Sunday, February 20, 2011

Jan 30- Feb 6

We were getting ready for the big day, the day you would finally get your surgery. A doctor came in to talk to me and told me a doctor named Daniel Bethencourt would be the one doing your surgery. I was anxious to meet this man. I had so many question written down for him he was probably going to flip. But I needed to make sure and be ready for any outcome although I was aware of the risks. On Jan 30 I knew we were getting close because they scheduled my first meeting with Bethencourt. As soon as I went home that night I started researching about this surgeon. I wanted to know all I could know about him. Where he went to school, where he graduated from, how reputable he was...EVERYTHING. I came home and found out the following through his website www.

Daniel M Bethencourt, M.D., F.A.C.S.

Pre-Medical Education

Massachusetts Institute of Technology (MIT) 1975

Medical School

Yale Medical School 1979


General Surgery
University of Texas, Houston, 1979-1984
Cardio-Thoracic Surgery
University of California, Los Angeles, 1984-1987


American Board of Thoracic Surgery


American College of Surgeons
American College of Chest Physicians

That night was My baby shower. It was held at my Sister in Laws house, It was a great baby shower and I got so many nice things. It was nice that Louis's grandmother had came by, for the first time The Morales And the Quevedo family was all reunited. Due to some fucker stealing my camera that day, I have very little pictures of that day. He is clearly going to hell though.

The following day I looked and found so many great things about him, But nothing about operating on such a tiny baby. I mean he went to MIT and graduated from Yale but did that mean he could save my baby? We were going to fnd out. The Next morning he had scheduled to meet me at 11. I skiped work and decided I would take time to spend with my boy in the early morning. I had called in the morning to get an update and everything was going great. Mason was still toleraring feeds and was in a good mood, she even said I could possibly hold him if I wanted to. I got their around 9 am and spend time reading to my boy and taking lots of pictures. He was in such a good mood and I happened to have got one of the best pictures I have ever gotten of Mason. He kept smiling although he was still feeling a little sick. His CBC from that morning looked alright and he was almost done with his course of antibiotics. These were the pictures of that morning.

Dr ad asked me to meet him at Masons bed side so before I knew it, it was around 11:30 and he had not arrived. I asked the nurse that we had an appointment at 11 and that it had been past 30 minutes so if she could see what was going on and if he was still going to make it. She called and they informed her he had got caught up in a surgery but that he was on his way. Then nurse had previously told me that doctors were ALWAYS late. I never thought this was true until today, lol he showed up at like 5 to 12 and he apologized for the delay. He introduced herself and so did I, I asked him all my questions and he was VERY good about answering them and telling me the truth, I trusted him right off the bat, I knew he was the right person to do this surgery, How did I know?? I have no clue but he made me feel safe which is what I wanted in the end. Then he proceeded to tell me he would do surgery the following morning. My heart sank a little, does this mean I might loose my baby tommorow? If Mason did not survive this surgery this would be the last day I would spend with him. I wont lie I had a mini panic attack but he assured me he would try his best and that more than likely everything would be ok. I immediately called Louis and told him the news and we both agreed to spend the night before with him.I spent the whole night talking to Mason, I held him and told him he needed to be strong for momy and daddy. I could not bare the thought that thy would open him up and work on his tiny little heart but it was something that needed to be done. We kissed him so much that night, In a sence it felt like goodbyes and I cried before leaving him. I just wish I could camp by and sleep next to him...Just this one night. But we both needed our rest. It was the big Day tommorow and he was going to get transferred to the PICU at around 1am.

He was scheduled to go in at 8am. I woke up arond 6 got ready and headed to Long Beach. I went upstairs while Louis got some breakfast and ate it downsairs. I checked in and went up to the PICU...this was my first time ever at the PICU and it was much different that the NICU, he was with older kids. Some even around 14 or 15 years of age and that was weird since he had been sorrounded by babies this whole time. To my surprise Jenna showed up!!!! She was heaven sent! she had switched a shift so that she could be here for his surgery, not only would she help with recovery but she would be with him throughout his ENTIRE surgery which gave me so much peace of mind too. Mason had already been through a surgery before so the thought of him not waking up from Anesthesia was not wha scared me. It was them slicing him open on his side and opening him up to expose his tiny heart.Before we knew it I was walking with the Anesthesiologist, Jenna and the Respiratory therapist to the operating room. Although I could not be in surgery I could go all the way back to before the steril room was located to talk to the Anesthesiologist about any concerns I had. The chick was very subtle and told me that since he had a PICC line she would not need to poke him unless he required blood. We said our see you soon's and I kissed my baby boy goodbye
I had a major panic attack in the waiting room, I was so tired because I could not sleep the night before so I kept dosing off, thinking I was going to wake up and they were going to tell me my baby boy had died. I even had a little dream where that same scenario happened and I woke up panicked. It was the longest 2 hours of my entire life. Louis fell asleep as we waited too and I remember being awake for a while crying my eyes out thinking "How could he be asleep, she should be comforting me right now" But I managed on my own, Ask me how? I have no clue but I did. I walked up and down the cardiology unit, there was several people in the waiting room who were obviously waiting for there family members to also come out of surgery. This was when I lost it, a doctor came in and told a wife her husband had not made it. I ran to the bathroom and cried, as I was in the restroom I started feeling a little light headed. I sat on the toilet and calmed myself down a little and that is when out of the corner of my eye I saw like a foggy shadow, I quickly turned around and it was gone. I lost it once again thinking that might be Mason coming to say goodbye, I washed my face and in distraught went back out to the waiting room. About 5 minutes later Dr. Bethencourt walked in the room. My heart stopped and sank, he sat down and said everything went good (I started crying) He shook my hand and told me it was a though job and the thoughest part was closing his giant PDA but that he had gotten it done and it looked like it was good blood flow. My first question was can his coarc narrow again? He told me it was possible but very unlikely, but that when kids had this surgery so early on they were more than likely require a second surgery down the line. He told me he was gonna go close him up and that I can see him in the PICU where he would recover. I took a few breaths, and smiled and thanked God. Finally after 2 months of contemplating his surgery it was now over. We could finally move on, Me and Louis went downstairs to get something to drink and to call our parents while they finished everything up. Everyone was so relieved and thankful that all had gone alright. I then went back upstairs and waited for him. I wasn't prepared to see him like this...My poor baby, But I had to be strong for him

I stayed with him for the remainder of the day, PICU rules were a little different than NICU but I was managing. I made sure to have good contact with his nurses, he luckily got a really good nurse that was so positive with me. Mason had been put on dopamine and epinephrine again to help him regulate his blood pressure. I knew he was doing ok because he was still on the conventional ventilator and was not on a high frequency. I left that night around 10 because I was so tired. I told the nurse I would call throughout the night. Since PICU rules were different, anyone could visit without a parent. My dad stopped by after work and stayed with him till about 2am. I really appreciated that since it had been a really big day and I was tired aswell.  The next morning I went in to work and told them I would leave around 12. At around 9 am I got a call from his nurse telling me he wasn't doing so well, Its surreal to think how quick things can go right downhill. She told me he had stopped urinating and that his blood pressure was going downhill. I told her I was just gonna finish some things at work and leave straight over. About 30 minutes later I get another call saying I needed to give a phone consent because he was going back into surgery. I broke down at work and dropped everything. My boss was around and he told me to just leave, I literally raced to the hospital and called Louis on the way. I was once again in the same position I was the day before but now with even less faith, how can my baby go through being sliced open TWICE. I felt like dying I was once more seeing myself in this place.

I had said goodbye to this place and thought I wouldnt be back but here I was not even 24 hours later. This procedure didn't take as long as Bethencourt came out pretty quick. He saw me sobbing and he opened his arms and said "Good News" I swear I fell in love with the man! He explained that the Aorta had somehow narrowed itself back up, But that this time he had taken an artery and had repaired it with that. He also told me that due to lack of blood flow due to the Aorta narrowing and there being no more PDA for blood flow his kidneys shut down and he had gone into Kidney failure so he had to place a parotoneal dyalisis but he assured me they would eventually start backup once adequate flow started flowing. These had been the most stressing 2 days of my life. He told me he was very confident that this time it would not narrow down and he gave me a 95% success rate which I was very happy with. He told me he would close him up and sent him back to recovery. This time he was placed on an osscilator. A higher frequency ventilator, It was sorta like the jet but for bigger kids I suppose. He did ok that night and they slowly started decreasing his BP meds. He was not only recovering from an incision on his left side, but also had a tube draining all his urine in his stomach and a chest tube draining all the additional blood from the surgery. My baby boy was going through a lot. And it hurt me....It hurt me like hell. I was just praying it would go uphill from here. Although he was going through a lot my boy was recovering like a champ. I was so proud of him

The next few days were all recovery, but it was going good he was recovering well and by the 6th he was off all BP meds, and close to him having the dyalisis taken away, as well as his chest tube since it wasn't draining much anymore. By the 6th he was sent down to the NICU since he was recovering well. This eased my mind a little. I knew recovery would take some time but I was confident everything was going to be ok. This was Jan 30 through the 6th, the hardest days of my life..........Yet

Sunday, February 6, 2011


Mason was doing great, he was growing and getting so close to his surgery. I thought 1800 grams would never get here, remember he was only 850 when he was born but here he was getting oh so close. I had yet to talk to the surgeon who was going to to operate on him by the 22nd. I guess since it was still early and he was only about 1500 grams They wanted to wait until he got a little closer. I was still working and doing the night visits, Mason was actually getting pretty close on his vent settings to actually get extubated. I knew that wouldnt happen until after his surgery because he would be intubated for surgery anyways. By this point Mason was getting really good at extubating himself, He hated that tube and would pull it off any chance he got. He was also doing really good with his feedings and they were going up as he tolerated them. I was getting really nervous about the surgery that I was researching the internet most of my spare time. I couldn't really find much on a 3 kilo baby getting a coarc repair. I found a lot of stuff where babies didn't survive recovery which freaked me out so much. I know he needed this surgery and it was something that had to happen but he was doing so good. I wish I could of just gone through the surgery for him but reality was his little heart needed fixing and it needed it quick. by the 26th he was on 6ML of milk every 3 hours so he was getting a total of 40 ML a day which was a little more than an ounce plus TPN and lipids. They were lowering his calories and TPN intake as he progressed on his feeds. Jenna had informed me that he would be NPO for surgery and that after surgery they would more than likely restart his feeds from the beggining again which was a little frustrating because we had made so much progress but I guess they didn't want to push him after having such an invasive surgery as open heart surgery. By the 28th he was breathing room air which meant his ventilator was at 21% the whole time. He had also gotten an eye exam to check for ROP a condition that affected many preemies eye vision. Everything looked good and he wasnt scheduled for another eye exam for another month. It also terrified me that something could be wrong with Masons eyes and that he wouldnt be able to see. But luckily everything went good and the opthomologist was happy with his results. His lab results on the 26th were a little off his CBC was a little elevated so of course our first guess was infection. At this point I started hating hospitals for there nocosomial infections.He was started on vancomycin and  tobramycin while they sent cultures to see what grew back. He was still on a very high dose of fentanyl just to keep him comfortable while he was on the vent. We were also having a little problem with his blood gases, his CO2 was a little elavated so they gave him a bolus of bicarb to help with that. He did well throughout the night. His blood gases always seemed to go bad when an infection was setting in. At this point I had made it really clear to all the nurses that they should be really cautious. not only because he had a lot of lines but also a PICC line that could easily get infected and would have to be removed. Also to be diligent about being really steril when it was time for tube change as that could easily set of an infection on such a succeptible host like Mason. They obviously knew all that but a lot of the nurses didn't use all universal precautions and didn't follow the hospitals protocol as they should and if I ever witnessed it I made sure it was addressed. After all this was my babies life on the line. When I had visitors which at this point could only be parents and grandparents I would also be really careful they of course had to scrub before going in but they would have to sanitize their hands everytime they wanted to touch Mason. I had to be really anal about all of this but infection was not our best friend and he seemed to come all to very often when it wasn't invited!! He wasn't tolerating Lasix well so they switched him over to Diuril a less potent diuretic. Other than that he was doing well enough for me to hold him. I was trying to take advantage of him being well and me being able to hold him and cherishing every second because I did not know what could happen the day of surgery. I knew the risks we were taking and I wanted to make sure my baby knew he was very much loved. This was week 22-29 a week before surgery, I didn't know it at the time but at 1715 grams we were very close to the 1800 goal so I knew it would come soon, My baby boy was growing<3

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