Post Op Day 2

Today has been a good day, for the most part. The morning started out with several bouts of nausea and vomiting; but by tonight it seems to be old business. Morphine is a drug of choice for pain, but it results in more of the upset tummy. They tried changing up the pain meds and the nausea has definitely decreased.

Nicholas has had a some pain issues today. He is not one to speak up and demand things, so by the time he is in pain it is like we are chasing it and it's hard to catch up to it. He has complained that his rear end hurts from being in a bed for three days now, and he absolutely hates the chest tube drains that are sewn into his abdomen. The nurse tried to transfer him to a chair to sit in for a change, but that caused a lot of pain from the tubes. He spent a lot of the day blinking back tears because he couldn't communicate what he needed. He is much more alert today and is aware of where he is and what he's been through. 

The chest tubes are probably one of the last pieces of discomfort that will come off of him. This is because they are actively draining the fluid from inside his chest post surgery and if there is any residual bleeding, that comes out of these tubes, too. They "pulled" his LA-line, which is a monitor that is sutured to the atrium above his left ventricle. It measures the pressure as the blood dumps into the ventricle below it. The sweet spot is in the high single digits or low double digits, around 8-12. They suspected that the line was not functioning quite right and that it was safe to pull it, but it could cause internal bleeding because it is attached to the atrium with the sutures. The chest tube output did not drastically increase after this procedure was done, which indicates minimal bleeding. As all the wires and tubes come off, Nicholas is one step closer to leaving.  

I would attach a photo of my boy, how good he looks, but he is watching Netflix on my phone and I don't want to bother him. He deserves to have any gadget that distracts him from everything else going on. 

Post Op Day 1

Lorenzo and I went back to our apartment late last night and purposely did not set our alarms, waking up when we felt rested. Thankfully, our phones never rang, and we slept hard, waking up much later than I had anticipated. We got ready quickly and walked back to the hospital, arriving around 10:30 am. 

Our nurse explained to us that Nicholas had some relatively unstable blood chemistry and some arrhythmias in the beginning of the night before but that now he was pretty stable and his blood chemistry looked to be improving. Apparently his glucose was very high, which required them to give him insulin, and he also had a very high level of lactic acid, which is treated with potassium, calcium, and magnesium, and it had started to improve by the time we got there. 

We missed the morning rounds, but we were told by our nurse that Nicholas would be extubated (breathing tube removed) over night or tomorrow morning. Throughout the day, Nicholas had good numbers, good pulses, and lots of other good signs that he was progressing better than anticipated. They started unparalyzing him shortly after we arrived. It was a beautiful sight when I saw his little toes twitch and his body move. They didn't want him to go from being paralyzed to fully conscious, so they put him on a medication that helps with pain, amnesia, and moderate sedation. After a few hours they could see that he was doing well and took him off of it so that when we were repositioning his body, his eyes shot open and we looked at each other for the first time since we left each other for surgery. Of course, he fell right back to sleep, but it was another encouraging sign that he is doing well. 

One thing that was unsettling today was that even while fully sedated, he went into SVT, which stands for supra-ventricular tachycardia. This means that there is a faulty electrical connection or abnormal areas of electrical activity starting in the upper chamber of the heart and a normal rhythm cannot be sustained. When this happens, the heart rate accelerates too quickly and does not allow enough time for the heart to fill with blood before pumping again. This episode lasted for about 10 minutes and it came on rather quickly. They had been talking about extubation when all of a sudden his monitor started chiming and next thing you know there are 5 doctors and nurses in the room trying to break the arrhythmia. They hooked his pacing wires up to this machine and tried to break the speeding heart rate, but it didn't work. So they tried again, and it didn't work. They were about to intervene with medication, but luckily he came out of it on his own. The medication they would have used would be a beta-blocker, and the MD explained that it would actually decrease the left ventricular function -- which is exactly opposite of what we want to do, now that the double switch is done and Nicholas has a left ventricle that pumps to his entire body. We want it to prove that it can do the job; not give it a free pass to be lazy. So we are praying that the arrhythmias work themselves out as the swelling and fluid output continues to decrease.  

About a half hour after the arrhythmia episode, the respiratory therapist came in and started prepping Nicholas to get the breathing tube out. Nicholas had started trying to communicate and of course couldn't. They had weaned him off of the ventilator and he was basically breathing entirely on his own. So they came in and removed the tube. Initially his throat kind of hurt, but he is now able to talk and he feels much better already. 

One of the biggest hurdles after his last surgery was his nausea. They are being extra careful not to do anything too quickly here so that we can avoid him starting a cycle of throwing up and not feeling well, which means no food or water for 4 hours after the breathing tube is removed. He literally just got to eat 2 little ice chips, and much to our relief, they stayed down without any heaves or nausea. After the second chip, he said he wanted to rest. I guess begging for water or ice for 4 hours wore him right out! He has been sleeping soundly for an hour now. 

We ran into Dr. Marx downstairs when we went to grab a bite to eat. He said he is pleased with how things are progressing. He seems cautiously optimistic. As soon as we returned upstairs, Dr. del Nido was making rounds and he also thought Nicholas looked very good. He wants him to rest and we will continue taking things very slowly. 

A funny side note is that all the nurses have commented on his great hair. Even Dr. Marx said something about it downstairs. For just having had a major open heart surgery, his hair DOES look amazing. <3 

Double Switch Operation

We got to the hospital at 10:00 this morning. We went straight to the 3rd floor, which is the surgical floor, and they got right to it. We changed Nicholas into his gown and they gave him premed to help him relax. He was quite emotional at the start of it all, but by the time they wheeled him out of the prep area, he was "fine", relatively speaking. 

The family waiting area is quite large, and we had plenty of space to get comfortable for the long haul. The surgical assistant, Dr. Kwan, came and talked to us and explained that the operative preparation will take about 1-1.5 hours. This is when they will place all the lines in his arteries to monitor him during the surgery, place the incision and get through all the scar tissue from his previous surgeries, cool his body temperature, start the IV's, etc. 

Dr. del Nido said that he expected the surgery portion to last about 5 hours. Nicholas was on bypass for that entire time. He said that the first part of the Double Switch is to do the atrial switch. This means that he re-routes the INCOMING blood from the veins to the opposite atria. He does this by using "native tissue" from Nicholas's pericardium, the tissue that surrounds the heart, and creates a "baffle" - which is like a tunnel - that takes the blood to the opposite side of the upper chambers of the heart. 

After that is complete, he starts the arterial switch. This is the part where the aorta and the pulmonary artery are switched to the opposite ventricle. He was able to switch the two arteries without any real issues, but when they "started" his heart again, the left ventricle struggled more than he would have liked to see it struggle. He said we kind of expected that to happen to some degree because of the super high pressure the left ventricle was pumping to get blood out through the PA band, and now that the PA band is no longer there, it kind of lost some of the oomph it had been used to pumping against. Also, the right ventricle had been pumping at a systemic pressure beside the left ventricle (causing a "stiff" septum, the wall between the lower chambers) and once the pulmonary artery was attached to the RV, the pressure automatically went down to a normal pulmonary pressure so the septum remodeled and the LV has encroached into the right ventriclular space. 

Dr. del Nido said that he saw some distortion of Nicholas's aortic tissue above the aortic valve, and that he would fix that part of the vessel as well when he did the switch. He said that he feels like the technical part of the surgery was very successful, and the first 48 hours will tell if the LV will be able to do it's job.  Because of all of this, they are "supporting" his left ventricle with quite a few meds and keeping Nicholas paralyzed and heavily sedated. They don't want his heart to do anything but get used to the new job that's been asked of it. They are planning on keeping him like this for the next two days or so. 

It is really hard to walk in and see your big boy on a bed surrounded by wires, tubes, monitors, and laying on a cold pack as big as he is. His body was cold to the touch and they said the heart beats better when it doesn't have to keep the extremities warm. 

Pray for our boy, that his heart does the job it has been asked to do, and that he does not have any unnecessary traumatic setbacks along the way. We decided to come back to the apartment because I don't think I would be able to sleep with all the commotion with them caring for our boy. That was really hard, to leave him. I pray that everything goes smoothly tonight until we get there in the morning. And I hope that he is truly sedated and does not know I left him. 

(Leading up to) SURGERY DAY

So this is the day we've been anticipating for years. YEARS. 

Now that it is finally here, I find myself in a state of disbelief, grief, hope, fear, love, faith, and did I say fear? 

Ever since Nicholas was diagnosed with L-TGA all those years ago, I have been consumed and obsessed with learning about the defect, studying it and teaching myself and learning from others, so that I could help make the best decisions for my boy. I have done my due diligence to be an expert in this defect and I understand the benefit of this scary surgery, which will hopefully provide my sweet boy a chance at a long and happy life. 

This has been literally one of the scariest points in my life. I have been trying to be strong so he won't see me cry, but I break down often. He has been very quiet and reserved. He cries tender tears at night. He is so brave. I know he tries to protect us by not showing how scared he is. But I know he is afraid. He knows his body will be open to the hands of his surgeon and his body will be kept alive by machines today. He knows he will feel pain and hunger and confusion that he can't control. He knows he will have a long road ahead of him to get back to the happy, sweet, carefree boy he is. This will change him. Inside and out. 

We are blessed and fortunate to be in Boston. Dr. del Nido is probably the best pediatric cardiothorasic surgeon in the world. He looks unassuming, but the people here at Boston Children's Hospital sing his praises. He does twice as many Double Switch surgeries every year as they do at Stanford. He is the one we feel is the very best to finish up this journey we have taken to make Nicholas's heart anatomically correct. 

Yesterday, we were at the hospital all day. Our day started with check in at Pre Op, where we filled out paperwork, signed forms, etc. We went straight to labs, which Nicholas hates, and they drew his blood to have baseline chemistry and to make sure he is not harboring sickness. We went to x-ray, where they checked to make sure his lungs were clear.  We had a consultation with the cardiac nurse, who showed us around and took vitals. We had an EKG. The Child Life Specialist pulled us aside and Nicholas got to transport the Stanley Cup from the basement up to the exit of the hospital (which was funny because he has never so much as watched a single minute of hockey in his entire life!). We got to take a break for lunch and then we had the. longest. echo. ever. Their machine took such clear images that even an untrained eye could probably decipher what they were looking at. It also took 3-D images, which was pretty cool. The echo was almost 2 hours long and they took over 200 images and videos. We then waited for a bit and officially met Dr. del Nido. He was very informed and answered all of our questions. He indicated that he felt confident that this was a window of opportunity. I'll explain more about that in a bit. 

We then met Dr. Marx, who has discussed Nicholas with me and Dr. del Nido all of these years. He is very experienced in L-TGA and has a wealth of knowledge that he shares and helped us feel some peace in the looming surgery. He is a very kind and empathetic man.

The last stop of the long day was the MRI with gadolinium contrast. The gadolinium is an important piece of data that would let us know if there was any damage to Nicholas's left ventricle from the very tight PA Band. This was almost a nightmare. Lorenzo and I had both decided and agreed that we would not consent to doing the Double Switch if the MRI wasn't similar to last November's and if the gadolinium showed damage. Nicholas hates needles and his only "good" vein had already been used for the blood draw earlier in the day. Not one, not two, not three, but seven attempts later were they able to get a vein for the dye contrast injection for the MRI. At one point in the fiasco, the MRI tech told us we did not even need the contrast and tried to get us to agree to do the MRI without it. I almost lost it. I told him we came all the way from California for this particular piece of information and we weren't leaving this hospital without a gadolinium contrast MRI. I would not have been able to sign the paperwork without 100% assurance that Nicholas's left ventricle wasn't as healthy as possible for this surgery. They ended up calling in a fourth nurse who got an IV in for the contrast. The MRI itself took almost 2 hours and they got the images they needed to assure the team and us that Nicholas is as ready as he can be for the Double Switch. 

Nicholas had to stop eating at midnight, so we went out for a real Italian feast at Carlo's Cucina Italiana. It was delicious.

And here we are.

A Looonng day at BCH pre-op

We were at the hospital today from 7:30 am until about 6:45 pm. We had every test done known to man today, and we have the green light for Nicholas to have the Double Switch to "correct" his anatomy. We have to get him a bountiful dinner right away, because he cannot eat after midnight tonight, but I promise I will update the blog when we get back. 

Thank you to all who have texted and sent messages today. Keep those prayers and good thoughts coming!

BOSTON

We left home on Thursday morning and after a long day of flying, we landed in Boston, MA.  We left Sacramento, laid over in Phoenix with just enough time to practically run through the airport before catching our connecting flight, and got to Boston at about 8:45 local time. We had a lot of turbulence on the last portion of our journey across the country, but we made it safe and sound. 

We got in pretty late and made it to our hotel, ordered a pizza, and went to bed. We woke up pretty early this morning and were ready for our hospital orientation when they called and told us to come an hour and a half later.  So much for a few extra zzzzz's. So we killed some time looking at maps of things to do and got to the hospital at around 12:30 local time. They took us to all the locations where we have appointments scheduled. We will be there most of the day on Monday and should know what the recommendation is going to be, based on the data they will collect...

Nicholas has had very congested sinuses and he's been saying his ears hurt.  He's had yellow snot for about 3 days now.  He hasn't had a fever.  I thought his ears might be hurting because of the pressure inside the plane, but even as I write this, he has said his sinuses and ears feel kind of funny. I told Suemei, our orientation guide who works with Dr. del Nido, that he has the runny nose and she asked if he is on antibiotics or is taking ibuprofen.  I told her no, and she said they will check him out on Monday.  I'm hoping that he is feeling better by then and that they will still be able to see him for the testing. We also told her that we will not consent to surgery without seeing the MRI report first.  She said we should have all the data and will be able to talk to Dr. del Nido after all is said and done. 

It was raining off and on all day and after we got back to our hotel we were able to ride the trolley to Fenway Park.  We got to take a tour of the stadium and see the oldest MLB field in baseball!  It was really a highlight so far, getting to see something so historic and meaningful to Nicholas.  

So now here we are, at the hotel, and Lorenzo and Nicholas are downstairs playing a game of jenga with pieces so big the start of the game is almost as tall as Nick.  

I am having a hard time getting photos to upload, but I wanted to write an update nonetheless.  I will have a little more time this weekend to go into some specifics.

Bye from Boston!

The Truth Hurts Sometimes

Echo at Dr Wright's Office in Sacramento

It has been a while since I've posted on my blog and there is much to update. I have "written" many posts in my mind but putting my thoughts on paper make them permanent and there's no denying I've had them once they are out. 

The last time I posted, Nicholas was home - recovering from his last PA banding surgery - and I was home with him, tutoring him from the school he was missing and trying to keep his spirits up. Truth be told, I found myself kind of sinking into a black hole and really suffering watching him suffer and knowing that there's nothing I can do except love him and advocate for him as we try to 'fix' what's broken with his heart. It was during this time while I was away from work, and it was mostly just him and me, that I had one of those ding,ding,ding! moments. I realized that unlike other diseases, such as some cancers or type 2 diabetes, there is no "we're going to beat this!" or "I'm changing my diet and exercising more so I can beat this!". I had a very defining moment where I realized that congenital heart disease could win this battle and I could lose my son. 

It is something that I acknowledge now...but I cannot wrap my head around it. Knowing that Nicholas having an eventual Double Switch will not actually FIX his heart. Knowing that everything we have tried to do to prepare him could backfire and he could struggle even more than he already does. Knowing that there are random complications in the operating room. Knowing that his heart could give up and he could need a heart transplant. Knowing that he might not have a match if he needs a heart transplant. Knowing that he could enter the gates of heaven before me and that's not how things are supposed to be.

I am going to start from where I left off and attempt to explain everything that has transpired since April of 2017. Here goes: