Teething

Yes, I said that correctly. Lucas is teething. We cannot believe it, but there really are two little white bumps on his lower gums. This could explain why EVERYTHING goes straight to the mouth, as well as the drool that is flowing out continuously. He continues to do well at home, there have been no changes in his meds, it still feels like I constantly give him meds all day long, but I don't mind at all, it could be way worse. He is just getting to an age where he isn't as complacent with taking them anymore, he puts up a good fight, so it is a daily challenge.

Following his BT shunt surgeries his tummy time skills had majorly digressed, this time we have started tummy time a lot sooner and he seems to be already catching back up, he'll be on the move in no time, we had better batten down the hatches!

At his last cardiology apt he weighed 14lb 2oz and was 23.5 inches tall and his sats have been in the 80's, thank goodness for this! We are loving being home and are so thankful to have Lucas recovering at home.

4 Months

Happy 4 months little bubba. I can't believe it, time is flying by. Lucas has endured 11 days in the NICU, 19 days at LPCH for a BT Shunt and Shunt revision, a heart cath, followed the next day by his Glenn, followed by a quick 6 day stay in the CVICU, lots of pokes, prodding, echos, ekgs.. but most importantly he has brought us and so many, more joy and happiness than could be imagined. We are so grateful for out little guy. He is truly amazing. He has been through so much with great resiliency. It is hard to believe there is anything wrong with him, as he amazes us daily!! We can't imagine our lives without him.

Little Trooper

We are so happy to be home again, and again, Lucas is completely off of a schedule. When we come home from the hospital he has his days and nights all mixed up. Oh well, we are working on it, and and the last few nights have been significant improvements. The first couple of days that we were home Lucas was extremely fussy, we are presuming this is because of his 'post-glenn headache.' Poor little man, he has been through so much in just three months, if he feels like being fussy, we don't mind. He is continually eating well, and if you can believe it, he actually gained weight while in the hospital, he never ceases to amaze us. He is continuing on his blood pressure med, as well as lasix and aspirin daily.

We could not be happier to be settling back in at home again. Last night I was thinking how ironic it was that Lucas was born five weeks early and also had his Glenn five weeks earlier then planned. He is a man who likes to be punctual! Thank you for your thoughts and prayers while Lucas continues to recover. We are REALLY happy to have no looming surgeries for a while and grateful to have our son home after he has conquered three major surgeries in just three months. What a trooper. We continue to follow closely with our cardiologist for the next few months. We'll keep everyone updated with his progress.

The 'H' word

Yes we are HOME. We can't believe it either. We never actually like to talk about, or believe the 'H' word until we are actually here. Again, there is no place like home and we are more than so thankful for Lucas' recovery. He continues to amaze us. His heart cath was just one week ago today. If you meet Lucas you know that he is a fighter and he has such a strong will about him.

We absolutely could not be more proud of our son. We are continually trying to help Lucas with is headache. Due to the redirection of blood flow that occurs during the Glenn, the babies can get a backflow of blood to the head and subsequently a really bad headache. Lucas seems to be having many headaches as he is pretty fussy and seems to be in pain. We have been told that this will resolve over a few weeks to a few months. For now, we are so happy to be home and Lucas seems to be much happier here. We are so grateful and thankful for the wonderful care he received yet again at Stanford. We are also forever grateful for our cardiologist here, who AGAIN saved Lucas' life...

Lucas' cardiologist had to fight and work very hard to get Lucas on the surgery schedule for his first operation, the BT shunt. Many of the doctors and team at Stanford believed that Lucas would be able to wait until 3 months for his Glenn, but Lucas' cardiologist knew better. When he finally got his surgery scheduled for May 27, he said: for him, that day could not come soon enough. Literally, Lucas crashed on May 26, we almost lost him that night and he definitely could not have waited another day for that surgery. After Lucas' BT shunt, and BT shunt revision we came home and followed with Lucas' cardiologist very closely. Lucas was scheduled for his cath and Glenn in early September but Dr. Wright pushed for an earlier cath thinking that Lucas may need his Glenn prior to September, given that his shunt was clipped to a size too small for him. Dr. Wright got Lucas' cath scheduled for August 5th. Prior to the week of the 5th, Lucas' sats had dropped into the 60's. August 5th, we were admitted after his cath and Lucas' sats dropped into the 40's and 50's. The surgical team decided that again Lucas again should not wait another day for his Glenn. We credit Dr. Wright for saving Lucas' life, twice. He is such a wonderful person and doctor, we are so lucky to have him.

So, after two close calls and three major heart surgeries, we are home and happy to be so. We are so thankful for our wonderful cardiologist who knew when the right time for Lucas was, and for all of the wonderful people at Stanford, whom hopefully we won't see for a few years.

Blood Pressure

We are continually battling the post-Glenn blood pressure. It seems that we might finally have a handle on it. Lucas has been placed on an oral blood pressure medicine and is having much more 'tolerable' pressures. Overall he is progressing well and is finally getting back to his old self. We are still taking his recovery one day at a time, but he is an amazing boy and we are so proud of him.

Everyone here is continually shocked by his appetite and eating habits. After his surgery his surgeon was joking with us and saying that he may not even be able to be discharged before he needs Fontan, if he keeps up this rate of growth he could be 30lb in a few weeks. Of course this isn't true but it is comforting to know that everyone is pleased with his demeanor and eating habits.

Lucas and all of the cardiac babies are truly amazing. They go through so much and smile through it. The night before Lucas' Glenn when his sats were in in the 40's and 50's, he was ashen gray. I was giving him blow by oxygen as the nurse frantically was calling the cardiac team and Lucas gives Peter the biggest smile and a little giggle.

Post-op day 2

Lucas was extubated yesterday afternoon and was much more comfortable once the tube was out of his mouth he never has liked being intubated. We are continually impressed with his strength, being intubated twice in two days does not feel good on the throat. We are still dealing with a few blood pressure issues. It is normal after the Glenn for blood pressure to be elevated as the heart and body adjust to the new blood flow, not to mention increased BP from pain and discomfort. He also only has one PIV which is obviously causing him pain, during his transfusion yesterday his BP shot up every time they tried to infuse through it, they actually couldn't finish the infusion because of his pain. The difficult part about this is that it took three anesthesiologists to get the small IV in his foot, the vasclar access team attempted four times yesterday for a new one and were again unsuccessful, he is definitely a tough stick.

After the elevation in BP from the infusion they decided to place him on Nipride, from experience, no one feels good on Nipride. His BP was basically unchanged after the addition of the BP med, so the dose kept being increased to the maximal dose for his weight. He has been starting to eat and has been advanced to breast milk ad lib, but he is definitely nauseated. Since his BP has been essentially unchanged with the medicine, I suggested that maybe he is resistant to this particular med and it is obviously causing him to feel junky. They have now started weaning him off of the Nipride and his BP has actually going down as they are weaning him, he never ceases to amaze us.

Lucas is doing very well. His surgeon stopped by last night as was impressed with his progress. We are so proud of him, and are taking his recovery one day at a time right now. Thank you for your continued prayers. We are praying that his blood pressure remains stable and he is able to continue his recovery smoothly.

The Glenn

Lucas has proved his tenacity yet again. He is out of the OR and in the ICU. He had his bilateral bidirectional Glenn and is doing great. He is still intubated, but they are hoping to extubate him tonight at some point. They warned us that his head may appear larger due to the sudden change in pressure in the top half of his body, and it is slightly noticeable at this point. Lucas is absolutely amazing. I look at him lying there and am in awe of his perseverance and strength. He is probably getting pretty tired of this surgery thing by now, as this is his third heart surgery in less than three months, hopefully someday he will forgive us and understand. Please continue to keep him in your thoughts and prayers. All I can say is that I didn't know what pride really was until Lucas came into our lives.

(The picture is of Lucas playing before his surgery, what a happy guy)

Deja vu

Lucas' heart cath went very well today. They were able to take all of the measurements and pictures needed and determined that he is a very good candiate, and ready for the Glenn. Good thing, because he is having his Glenn tomorrow...

After his cath today Lucas' sats were low, but that is to be expected because they move the camera through the shunt causing some decreased blood flow. It was determined that he shunt that was clipped to a 3mm shunt is now only 1.9mm at its biggest diameter. The body has a tendency to lay down endothelial cells in the shunt as if it was it's own vessel, and therefore the shunts usually stenos over time, and Lucas' was too small for him from the get go. Also, they determined that his true sats (in the chambers) were spot on what we have been getting at home, and that is anywhere from 67-77.

After Lucas recovered beautifully in the PACU, they moved us up to the floor and things took a turn. Just like the last pre-op day, Lucas likes it to be known that he has arrived. He was doing really well until he started to get ravenous and irritable. He was so hungry and they were only allowing him to eat small portions at a time, he was having none of that. He was so tired and worn out from the day, this was just the icing on the cake. He de-sated into the 40's from being so upset. He remained in the 50's, pale, and wiped out for some time. After feeding him and holding him we were finally able to calm him down and his sats eventually came up and he is now in the low 80's. But these blue spells again prove that Lucas is ready for his next procedure. They decided that for his safety that they are going to proceed tomorrow. A bit of a shock, but I can't say we weren't both sort of expecting this.

Please pray for Lucas tomorrow as he has his Glenn. We are praying for no complications and for a smooth and successful heart operation. We know we are in good hands, thank you for your support for Lucas!!

Back in the Bay

We are back in Palo Alto, and as much as I love the area I don’t really like being back here again. Today was the pre-cath day, and although Lucas is a few months older than our last visit here, things were unfortunately very similar to our first ‘pre-op day.’ After another long day of procedures, an echo, ekg, and lots of assessments we had to go to the lab to get his blood drawn… Although the blood didn’t get spilled like last time, it was equally as unpleasant of an experience.

The only place Lucas has ever had a successful blood draw is in his right A.C.. I know what it is like to have people tell you, “I am a tough stick” when really they are not, but Lucas truly is… unfortunately we know this from experience. We tried to tell them about his tough veins but they decided not to listen to us. During their first attempt in the HAND, he was very upset at their fishing around and turned bright blue, a shade of blue I had hoped to never see again. So they again tried the other HAND. This was probably the closest to passing out that I have ever been; we cannot stand to see Lucas like that. Another phlebotomist was called in and he again missed. The third attempt they got blood from the right A.C. (and Lucas didn’t get too upset), but in attempt to draw it into the syringe, they accidentally pulled it out of his vein, he was only light blue this time. During this attempt they got blood, but it was “0.1cc” less than ‘lab protocol’ so they wouldn’t accept it, only to find out later that they would have accepted it, but by that time it had clotted. A third phlebotomist was called in and when someone says…"oh I think I can get that" they shouldn’t even try, because ‘think’ is not good enough on a little guy who has been through too much. Again, she missed and was fishing and Lucas turned blueberry blue. I had to put my foot down again; I cannot stand to see Lucas like this, nor is it good for him. I picture his tiny little heart working so hard and pumping blood as fast as it can through his itsy bitsy 3mm shunt into his lungs. He turned bright blue and was completely wiped out. I had to explain to them that when we can see blue, not only is his skin blue, but his brain, liver, kidney’s etcetera are not getting the oxygen they need. They understood, and we told them that we weren’t going to allow him to turn blue for fourth time today. This was really hard for us to see because Lucas has not been changing colors at home, he actually has been as happy and content as ever. This is just yet another sign that he is ready for his next surgery. We weren’t going to allow this again, so the NP agreed to let them draw the labs after Lucas is under anesthesia for his cath tomorrow. In the future I hope this can just be an option from the start because it is good for no one to have Lucas turn these colors.

He is set to have his first heart cath tomorrow afternoon. We are quite nervous as again he has to go under anesthesia and be intubated. Although this cath is intended to be purely diagnostic for his Glenn procudure, there are always risks. Please keep Lucas in your thoughts and prayers, we will update as we can. For now, our little guy is sleeping tight. We hope to know more about his results as well as a new date for his Glenn very soon!