Giovanni woke up several times last night for mom requiring oxygen once, more pain medication, and a few diaper changes. He's still laboring to breath, chest heaving and rapid, and battling a fever, which is now 101. A new antibiotic was added last night.
Giovanni broke his fever midmorning but still has an infection. As a matter of fact, mom had him smiling and kicking when she sung him the Puck Puck song and he later sat in his swing watching movies.
He fought sleep all day, his pain meds were increased again, his breathing is still hard requiring more oxygen today, and he's having a tough time purging the mucositis from his respiratory tract, which is why he laboring to breath. Day +10 was terrifying, day +11 is better, but Giovanni still looks weak and you can see he's suffering from the mucositis. He's really fighting now and you can see it when he looks at you. He's almost pleading for help but its seems like he knows you can't help him and he must overcome himself. Its a terrible thing to watch. Day +11 is gone and Day +12 here. Hopefully he will improve as we approach +15.
March 31, 2007
Saving Giovanni Day +10
The morning began with alarm when Giovanni registered a 102.2 fever. His chest heaving as he tried to cough up mucus, struggling, ozzing from the corners of his lips I wiped it away with napkins soaked in Dasani water--the only water he can drink or be wiped with because its filtered. As I held Giovanni he looked up at me pleading his eyes just stabbing me in the heart. The doctors came in and think the central line may be infected again and need removal. At this point in the transplant process a medical procedure is not welcome, but if needed it must be done.
At this moment Giovanni is being treated with antibiotics, Tylenol for the fever, and he's being closely monitored. His vitals are all good but his chest is heaving too much for my comfort. He simply looks uncomfortable, weak, and helpless... A grown man having survived 17 1/2 years of hell through the bowels of two prison systems and I'm scared for my son's life. I'd beg on my hands and knees,sell my soul, any and every temporal possession I own to take his place if anyone could deliver me there.
Giovanni broke the fever, its down to 98. He's still laboring to purge the mucositis from his throat and heaving as he breathes, his bottom is still broken down and sore, but the alarms within Christina and I have silenced. This is the true horror of the transplant process day to day. You wait in a state of unknown, uncertainty, an unsettling fear that engulfs your entire being and preoccupies your every thought hoping there's no changes and then enter a state of shaking terror that crawls over your entire body upon the delivery of any news that can lead of culminate in fatality. Your mind racing through a multitude of scenarios you endeavor to weigh and reason to attain a semblance of selfish relief from your fear.
I keep getting up from the computer and walking to Giovanni looking at him as labors to breath and ever so often he opens his eyes looking up having caught me in worry. The doctors are concerned with his breathing and have ordered an x-ray. His fever is climbing again, now he's crying. I must go for now.
Giovanni is free of fever, his chest x-ray is clear, and the blood test shows his blood is adequately oxygenated. His vitals are stable and a blood cultures was drawn but it will take 24 hours before we know if there's an infection. Giovanni is having a rough time purging the mucositis from his system, he is suffering, The pain meds are coming more frequently but he's fighting them to stay a wake. I rubbed his head until he allowed the drugs to overcome him and allow him to rest.
Mom is with Giovanni and me now and he's resting comfortably in her arms. He knows and loves his momma even through a drug induced fog. I'll report the blood culture as soon as we know. Day +10 is one of the toughest day's Giovanni has had so far, day +11 is coming.
Giovanni has spiked another fever, 101.2, and his blood culture came back positive for a gram positive infection, which is not as serious as his previous gram negative infection requiring the immediate removal of his central line. Nonetheless, new antibiotics were started, his breathing is still rapid, almost a heaving of the chest with deep retractions in the diaphram. He is putting up a serious fight and even though barely lucid given the degree of pain medication he periodically opens his eyes recognizing Christina and I and finds comfort in our arms. The doctors are monitoring Giovanni vigilantly and are ready to take whatever measures they must to combat his symptoms. And as for the nursing and CNA staff at Childrens Hospital and the Specialized 6 West Transplant Unit the care is simply remarkable. We are now in day +11.
March 30, 2007
Saving Giovanni Day +9
Giovanni slept all night for dad. But he woke up crying. Rushing to his bedside I lifted him out of his crib and quickly sat down in the rocking chair to rock him only to feel this familiar warm sensation on my hand when lifting him to see I was holding his spoiled bum. Damn, I said to myself, your crapping all over me this week but I still love ya. Reminds me of the construction business, which I'm no longer in--lost my business this week after five months of neglect but knew I would at some point when prioritizing Giovanni over business. No worries, I can always start another business but I can't get another Giovanni.
Giovanni's vitals are all good: no fever, blood pressure is great, labs are all clear, and he's lost less then a pound through this entire transplant process which is phenomenal. His weight is only down to 10.10 oz, from 11.6 when the process started. His bum is broken down badly from the mucositis, but we are keeping a close eye on it and being very generous with the Triple Paste--which is great. He also had a nice bath to soothe his butt.
Giovanni is still coughing up mucus, but overall the kid is doing great. He's sleeping a lot to deal with the pain but I'm seeing life through rose colored glasses and Giovanni parties to thank the thousands of people supporting him. He's the poster boy of this international movement to fill the International Registry with as many life-saving bone marrow donors as we can.
March 29, 2007
Saving Giovanni Day +8
Last night was restless for Giovanni. He got up several times for Grandma to be changed and in need of further pain medication. At times not even holding him will give him the comfort he needs. Day +9 is approaching and we hope to move through this period as quickly as possible. His blood pressure is under control, no VOD sightings, and the mucocitis although present has yet to hit the severe stage. He is still doing remarkably well when compared to other children at the same stage.
We are happy or at least relieved that he is sleeping most of the time. Today, however, I held Giovanni and it was simply moving. Just holding him in my arms and feeling the warm glow traverse my body is intoxicating. As I sat holding him rocking in a chair I fell asleep. To hold and love your child is just so priceless, so, rewarding, so unexplainable in words. It frustrates me that my advanced higher education leaves me incapable of finding the necessary words to articulate how I feel for my child and how he's enriched my life more than any single experience I know. Maybe those feelings are love, that which in truely undefinable by words but recognized in emotion, feelings, in those physiological sensations that bathe ones body as they hold there own creation.
March 28, 2007
Saving Giovanni Day +7
Giovanni slept through the night, but his blood pressure is up, as well as his pain. He now has a morphine drip and no hair. And at times not even mom can't console Giovanni. We were told Giovanni would suffer from day +7 through +14.
Giovanni was awake and lucid for a while this morning, no smiles, but somewhat playful until the pain struck again and he was medicated. He later awoke pain free and enjoyed some afternoon physical therapy with Kristen.
As the afternoon pasted Giovanni's blood pressure continued to increase, as did his pain. He now has a medication patch to decrease his blood pressure and his pain medication is allowing Giovanni to sleep through much of his suffering. Over the next 7 days we hope he sleeps as much as possible because there is no pain as great as that of watching your child suffer and standing there helpless and incapable of comforting him.
March 27, 2007
Saving Giovanni Day +6
Giovanni's pain is increasing and so is his pain medication allowing him to sleep in comfort. His liver enzymes were up today and his liver is swollen from all the chemo drugs his liver has detoxified and his blood vessels are dehydrated.
The doctors are concerned that Giovanni may be getting veno occlusive disease (VOD), of the liver, an uncommon complication following bone marrow transplantation thought to arise because of a nonspecific vasculitis arising in response to an inflammatory challenge, such as a BMT conditioning regimen. It presents with increasing weight gain, liver size, and elevation in total and direct bilirubin, as well as levels of alkaline phosphatase and gamma-glutamyltransferase (GGT).
The diagnostic finding on ultrasonography is reversal of flow in the portal and hepatic veins. Other findings on ultrasonography include ascites, decreased flow in the veins, and hepatomegaly. Ultrasonography is a powerful tool for confirming diagnosis, but classical findings are often late in the course or not always apparent; thus, it should not be relied upon to eliminate this diagnosis in the face of other evidence that would support it. A critical aspect of this disease is that, once it occurs, the chances for other systems to fail increase dramatically, and potentially fatal multiorgan system failure may occur.
Preliminary test show no signs. The doctors are being vigilent and engaging preventive medicine: Giovanni is getting platletts and blood to hydrate his blood vessels and push the toxins through his liver. It appears Giovanni may have overcome another difficulty, but further time will prove this belief.
He is becoming increasingly more uncomfortable, almost all of his hair is gone, yet he stills finds the strength to play a little with mom and dad. And while Aunt Rosie was reading him a book he slapped each page as she turned them. Day +7 is here and as predicted Giovanni is suffering further.
March 26, 2007
Saving Giovanni Day +5
First thing in the moring we called Aunt Rosie and she reported that Giovanni got up once during the night to be changed but was otherwise sleeping. She talked about how good Giovanni was for her all evening and in a shocking tone slowed stating he shot poop out of his bum all over me, the bed, and the floor. Christina and I laughed. He blessed you, I said. (I know that feeling)
Christina and I spent the afternoon with Giovanni and Aunt Rosie. He slept most of the time but when he woke he talked up a storm rolling around the crib and actually getting loud. He had a lot of strength. His smiles are still far and few between but the ones he gives are priceless.
Giovanni is starting to show the first sores of mucositis. There is a site in his mouth and his lips are turning white. More of his hair is falling out, and the doctors are planning to increase his pain medication. Over the next 10 days Giovanni will suffer the buring results of the chemo. We hate to see him suffer, he is sleeping for the most part, but the pain is more acceptable than the alternative. Giovanni has won another day...
As we sat down to eat I recieved a call from our Private Investigator Brian Blackden who informed me he had a tip on the thief who stole Giovanni's donations. He asked me if I wanted to take a ride to which I replied yes. I pushed myself from the table explaining to Christina I had to go whom objected not wanting me to get hurt but I need to defend my son's honor and for the good of society make this guy the social pariah he is. Because he only committed a misdeameanor the police can do little to him.
Our first stop was the Lawrence PD so Brian could announce he was in the area looking for a wanted suspect. We then proceeded to the rooming house where the suspect supposedly lives and spoke to the management who said the picture looked like a guy in room one. We went up the stairs and I banged on the door. From behind the door we heard:
Who is it.
Baby Giovanni, I said
Who?
Baby Giovanni.
I'm sleeping.
Open the door, I yelled
When he opened the door I shoved Giovanni's picture in his face and said "you know this baby" to which he replied "no." I said "you steal his money," "No". I held the wanted poster in front of him saying "this is you, This is you," no he pleaded. The picture was a spitting image of this guy but he just didn't seem the type of person who would have the disposition. Such a person would have been more aggressive or even defesnive with me. He uncomfortably looked at the ground, not at me, and I said "I have a witness down stairs, will you meet the witness, get the witness." Yes, He said. Brian asked "can we take a picture of you." "Yes," he said. We took the picture of him and left his room.
Down stairs the management called the Lawrence police to see if they could make a report and while doing so the management faxed the poster to there other rooming house of the same name, Valley Lodge, that reported another person fit the picture and was a heroin addict. The police said they couldn't do anything and even if we had a NH warrant they could not arrest him nor would a court send him back to NH for a misdeameanor. It was true.
I was standing there with these police officers and they were sympathetic to baby Giovanni but there was nothing they could do. I immediately regressed to a mentality of days gone by and thought of exacting some street justice. No, I can't do that I answered myself. Yes, you can I retorted. No, no, can't do it. Yes, no.
After talking we felt the guy didn't seem the type to pull off the scam so we went to the other rooming house. We met the management who said the guy was a friend of Freddy who was thrown out of the place. I asked if anyone else would know his name and they said a few other tenants might. The first guy said he didn't recognize the picture and the second wouldn't open his door. As we went down the halls a girl turned the hall and the manager called her. She was scared to talk--it was all over the neighborhood we were looking for this guy.
I can't tell you. No, I can't get involved he'll kill me. The polcie are after him for molesting a littel girl. He's a bad ass.
Come here, I'm not a cop. Tell me what you know.
No, no one can see me. If anyone sees me talking to you they'll call me a rat and kick my ass here. I wont be able to live here.
Come in here and talk to us the manager said.
I put a 50$ bill in her hand, the manager told her he would let her stay there another night. She told us the guy was a weight lifter, a bad ass, named Roberto Santos Jr, but the office records showed a photo ID of Jonnie S. Silvera. She knew where he lived but not the name of the streets and drew I map for us. I asked her if he was a junkie and a booster--a junkie who supports his habit by stealing--and she said "yes, he so smoothe he could talk a dog off a meat wagon." That's the guy I said to myself.
"Do you know where he is?" She began to cry stating he'll kill me, and I said no he'll never find out. I gave her another $20. "He's at the bar around the corner."
We left the rooming house and went to the bar. I took off my jacket, pumped, and walked into a neighborhood Spanish bar I had no business in like I owned it and every head turned. I walked the entire length of the bar looking at every person to see if he was there passing each table as the heads turned following me from one end back to the other. Brian and his partner stood by the door to watch my back, this was my beef, my son. Everyone looking I walked to the center of the bar holding up Giovanni's picture and the wanted poster. "Anyone in here know this guy, he stole from this baby. my baby. I'm no cop, I'm the baby's father, and I want this man. DO you know who he is. I have $4000 for anyone who brings me to him."
First the ladies came to me looking at the picture, then some men, fathers, and they all said no. Many of the people owned local businesses and asked for the poster to hang in there store. I thanked everyone, told them if they knew him or found out who he was to call America's Most Wanted tip line 1-800-CRIME-TV.
In the morning Brian will contact Sheriff DiPaloa who has jurisdiction in Massachusetts and give him the information we developed. The Sheriff and his men will find the guy soon. Watch.
Getting home at 12:30 I got on the computer and made my journal entries for Giovanni. It's now 2:38 am. I'm going to bed. In the morning I'll drive mom to the hospital and stay wth Giovanni for a while. Bring Aunt Rosie back to Concord, NH, and proceed to the bone marrow drive at Plymouth State University from 1 to 8. Then I'll return to Boston to see Baby Giovanni and tell him how many people he inspired to join the registry and hopefully save a kids life.
March 25, 2007
Saving Giovanni: Day +4
Before I could settle in with Giovanni for the night I had to bring Mom and Grandma back to NH and then return to the hospital. As you all know it was snowing out--hard--and the ride was long and slow. When I finally got back to the hospital I walked in and upon seeing my sleeping baby boy Giovanni so peaceful I filled with pride and joy, as we all do when seeing our children. I slowly walked to his crib and lowered the rail so I could kiss Giovanni on his cheek and lay my head on his chest to fill myself with his love and reap his calming sensation. When I hug him and hold him close to me its just intoxicating. He fills me and I lay him back to rest.
He slept well all night and I awoke to his groans of pain. I jumped from the bed and stepped to his side lowering the rail and scooping him up to my chest I soothed him. Restless I laid him down to check his diaper. It was wet so I went about changing him. The drugs he is on give him gas and diarrhea. As soon as I pulled down the diaper and folded it under him and began to clean him he quieted. Giovanni does not like a wet bum. Reaching over to get some Triple Paste--Giovanni's legs in the air--I returned as he pushed a stream of green crap all over my shirt and sweat pants. I don't know how the rest of you act when pooed upon but I smiled saying to Giovanni: "If anyone else did that to me I'd have to kick their ass, but I'm gonna give you a pass because I love ya."
After changing Giovanni and putting a new outfit on I laid him down and gave him his binky. He went back to sleep. He is sleeping a lot because the drugs and undoubtedly the trauma he's suffered durng the chemo process.
Grandma and mom arrived about 9:30am and I left for St. Athanasius Greek Church in Arlington for a Giovanni Bone Marrow drive where we put 122 new life saving bone marrow donors in the registry. Christina left threafter and proceeded back to New Hampshire to attend the St Anselm College Wiffle Ball Tounament and Bone Marrow Drive where they added 196-life-saving bone marrow donors to the registry.
After her drive Christina returned to the hospital with Aunt Rosie and I met her there. We all stayed with Giovanni for several hours holding him, talking to him, listening to him talk to us, and getting some smiles out of him. One more day of success.
March 24, 2007
Saving Giovanni: Day +3
Giovanni is eight-months-old today. He slept well all night for moma and upon waking immediately sought comfort in her the arms. He's a hug-a-holic and most assuredly deserves all such attention. Giovanni's pain was moderate today and he received several doses of morphine. He was animated and smiling, kicking his feet and cooing. The mucositis has yet to fully set in, but his mouth is starting to show signs of swelling and white discoloration. He's also gagging trying to push the itch and ulcers from his digestive and respiratory tracts. He needed oxygen several times today when he fell into deep states of sleep while sedated by morphine.
He is, however, still handling things well. The nurses who take care of the transplant kids of 6 West are a wealth of knowledge and as attentive as a mother to child. We're told the mucositis will be at its worse between +7 to +14 days post transplant. Thus, Giovanni still has his fight with the mucositis stage as well as the cell grafting process. He's very calmed by the attention of me or Christina, especially her. When I comfort him he appears to look at me in aderation and draw strength from me when in reality he's my strength and fuels each step of my day. When looking at Christina his eyes and manner relax in a state of tranquility and he melts into her arms.
For a child of eight months he has such personality. He conveys his disposition or condition with the look of an eye, a smile, a calming coo, the feel or slap of a hand, a stare or gleam of the eye, kicking his feet, the roll of his body or the throw of a shoulder. He's talking through body language. He knows pain and that his cry brings attention and comfort; joy in that his smile brings laughter and smiles in return.
A baby is a remarkable gift, which one cannot realize until that first minute when your child is passed into your arms and your body fills with a sensation that traverses your entire being in a warmth that bursts glowing smile on your face. Its the most powerful intoxicant one can feel--creating life. Indeed, the best gift I have or anyone will receive in life.
We put 293-life-saving bone marrow donors in the registry today in Giovanni's name and know in time the work in his stead will give the gift of life to many children who deserve life and the parents who deserve to bask in the glory of their child. Thank you everyone for poured into the bone marrow drives in hopes of saving a child: The most altruistic and noble thing one could possibly be honored to do in life.
March 23, 2007
Saving Giovanni: Day +2
Giovanni actually rested well last night and woke up kicking and with a smile. It was wonderful to see. He's battling the side-effects of the chemo like a champ. His strength is simply remarkable. The mucositis has yet to fully impact, but were hoping that Giovanni will not get it severely. He's covered in rashes now, but the doctors feel its from medication and not the transplant. Rashes are the indicator of rejection or graft versus host disease. These are the terrors of the transplant process that you much face each day as the physiology of the body takes its natural course.
I can't express how honored I am to have Giovanni as my son. His strength is just phenomenal. This kid has lived in a hospital since November 7 enduring lumbar taps, hundrens of IV, blood draws, heal sticks, and the worse I witnessed was an arterial stick, which was a needle sunk into his wrist that intends to hit the pulse in your wrist. It's a blind stick. The doctor has to move the needle around to puncture the artery. I've watched Giovanni get an IV and not even cry, he's so assimilated to pain, but when I watched a needle sink over a half inch in his wrist and him scream in pain it killed me. But more amazingly, after the doctors sunk the needle and he screamed he then stopped as they were moving the needle around in his wrist feeling for the artery. It took three attempts before they were able to get the blood. It was the most painful thing I've witnessed him endure from a procedure, and only he can attest to the internal pains he's suffered.
Before the day ended, Giovanni had a bath. All this kid has been through and well sitting in the tub a big smile broke out across his face. With that note, I'll end the entry for day +2.
March 22, 2007
Saving Giovanni: Day + 1
Giovanni slept well for Grandma last night, but the moring is bringing difficulties. Mucositis is developing in Giovanni's mouth and airways thus reducing his air intake requiring as oxygen mask near his face. His pain level is also increasing as is the morphine he needs to remain comfortable. In the next few weeks Giovanni will struggle in his fight to graft and live. At the same time Christina and I feel like we are on that first hill of the roller coaster, the steepest one that instill the most terror and we can't get off.
We are, I guess, in an internal state of terror facing the unknown and waiting each minute, each hour, each day for good news while simultaneously conscious that any call, knock on the door, or even Giovanni's conidtion as we watch him could turn for the worse and even be fatal. It's a terrible feeling. I can't articulate it any better, just horrifying: the unknown.
Today my son, our son, suffered. Nothing could consule him. I leaned over him and cupped his head in my arms, cradled him, layed my forhead against his forehhead, his cheeks, which would comfort him for a minute but end in his pain. I leaned over him looking, wondering why, just loving this little being, my orffsprint, beneath me suffering for no apparent reason. Why do I pity, why do I question, why should I seek consolance when my son--our son--lies suffering and I still persist on trying to reason why. Many people fall back to their faith believing God has a reason, why. What reason could any God have to allow a child to suffer for no reason of its own. The child not have lived--committed not sins, so why. I cannot rationalize why.
March 21, 2007
Saving Giovanni: Day 10
The struggle for life begins
Giovanni slept well for Mom last night waking only once. This morning we're seeing the first signs of rashes breaking out around his body on his stomach, legs, and butt, and his lips are getting white from mucositis. Over the next two weeks Giovanni will worsen requiring morphine to dull his pain. He is currently being hydrated in preperation for the cord blood transfusion.
The cord blood is a 5 out of 6 match and blood type O-, like Giovanni's. These are all good indicators. One advantage of cord blood over bone marrow is less graft versus host disease. On the other hand, there is no prebuild immune system with cord while there is with marrow.
After the transplant, Giovanni will face new life challenges: The most significant problem in the cord blood or stem cell transplantation is graft versus host disease (GVHD). It occurs because the donor's immune system (graft) identifies your cells or in the case Giovanni's (the host) as foreign or different and attacks them, causing skin rash, redness, gastrointestinal upset, and abnormal liver tests. These problems progress to blistering and loss of skin, liver failure, chronic diarrhea and gastrointestinal bleeding and may be fatal. The acute form of GVHD may appear from one week to 3 months from transplant, and can progress into chronic GVHD characterized by skin, liver and intestinal problems as well as other debilitating complications. In the most extreme cases, they include skin tightening and contraction, liver failure, chronic diarrhea, breathing problems, poor bone marrow function and increased rates of infection. Chronic GVHD is most likely to arise after 3 months but during the first year after transplant. It can ocurr or worsen even later than 1 year.
Between 12:30pm and 2:30pm Giovanni received his cord blood transplant--a shot of life. It was both climactic and uneventful in that is was a simple blood drip. I'm conflicted over the whole process. On one hand it can save his life, on the other kill him. But without the cord or marrow he would most certainly die. I guess I feel...helpless. Filled with a sense of terror lasting six weeks as they draw blood each day looking for blood counts to register indicating graft or the replication of new cells. Three sucessful labs showing a 500 or better t-cell count is considered a success.
Giovanni looks drained. He's uncomfortable and under morphine. Grandma is with him right now. His smiles are now few and far between. His strength sapped from the course of drugs that ran through his tiny body over the last 10 days. I can remember as I held him he just melted in my arms--drawing comfort from me--and I just held him to my chest as closely as possible trying to hold him as tightly as possible without hurting him so he could feel my love, strength and hope for him. This is just horrific--and I feel selfish for its my son whom is suffering and struggling for life and I seek comfort, or is it hope, as answers to the unknown that faces us, him. I can't but feel my son is paying for the sins of the father, me, why my son. Why anyone's?