June 30, 2007
Saving Giovanni +102
Giovanni and mom spent the day together getting food for the Sunday raffle draw. When Mom and Giovanni were in BJs three people walked up stating, "I know that baby, its Giovanni." ONe of the woman attended a Giovanni bone marrow drive in Franklin, MA. What a small world.
I spent Saturday in Princeton, MA, at the First Congregational CHurch where we added 6-life saving marrow donors to the registry for a to date total of 8,890. THank you Terry Nicholes and Caitilin Raymond International Registry.
Giovanni ate a little more solid food today and we feel he will continue until he gets back to where he was before the G-tube was placed.
June 29, 2007
Saving Giovanni +101
Baby boy got glowing grades at Dana Farber today. Oh yes, 12.15 lb. Next week he will break 13lbs. His blood tests are great: ANC: 6,980, Platelets: 231,000, white blood cell count: 10,420, and for a second week in a row he didn't get an Epogen shot, which stimulates red blood cell count. That means his body is doing a great job producing its own red cells.
And we have even better news: If everything goes well at next weeks check up clinic visits will be every other week. The doctors are impressed and amazed with Giovanni's progress.
Next week his steroids will be reduced further, and then every two weeks until removed completely at which time they may also pull his central line. It could be a few months more at most. We can't wait until the central line is gone. One less thing for him to pull out. Anyway, things are going in the right direction, and we are relieved.
June 28, 2007
Saving Giovanni +100
One hundred days post transplant today. Giovanni is doing good and even started to eat his baby food again although it was only a few bites. He's not throwing up any more though so that is good. He must be getting used to the G-tube. Hopefully he will eat some more baby food in the morning.
His disposition was the same. He's playing, smiling, talking, and being a baby. Spiro came over for a little while with Uncle Pete. I met them on Rt 3 at about 10:00pm with a police escort. The Tilton Police welcomed the Greek Massachusetts contingent with flashing lights as while stopping mer--I was in a rush to meet Sprio--and advising me to watch myself because the Lakes Region is full of race fans and tourists many of whom aren't watching out for people on motorcycles. I thanked the officer very much for the heads up, another pulled up to check out my V Rod and they both welcomed Spiro and Uncle Pete to the Area. We spoke about Giovanni for a few minutes and we all departed. I must admit, it was the best pull over expereince I've ever had. These were really some personable police officers.
June 27, 2007
Saving Giovanni +99
Another good day for Giovanni and food intake. No problems. This is a relief. Christina was able to take Adrian and Alex to the lake today while a nurse watched Giovanni and I even stopped in for a few minutes and a quick dip before heading back to work. Tomorrow Giovanni hits 100 days post transplant.
June 26, 2007
Saving Giovanni +98
Giovanni is eating again. It was the Reglan. It will have to be reduced slowly. Its apparent that the medications Giovanni are talking are really regulating and treting his symptons so we will face and issued as each is reduced and eliminated.
Giovanni's is smiling and eating--holding it all down--and talking up a storm again. We are down to one visit a week at Dana Farber and hope things continue to progress in Giovanni's favor. We will post more pictures soon.
June 25, 2007
Saving Giovanni +97
Giovanni slept through the night, but throughout the day could not tolerate his food or medication and vomited three times. He ate one baby spoon of solid foods and refused to eat any more and would not drink from the bottle. We are hoping that his stomach is just sore, but we are not sure what is going on yet. It may be the elimination of his Reglan medication, which is supposed to facilitate the movement of foods through the stomach. We will see how tomorrow goes, but if its a repeat of today we may be on our way back to the hospital.
Otherwise he had a good day and displayed no discopmfort. He smiled, played, laughed at his brothers, and rested.
From 8am to 2pm we held a bone marrow drive a Boston Polive Headquarters and added another 74-life saving donors to the registry for a to date total of 8,884 new donors in the registry since January 15, 2007, and we now have 254 potential matches to children in need of a match and three people are in the confirmatory stage. Thank you Boston Police Department, Sue Ruggiero, and Officer Bill Carroll for organizing this event and making it happen.
June 24, 2007
Saving Giovanni +96
Giovanni slept through the night and we were discharged from the hospital around 12:30. We went to visit our friends at the 50s Diner for a few minutes where the Jaguar was parked for tickets sales, and then headed to Salem, NH, to see Giovanni God Father, Marty, for a few minutes before heading home to Belmont. Giovanni did well in to the car until the last half hour during which he was irritated but didn't cry.
The G-tube is working well and we hope it will allow him to put on more weight. We are now down to single visits per week at Dana Farber, which will be a great relief. The car bed didn't work, so if any one wants one we have one for $50.
June 23, 2007
Saving Giovanni +95
Giovanni only woke up twice through the night and all and all let Mom sleep. He had a good day, but he broke out in a rash all over his arms and legs from the Morphine, we believe. He otherwise had a good day with Mom, Elena, Aunt Lorrey, and all of his hosptial friends who came to visit.
Giovanni stated at 20cc of Pedialyte for hour for five hours at 10am, then went to half pedialyte and half strength Neocate at 20cc per hour for four hours, and then full strength neocate, i.e., 26 calories per oz at 30 cc an hour for 10 hours to extend overnight. He tolerated all his feeds indicating the G-tube placement was working thus far.
He had a good day and there ws nothing more to report. We have, however, over the last week begun to see tremors in Giovanni. The doctors don't think it is a concern and feel it may be the cyclosporine side effect. This is being closely watched.
June 22, 2007
Saving Giovanni +94
All went well at the surgery. Giovanni no loger has the nasal feeding tube, which will be a great relief to him since he will not longer have to try and rip it out ten hours of the day. More important, though, he may now eat more orally without the tube which must irritate each time he drinks.
After surgery when he awoke in recovery he cried but a nurse was able to comfort him back to sleep and when he awake next in a room on 6 West in Boston Children's Hospital Christina and I were at his side and with a little playing he was smiling away. All of his old girlfriends from the floor shuffled in to see baby boy and were all impressed with his improvements and looks. And he loves the attention.
The G-tuve can be in place frmo three months to two years depending on how Giovanni progresses. Also, the biopsy was done on his intestines and we will know the results within two weeks.
We saw Danniel, Giovanni's Boston Marathon champion, and also God Mother Elena visited three times during the coures of the day to wisper Italian in baby boy's ears. Giovanni should be out of the hospital by Sunday morning if all goes well.
June 21, 2007
Saving Giovanni +93
Giovanni began the day in my arms in bed while Mom got some needed shut eye. She then left the house in my hand with the kids--trusting soul--and went for a physical examination which produced no negative results.
Giovanni spent his first half hour of th eday sitting in his bouncy seat in the shadows of the garage while his brother Adrian sat in a lounge chair with sippy cup in hand absorbing some rays. This kid has some personality. Giovanni sat watching his brother laughing and looking from him to me as I tried to clean up the garage.
We were waiting for two people from early intervention who were arriving at the house to examine Giovanni and determine what course of treatment they should take to advance Giovanni's delayed development.
The exam went well and during the middle Christina arrived home. I left the house to do a small job and Christina took over.
All and all Giovanni had a good day and in the morning we will take him to Boston Children's Hospital where his feeding tube will be removed and a G-tube placed. The tube could last as long as two years depending on Giovanni's progress and specifically how he eats and the medications he must take. The central line is still in and will remain so long as the blood tests continue. The alternaitve is for Giovanni to get stuck every week that he goes to the hospital. Maybe when he get donw to once a month they will remove the central line and he will only have labs drawn once a month.
This procedure is pretty simple so there shouldn't be any problems. We will update you all in the evening unless I get to a computer sooner.
June 20, 2007
Saving Giovanni +92
Weight: 12.12 lbs
Giovanni got great grades again today. His weights is 12.12.9 lbs, by next week he should be over 13 lbs. His blood counts were outstanding: ANC: 8,310; Platelets: 186,000. His liver enzymes are good, they were bouncing around for the last few weeks, but have stabilized. And his steriod was reduced from 5 mls a day to 4 mls. When the steriod is discontined his fluconozole and protonics will also be eliminated reducing his daily medication intake from 8 medications 19 times per day 7 times over the day beginning at 6am and ending at 12am to 5 separate medications per day. Its complicated, its time consuming, and I have a hard time just watching Christina prepair the medications for the course of the day.
One troubling note we saw this afternoon and tonight is Giovanni is having tremers. The doctors say they are not concerned that it may be from past reductions in his medications but to keep an eye on it. Just another one of those things that makes your heart jump out of your chest until you can pull it back in.
The doctors also told us no plane trips yet, no stores, and no sick people around Giovanni. They asked whether or not he had a cold knowing many people are sick--as was everyone in our house--and we said he's fine. His nose ran a little but that was it. Everyone in the house was sick and he didn't catch it. We hope that's a sign that his immune system is working. All is well, life is good.
June 19, 2007
Saving Giovanni +91
Happy Birthday Mommy
Happy, Happy Birthday Christina. Grandpa and Nana enjoyed the morning and early afternoon with Giovanni and the boys before I drove them to the Manchester Airport for their trip back to Florida, which was delayed hours due to inclement weather. Before leaving Nana Carol took a bunch of pictures of us all.
Giovanni was his usual happy and alert child looking at everyone and smiling. He wants to touch everything. In the morning Mom and Grandma will be taking him for his preop appointment and daily checkup. Lets hope he put on some more weight and all his blood counts are good.
June 18, 2007
Saving Giovanni +90
Giovanni was up at 5:30am to enjoy his 90th day post-transplant. Grandpa Mike and Grandma Carole--no... excuse me, Nana Carol, are still visiting there baby boy. They are leaving tomorrow afternoon so we gave Super Mom Christina her Birthday Cake tonight, one day early, she turns 29, again, in the morning.
She acted surprised, but I think she knew what was going on. You know these women: they have a sixth sense about things, x-ray vision, mind readers, and when they realy get to know you they can finish your sentences for you.
I gave her this musical card that belted out, "She's a brick house," from Rick James and she is. This woman is phenominal. She takes care of 2 children, Giovanni with all his medical issues, a home, and me, her 44-year old man-baby. She's ready to rip her hair out many days, kill me, but ,in fact, she keeps on keepin' on. To a woman who's all that and more, indeed, a Brick House. I love her, I'm a lucky man to have her as the woman in my life, and especially as the mother of my child, Giovanni. Please give her a call, 603-524-8284, and wish her a happy birthday.
June 17, 2007
Saving Giovanni +89
Father's Day
Giovanni spent a great day with Grandpa Mike, Grandma Carole, Mom and Dad. He relaxed most of the day with a nap here and there. When his kid brothers came home from there weekend at their father's house Giovanni was happy watching them jump around chanting "Gio, baby Gio, Gio, did you miss us." Giovanni loves his brothers. He captivated by them and they love to shower him with attention.
Things went well for the day and all was calm. For my first Father's Day with Giovanni Christina made me a card from Giovanni that said, "Daddy, I love you, 1st Father's Day, Dada, dadee, Giovanni, your Baby boy." It was signed with two foot prints in purple water color. In the morning we hit day +90, Giovanni's first milestone. He's now 90 days post transplant and we wil learn this week how his medications will be reduced and the cautions we must take with him.
June 16, 2007
Saving Giovanni +88
Giovanni's Florida grandparents, Grandpa Mike and Grandma Carol flew up to see baby boy for Father's Day. Three generations of Guglielmo's sat on the porch swing together, Grandpa indicating he's the only boy in the family to carry on his name. I didn't have the heart to tell him Giovanni is sterile from the chemo therapy hoping, instead, that future advancements in sceince may allow skin cells to effectuate pregnancy.
In the alternative Christina and I must save a small furtune for an IVF cycle and then send the fertilized eggs to a labratory with another small furtune where they are tested for the NEMO defect and removed from the batch so that only the non-defective eggs can be implanted for potential pregnancy.
Giovanni had a good day, but he's had a few watery bowel movements that we're keeping an eye on. One problem he had prior to the transplant was his intestinal system and although we hope the transplant cured that issue we have no conformation until Friday when they do an endoscopy to place the G-tube.
June 15, 2007
Saving Giovanni +87
Weight: 12.7, ANC: 3,940, Platelets: 176,000
Giovanni's still gaining weight, his counts are high, and his white blood cell count also rose negating any central line infection. On the other hand, the $50 car bed we bought didn't negate any Giovanni melt downs. He's still hating the ride to Dana Farber, but within two weeks if all goes well he should be down to one trip a week.
Giovanni is scheduled for surgery next Friday for the placement of his G-tube and we look forward to removing the nasal feeding tube that we believe is a great source of aggravation to him.
On another bright note, DKMS Americas notified me that 3 people from the Belmont Elementary School Giovanni Bone Marrow Drive are going in for confirmatory testing, which means these three people are in the second stage to saving a child or young adult's life. Giovanni's legacy grows. As I've said time and time again thousands of lives will be saved because of the people who came to bone marrow drives to save Giovanni or another child.
June 14, 2007
Saving Giovanni +86
Giggle day. Mom had Giovanni giggling today. He was giggling, thrashing, and smiling as she played with him. He ate well today, played, and saw his first fireworks show and loved it. As the sky blew up he smiled jumped around all excited.
When we got him home I took him up to his room while Mom got Alex and Adrian ready for bed. I changed Giovanni and than sat in the rocking chair with him rocking. He was looking up at me and I down at him with his feeding tube taped to his face going down his nose and his faces of pain flashed before me. I saw him first with the c-pap strapped to his face while in intensive care fighting for his life, and then in vairous stages of pain and suffering during the chemo, and how he looked after the many surgeries and than back to his present state in my arms in our home and I thought how grateful I am to have him in my arms alive when he faced death so many times.
Day 86 is over. In four more days our boy will reach his 90 days milestone. Christina and I are both sick, exhausted, but Giovanni is healthy and happy. Yes, life is good.
June 13, 2007
Saving Giovanni +85
Giovanni slept all night and awoke with the sunrise. He had a gret day cooing and playing with his brothers and we brought him to Laconia tonight to see the fireworks but they were canceled because the crowd was very small. Adrian saw his first fireworks show there and so will Giovanni. He loves watching all the people. He is going to be a social animal.
We found a car bed for Giovanni on Craigslist today and were able to negotiate the woman from $100 down to $50. Friday morning we will see if it solves the car problem when CHristina makes the trip to Dana Farber with Denise, AKA--one of the Marrow Chicks. Yes, her and her mom want to be known as the Marrow Chicks now. There have held over five marrow drive snow and will soon close in on adding 1000 donors to the registry.
Giovanni is doing great. No temp, which is good given his elevated white blood cell count Tuesday. He is smiling all the time and playing. Its simply remarkable when we thing of the condition he was in two months ago. And yes, soon, soon we will be publishing some pictures for everyone to see.
June 12, 2007
Saving Giovanni +84
Weight: 12.59, ANC: 9,030, Platelets: 172,00
Giovanni made it all the way to the hospital with mom with only one stop, the trip back..... well all I'll say is we're in the market for a car bed, searching Craigslist and other sources. His examination, however, was great as you can see from the above numbers but he may have an infection. We are not sure yet, but his white blood count is elevated. Friday will confirm or deny this possibility. If anything, the doctors think his central line may be infected.
With respect to his G-tube, we are scheduled for preop next Wednesday and admission Friday for surgery. THe G-tube will provide Giovanni with much more comfort and also help with his many medications.
The doctors are still pleased with his progress and we are on target for one visit a week visits. Everything is progressing well.
We brought Giovanni to Laconia tonight to enjoy the people and the motorcycles. He was simpy beside himself with all the action and stimuli. Some people even recognized him and asked how they could become a bone marrow donor. We have no drives scheduled for this weekend. Giovanni's Grandmother and Grandfather are coming from Florida to visit. We are however, always looking for places to do drives so please write us with any ideas at:
mguglielmo@helpgiovanniguglielmo.org
June 11, 2007
Saving Giovanni +83
A day as a baby. Yes, Giovanni enjoyed a day as a baby: eating, sleeping, playing, watching his brothers, and being help by mommy and daddy. Oh yes, he is saying: "da deee" now. Seven days to go.
June 10, 2007
Saving Giovanni +82
251 potential matches from Giovanni drives
Giovanni spent the day with Mom saying "Dada, dada," while I attended to bone marrow drives with the Local 82 and 122 teamsters in South Boston, MA, and at the Central Square Congregational Church in Bridgewater, MA. We added 128 donors to the registry today for a to date total of 8,764-life saving bone marrow donors.
We were also notified today via email by the Caitlin Raymond International Registry that Giovanni bone marrow drives have added 251 potential life saving matches to the registry and many samples still need testing. Hundreds of children and young adults will live because of all the people who cared enough to save a live. If Giovanni only knew the impact he was making he would be a very happy boy.
We enter day 83 in the moring with seven days remaining until Giovanni hits the 90-day mark. As soon as we get medical permission Giovanni is heading to Italy to get honorary citizenship, and then to his welcome home party for everyone who wants to attend. When its scheduled we will be having it in Salem, MA. Keep watching the site.
June 9, 2007
Saving Giovanni +81
Christina and I were up at 4am and out the door for Staten Island, NY, by 5:30 am for a bone marrow drive. Grandma stayed with Giovanni all day. At the end of the day we added 50-life saving donors to the registry in NY and in Foxboro, MA, added another 76 donors for a to date total of 8,636 new bone marrow donors in the international registry since January 15, 2007.
Thank you DawnMarie, Joe, and family, cousin Susan and DKMS and volunteers. And a special thanks to Spero and Deanna for their work in Foxboro, MA.
We spoke to Grandma often while out she told us Giovanni was saying "da da" all day. Giovanni loves the phone and when seeing his Grandma on it grabbed it away and listened while Mom said, "No, mama, mama." We arrived home at 12:30 to see baby boy and I'll be off in the morning again for two more drives. One in South Boston with the Local 82 teamsters and another in Bridgewater.
June 8, 2007
Saving Giovanni +80
Giovanni rested well during the night and Mom and Aunt Rosie left for Dana Farber at 5:50 am. Giovanni slept for most of the ride down but once he hit exit 38 he started to get angry and AUnto Rosie had to hold him. We are still looking for a car bed for him. He dosen't like the seat of sitting up. We think its because of the hospital stay in that he was bed ridden most of the time and isn't used to motion.
Giovanni had another outstanding examination. ANC: 6,800, Platelets: 185,000, Weight: 12,03. We were also informed if his next visit goes well he will be reduced to one visit a week. Again the doctors were pleased with his progress.
June 7, 2007
Saving Giovanni +79
Giovanni enjoyed another day as a baby. He woke up crying, so we just brought him to bed and slept for two more hours. He had another enjoyable day with the family and even sat outside for a while. In the morning he heads to Boston with Mom and Aunt Rosie for his blood work and daily checkup. We hope to be donw to once a week soon. Day eighty is here, and the ten-day countdown is on.
June 6, 2007
Saving Giovanni +78
Today was a remarkable remarkable day. Although Giovanni was up several times last night and early this morning looking to eat more, his day marked great progress. He's letting mom put him down more, assimilating more to the home, and his interactions with his brothers are just amazing to watch.
After we ate supper, with Giovanni on the table to so he could watch, the boys had some ice cream for dessert. I held Giovanni on top of the table sitting with his back to my chest so he could watch the boys. As they ate and spoke to each other and Giovanni he talked back to them, smiled and kicked his feet. While holding him he kept leaning forward and grabbing for a soda can, so I eventually allowed him to grab the can to see what he would do. He got it in both hands and lifted it to his lips trying to drink from the can. He was mimicking table behavior and we all laughed. He wouldn't stop though. He would put it down, pull it back up to his lips and try and get some soda. He finally tilted the can far enough to taste the soda and he was beside himself. He spille dit down his chest, which I cleaned, but the shin ein his eyes as he accomplished this task was remarkable.
This child is a gifted creature. Months in the hospital and he comes home trying to dring a soda. When the boys finished we went to the family room where I layed Giovanni on his floor gym. Smiling and kicking for a good ten minutes while his brothers chased each other around the floor I watched in a trance. His energy was incredible.
I sometimes think back in shame to times during Giovanni's periods of medical crisis when I wondered whether Giovanni would live or if it be more merciful for him to perish given his suffering and his undetermined longevity or quality of life. And now I look at him in amazement as he thrives and progresses more each day. Having lead a life astray I've found my path and Giovanni's become my salvation.
Soon we awake to Saving Giovanni day 79, just 11 more days to Giovanni's first 90 day milestone. July 24 he'll be a 1 year old whose already suffered a lifetime of pain and several years from now he wont even know it.
June 5, 2007
Saving Giovanni +77
Weight: 12.5 lbs
Giovanni has reached his all time record weight of 12.5 lbs. His platelets fell to 189,000, which the doctores say is fine and his ANC came in at 6,170. The doctors are overjoyed with his progress and he may even be reduced to one visit a week in a few weeks. His steroids were reduced, his head ultrasound was clear, and he didn't cry the entire trip in the car. In fact, he even let Mom put him down today several times and didn't cry for her. He's beginning to assimilate to the house, his brothers, his family.
Things are going great. He keeps gaining weight, his disposition is wonderful, his smiles ight up the room, and his giggles are coming regularly. He's making different sounds, turning over, reaching for toys, noticing more and more of his environment, and we are simply relieved and loving life with Giovanni home. Twelve more days and he hits his first 90 day mile stone. We remember when it began and how dificult we though it would be and it was more or less but its almost over and Giovanni will move into the next 90 day period as his blood cells begin to further function as his own. Stem cells... save lives. Call your US representatives and tell then to vote for life. Vote for all the Giovanni's.
June 4, 2007
Saving Giovanni +76
Before reading today's entry, please watch the movie Kate Fancy, a Salem, NH student who organized Salem High School's movement to raise funds for Giovanni and us, as well as raise awareness about Giovanni to her community and nationally in her school's Health Occupation Services Association. She presented the below video Thursday night when the students of the school gathered to recieve their health certificates with family and teachers. Kate was named distinquised student of the year for her work with Giovanni and after her video played there were few dry eyes in the room. Thank you Kate for your compassion, kindness, ambition, and setting the bar to which all students, no all people, in our body politic should aim.
Today was a very special day for Giovanni in that Christina and I were invited by Consul General of Italy, Liborio Stellino, to the Consulate in Boston to celebrate Italian National Day where the Consul gave a speech honoring Italian Americans who honored Italy with their achievements. Giovanni was named for moving to action thousands of Italians from villages across Italy to become bone marrow donors to save his life or the life of another child. Christina and I, too, where identified as Giovanni's parents and applauded for our efforts on behalf of Giovanni. Giovanni is invited to the event next year, and as soon as the doctors clear Giovanni for a trip to Italy he will receive honorary citizenship and be welcomed by a celebration.
Finally, before the night ended, the General Consul, Steffano of RAI, and the Consul General's Assistant Paola Careddu joined Christina and I standing with Italian National and Harvard molecular scientist Elena Levantini--the spearhead of the Italian movement for Giovanni--where the Consul General Stellino said to us: "We have one more formal announcement" at which time Christina said: "Elena, would you please be Giovanni's God Mother." After a moment of silence, in honor, a brilliant smile across her face in a teary reply she said, "Yes," and hugged Christian as the rest of us raised glasses to salute this event. In naming Elena we join the old country with the new and Elena is now charged with teaching Giovanni Italian and his culture. In fact, all of our boys will soon begin Italian lessons.
If we only had one special Greek to take on these same duties for Giovanni we could groom him into the ideal man: a man of action and thought, a philosopher king, within whom he could represent two of the greatest cultures in the world. Indeed, given the grand enterance he has thus far made into this world such a classical education and inculcation would ensure he would also leave this world with a great legacy and a grander exit.
As Giovanni rests in his crib after a day of being a baby he has no idea of his early contribution to society, the number of children who will live because of those he's inspired to join the international bone marrow registry, and he has no idea his path to greatness is being paved as he sleeps.
June 3, 2007
Saving Giovanni +75
Total marrow donors: 8,510
Fifteen more days to go for Giovanni to reach his first 90 day milestone at which time his medications will be further reduced across the board until his system becomes completely self-dependent on its own physiology. Grandma spent several hours with Giovanni while Mom attended a bone marrow drive with Denise Frost at Gunstock sponsored by St. Baldricks a yearly fundraiser for pediatric cancer research. The event added 67-life saving bone marrow donors to the registry and I attended the St. George event in Keene, NH, where we added another 87-life saving donors to the registry for a to date total of 8,510. Thank you donors, volunteers, Rhode Island Blood Center, Michael's Fund, Mark's Motors, Brattleboro, VT, VFW and St George's Church, Keene, NH.
Giovanni was very good for grandma and also for mom when she got home. When I got home a 7:30pm Mom, Adrian and Giovanni were playing on the floor in Giovanni's room. WHen he saw me walk in he started kickig his legs and smiling, sticking his tongueout and waiving his hands around. That's a grat feeling when your child recognizes you.
Giovanni is also fascinated by his brothers. He looks at them, watches them play, smiles at them, touches them and enjoys their touch. After we ate a late supper while Giovanni was in his car seat on the family room floor he watched intently and giggled at I wrestled with his brothers. It's amazing to watch. He's so alert, so alive.
June 2, 2007
Saving Giovanni +74
Giovanni enjoyed the day with Mom while I was at a bone marrow drive in Brattleboro. VT, sponsored by Mark's Motors where we added 45-life saving donors to the international registry. Christine Quick of Franklin, MA, came over in the morning to help Christina with the house work. Taking care of Giovanni is very demanding, so our friends are helping out wherever they can.
Let me open a window for you into Giovanni's daily care: He gets medication eight times a day, gets four 2 oz bottles during the day--orally or in the feeding tube if he dosen't drink it--solid baby food two to three times a day, and at night he gets a constant feed over 8 hours of 8 oz.
So he's getting a total of 16 oz of formula, actually neocate, a highly processed proteen formula throughout the day and night, and two to three times a day he gets one table spoon of Duocal each time he eats solid baby food. Duocal is a powerful caloric additive.
The feedings and medications are two components of his care. Christina also flushes Giovanni's central lines every 12 hours, changes his dressing once a week or more depending on the condition, and we generally retape his nasal feeding tube two to three times a day depending on how much he is pulling at it. He also gets rubbed down with cream three times a day.
And many days when Giovanni demands Mom's attention she can't put him down because he will cry and pull at his feeding tube. He's got it our twice in three weeks. Finally, due to the degree of food he's getting--considering he spent 6 1/2 months in the hospital on IV nutrition and could hold little down before the transplant--the degree of food he's eating is challenging the toleranace of his body and resulting in some very painful bouts of gas or otherwise bowel movements. Some bouts in access of an hour and gas drops don't help. We just try and comfort him as he tries to process the gas or food. Needless to say this happens many times at night and Christina and I--like many parents--have had many restless nights.
Now having stated the above, add that care to the care of a typical infant, i.e., changing diapers, clothes, consoling, washing bottles, clothes, household duties, and two other children on top of Giovanni's care and you have one demanding day for mama. I do as much as I can to help, but now I'm trying to drum up as much work as possible to pay down the debt we've accrued in the last seven month, as well as continiue to organize bone marrow drives so we can reach our 20,000 goal.
Giovanni is, however, doing great and we are grateful to have him home.
June 1, 2007
Saving Giovanni +73
Weight: 11.13. lbs, ANC: 6,630, Platelets: 230,000
What a way to start off the new month. Giovanni's numbers are incredible, the doctors are impressed, and with each good report we take a deeper breath of relief. Giovanni is doing wonderful. He's having a little trouble with his bowel movements but that's because of the amount of food he's eating. He's talking up a storm, touching his brothers, smiling and for the first time he aid daaa dad, but he said it to Christina and Grandma at the clinic. We haven;t been able to get him to repeat it since he's been back.
One low number was his IVIG, or intravenous immunoglobulin, which means he will need a IVIG transfusion Tuesday. That's a four hour procedure, a weekly occurence in most transplant babies, so we are fortunate its Giovanni's first after three weeks home. We are going on Giovanni fourth week at home and his clinic visits are now officially reduced to twice a week: Tuesday's and Fridays, and if his numbers continue to climb we will be reduced to one visit a week. Giovanni is way ahead of the process at this time.
Giovanni also saw the GI doctor today and they are planning on placing a g-tube, which goes through the stomach wall. This will hopefully relieve him from itching his eyes and pulling at his nasal feeding tube. The doctors also say the g-tube provides easier access for medications, allows us to inject any foods he fails to drink, and once some scar tissue forms around the tube it will be much harder for him to pull out.
We have three hopefully large bone marrow drives this weekend and I'm trying to organize some megadrives over the summer so if you have any ideas where we can plan one or want to help plan one please email us at
mguglielmo@helpgiovanniguglielmo.org. To date Giovanni bone marrow drives have added 8,311 donors to the registry, but our goal is 20,000 before the end of the summer. Please help us make this happen.