Monday, Aug 2

When I arrived to hospital I saw that his blood transfusion was under way. I saw the plasma hanging from his IV pole entering arm IV. Okay, now I knew what a transfusion LOOKED like. Just whatever bag of blood "characteristic" needed is hung from there and pumped into his IV. Plasma would take about 40 min. or more. We waited. Soon my fav guy walked in: Belmonte! He was checking in on his lil guy. He joked he felt out of the loop. When he went on his computer that am he had to SEARCH Grayson down bc he is no longer on his quick access accounts. He really wanted to see how he was doing. He even asked about T n C. C was due for another weight check in a few days. He told me he would do whatever he needed to make that visit easier for me. I explained that Tn C were w my parents n I would just bring C w me into the hospital on Thursday. He even offered to have one of his nurses weigh him in our room so I wouldnt have to take a trip downstairs to his department. Isnt he great?! We agreed I would call his nurse that morning and tell her what my plan of action was. God, I love that man! I was crying when he walked in (feeling so guilty that I was pretty sure I had to stop breastfeeding. It was too difficult. I just couldnt pump in private in the hospital w so many interruptions and I was in so much pain. My milk production was so poor. It didnt even look healthy. How could I feed that to my 7 day old?! The guilt subsided when I told Belmonte and he reminded me I needed to do what was necessary. At least Caden had received the colostrum and that was most important. I could not stress myself out more than what was already being forced upon me) and then I cried more when he left...happy tears that time bc we had Belmonte in our lives. A man that had to deliver such terrible news to us but still kept us in his thoughts and remained committed to my other 2 boys. How lucky we are.

But before I knew it the rush of the day began to take place. He needed a platelet transfusion by 9 am. They also shared that he was at risk for clotting issues (slow to clot so could continue to bleed or bruise easier-hence the needed platelets). At 11:30 he received ultrasounds of his heart, lungs, neck, nodes, and abdomen (he screamed the whole time). And his first dose of steroids (Prednisone). Vital check again at noon. The bone marrow was supposed to start at 10 am. Everything else held this up. It finally began at 1:30. Dr. Kwon let us hang out a bit before the procedure. We moved to PICU and got underway. They explained they would provide him meds to sedate him. They explained that they would maneuver his body into a C-shape to access his spine and hip bone to obtain bone marrow. He was to have spinal fluid n bone marrow removed to see several things:

• leukemic cells live in bone marrow. we needed that to determine the type of leukemia. That would also tell them how many blasts (leukemic cells are occupying that system).




• spinal tap would determine if leukemic cells have entered his spine thus traveling to his brain and the rest of his central nervous system. Obviously not good.




• and while they were doing the spinal tap they were to administer his first chemo type drug into his spine. Methotrexate.

I knew this was all necessary but to see my baby boy in that quiet state was scary. They let us stay til "he fell asleep". I walked out then, I really wanted to see the whole procedure. I wanted to know how it worked beyond verbal descriptions. But as soon as they shooed us away (mostly Dr. Kwon-again he is a serious, meticulous man w no interruptions. I understood that) and we walked that hall to wait at some couches I cried again. I hated leaving him. A procedure a baby should not go thru. That "sleep" made me think he may not wake. That shuttered inside me.

Less than 20 min later Dr Kwon said he did fine. We could see him. It would take him a while to wake. Beware of emotional state, crabbies and tears. They did give him a drug to make him "not remember" he had even been thru it. They werent kidding. He woke up crying and wanted us to lie near him. He took awhile to calm down. Once he did Charito headed home for nap n shower. He never slept well in hospitals. At least in new tower we had a couch. To think w T n G's births he slept on chairs. He said he'd be back soon.

G just slept til the next interruption. At 3 pm they came in to administer the next dose of sedatives and administer a ECO. I was lying in bed w him when I was then met by the anesthesiologist that would be preparing his port procedure. Oh yeah it was time for that. I should mention that earlier that day the pediatric surgery team introduced themselves to us and explained protocol. Then they stepped out to the hallway to tell Dr. Kwon they didnt think the port could take place that day. Maybe not til Wednesday. I overheard all this bc they left the door open. Then I heard this quiet, serious, doctor raise his voice (which was not all that loud to any of us but considering his demeanor this had to be his LOUD) and tell them-"No, today. It is today. Get someone in to do it if you have to. That boy is high risk and for clotting. I am not waiting". As odd as it was to overhear, I was glad I did. I needed to feel that feeling. The feeling that we were not the only ones fighting.

It was almost 4 pm. I was still in bed w G when the whole ped surgery team (expcept the surgeon performing the duty) arrived. They told me I could come with. I could stay in the bed as they rolled us down. Okay, sure. So, we lied there as we were courted down to the OR ( believe me at the time I could not grasp the urgency or significance of this whole ride to OR. I realize now I didnt fully understand the implantation of the port. I thought it was as simple as the recent bone marrow n tap). We were on some lower level. They asked me to put scrubs on so I can be there til he "fell asleep". The ped surgeon (a tiny older lady) approached me to sign consent. She explained to me that even tho a port was being requested if she could not access that major artery due to his small size she would have to install a main line (that would mean an IV tube hanging outside his collar bone at all times). I nodded. What was I to say. It was Dr. Kwon who gave the directions and here she was telling me that may not happen. How was I gonna be cautious enuf to care for his dangers when he had this thing hanging out of his body. He plays ruff all the time, how was I gonna do this?

Then she continued with the warnings. During this surgery (there was that word-I didnt realize it was an actual surgery. Did I not accept that word when it was said to us earlier? This was his FIRST surgery! What! How come no one told me! My mind started jumbling w how much had been thrown at me in the past 48 hrs. I was missing a piece. Clearly my fault. My fog) there is always risk of heart failure, siezures and collapsed lungs. What?!! On the table? I couldnt swallow. I looked at the anesthesiolgist (she had been so kind when we first met and in our short ride down to the PED OR we realized all of our kids were days apart in bdays. She was my newest "few-minutes friend". She could tell I was scared. She nodded n winked at me. I took a breath. I mean, its not like I wasnt gonna sign the consent knowing that info but it still took me off guard. Of course, I was gonna sign it. It was this contraption that was gonna save my guys life, right? They told me I could stay til he "fell asleep" and then had to wait in the surgery waiting room on the main level of hospital. As I signed I remember thinking-Bring my baby back to me, please.

We walked into what was a mini operating room. So tiny. Really meant for tinies like my guy. I saw the tools layed out. The told me to hold his hand. He just looked so tired from the bit of sedative they gave upstairs. He had no idea where he was or what was about to be done to him. I realize now neither did I. I did not fully understand the step by step procedures. I wish I had looked at the link above to help me see it all. It was not until I mentioned to Ahram (the Child-life specialist ) days later that I felt I didnt get the whole pic of the port that she brought one to me and showed me what it looks like under his skin. Then I got it. Then they injected more sedative into his IV. He closed his eyes. I kissed his forehead and was escorted out.

We scrambled thru hallways which led me to the waiting room I would told to remain in. It would take an hour or so. I sat down and noticed I didnt have my phone. I whole 2 hours had gone by and what if Charito was trying to call me upstairs. He had no clue the port was being worked on right now. I got nervous. A lady pointed me to the house phone and I called him to inform him. I woke him from his nap. He said he'd be there in a bit. I hung up the phone and just prayed G was alright. It truly was the longest hour + in my life. The ped surgeon walked in and sat down next to me. She told me he did great and he was headed up to PICU. I could go back up n see him. Another sigh of relief.

When I got back to our room he was just lying there. Our nurse stayed nearby. I crawled into bed with him. She warned me again of how upset he may be when he wakes. He didnt come out of it til 6:30pm. He was a mess. Asking for me but not realizing I was right near him. Constantly changing his mind about a drink, movie, or other request. He was so confused and tired. He would whine then scream then fall asleep. A repetitive pattern for about an hour.

The kidney specialist stopped by again. He stated he had no concerns yet. They were pumping his IV w a diuretic and fluids to cut the uric acid build up in his kidneys to make sure they would not be compromised. No joke. We were changing his diaper every 40 minutes, the kind that is seconds from exploding that yucky diaper film everywhere. But it needed to happen.

By now it was dinner time and time for me to head home. We decided that evenings when nothing was going to go on Charito and his mom (Charito did not feel comfy staying there alone. He hates hospitals) would take nite duty and I would be w C n T and some sort of time w my fam before they headed home that weekend. I still wanted to try my best to be w them seeing as the last time I saw them was January. I kissed my baby boy good nite, my hubby and drove out. It was a draining day. But I could not wait to see my other 2 boys. I needed them as much as they needed me.

His port after surgery. See the tube that is hanging below the bandaids...that is an extending tube nurses apply for access to his fluids. It rested below his belly button so now anytime anything was getting pumped into him it was next to his body instead of someone digging at some IV in his arm. Now all fluids, future chemo and whatever else is pumped directly to main artery near his heart and spreads quicker into his bloodstream via "main highways" of circulatory system.