually subside fairly easily with an additional dose of narcotics.

There was an incident last night where the tubing that is connected to a chest drain was found by the nurse just resting in his diaper. The two pieces were supposed to be taped securely together, but were not. This was extremely upsetting to us, as this exposure is dangerous and exposes him to additional risk of infection. The surgery team ordered the drain to be suctioned and antibiotics given for 24 hours. The nicu drs ordered xrays to make sure there wasn't another issue. Just something else to worry about. The nurse taking care of him today said she had never heard of that happening in her 27 yrs of nursing. Awesome! :-(

The neurosurgeon has requested an additional ct scan of his head. They want to make sure that nothing got worse during the surgery. It seems to be precautionary and he is not showing any signs of additional injury. This means a trip to a different floor, which we are not totally happy about given that seems fairly stressful while recovering from surgery and still working on pain management. However, all of the people with the actual medical degrees are in agreement. So he will go at some point tonight (they don't want to wait until over the weekend because they are less staffed). We are hopeful that it won't cause him too much extra stress.

Thank you to everyone for their prayers and good wishes. Clearly, they helped Little Lo a lot yesterday. From what everyone tells us, it seems that there must be thousands of people praying daily for our pumpkin. He continues to impress us by the moment and we feel so blessed to have him with us.

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Lalo got a sneak peak at the OR

Thursday night

Lalo has had a fairly good afternoon/evening. His ventilator settings have stayed at a good, consistent level. He was able to come back from surgery still on the conventional ventilator. This is good since babies will often need increased pulmonary support from either an oscillating ventilator or nitric oxide. He is only getting 30% percent oxygen, which everyone is happy about. The nicu attending and several of his other doctors have said they are happy with how he looks and how well he is doing. His blood gases have been drawn several times since surgery and each has been pretty good (shows how well he is oxygenating his blood and removing carbon dioxide).

We saw his chest xray immediately following surgery side by side with one from several days ago. It is amazing to see the difference. You will probably find them framed in our family room one day. At the very least we will have to include copies with a thank you to our health insurance company.

Unfortunately, Lalo has clearly been uncomfortable and in pain during his recovery so far. He was awake and aware soon after surgery and has since required several increases in his medication dosages. We are watching his blood pressure closely because it is a good indicator of how he feels. It is hard to watch him pain after all that he has been through, but his doctors/nurse are constantly monitoring him to try their best to control it.

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Hanging with mom and my new and improved diaphragm!

Our champ!

Baby Lo is out of surgery!! His surgeon said it was a classic, medium sized hole in his diaphragm. He was able to do the majority of it thoracoscopically (sp?) but had to finish with a small incision on the side of his abdomen. He was able to sew it instead of using a gortex patch. Lalo stayed stable as a rock while on anesthesia. His small intestine and part of his liver were in his abdomen so the right lung is extremely small, but the surgeon did say the lung looked healthy. Everything fit back in his tummy, but it was tight so they will be watching that closely. Again, the next day or so will be very critical. We will try to keep updated. Thank you for all the prayers and thoughts!

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Game time

They took Lalo back around 10:40 am, his surgeon came out 10 min later to give us a hug, tell us that Lalo is comfortable and everything would go great. Little Lalo was wide awake this morning and we got to spend almost 2 hours with him. He seemed happy and cozy, and fell back to sleep 15 minutes before the anesthesiologists came in. We went with him the whole way to the operating room doors and gave him kisses. Pray for our strong baby boy!

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Packing

On his way to the OR

Tomorrow

We are still on the schedule for tomorrow morning. His mom and dad are nervous wrecks, but Lalo seems pretty relaxed and he rested up lots today in preparation. The surgery is expected to last about 2 hrs. We are on the OR schedule for 8:45 am, but because this is a children's trauma hospital, we would get bumped for any other emergency surgeries. Our surgeon told me today that the first 6-10 hrs will be the most critical and the after the first 24 we should have a better idea on how well he was able to handle the repair. The nicu attending said she would venture a guess that he will be pretty sick for about a week post-op. Overall, this will be a very intense few days for little Lalo (and us) so please keep praying and sending good vibes for his strength and health.

His has a had a few other minor complications in the last few days that we forgot to mention with the excitement of surgery. Sarah found a bedsore on the back of little Lalo's head on Tuesday. It is only the last few days that they have been turning him completely on his side to help with the lung issue the other day. While he was really sick they were not moving him at all and this is one of the unfortunate complications. So the little guy got to mingle with yet another set of doctors from the wound care department. Also, this morning the nurse saw tgat the broviac catheter (iv line) in Lalo's chest had broken thru the skin close to his neck. This is a large iv line that is put in close under his skin. Because, it is so thick and his skin is thin the line became exposed. Before beginning surgery tomorrow they will replace this in a different location on his neck. Poor thing will have yet another procedure. We also noticed some uncontrollable trembling today, which was described as either a neurological reaction or a reaction to the pain medications he is on. As his nurse said today, he seems to have had a bit of a dark cloud around him. Let's hope that changes before the morning.

In better news, the attending took some time to explain the head ultrasound to me. The blood that was present on the MRI that they were watching (because it had increased from the last ct scan) had decreased and the pockets of spinal fluid that are normally in the brain had cleared out a bit indicating that the bleeding wasn't causing further issues by blocking the circulation of that fluid. Also, the nurse last night decided to let him take over his temperature control. She turned the warmer off on his bed and put him in a tshirt and swaddled him in blankets. So very cute! Here's a picture.

That's all for now - off to drink a glass of wine and try to get some sleep tonight!

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T-shirt!!

Favor request

We need some help from our blog followers...we need you to be on the lookout Wednesday night. If you see our surgeon at happy hour, I need you to send him home because...he put us on the OR schedule for Thursday morning! Yes that's right - we have an actual date and time scheduled for L's repair surgery. Now that we put it in writing, I'm sure we'll get a call any minute changing it, but still we are very excited. All joking aside (No really Dr L - no happy hours!!) keep on praying for little Lalo this week. Pray that it is not a large hole in his diaphragm, that our surgeon is able to do the less invasive procedure, and that our brave baby can stay strong throughout his surgery and recovery. We will keep everyone updated on his progress. Is that the phone ringing....

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Plotting how to pull his tube out...

Fun park near Aunt Fina's!

Weekend of the Marathon

This weekend was slow overall. But we got a tour of all the best parts of Baltimore while trying to maneuver our way around the Marathon. But did finally make our way after a few wrong turns. Lalo has been stable since returning to the NICU. We are trying to get used to the new process here and the new way they are evaluating him. There are different priorities and new terms for very similar or the same things.

Yesterday (Monday) was also relatively stable but some minor issues with his lungs. Sarah found him on his side when she arrived and after some questions and generalizations the term used to describe he issue was collapsed lung. He was on his side to help give his lungs space to expand. As it turns out each time the ventilator was tweaked in the PICU this was related to some type of "lung collapse" issue. Which as it turns out is not a huge issue. The PICU would x-ray Lalo every day to check the lung and make sure it was hyper-inflated (which is good). The NICU does not and only watch blood-gas levels and check the lungs with an x-ray when the blood-gas levels are not good. The same but different.

There was also lots of talk about surgery yesterday. The doctor even asked us what day was better for us! Now? We will try and get more info on an exact time.  Still waiting on neurosurgery to give the green light.

Checking out the new location

Sneaking out

>
>> He's one month old today! To celebrate he snuck out of picu at 4 in the morning last night...and moved to the nicu. It was not due to a change in L's condition, but a need for bed space in the picu. So far the switch seems good. It's much quieter down here and not such bright lights. Plus, it can't hurt to have a new group of drs and nurses giving their insight. He likes to make as many friends as possible from what we've seen so far.
>>
>> Overall, he seems to be hanging pretty steady. They did say he desaturated (low heart rate and oxygen levels) at one point last night so they are running blood and urine cultures to rule out an infection. Pray that we are not dealing with another infection. They are also running tests to see if they need to increase his phenobarb (sp?). This was being given to prevent seizures associated with the brain bleed. Apparently the nicu resident saw him having some signs of a seizure this morning - rolling his eyes back and pushing his arms out in a certain way. He is also getting head ultrasounds to follow the swelling in his head. I saw the neurosurgeon yesterday and he said it was slightly increased on the MRI from the last CT scan so they would just be watching it. We are hopeful that this will not cause us more issues.
>>
>> He was super alert again this morning, which is great. The nicu nurse had me clean his eyes and lips, and take his temp. I guess I looked surprised, so she said "what? They didn't put you to work upstairs?". Love it!
>>
>> Still no decision on when surgery will be. Nurse yesterday said she heard rumors of Tuesday. His neurosurgeon said closer to 4 wks or end of oct. His pediatric surgeon had said the end of this wk (as in today) the last time I spoke to him. The nicu resident just told me she heard Wednesday, Thursday or Friday of next week. So place your votes now! When do you think it will be? Winner gets lunch from the hopkins cafeteria :-)
>>
>> Sent from my iPhone

Sleepy

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.
>>
>> 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.
>>
>> 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.
>>
>> 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.
>>
>>
>> Sent from my iPhone

Hello handsome!

MRI

>> The MRI went fine today (now yesterday). Little Lalo took a joy ride to the basement for the MRI, played nice with the anesthesiologists, and came back to his cozy (temporary) home in the PICU. The images were as they suspected from the CT scans - there is a significant amount of brain damage. It is a hard thing to quantify though becuase of his age. If this happened to an 18 year old, it would be devastating. However, the newborn brain is very plastic - meaning it has the ability to adapt. An infant has not yet assigned particular parts of the brain to particular functions, so as he develops, a baby could reassign those functions to the healthy parts of their brain. However, that is not a certainty and there is really no way to predict. We will just have to watch how Lalo develops over the next few years and pray for a good outcome. We do know that extensive physical therapy and regular neurologist visits are a part of our not so distant future.
>>
>> We also got the news that there is talk of doing Lalo's hernia repair surgery towards the end of this week. This is exciting because it really is the next step in moving forward, but at the same time terrifying because it is a huge hurdle to get over. We were warned today that he is going to get a lot sicker after the operation, it will most likely be a few scary days immediately following. And still, there is no way to know if his lungs will be able to function appropriately after the repair. The hope though is that within a couple of weeks, we would be able to wean him off the ventilator. Only then, many days after he was born, would we get to hold little Lo. The surgery fellow also told us that it takes some babies 3 or 4 weeks before they are ready for feeding (via feeding tube). The bowels go into shock from being handled during surgery (because they have to be moved from his chest to his abdomen). In addition, his brain injury will likely slow his surgical recovery.
>>
>> Pray that little Lalo has a restful week so he can get nice and strong for his surgery and also that he can get more fluid off.
>>
>>

No go

Well the food was a big no go. He started having issues with it yesterday evening - trouble with his breathing, higher heart rate, and food/air pulled back from his feeding tube. All indications that he wasn't able to handle it. We're disappointed, but overall it's not really that important right now. We'll cross that bridge when we get to it.

MRI is on the schedule for tomorrow. After that, the various surgeons and drs will regroup with us to see where we are at and what the game plan is.

He still looked pretty good today and those eyes are looking all around trying to figure out what's going on. He also got a visit from Nana and Grandpa. Lucky for us Lalo has off tomorrow, so we get to spend 3 nights just miles away from little Lo.

Go skins!

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Saturday brunch!!

So Lalo Sr. got here this morning in time to watch little Lalo have his first Saturday brunch! No, not scrapple and eggs ;-) They are starting him on tiny supplemental amounts through his feeding tube. It is less for the nutritional factor and more to just wake up his tummy. The next 24 hrs will tell us wether he can handle it or not. There are several issues they will be watching for since his bowels are in his chest. We are praying that he can handle it well.

Also, we were back this afternoon and Lo is the most awake either of us have ever seen him. He was looking around, sticking his tongue out, and we even saw 2 yawns. He seemed very content, and comfortable, and maybe it's too early to say but I swear he could tell we were there! He is too cute for words and he really looks smaller than yesterday!

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Rescheduled

Sorry for the lack of an update yesterday. It wasn't because it was a bad day, just a busy one. Lalo's MRI was rescheduled for Monday. We were a little disappointed, but not really a huge deal. He was negative again yesterday, meaning he put out more fluid than they put in him. Good news for him getting rid of the built up fluid. And I totally think he looked skinnier yesterday than the day before. Who would have thought we would be happy as the baby loses weight?

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Quick note

Not many changes to report for L.  He is having an MRI tomorrow that is a follow up to the neurosurgery.  This is slightly nerve wracking, as he will be put under general anesthesia, transported to a different floor, and then he is inside a closed tube, where they won't readily have access to him.  Please keep him in your thoughts and prayers tomorrow, for both a calm adventure and good results on the MRI.

Also, as you can tell from my last picture, Little Lalo is waking up a bit more and showing off his handsome eyes.  He is still pretty well sedated, but they are weaning back gradually.  They also had to increase some of his ventilator settings last night because they had weaned past his comfort level.  The attending said the point he is at now is still good, but they just figured out probably the lowest setting they can have him on for the time being. 

What are you looking at Mr Ventilator

3 weeks old!!

Lalo is 3 weeks old today.  He is keeping the celebrations low key, which is great.  He deserves a few mild days after his adventures over the last few weeks.

Sounds like the PICU docs don't think it's a good idea to start feeds, which is a bummer.  Today is his last day on all of the big hitter antibiotics, so I'm hoping he doesn't show any additional symptoms in the next few days (or ever!). And in my opinion his swelling looks a little better today.  Here is a little pic below.  That's my chair he's pointing at ;-)

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Lalo is 3 weeks old today!

C's Recliner

Box fun!

Boring

>
>> Dare I say Lalo is having a boring day? Which is wonderful! They have been able to wean back his ventilator settings a little bit over night. They are still trying to fine tune his meds a bit to try to reduce his swelling. They have even thrown around the idea of feeding him a bit, which is typically not done until after the surgery to fix the hernia. Nothing confirmed, but I hope they decide to so he can get stronger while he recovers from this surgery.
>>
>> Big brother, Caleb had his 15 mo well visit today. Imagine that - a regular drs appt! His is doing well but she did warn us that it looks like his molars are getting ready to come in. That ought to be fun ;-)
>>
>> Sent from my iPhone

Pneumothorax - updated

No chest tube for now. Our surgeon thought his 2nd xray looked much better and none of his numbers indicate an issue. They will do another xray later in the day to recheck.

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Pneumothorax

> As I was driving though the inner harbor this morning headed to the hospital I received a phone call from one of the pediatric surgery doctors who works with our surgeon, dr. Lukish. Lalo's daily X-ray showed a pneumothorax, which is a pocket of air between his chest wall and his lung. This occurs as a result of being on a ventilator for an extended time. I had to give consent for them to place a chest tube to relieve it. It sounds like a relatively safe procedure (at least compared to what he's been thru), but untreated it could potentially cause a collapsed lung and cardiac arrest.
>
> When I arrived 15 minutes later or so, they had decided to get another X-ray to confirm. One of the surgical team members told me that since that the X-ray looked similar to the first one, he was going to consult with Dr. Lukish to decide whether or not to proceed with the tube placement. I haven't heard back yet, but at least it does not sound as urgent as the phone call I received this morning. Keep little Lo in your thoughts today.
>
> Sarah
>
> Sent from my iPhone

Driving home in the rain

Another calm day for Lalo. They are working on reducing his narcotics a bit, so he can move around a bit more. This will help with the edema (extra fluid). The nurse said he was weighed last night and he is about 11 lbs (can't remember exactly because she gave it in kilos). That is one hefty newborn, so clearly he still has lots of fluid to get rid of.

We were both sitting with him when the nurse changed his diaper, cleared his breathing tube, checked his pupils, and tilted him to the opposite side. Boy did he get mad at her!! He turned bright red, his blood pressure rose, and he held both of his fists slightly up in the air. Felt bad for him, but it was also wonderful to see him a little more awake.

Please say a prayer for the family of little Lo's roommate for the last few weeks, "M". Their baby girl passed away today. She was also on ecmo and has basically been hospitalized since she was 4 mo. old (I believe she is 8 mo. now). Even though we have only had a handful of conversations with them, I think both Lalo and I found a lot of courage and strength from her parents. They just seem like good people and so dedicated to their daughter. We hope she is resting peacefully.

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Recap

Thank you all for your kind words, love and prayers. The last few days have been incredibly hard for us as we recovered from the scariest day that either of us have ever experienced. We have done a lot of crying for our son because he can't cry for himself. We have asked the doctors and nurses millions of questions because little Lo can't ask for himself. And we have held each other, because we can't hold him. It is hard to put into words all that we have been through, where we are now and where we are headed but we will try. I apologize in advance for the length of this post - part is to share with everyone that is following our story, but mostly it is to have something to show little Lo down the road, so he always knows how amazing he is.

On Wednesday, we thought we had lost him. Lalo had started back to work on Monday and I had been commuting into Baltimore every morning. Lalo had been at work for only 15 min or so before he got a call from our dr that he should come in because they saw something on the brain ultrasound and we had to make some decisions. As we found out, little Lalo had experienced bleeding between his brain and skull, which was pushing his brain to the side and creating brain damage. As I think we mentioned previously, the biggest risk to being on ecmo is that they have you on heparin, a blood thinner, to prevent blood clots. Tuesday night before we went to sleep we called and found out that an IV line in his leg that they had been unable to use for the last few days was being blocked by a blood clot. In order to prevent this from becoming an issue, they needed to increase the heparin, which ended up contributing to the bleed in his head. The only way to attempt to drain the hemorrhage would be to remove him from ecmo. This was very risky, since the last time he had a clamp test, he had not done very well. Really we had no choice though. We had him baptized while we waited for the surgical team to prepare. They also gave us the opportunity to hold him, which is seldom done. A baby is almost never moved while they have cannulas in their neck and it took a team of 7 or so people to move this little 8 lb angel. While it was something we had wanted since he was born, it was very scary as his stats quickly started fluctuating and they needed to take him back within 30 seconds. It then was a waiting game of worrying if he would remain stable while they waited for the blood thinner to diminish enough to proceed.

As Lalo wrote the other day, the drain did not work. That night we had to make the decision to send him into the operating room. We were told that this was probably one of the riskiest operations that they do at this hospital. If he became unstable at any point, there would be little they could do because he was no longer on ecmo support. We were basically told that the outlook was "grim" but it was our only hope.

Little Lalo is the strongest little guy you could ever imagine. He survived the surgery and has remained stable up to this point with little support (compared to what he was on prior). His kidneys have started to function a little better and we can even tell that he is less swollen. In our minds, he made the decision for us that he was ready to be off ecmo and start doing all the work for his heart and lungs on his own. The extent of his brain damage cannot be predicted. This is frustrating to not have answers but really it does not matter.

It's a little bit strange to us on how much his medical focus has shifted in the last 3 days. The surgery to repair the hernia is no longer of immediate concern. It will most likely be a few weeks before they would want to put him through another surgery. They want to give him a chance to heal from brain surgery before they put him through any additional stress or trauma. We met with his team of doctors this morning (the attending for the PICU, 2 neurologists, the surgical fellow and our nurse). We asked many questions, but the most important answer we got is that from a cardiac and pulmonary (heart and lungs) perspective his prognosis is pretty good. This is very encouraging to us. Several times over the past few days I have asked the surgeon, the attending and the fellow if they thought little Lo would have made it if he hadn't gone on ecmo. Everyone of them has told me that without a doubt, he would not have survived. We are so lucky to have him and look forward to our future with him.

We can't offer enough thanks for all the help we have gotten over the last few days. It is amazing to see how much people care about us and our family. We feel truly grateful and blessed. From what everyone tells me, we have half the world praying for little Lo and I'm pretty sure that's what has helped him to be so strong.

Love, Lalo and Sarah

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