May 30, 2007
Saving Giovanni +71
Giovanni had an all around good day. He acted like a baby: Ate, slept, played, cried some, and gave us a hard time going to sleep. One more day of May.
May 29, 2007
Saving Giovanni +70
Somewhere I've lost a day.
May 28, 2007
Saving Giovanni +69
Weight: 11.9 lbs, ANC: 3,610, Platelets: 189,000
You see those numbers up there? Yes, that's right: Giovanni is smokin' the numbers. He's doing so good we're down to two days a week at Dana Farber: Tuesday's and Friday's. And his immuno suppressant: cyclosporine was reduced from three times a day at .18 to two times a day at .22. This reduction is supposed to begin at the 90 day hurtle, which Giovanni is 20 days from.
I'd like to start jumping for joy right now, but I'm gonna stay cool so I can act like a complete ass when his two month old immune system is acting like a 10 month old immune system. Yep, your gonna see some fireworks soon.
Although his numbers are great so is his temper. The feeding tube he ripped out last night was repalced this morning and the doctors are considering a g-tube, which will go directly into his stomach. He was up on and off last night, and was held all the way to Dana Farber in the morning. On the way back he cried. We are looking into a car bed. He's fine when he's laying down but hates the car seat.
Day 70 is near and in less than three weeks, 20 days, Giovanni will hit his first 90 day hurtle: His central line will get pulled, his immuno suppresants will be further reduced as well as his other medication, and we hope to be down to 1 Dana Farber visit a week. Yes, life is good.
May 27, 2007
Saving Giovanni +68
Giovanni slept well again and enjoyed his first memorial day. Christina and I took him for a walk down the street and he enjoyed it very much. Back at the house he ate well, rested and played. He's starting to talk more and lounder. He was itching his eyes again and going through bouts or anger and crying. His skin is also peeling all over his body, which was a problem we were having before he transplant. Otherwise the day was quiet and we again did things around the home that have been neglected for the last 6 months.
Later in the evening Giovanni did it again. While the house was quiet and Christina and I were in the we heard a shriek from Giovanni's room. Christina beat me up the stairs and into Giovanni room where we found his feeding tube halfway out, somewhere in his throat, and Christina pulled it the rest of the way out as Giovanni screamed. He was in the middle of his nightly constant feed and had only digested 50cc.
He keeps itching his eyes, loosening the tape holding the tube in his nose, and then pulling the tube out. The doctors are giving us a number of possible reasons for his itching, allergies, his eye brows and lashes are coming him, but we think its because of the tube.
Christina is off to the hospital in the morning for another tube, possible a G-tube, and I'm off to work on a roof.
May 26, 2007
Saving Giovanni +67
Giovanni slept all night and enjoyed a walk down the street. He can't be exposed to the sun so we had to covered him with a hat, shirt, pants, and shoes. Mom got a break while I walked baby boy down the street. It was a quiet day. Giovanni slept, eat, drank, and played. We got things done around the house. Life is good.
May 25, 2007
Saving Giovanni +66
Weight: 11.27 lbs, ANC 3,430, Platelets 141,000
Giovanni slept all night for us and momma, baby, and grandma were out the door at 5:50 am while I statyed home to watch Adrian and Alex. Team Giovanni arrived at Dana Farber at 8:00 pm for a total 2 hour and 10 minute drive. After checking in Giovanni's blood was drawn at 9:30 am and at 10:10 am his new feeding tube was installed. Aunt Elena didn't like the way baby boy screamed during the placement and Grandma couldn't watch so she left the room.
After the tube was placed and an e-ray was taken to determine the tube was sitting correctly Giovanni and party returned to his room to an excited doctor ranting about Giovanni's 141,000 platelet count and how well Giovanni was doing post-transplant. Giovanni then received his weekly shot of epotin to increase his red blood cells, and an hour long IV of pentamidine, which prevents pneumonia.
Team Giovanni left the hospital by 12:00 pm and home by 2:30 pm despite holiday traffic. Once mom got home Giovanni--now dubbed Little Michael--wouldn't let mom put him down and when he did let her put him down if she walked away he lost control having a tantdrum until she returned to his side and gave him her undivided attention.
May 24, 2007
Saving Giovanni +65
Giovanni is 10 months old today
Giovanni was doing well for most of the day until around 1:00pm when he began intently itching his eyes and trying to pull his feeding tube. I had to hold him and restrain him for almost an hour while Christina was shoping. I was actually olding his hands down and he's pull away and quickly go for hie eys. I'd pull them away and he's start crying. He was suffering, but I couldn't let him go because he was going at his eyes like crazy. It was terrible. I couldn't help him, I was hurting him by not letting him itch. He was intently going for the feeding tube. Squirming around in my arms, pulling his hands free and darting around mine. He's fast. As soon as I'd grab one hand he'd get the other lose. Then when I was holding both of his hands he would scream, squirm, and try to wrench his body free. It was alarming and the minutes were going by like hours as I was hoping for Christina's fast return to help me.
When Christina came home she rushed over to me asking what was going on and I told her. She then took the baby from me and held him to her chest. He continued trying to scratch at his eyes and I had to go run an erand myself. While out I got a call from Christina. When Givannni settled down she put him in his bouncy seat. She turned her head for a minute and he pulled out his feeding tube.
That boy is one determined soul. I remember goinf onver to him when I got home and he was laying on the couch legs splayed open in total relaxation sucking on his binky and leaning over him I said: "Very good, your tenacious, determined, all essential traits to survinving and becoming successful in life." I could swear he was snickering at me. Christina called Dana Farber and they said just hydrate him s best as you can and feed him. But Christina felt we could never hydrate him enough through the remainder of the day and over night without the feedings tube and knowing the doctors would order hydratoin in the morning lasting for hours she would be stuck in four hours of traffic with all the vacationers heading north for the holiday weekend.
Christina instead called Concord Hospital where they know Giovanni well and asked if they could put in a feeding tube. They agreed and Christina was off to the hospital. While driving Dana Farber called Christina and asked her not to bring Giovanni to Concord Hospital because the risk of infection in the emergecy room was too high and a bad infection can kill Giovanni. The doctors told Christina they would be prepared to install a feeding tube in te morning when she arrived so Christina returned home.
May 23, 2007
Saving Giovanni +64
Weight: 11.2 lbs
Very very hectic day. Christina and I woke up late--we were both exhausted--and left for Boston at 7am. We got to Dana farber at 9:15: 2 hours and 15 minutes. We entered and after checking in were send to a private room where Giovanni is secluded from othes with potentially deadly germs. Giovanni's labs were taken--only a few things were tested--one being his cyclosporine level, which was high, potassium was down, and his other counts were good. We then left Dana Farber for an ultra sound at Children's scheduled for 10:50am. After half an hour a tech showed up to conduct the procedure and we were out of there by 12:30 with a clean bill of health for Giovanni.
We proceeded back to Dana Farber and checked out making it home in two hours for a grant total of four hours and fifteen minuted of travel time. Giovanni did well on the ride down, but on the way home began having a meltdown before we hit exit 35.
Once he was home he settled down. He intently watches his brothers, inventories the house, and enjoys his walks outside. When we put him down for the night we discovered the feeding pump was broke. So I had to manually put his formula in his feeding two throughout the night: 10:30, 12:30, 2:30, 5:30. Then we both slept on the couch together until morning. [Entry closed: 11:22 5/24/07]
May 22, 2007
Saving Giovanni +63
Another sleepless night, itching, gas, crying, wrestling. But also smiling, cooing loudly, further discovering his brothers and the contents of his new home. We also noticed he's very alert and attentive to his brothers playing, their interactions, speech to one another and to us. We put Giovanni on the table in his chair or next to the table in his swing while we eat and he watches, coos, or plays with a toy. And guess what else, Giovanni's hair is growing back. His eye brows are darkening and peach fuzz is springing up all over his head. I'm conflicted now: Should I grow my hair back or keep it shaved to show the Giovanni billboard on the back of my skull.
We also had a bone marrow drive today inspired by Giovanni's brother Alex in his classroom at Belmont Elementary School. Alex inspired the drive several months ago during circle time when he spoke about Giovanni and showed a picture of him. In fact, the school event added 83-life saving donors to the registry for a grand total of 8,263 inspired Giovanni donors since January 15, 2007. Thank you Belmont Elementary School, staff, volunteers, and especially all of you new potential life savers. [Entry closed: 11:37pm]
May 21, 2007
Saving Giovanni +62
Weight: 11.5 lbs, Platelets: 6,900
Giovanni is still restless, he's constantly itching his eyes again--like he was before he got to Children's Hospital when his white blood cell counts were 60 to 90 thousand times above normal and attacking his skin--and at times we've had to tie his sleaves across his chest to stop him from trying to pull his feeding tube out. We're puting a cream on his eye lids that's supposed to stop the itching but he's rubbing it all over his face, which inturn gets under the tape peeling it up and loosening his feeding tube. He's fighting us on the feeding tube, but it is working. He went from 10.12 lbs to 11.5 in a week.
The itching goes in bouts and you can see he miserable and suffering. We fight with him to stop, he settles down and then he begins again. The itching is also bad because it burns up essential calories he needs to add weight and get stronger. The more enery his exerts the more calories he burns and the less weight he gains.
On a better note, when Giovanni's not itching he's showering the place with smiles, cooing, and just looking around at all the different things in the house and around the yard. We're also taking him outside for walks, which he loves, and he's also getting to know his big brothers, Adrian and Alex. When Christina or I are holding Giovanni the boys will come up and Giovanni will hold their fingers, touch their face, and rub their hair. Note, of course, that hand cleaning is essential. We are constantly washing Adrian's hands and making sure he dosen't go near the baby unless his hands are clean, and Alex, well he's very dilligent about washing his hands, knows he can't touch the baby until his hands are clean and when he comes home from school he changes his clothes and then washes his hands. He does the same everytime he leaves and enters the house. Christina and I are constantly cleaning the door knobs, light switches, toilet handles, table and counter tops, and of course cleaning our own hands before we touch the baby. We go a Purell factory going here. As a matter of fact there's a bottle looking me in the face now on top of my desk to use when I leave the keyboard. Lots of germs on keyboards.
Finally, Christina and I want to thank our visiting nurses Carol and Denise, who've helped us enomously and lifted our load. Granted, Christina is Giovanni's primary caretaker, she's a natural mother. Me, I handle a number of things and of course help with Giovanni in many ways but Giovanni needs constant care when he's not sleeping. And even when he is sleeping, sometimes is only for 15 minutes. He's staying up almost all day, sometimes we get a few hour naps out of him, and at night he used to sleep all night, but now he has a constant feed all night so his guts gettng pumped full of baby formula. This inturn results in wet diapers, which our baby boy can't stand and I can't says I blame him. I know I wouldn't want to lay in my own urine or a pile of cow pies all night so why would he.
More serious though is the gas. He's experiencing increasingly more gas problems or pain that causes him to scream in pain and stretch out his body. When holding him its almost like he's trying to get away. Now I know baby's get gas, but given Giovanni's past and the intestinal issue she had--one being gas problems--we are watching this closely and hope its just the volume of food he's getting which is increased each day. [Entry closed: 11:14pm 5/22/07]
May 20, 2007
Saving Giovanni +61
Giovanni got up five times last night, but enjoyed sleeping in my arms most of the day while I--for the first time in months--stayed home and sat on the couch watching movies. Christina was busy around the house and we shared medication duties. She asked me what I wanted for breakfast and I jokingly said,
I want a Lumberjack's breakfast.
What's that, she said,
Its eggs, pancakes, toast and sausage.
The request shortly thereafter left my mind because I commonly break Christina's chops for fun--its my nature--I have a comedic side and I lost myself feeding Giovanni. I'm very anal about the feeding baby boy. I wipe his lips with every spoon. I can't let the food get all over his face. Nope, can't do it. One spoon, one wipe. Nice and clean and orderly. Except of course when he spits it on me or sneezes. He sneezed up my arm yesterday while I was wearing my bathrobe. You know how the arm hangs down. Well I'm putting a spoonful in his mouth and as I pull it from his lips he lets me have it. Baby food all over my hand, wrist, and up my sleve on my forearm.
"Here's your breakfast," Christina said, and as she's walking over I see a damn Lumberjack's breakfast. She like smessing with me too. I did get off the couch a few times, never got out of my bathron though--still peppered with baby food---and took Giovanni out for a walk around the yard. He looked quietly around at everything as I walked him around the house to see the tress, woods, grass, all a new world for him. His world. A world in which he should be able to attain anything his heart desires after surviving everything that this new world has places in his way.
After our walk we retreated back to the cough. He spent many hours sleeping in my arms between meds, food, doaper changes. Christina took advantage of her time while I held Giovanni. She cooked a beef stew, finished folding laundry, cleaning the house, filling plastic bags with syringes full of medications for Giovanni, and went to the store.
Aunt Rosie came over to see her baby and is going to the hospital with Christina in the moring. Other friends have also volunteered to help us. Denise is going Wednesday, Anne Friday, Katie next Monday, me Wednesday, and my mother next Friday. Christine is coming over Saturday to help with the house and Sunday Matt and Niclole to cook while we attend to personal stuff and Giovanni.
All of our friends are rallying to help us like the country and world has rallied to help Giovanni and us. Life is good, just like Socrates opinied 2000 years ago. Life is good. That was the riddle of The Republic that the philosophy professors wanted us to answer. What does "Life is Good" mean? To the Greeks it meant that when everyone in the republic was completing their duty, their function, working together as one, contributing their part to the body politic the community was cohesive and orderly. That, also, is the Greek definition of justice, another of the many illusive concepts Socrates threw around the Republic. And when everything is running orderly we all enjoy "The Good Life."
Enough philosophy. I don't want to bore anyone. And I must get to sleep. [Entry closed, 1:51am].
May 19, 2007
Saving Giovanni +60
Giovanni has had his third restless night. Its a combination of things: His constant feed is being increases every night, so he's learing what its like to be full, he's starting to experience more gas pains, and the series of medications he must take seven times a day are taking their toll on his stomack. In fact, he threw up this morning during a tube feeding because the flow was to fast. FInally, he want's constant attention. He's spoiled, (whic he deserves), but he wants to be held his every waking moment.
But between his moments of discomfort he showers us with priceless smiles, grabs at our faces with his little fingers, and is amazed by manipulating his little toys from hand to hand and turning them around to inspect each color and crevice of the molded plastic.
We had four Giovanni bone marrow drives today, three in Massachusetts and one in New York and added over a hundred life-saving donors to the registry. And this moring when I checked the emails we found many people volunteering to help us with Giovanni, Alex and Adrian, and the household duties. Thank you everyone, again, for helping us through our struggle. [Entry closed, 10:24pm].
May 18, 2007
Saving Giovanni +59
ANC 4,190; Platelets 6,700, Weight: 10.10
Another rough night for Giovanni and he was off to Dana Farber with mom--her previous appointment for today canceled--so she took Giovanni again. Leaving at 6am she arrived at Dana Farber at 8am and Giovanni cried the entire way down. It was agonizing for her to listen to him cry all the way down but even worse when he cried all the way home forcing her to pull over several times to comfort him. She called me several times practically in tears, stressed out, telling me she can no longer drive to the hospital with Giovanni herself and I must help, which makes me feel quilty and as if I'm not taking care of my boy. So for now, for at least three more weeks if we can't find anyone to travel with her and also find someone to watch Alex and Adrian on Monday, Wednesday, and Friday, I must go with Christina and can't begin working.
On the brighter side of things, Giovanni's numbers are high, his steroids will be reduced next week, and the doctors said Giovanni did better than they expected for his first week home.
At home, however, the care is increasing. He is on a continuous feed through his feeding tube at night, must get four tube feeds during the day for a total of 14.5 oz of formula and the rest of his food intake is from baby food. All of Giovanni's meds with the exception of cyclosporine are going through his feeding tube so we are no longer having as much trouble giving him his medications, but the cyclosporine is still administered orally and he hates it. Last night we gave it to him and then gave him several syringes of water to wash the medicine down, which actually has a burning effect to which both Christina and I can attest to because he's spit it in both of our eyes two nights in a row. Its terrible. He gets the meds in his mouth and as soon as it starts buring he screams in agony, crying, spitting, flailing around, and upsets himself so much he vomits eveything in his stomack.
Imagine us wiping our burnings eyes in the dark until we can see and then passing Giovanni between us to comfort him. Tonight he spit in both of our eyes then puked on mom. I cleaned the puke off Giovanni and the floor while mom changed him and then herself while I held him. And within a few minutes he finally fell off to sleep.
We are moving his crib from his room to ours in the morning so we don't have as far to run during our repeated trips in the night to his side. With the feeding tube every choke, cough, or snort you hear in the night makes you jump with fear from visions of self- aspiration.
Giovanni is starting to get a rash on his body. Mom's first horrific thought was graft versus host disease (GVHD) but the rash is not on the palms of his hands, souls of his feet, or the back of his neck which are indicative of GVHD. She also believes he may have a cold but I feel his coughing and sneezing is from the throat irritation of the feeding tube.
We don't want any colds, infections, or sickness of any kind. Any of these things can put Giovanni back in the hospital and threaten his life given the growing and fragile state of his 59 day old immune system. He's like a newborn even though he's nine months old, soon to be ten.
The relief and happiness we experienced when bringing Giovanni home is starting to dissipate, we've climbed back on the roller coaster filling our cup with stress, our old friend fear, and the anticipation of terror is hiding on the fringe of our household threatening to cloak us in its shadow, engulf us in its arms, and pillage our home, our child, our life as we have come to know it for the last nine months during our quest to save Giovanni.
Stay positive, yes, stay positive, but that is easy for one to say when the reality of life is its precarious, here and gone, and you are helpless to change that course once nature dictates so. Giovanni, though, has danced a jig on the edge of life and death many times in his young life--more so than most men--and while our emotions recklessly bounce from one extreme to another we grasp to his tenacity, strength, and in turn gain strength for his next struggle. [Entry closed, 1:30am]
May 17, 2007
Saving Giovanni +58
Weight: 10.12 lbs
Giovanni had a rough night getting up repeatedly. He doesn't like the feeding tube, but he's getting his required nutrients and intake. He was uncomfortable most of the day and has begun to experience some gas issues, which we will monitor closely considering his intestinal issues.
Christina is finding it difficult to take care of Giovanni, the other boys, and the house. She said, "I can't get everything done, its a lot of work taking care of Giovanni." And while I help take some of the load, I'm still scheduling bone marrow drives, maintaining the website, answering emails, and trying to drum up some construction work to pay down the debt we've accumulated on credit cards going back and forth to the hospital for 6 1/2 months. We were hoping we could sell all the raffle tickets to pay for the vehicle and use the balance to pay some debt and continue the bone marrow drives, but the raffle tickets aren't selling as we thought.
I'm conflicted. I want to continue the bone marrow drives, put record numbers of people in the registry and wait with anticipation for the phone to ring and the voice on the other end to say we found a match to save a child's life from a Giovanni drive. That will be the ultimate moment, Giovanni's legacy realized, our legacy. The drives put 8,086 people in the registry so far and its only a matter of time before many matches are found saving kids and young adults. That's God's work, saving lives, there's nothing more noble. But the drives don't pay the bills, and while I wish with all my heart I was doing this for a living if I don't go back to work we wont have a home.
The doctor's told us it would be tougher at home than in the hospital and we dismissed that statement feeling Giovanni at home and being a family once again could no way be harder than trecking back and forth to the hospital, rarely getting a home cooked meal or spending time together. But its true, its tough, we are spread thin, even the both of us are struggling to get everything done and we have two visiting nurses. It's gonna be even harder for Christina without me.
But I must defer to my strength, to the quote I used threw all of Giovanni's struggles: "That which does not kill you only makes you stronger." We'll do whatever need be to stay a family, take care of our kids, and make ends meet, or I'll be taking a trip to Children's Hospital to sit in the lobby for ten minutes to realize how good we got it to be home with our little boy as tough as it may be because those who left their children in the morgue of Children's Hospital would gladly trade places with us.
May 16, 2007
Saving Giovanni Day +57
ANC 3,180
Giovanni got up twice last night: The first time to eat, only 1oz, and the second time to be held. Mom headed to Boston at 6am and arrived at Dana Farber at 9:15am. Once mom and Giovanni checked in his vitals were taken and the fear struck: he had a fever. Christina felt it was from a melt down he had before reaching the hospital--he only made it to exit 35 this time--and because of the clothes he was wearing plus his carrier was covered with a blanket as she brough him in to the hospital.
After an hour the temp persisted but an hour later he had none. WIth respect to fevers during the post-transplant process, its significant because it can mean infection. The fever criteria goes as follows: Any temperature above 38.0 twice in one day or once above 38.5 mandates immediate admission to the hospital for a minimum of 48 hours. Antibiotics are started and blood cultures are drawn to look for infection or even graft verus host disease. Giovanni's lab work also showed his platelet count went from 4,700 Monday to 6,900 today. Giovanni's system is producing good blood cell counts.
While at Dana Farber Giovanni was hydrated because he didn't eat a lot yesterday, and Christina further asked that he get a feeding tube. After the doctors considered the request they agreed with Christina and a feeding tube was placed in Giovanni's nose. Although Giovanni is eating baby foods well, he's not eating enough formula, which hold the essential nutrients he needs to grow. Giovanni needs to gain weight. Things are still day by day and will be for the next 10 months.
He is still in a good mood, smiling and cooing, but he needs to add weight to both stretch his stomach and become stronger. Mom got back to the house at 3:30pm and began taking care of Alex and Adrian while Grandma took care of Giovanni before handing him off to me so she could go home. I'll be taking Giovanni to the hospital Friday alone, which I must learn how to do. Its intimidating but Christina can't do it all alone. But Elena will visit us and rescue me if needed. Have a good night everyone, we'll add another entry tomorrow.
May 15, 2007
Saving Giovanni Day +56
Giovanni slept well last night but mysteriously woke up in our bed again. We hydrated him overnight and he woke up and consumed a huge breakfast, drank over 12oz during the course of the day, had a hardy lunch, and upon waking in the early evening had a big dinner. He did, however, throw most of it up because we gave him his 8pm meds too soon after feeding him.
During the day Giovanni was happy and alert. He was smiling, cooing, and sticking his tongue out at everyone. Two visiting nurses came by in the afternoon to check him out and get more formula in him. We now have to get a minimum of 10oz of liquids in him during the day and the remaining fluids will come from his IV hydration at night.
May 14, 2007
Saving Giovanni Day +55
ANC 3,370
Giovanni spent most of the night in his crib but at some point got momma to bring him to bed with us. I woke up at about 5am from Christina shoving a bottle in my face saying, "Here, feed your son, I have to get ready." She went off to the shower and Giovanni looked at me with a grin, smile, and reached for the bottle. He drank one oz and fell back to sleep.
Christina and I left the house at 6am for our trip to Dana Farber. Daddy was in the car so baby boy behaved until we hit Storrow drive when he began to get angry. Overall, we think he may be getting used to the car. We arrived at Dana Farber at 8:45am, entered the Jimmy Fund Clinic, checked in at the desk, and proceeded to room C. I made a quick exit from the place leaving Christina in charge of Giovanni and walked to the Hynes Center to visit me Teamsters Local 82 friends who greeted me with welcomes of "Superbaby, how's the kid, good to see ya Mike, great Herald cover of Christina and Superbaby, love that Irish flag, Italy rules, great news Mike."
While walking away from the Hynes Christina called me to tell me Giovanni's ANC was 3,370, his red blood cell count 3,740, his platelets went from 3,900 to 4,700. He did need hydratoin again, so he recieved some IV fluid. He also got a shot of Epoetin, which stimulates the red blood cell count. This is good because many kids going to the clinic must get blood transfusions to replace there red blood cells and Giovanni is making his ouw with a little turbo boost from the epoetin. Christina also told me she asked the doctors to order home IV fluids at night since he can't stand the formula.
After speaking with a few friends I walked to City Hall to get a list of Boston events and parades that I'm looking at for possible bone marrow drives. The city is completely supportive of adding people to the bone marrow registry and saving lives. After leaving there I went to 99 Summer Street to visit my friends Olga and Demetrious at Olga's Kafe. They saved a few Heralds from last week that had Giovanni in them for me and Christina and we spoke for a little while about Giovanni, his reaction to home, and how he was acting and then I took a cab back to Dana Farber.
When I got back to Dana Farber Christina told me the doctors withrew Giovanni's atarax, lowered his cyclosporine from .33 to .23 starting tonight. And Wednesday if Giovanni's is still doing well they may lower his dose of ativan.
Giovanni ate well today, like a hog. His day went like this: rice and banana cereal with doucal (a chaloric additive) with banana on the side for breakfast, more banana rice cereal for lunch, 9 oz of formula, and ended the day with sweet potatos with rice, apple sauce with rice and doucal.
We all arrived home where Grandma was watching the kids and spent the rest of the day as a family. It was quite relaxing. It's all still very unreal that we are home but the adjustment is most welcome after spending 6 1/2 months at Childrens Hospital.
The below links are news and newspaper reports on Giovanni's release from the hospital. Please watch the, copy them and send them to everyone you know to inspire more people to have bone marrow drives or join the registry.
www.wmur.com/video/13300050/index.html?taf=man
WHDH News Report of Giovanni
WBZ News Report of Giovanni
NECN News Report of Giovanni
NECN News Report of Giovanni
Concord Monitor: 'Superbaby' Giovanni home after treatment
Boston Herald: Cover with Giovanni and Mom
Boston Herald: Super baby comes home
May 13, 2007
Saving Giovanni Day +54
HAPPY MOTHER'S DAY
Giovanni slept in his crib again last night until he woke up at 6am. I heard him grunting in his room and went to get him. He smile dbig when he saw me. I checked his diaper and changed it, wrapped him in a blanket and brought him to bed with me. We slept for another hour and were up by 7:00am. Christina got me a bottle for him and he wold only drink an oz. We went down staris and she made another bottle from a different formula and he only drank one oz.
Changing tactics we went for the food. He ate a jar of cereal and pears with added calaries and even had apple sauce. While I was feeding Giovanni Christina was getting the medications ready. Oh yes, we failed to tell you about the regiment of medications Giovanni must get each day. They are as follows:
8:00am Giovanni gets the following medication: cyclosporine, prednisolone, protonix, atarax, reglan, magnesium sulfate, and artificial tears.
12:00pm he gets ativan,
2:00pm he gets fluconazole and reglan.
4:00pm he gets cyclosporine, atarax
8:00pm he gets prednisolone, protonix, reglan, and magnesium sulfate.
12:00am cyclosporine, atarax, and ativan.
As needed: benadryl, he must drink 20oz of fluid between 7:00am and 10:00pm, and all he can eat.
All of these medications must be prepared each day by drawing a certain number of cc from a jar into oral syringes and then we must give them to him. Most of them he takes no problem, but a few release the rage of Giovanni. The cyclosporine and ativan. Christina says the cyclosporine has a buring sensation. He hates is so much he screams when he gets it. He will cry for a good ten minutes, stretching out his body, and screaming. Yesterday he upset himself so much he threw up his entire breakfast.
After we got his 8:00am medications into him he was so angry he puked up most of his breakfast. We tried to get juice in him, more formula, but had little luck. He's drank less today, 8oz, then yesterday and we fear he will need hydration again when we go to the clinic tomorrow. Still, however, his disposition is wonderful and moma had a great Mother's Day gift with Giovanni in the house with his brothers.
Before closing this entry we want everyone to watch the below video production from our Arizona friend Tony--formerly of Massachusetts--and Deanna Turnquist of Arlington, MA.
May 12, 2007
Saving Giovanni Day +53
Giovanni slept in his crib last night, we don't want to spoil him too much and he got up three times. When he got up at 5:30am Christina asked me to take care of him so I changed him, got him a bottle--he ate four oz for me--and fell off to sleep with a full belly.
Christina and I left Granndma Judy at 9:30am with Giovanni for the day to attend two of the three Saturday bone marrow drives. Our first stop was over two hours away in Franklin, MA, at the St. Mary's School where Christine Quick, her family and friends added 56-life saving donors to the registry. We left there at 1:30pm and headed to Danvers, MA, where another drive was held at Moore GMC by the Moore family, event organizers Katie and Christina and they added 51-life saving donors to the registry. And the maker of Giovanni's superman outfit, Denise Frost--also an orgnaizer of many Giovanni bone marrow drives--added 25-life saving donors to the registry for a total of 132 and a to-date total of 8,086-life saving donors to the registry. Thank you event organizers, volunteers, sponsors, www.dkmsamericas.org, Rhode Island Blood Center, Michael's Fund of Fall River, and Caitlain Raymond International Registry.
We arrived home at 6:30pm. When we entered the house Grandma Judy was holding Giovanni and as soon as he saw the two of us a big grin came across his face. He has such a beautiful smile. We spent the evening sitting in our family room watching mindless TV--for the first time in months--passing Giovanni back and forth. It was almost surreal. As I was laying back in the corner of our sectional, Giovanni on my side sitting in the crook of my arm, just thinking this is wonderful and feeling grateful beyond words to be there.
Giovanni is eating well but not drinking enough. He only ate 12oz or his required 20oz of fluid today, but had an otherwize good night. His disposition is great. He's smiling, playing, sleeping well, alert, and cooing.
May 11, 2007
Saving Giovanni Day +52
Weight: 10.08lbs
Christina and I woke up with a special blessing in our bed this morning: a toothless grinning Giovanni cooing away between the both of us looking for a bottle. It was like awaking from a dream only it was reality. I heard cooing, rolled over and looking down at Giovanni and this toothless grin came across his face followed by a big smile and a sparkle in his eyes. I'm here, he was saying, and a big smile broke across my face and warmth, no love, filled my body. Leaning down I kissed baby boy and Christina awoke asking if I wanted to feed him to which I said yes so she got up and went for a bottle.
As I fed him he looked back and forth at Christina and I as if one of us was leaving or maybe shocked himself that we were all in the same bed and he didn't know which one of us to look at and wanting to look at us both kept looking back and forth smiling at each of us, rewarding us, loving us, for being by his side all the while not knowing, or maybe so, that is was a reward, no and honor, for us to be at his side. To love, kiss, and hold him each day. An honor, an honor for us to be in his life, to bask in his strength, his love, his adoration.
We were up at 5:30am to pack Giovanni up so Christina and Grandma could take him for his first visit to the Jimmy Fund Clinic at Dana Farber. Christina and Grandma Judy left early to beat the trafic and be at the clinic by 9am. On the way Giovanni must have felt they were bringing him back to the hospital and he had a superbaby meltdown. They had to pull off the road, change Giovanni, feed and soothe him for a half hour before he calmed down and they could proceed.
For the next month we must bring Giovanni to the clinic three times a week: Monday, Wednesday, and Friday and if all goes well the visits will be reduced. During this visit blood was drawn to test for his blood counts, his vitals were taken, his weight: 10.08lb, and labs revealed Giovanni was dehydrated and his liver enzymes were high, but that was attributed to his fluconazole medicatoin. The tests also showed that Giovanni's red blood cell count went from 24 on Wednesday to 39 meaning he's producing his own red blood cells. As a result of the testing he recieved IV fluids to hydrate him, and medication to increase his red blood cell count. Before leaving Christina and a nurse changed Giovanni's central line dressing. Christina left the Jimmy Clinic at 3pm and got home at 5:30.
The same process will take place every visit until the doctors are happy with his blood cell production and as they see good counts Giovanni's medications will be slowly reduced.
May 10, 2007
Saving Giovanni Day +51
ANC 2,080
WELCOME HOME GIOVANNI
View below news reports on Giovanni's departure from Boston Children's Hospital where his life was save by the doctors, nurses, CNA's and staff. Thank you everyone for your continuing support, love and prayers.
www.wmur.com/video/13300050/index.html?taf=man
Concord Monitor: 'Superbaby' Giovanni home after treatment
Boston Herald: Cover with Giovanni and Mom
Boston Herald: Super baby comes home
May 9, 2007
Saving Giovanni Day +50
ANC 2,580
Baby boy had another day of freedom from the IV tree and another day of exclusive baby food. He also ventujred outside his room to a lower floor for an ultra sound. His ANC was 2,580, his temperment extraordinary, his ultra sound clear, he had his last dose of antibiotics today, and bloods were taken to confirm the NEMO diagnosis.
Giovanni is going home tomorrow afternoon, May 10, at approximately 3pm. Denise made his Superman outfit, Deanna and Dave are bringing the Suburban limo decorated with American, Italian, Greek, and Irish flags. And every Boston news station--but FOX 25--will attend Giovanni's departure. RAI Italian international TV will also be there with the Boston Herald. These stations and the Boston Herald supported us through Giovanni's entire hospitalization, covered and announced the Massachusetts bone marrow drives that helped us add 7,745-life saving bone marrow donors to the international registry, and we thank everyone: reporters, writers, photographers, editors, and staff.
NH WMUR TV, the Concord Monitor, The Citizen, and Union Leader newspapers will welcome Giovanni home. WMUR and these papers supported Giovanni and us during his entire hospitalization, covered and announced the bone marrow drives that helped us add 7,745-life saving donors to the bone marrow registry, and we thank them all for their support. Thank you everyone, reporters, writers, photographers, editors, and staff.
Giovanni's coming home.
May 8, 2007
Saving Giovanni Day +49
ANC 1,860
Giovanni was released from his IV tree for the first time in months and walked around his hospital room as if entering a new world. Aunt Rosie walked him to the window repeatedly allowing him to look outside and see a new world and inspect the entire room. When Christina and I arrived in the afternoon with grandma Aunt Rosie was standing in front of the window with Giovanni. When I entered speaking, "Baby boy, baby boy, give me a smile" he whipped his head around and smiled at me. He saw his momma next and his smile grew even more when she began talking to him.
We are exilerated. Giovanni is no longer on any IV med, he's tolerating solid foods and bottles, and his disposition is incredible. I guess if you spent months in agony and suffering you would have much to smile about each day you felt well. IMagine his perspective and yet only and infant.
Mom has cleaned the house from top to bottom to welcome her son and Denise is making his Superman outfit. That's right, my baby boy Giovanni will leave Children's hospital in a Superman outfit because he suffered repeated medical setbacks that could have killed him but he overcame and bounced back each time. We are so very very thankful and hopeful he will continue to progress and that his NEMO condition will manifest in the most mild forms. Those further conditions, however, we must wait and see how they manifest.
Two more days, Thursday, May 10, Day +51, Giovanni is coming home.
May 7, 2007
Saving Giovanni Day +48
ANC 2,000
Giovanni slept all night for Aunt Rosie and woke up wanting to play. His ANC is 2,000, his weight 10.71 of real weight, his weight, from solid foods and bottle after bottle. When Mom and I entered the hospital this afternoon to visit Giovanni we ran into one of his nurses from 9 South. When she saw us she came up to us asking about Giovanni and we told her how well he was doing and that he was going home and she began to weep, right in the lobby, she lowered her head and she cried. Imagine that, these dedicated young ladies and moms who work at this hospital caring so much about your child that they would weep in open public in happiness and relief.
Please, please don't cry, said Christina, were happy to be going home
Yes, I know, but I love him, he's so beautiful and he's been through so much.
And he's living thanks to you and everyone else here. We're leaving and grateful.
I then said, As soon as Giovanni is well we're having a party in Salem, NH, and starting it early so all the nursing shifts can attend. This is a great hospital and we're gratful.
I rubbed her arm and she turned to walk away. "Stop, we'll walk to the elevator with you." Christina and I walked with her to the eleveator and she cried. As we entered the elevator she lowered her head so no one would see her cry and we silently climbed to the sixth floor where we said goodbye and left to visit Giovanni for the afternoon.
When we entered Giovanni was sleeping in Aunt Rosie's arms, but with a kiss on each side of his head from Mom and me he woke up with a big grin to welcome us. Mom had a surprise for her baby boy, she found a baby chair designed to allow a child to sit up, so we put it on the bed and placed Giovanni in it and he went to hooting and cooing and smiling away in his new, unassisted body position.
He sat there smiling from ear to ear and when a few nurses came in to find him sitting up in the chair he and they began smiling at each other. He was smiling and giggling. It was a great site but unfortunately there was no Kodak to be found because the one I bought from Best Buy a few years ago broke for the fourth time. As sure as Giovanni is getting out of the hospital Thursday I'll never be buying another Kodak camera again.
When Giovanni tired of the chair I fed him a bottle, Christina chased Adrian around the small room--the kid is very agile--and then mom held Giovanni while Adrian settled to watch a movie. Giovanni is coming home. Day +48 is over and +49 awaits us.
May 6, 2007
Saving Giovanni Day +47
ANC 2,270
Giovanni's ANC is over 2000 again. The boy, no super boy is doing incredible. The doctors are amazed, Monday morning his pain meds and TPN are done, no more IV nutrition for Giovanni, and his only IV meds are the remaining antibiotic to prevent any line infection and fluconazal--an antifungal medication--that prevents thrush that could arise from the immnuno suppresants he now takes orally. Those are the drugs Giovanni gets to abate any graft versus host disease and at day +90 get incrementally reduced until completely removed.
Giovanni had another great night and day. He's giggling, talking, smiling and very active and alert. In fact, he may be release Thursday. That's right, we have a tentative release of date of Thursday to go home. No McDonald house either. The light is shinning through the woods. Giovanni is coming home to his room, his brothers, his home thanks to everyone's donations that allowed us to keep our home and stay with Giovanni since November 3, 2006 at the hospital and yes, he's coming home to us, his family and friends.
What a journey, we're exhausted, empowered, grateful, and hopefull. Encouraged, yet cautious becasue this is not the last leg of Giovanni's journey or ours. We have many obstacles to confront and we will confront and conquer them as a family just as Giovanni and we have faced every challenge to date. Giovanni is here for a reason, to save live, the lives of those children who need a bone marrow match and deserve to live. Continue this quest with us, its a good quest, a fulfilling one. One in which you can save or help save a life. In fact, the Rochester, NH, VFW Save Giovanni's Friends Bone Marrow Drive added 59-life saving donors to the international registry for a to-date total to 7,745 donors.
As I said several days ago, if you ever want to forget your troubles sit in the lobby of childrens hospital for 10 minutes to realize how lucky you are. Having said that, Christina and I offer our deepest sympathies to baby Porter's parents. Porter was called upon to serve with Golden wings as an angel at 2:42pm today. His strength no longer capable of powering his donor heart or continuing the fight against the repeated medical obstacles he faced. A true baby warrior, most admirable, he fought until his dying end. If we all possessed such strength we'd have a super race. A friend of Giovanni, Porter is missed by all who struggled with him and forever remembered for his strength. Go with God little one. Those who we hold most dear never truely leave us.
May 5, 2007
Saving Giovanni Day +46
ANC 2,270
Everything is good. ANC 2,270, no infection, central line looks good, Giovanni is tolerating his foods and increasing his intake. The IV nutrition was reduced further, his pain meds are down to 1ml per hour and he's by Monday he will be completely off his pain meds. His food intake is simply incredible. He's drinking 3oz per bottle with no problems, eating a jar of baby food each sitting and now he's giggling to himself. His disposition is wonderful but he don't want to sleep for Grandma or Mommy unless of course its in either of their arms. As soon as they put him down he wakes up and demands there attention.
Now me, he sleeps for me. I hold him, we play, I feed him, I let him slap me in the face and on my bald head until he tires of that, make him smile for daddy one time after the other--I love that it just melts me--and then we sleep. When he wants something he calls me over to the crib and I take care of business. Change a diaper, feed him, rock the crib back and forth or we play with some toys and forget about it--he's back to sleep, yeah, in my arms. He's a hug-a-holic and he deserves it.
The Gate City Pub in Nashua, NH, owned by Kenneth J. Leva, Assistant Deputy Superintendent for the Middlesex Sheriff's Office Work Release Program, as well as friend to Congressonal candidate Sheriff James V. DiPaola of the same office and supoprter of Giovanni had a motorcycle poker run for Giovanni. They raised a substantial donation to support Giovanni and us and we thank them very much. Special thanks to everyone who attended the run and especially to the organizer and manager of the pub Brian Porcelli.
Day 46 is over, mom is resting with Giovanni, and I'm heading home to prepare for the Rochester, NH bone marrow drive Sunday morning.
May 4, 2007
Saving Giovanni Day +45
ANC 1,710
Giovanni had another great day, sailed through his proceures and everything looks good. His cultures came back negative, but if the doctors see any puss around the central line in the morning they will consider removing it and placing another one, which could delay Giovanni's departure.
May 3, 2007
Saving Giovanni Day +44
ANC 1,680
Giovanni only woke up last night for his puck puck and even slept until 8am before waking me as he played in his crib and talked to himself. When I began to change him and take off his clothes I saw a green discoloration around his central line and called the nurses. They agreed green was not a color we want to see around the central line and called the doctors who upon seeing the wound had the dressing changed, took a culture of the puss seeping from the line insertion in the chest, and placed Giovanni on a series of antibiotics, which may delay his release if any infection is found.
After his dressing was changed he ate an entire jar of rice cereal and apple and an hour later drank 90cc from a bottle. The kid is eating like a champ. His disposition in incredible. He smiles at eveyone who enters the room from cleaning staft to nurses, doctors and administrative people. Today he was even smiling at two members of the carpenters union in the room fixing a window.
When I left Christina arrived with grandma and Denise Frost, a woman who has organized and worked a number of Giovanni and Friends bone marrow drives. Today Giovanni added a new behavior: he's giggling to himself.
I left the hospital to attend a bone marrow drive in Princeton, MA, organized by Terry Nicholes and held at the Thomas Prince School were 27 people became life saving bone marrow donors. Thank you everyone, we hope you win the lottery of life. Total donors to date is: 7,623.
Giovanni is scheduled for his Cat Scan at 9am in the morning and the MRI thereafter. If the results are negative and his culture comes back as a mere surface infection we could be on our way to the McDonald house for 1 to 2 weeks and then released from the hospital. We'll update you tomorrow, Day +45.
May 2, 2007
Saving Giovanni Day +43
ANC 2,180
Mile stones: ANC 2,180, ate an entire jar of baby food for me for the first time in his life, sucked down 3oz of juice an hour later and held the bottle himseld, and let me change a diaper full of firm poop--I enjoyed it. But the most, or should I say at lease one moving moment this evening after I relieved mom was when I was playing with Giovanni on the crib. He was holding my finger and pulled it into his mouth and began chewing on it. Yes, it was a big deal. A first. He looked up at my as his tongue swirled around my finger and he chumped away with his gums. I smiled--a big smile--like it was the first time a baby chewed on my finger and is was.
Later while I rocked him to sleep I hovered over him and he placed his hand against my forehead like he was christening me, almost like he was saying "Dad, its alright, I'm gonna be all right" and as he touched my forehead, his fingers tapping me like piano keys, I absorbed the emotions, the feelings he projected into me and I closed my eyes cherishing his touch. Intoxicating. In the background the Dixie Chicks "Godspeed (Sweet Dreams)" played:
Dragon tales and the Water is Wide
Pirates sail and lost boys fly
Fish bite moonbeams every night
And I love you
Godspeed little man
Sweet Dreams little man
Oh, my love will fly to you each night on angel's wings
Godspeed (Sweet Dreams)
The rocket racer's all tuckered out
Superman's in pajamas on the couch
Goodnight moon we'll find the mouse
And I love you
Grasping his little hand in my hand I held his little fingers between my thumb and forefinger lightly kissing them as he fell off to sleep his little fingers waving at me as he began lightly snoring and I, I, with my eyes tightly closed swam in this moment, bathed in relief, we are going home. I'll lay in my bed holding my baby boy who struggled for life and lived. I love this child more then life itself, indeed I'd give my life for him, as I would his mother or my mother. I once recieved a poem of love from someone where there was no love but now it rings of truth so let me share:
When love beckons to you follow him,
Though his ways are hard and steep.
And when his wings enfold you yield to him,
Though the sword hidden among his pinions may wound you.
And when he speaks to you believe in him,
Though his voice may shatter your dreams as the north wind lays waste the garden.
For even as love crowns you so shall he crucify you. Even as he is for your growth so is he for your pruning.
Even as he ascends to your height and caresses your tenderest branches that quiver in the sun,
So shall he descend to your roots and shake them in their clinging to the earth.
Like sheaves of corn he gathers you unto himself.
He threshes you to make you naked.
He sifts you to free you from your husks.
He grinds you to whiteness.
He kneads you until you are pliant;
And then he assigns you to his sacred fire, that you may become sacred bread for God's sacred feast.
All these things shall love do unto you that you may know the secrets of your heart, and in that knowledge become a fragment of Life's heart.
But if in your fear you would seek only love's peace and love's pleasure,
Then it is better for you that you cover your nakedness and pass out of love's threshing-floor,
Into the seasonless world where you shall laugh, but not all of your laughter, and weep, but not all of your tears.
Love gives naught but itself and takes naught but from itself.
Love possesses not nor would it be possessed;
For love is sufficient unto love.
And think not you can direct the course of love, if it finds you worthy, directs your course.
Love has no other desire but to fulfil itself.
But if you love and must needs have desires, let these be your desires:
To melt and be like a running brook that sings its melody to the night.
To know the pain of too much tenderness.
To be wounded by your own understanding of love;
And to bleed willingly and joyfully.
To wake at dawn with a winged heart and give thanks for another day of loving;
To rest at the noon hour and meditate love's ecstasy;
To return home at eventide with gratitude;
And then to sleep with a prayer for the beloved in your heart and a song of praise upon your lips.
By Kahlil Gibran
May 1, 2007
Saving Giovanni Day +42
ANC 1,980
Giovanni's ANC is 1,980 and his disposition is simply incredible. In fact, his IV TPN, (total parental nutrition) is now down to 12 hours a day in contrast to the 24 hour a day constant feed he was previously on and his appetite continues to grow. Still no sign of intestinal issues and we are hoping that will continue.
Aunt Rosie had fun watching baby boy and is back in Lebanon, NH resting. Mom is with Giovanni. We both had classes at the hospital today about how to feed Giovanni and what not to feed him, as well as how to keep him safe at home. In three months, starting from Day +1 Giovanni's immuno suppresent drugs will be slowly reduced so long as he is doing well and we can can then slowly assimilate him into society as long as his blood counts are good and his immune system is working.
For now, however, we must keep the people he sees to a minimum, he can't be handed around and held by people, and we can't have any large crowds at our home. Giovanni can go outside, and people can see him outside but a minimal number and no holding him. And the only places he may go for the next 49 days is the hospital, car, and home. For the first week of his release he must go to Childrens three times and thereafter the Jimmy Clinic at Dana Farber once a week for the entire day while subjected to a battery of tests to monitor his blood, immune system and anything else that could compromise his cord blood transplant.
We must also keep a constant watch for graft versus host disease (GVHD), indicated by rashes on the back of the neck, hands, feet or other parts of the body. In addition, we must also look for gut GVHD indicated by vomit, gas, soft or liquid bowel movements. And if he gets a temperature he must return to Children's Hospital for a minimum of 48 hours, placed on IV antibiotics, and blood cultures drawn to confirm or rule out infection.
This next obstacle for Giovanni can last as little as six months, a year, or even more if he suffers any complications. At this point, however, given his early grafting, his eating, his strength, his weight gain, and disposition we are confident he will fare well. He has faced down every challenge thus far and will continue to do so because this kid is meant to change the world and already is by inspiring 7,596 people to join the international registry to save lives.
Indeed, in the coming months as bone marrow donor test results are added to the registry kids just like Giovanni are gonna get the chance they deserve to live because Giovanni compelled people to Save his life or his many friends in need. People are fundamentally good and want to do good things, but few opportunities come along: Giovanni made that opportunity. Thank you for caring, thank you for taking time out of your lives to save a life.
We enter a new month, a month of life for Giovanni that some anonymous woman who cared enough about some unknown child to give him life. Whoever you may be Christina and I, our families, and everyone who supports Giovanni applaud you. Me, Christina, we are forever indebted to you for the days and months we've had with our beautiful son. Indeed, for the life we will spend with Giovanni. Ya know, it's a small world, I think I'll find you and thank you personally. Let you hold the life you saved, Giovanni. Until then, thank you, thank you for saving our baby...