April 30, 2007
Saving Giovanni Day +41
ANC 1,700
Giovanni had a great night with Aunt Rosie and woke up eating like a champ. He's also playing, kicking his feet and flapping his arms. His smiles are now lighting up the room and the nurses are just coming in to get one because he so damn cute.
He's no longer on any growth hormone, his pain meds are nearing the end, and his ANC is still high. Christina and I have to attend a care class tomorrow describing what we must do with Giovanni at home and how to keep him safe. We could be home within two weeks.
I attended a Boston College Giovanni and Friends bone marrow drive in the afternoon that added 120 life saving donors to the registry for a total of 7,596. Thank you Katie and Boston College students.
When I arrived at the hospital I came through Giovanni's doors stating: "Baby boy, Baby boy, daddy's her, give me a smile."
He whipped his head around from Aunt Rosie's lap and gave me a big smile. I walked over to him with his big smile lowering my head and kissed him on his forehead, cheek, head, cheek, other cheek. He giggled and tapped his hands against my head and face. When I stopped kissing him and looked in his face he felt his hands all over my face. He knows who daddy is.
I gently lifted him from Aunt Rosie and hugged him. Placing him on the crib he began kicking is legs, smiling, slapping his arms up and down while I said, "you happy to see me, baby boy, yes, yes you are. Talk to me," and he began cooing. Man, that makes you so happy to see your kid smile after he's suffered so much. He's so happy to be feeling well he just smiles. I love my kid, I want him home so I can lay on my bed with him cradling him in my arms. Day +41 is over and we enter May 1, and day +42.
April 29, 2007
Saving Giovanni Day +40
ANC 1,530
ANC 1,530. Way to go Giovanni. Almost all of Giovanni's IV meds are converted to orals, his pain meds are reduced to 4ml per day and by Friday he will be completely off of the pain meds. He gave me smiles for breakfast, we played, I sung to him, and he ate half a bowl of bananas and cereal. He later drank 2 oz of juice and I left to attend a bone marrow drive in Watertown at the Greek Church. We added another 49 people to the registry for a to-date total of 7,476-life saving bone marrow donors. Giovanni is moving people. He is doing so well for the first time in months I feel he's safe. Yet I know we still have a long road ahead of us but at lease he is comfortable and happy. That is a great feeling, my son, our son, is not suffering.
April 28, 2007
Saving Giovanni Day +39
ANC 1,620
Giovanni is still bringing in a high 1,620 ANC. Another great day for Giovanni. Eating, sleeping, playing with his toys, throwing smiles around for all and saying goodbye to his friend Alexis Eddington who came all the way from Virgina to visit Giovanni. The rest of the day was spent hanging out with mom until dad arrived to take the night shift.
April 27, 2007
Saving Giovanni Day +38
ANC 1,330
I wrote this wonderful update of Giovanni, then went to save it, the page crashed and I lost everything. This Microsoft Office Live product in a word SUCKKKKKSSSSSS. Now I’m going to write the entry again better.
Giovanni slept well all night only getting up once and going back to sleep once he got his binky. At about 6:20am he decided to get an early start on the day and woke me up crying lightly. I got out of the bed making it to his side in two strides and as my face cam in view he lit up with a smile that just melted me. What a feelin’, what a feelin’. Looking down at this powerful child whose suffered so and he’s smiling at me. This is my child, my produce, my natural duty in life’s order, my completeness.
I gently placed one hand under his neck and the other behind his head and slowly lifting him to my lips kissed him. Then I held my cheek to his closing my eyes and felt that love a parent feels for a child when it fills and warms you. Holding him to me I drew my strength, charged myself to continue this journey and then laid him down getting another smile.
I changed baby boy and then fed him some cereal and bananas. He ate half the bowl, the first time I spoon fed him in his life, a wonderful feeling. We were talking as he ate, he opening his mouth waiting for the next spoon and I wiping his face clean each time. I fed Adrian the same way. I could never let food stay on his face either, wouldn’t want food left on my face.
I watched Giovanni looking up at me kicking his legs, flapping his arms, smiling away, and chiter chattering. I put his favorite CD in—a mix of songs made for Giovanni and given to us at a bone marrow drive for him from a woman named Alli Walls. And grabbing Giovanni’s hands I sung:
You are my sunshine, my only sunshine
You make me happy when skies are gray
You’ll never know dear how much I love you
Please don’t take my sunshine away
The other night dear as I lay sleeping
I dreamed I held you in my arms
When I awoke dear I was mistaken
So I hung my head and cried
He watched smiling as I sang and I melted for the third time this early morning. The doctors came in late morning for rounds.
How do you think he’s doing?
No, no, you tell me how he’s doing, I replied.
Wonderful, were very impressed, he looks great.
Five of these great doctors standing around the crib smiling down at Giovanni and looking at me. (And I’m thinking to myself, I’m forever indebted to these people, their colleagues, the hospital and its staff for saving my Giovanni).
He’s eating well and tolerating the food, no gas, diarrhea, vomiting.
Yes, I said, do you think his intestinal issues are correcting?
It’s possible; we still need to monitor him.
When I discussed this with Dr Pie before the transplant knowing the defective A cells were falling off the intestinal villi and flattened I asked it the new A cells could possibly stick to the villi thus supporting and correcting the distorted and flattened villi and she said possible but not probable.
Well it may be happening, still to early to be sure
It would be great if he got a break, I said.
Yes, they all said.
I was then told that Giovanni was scheduled for an MRI and cat scan next Friday to clear him for release to the McDonald House where he will have to stay for a minimu of one week. Incredible, in just two weeks--a six and a half month—emotional and life struggling journey will come to an end and we will begin the next yearl long journey of Giovanni’s life.
We will leave Children’s Hospital--the best in the world--thanks to the dedicated work of the doctors and staff blessed with a beautiful baby boy who might otherwise have taken angel wings like his friend Jack. And with everything we’ve been through, the happiness, relief, stress, fear, terror, we’re lucky because many parents leave this hospital childless, broken and destroyed to continue their lives like amputated spirits a piece of their heart excised to never be returned.
If you’re ever feeling bad, thinkin’ your life sucks, your troubles too many just sit in the lobby of Children’s Hospital for ten minutes--for as long as you can take it--and recognize, digest, realize how blessed you are and how trivial your troubles are, how humbled you are, as you watch the army of children and their parents march through the lobby to learn their destiny, deal with their medical challenges and don’t forget to think about all the babies and children who die in the rooms above you. It’s humbling.
April 26, 2007
Saving Giovanni Day +37
ANC 1,480
Giovanni and mom had a great night together and Giovanni had another great day. Two of his IV meds were changed to oral meds in preparation for his departure, and the GI team has been notified to do a consult on Giovanni's intestinal tract.
He ate banana and rice cereal for breakfast, 60cc from a bottle for lunch, and carrots and apple sauce for dinner. He's starting to push the bottle away. We are working on a new site as I write so please bear with me for a few days. I also have a bunch of new Giovanni pictures with smiles and other faces.
Also we added another 115 people to the registry for a todate total of 7,291. Giovanni drives will be saving some lives soon. Its just a matter of time before I start posting on the front page that "Giovanni drives have facilitated x-amount of bone marrow transplants.
We were told today that next Friday we will learn if we are going directly home with Giovanni or to the McDonald house for a week. This week has been wonderful for Giovanni. Next week Giovanni will also get an MRI to make sure there is no infection hiding anywhere in his body and he will also get a cat scan to make sure the cerebral vessels are no longer swolen. His fontenal, however, is no longer protruding which is indicative of less pressure in his head.
April 25, 2007
Saving Giovanni Day +36
ANC 2,440
Besides the booming ANC let me tell you what else Baby Giovanni did today. He ate 35cc at 6am, at 10am he had 10 baby spones of bananas, at 11am 30cc, at 2pm 40cc, and at 5pm had ten spones of pairs that he washed down with 60cc. Grandma spent last night and the day while I attended the Northern Essex Community College, MA, bone marrow drive where we added 109-life saving bone marrow donors. Jennifer Pushee, the Director of Save Giovanni for NY added 52-life saving donors at Hudson Valley Community College in NY. Our grand total is now 7,176.
Mom just came in to take over for Grandma, she spent the day with Alex and Adrian, took them to see Meet the Robinsons, played games with them during the day and just dropped them off with their father where they will spend the rest of school vacation.
Giovanni has been very active today. He is giggling, talking, smiling, kicking his feet. Sticking his tongue out at me again and as grandma says chitter chattering all day. Giovanni was in the Boston Herald today, on CBS Channel 4, and in the Eagle Tribune tomorrow. The news is poised for Giovanni's release, both national and international. I also have many new pictures to post. We are working with a new web designer to fix the site so please be patient. As soon as Giovanni gets home we will be doing live video stream of Giovanni so everyone can see how he's doing.
His ANC is high even though his growth hormone was reduced, and we hope it stays high. The better his system functions the sooner he can get off house arrest. And one further update for the day is Giovanni is off the oxygen. If I could just get him to state the war rally espoused in Shakespeare's Henry V that would be the end of a great day. But I'm thrilled to accept the above delineated and I guess I can wait until he's 5 to announce Henry V.
April 24, 2007
Saving Giovanni Day +35
ANC 1,720
Giovanni's ANC is going down. Now we need to watch where it settles and monitor how his body will naturally proliferate his cellular system including the white or t-cells, b cells, and NK or natural killer cells. We are still hearing talk of discharge but his is dependent of one: the expiration of one series of antibiotics ending in 8 days, and two: his eating habits and the function of his digestive system.
April 23, 2007
Saving Giovanni Day +34
ANC 3,570
ANC 3,570. The doctors said his ANC would be reduced by half today, not so. Giovanni is defying the projections. He slept all night for Aunt Rosie and awoke with smiles for her. He is doing well. Christina and I are on our way to visit, but first she took Alex and Adrian to Chuck E Cheese. Alex is out of school for the week. The boys have to get some quality time with mom.
I lost my construction business while in the hospital, but the Teamsters Local 82 in South Boston offered me some part time work to bring in a little money. My first day is May 4.
Giovanni had a great day. He drank a bottle with 25cc and than another with 30cc plus three baby spoonfuls of banana baby food and for the first time in his life passed a hard bowel movement, which is a big deal for a baby whose had chronic diarrhea since birth. Its still early, but his eating seems to be doing better than before the transplant. His pain medication was decreased again as well as his growth hormone and his skin condition is improving. In fact, so is his disposition. He is regularly sucking on his binky now, beginning to play with his toys, smilling more, and has begun to coo again. A high ANC in the morning would be great. We welcome Day +35.
April 22, 2007
Saving Giovanni Day +33
ANC 4,090
Giovanni slept well until 4am when he decided he wanted to start his day. He refused to go back to sleep so we spent some quality time together. I held baby boy in the chair rocking him back and forth and he just stared up at me the hold time looking with those big, mezmarizing, blue eyes in complete comfort.
As I held him, proud of his strength, I wondered what he was thinking looking at me. Was he looking up at me as proud to have me as a father as I to have him as my son. Was he looking at me and drawing strength from me as I found my strength in him. His eyes spoke to me with a complete sense of safety knowing I would give my life to protect him and there was nothing in this world I would not do for him. It was one of those parent moments in which you feel a sense of completness, accompishment, as if you've attained your natural purpose in life.
Those big blue eyes eventually closed and I was able to put Giovanni back in his crib, shower, and leave for Boston Commons where Spiro of the 50s Diner was able to plead our case before the Hellenic College and Greek Federation to secure a place in the Greek Independence Day Parade and a Save Giovanni and Friends Bone Marrow Drive on the Common.
Ten of us marched down Boylston Street with the congregations of Greek churches, Associations, and ancient fraternal societies such as the Order of Perecles as thousands of cheering Greeks lining the streets. While walking we could hear people saying "Giovanni, that's the little baby in the papers, on the billboards," Demetri and Olga from Olga's kafe stepped into the street and kissed me and many other people Christina and I met through Greek sponsored bone marrow drives said hello and yelled "Giovanni" from the sidewalks. We handed out cards telling people to follow us to the Commons to save a live and I yelled all down Boylston "follow us to save a baby, save a life, join the international registry, you wont regret it for the rest of your life, save a life, become a bone marrow donor."
At the end of the route we poured into the Commons walking to our tent and through the day Giovanni inspired 103 people to join the registry and become a life saving donor.
While back at the hospital Giovanni ate 15cc with no problem, some cereal and even some banana baby food. He is feeling much better as his skin heals. Aunt Rosie is with him now getting her hugs and even smiles. He looks good. More pictures are coming. I can feel home getting closer.
April 21, 2007 Saving Giovanni Day +32
ANC 4,420
Giovanni and mom enjoyed the night together and he even let her sleep only waking twice. In the morning his spirits were high and his ANC reached an all time high of 4,420. His skin condition is still serious, but he still had the character to play with mom, giggle and smile. In fact, for the first time in his life he had a little cereal and some banana baby food. Not much, but some, which was a treat for him and us. His narcotic medications are being reduced 1ml every other day.
From his crib Giovanni inspired 48 more people in both East Providence, RI and Fredericksburg, VA to join the bone marrow registry adding thus far a grant total of 6,855 life saving bone marrow donors to the registry since January 15, 2007 through 50 bone marrow drives around the country and in Italy. Saving lives from his bed, he has no idea what an impact he's having on the world.
The doctors tell us given the reduction in Giovanni's growth hormone medication his ANC count will drop by half as soon as Monday. I'd love to see Giovanni defy that projection. Day 32 comes to a close with good news, Giovanni is more comfortable than yesterday, and he had his first taste of cereal. In the morning 30 people will march in the Greek Independence Day Parade in Boston holding large posters of Giovanni stating Save Giovanni and his Friends. At the end of the parade we are holding a huge bone marrow drive in the Boston Commons. If you haven't registered to save a life yet, please come and become a bone marrow donor. You wont regret it for the rest of your life if you give life to another.
April 20, 2007
Saving Giovanni +31
ANC 2,910
Giovanni and me stayed up most of the night. He is very uncomfortable with his skin condition and the withdrawals from the narcotics. His ANC is 2,910 and the reduction in his growth hormone has begun. Indeed, many of his medications are being reduced.
We're starting to get information to prepare us for our transition home: It's quite shocking. We're looking at a year at least of repeated visits to the hospital, minimal visitors in our home, monitoring Alex and Adrian for any and all potential sicknesses that could be fatal to Giovanni, no preschool, they can't have any friends over, can't attend school when any sickness is going around. We will essentially live incommunicato for a year. We're told it will be harder than the hospital stay. To put it simply, when the shock sets in it settles over you like a concrete blanket.
Wow, its almost like we're about to conclude this unimmaginable journey and you feel this incredible ecstatic relief, this happiness knowing your child survived, like you've arrived on the mountain top and clearing the crest start running down its face welcoming the end of the deadly climb only to look up in awe--mouth agape--to see an ominous mountain shadowing over that we must scale before going home to live our lives. Again, the journey begins. Its not over for Giovanni, not us, not anyone following this hand of agony dealt by life.
As you can see from the below pictures,Giovanni is suffering from a serious skin condition from the effects of chemo, medical tape, skin torn from his body from removing tape, and skin separation. He's also experiencing some withdrawal effects from his narcotic pain medications. But mom is getting some smiles, he's resting for her--kept me awake all night--and as soon as his skin heals I'll be posting some smiles. Day +31 is done, +32 is here.
April 19, 2007
Saving Giovanni +30
ANC 3,570
Giovanni is still ringing in those numbers 3,570 today, and the doctors will begin lowering his gowth hormone and monitor his numbers. They say his ANC will drop, but they must stay above 500. I'm sure Giovanni will not disappoint us. He slept well for Grandma last night only waking twice for his binkey and fell off to sleep again. We had his feeding tube removed last night, but he's still not up to eating completely from the bottle so the doctors want to place it again. We are on our way to the hospital now, so we will listen to their concerns about his eating and see where we go from there. We, of course, want him on the bottle again to test his intestines and see what he can handle. Also, this brings us closer to going home, which we desperately want.
One further side-effect we're seeing from the chemo is Giovanni's skin is blistering and falling off his entire body. It looks like his whole body was burnt.
We'll proivide a further update later, with some new pictures.
April 18, 2007
Saving Giovanni +29
ANC 3,930
THREE THOUSAND NINE HUNDRED THIRTY. Even though Giovanni kept mom awake all night, he still had enough energy to produce an ANC of 3,930. One more day above 2000 and Giovanni's growth hormone will slowly be reduced at which time his ANC levels will drop, but must still stay above 500 to continue progressing acceptably through the transplant process. If his levels drop too far the growth hormone will be increased.
Giovanni was getting a bath when I spoke with mom and he's getting ready to have his central line placed back in his chest. He's had a temporary one in the groin or femoral artery that will be removed. The doctors waited to place the permenant central line in his chest because of the two infections he fought and to keep any non-self devises away from his heart to eliminate any possible infection in his heart. He will be out of surgery in a few hours and back in his room.
Everything is going well this +29 post-transplant day. We are, however, continuing the bone marrow drives to find a match for Giovanni if ever needed and just as importantly to fill the registry for all the other kids who die waiting for a match. If our government doesn't prioritize saving our childrens' lives in lieu of the hundreds of millions of dollars given to other countries and pork belly projects that line the pockets of political cronies then we must take the action to save our children. Please attend a bone marrow drive and save a life.
Giovanni went into surgery at 1:30pm, and didn't get out until 5:00pm. The first line the surgens placed didn't draw, so they had to remove it and place another line on the other side of his chest. He is back in his room now and somewhat comfortable but hungry. Apparently, however, the surgens forgot to remove the temporary line from Giovanni's groin area so the surgens must now come to Giovanni's room and remove it. Okay, so they don't perform 110% all the time, but close to it.
Day +29 has progressed well, Day +30 will give us a 2000 ANC plus and begin the decrease of the growth hormone paving the way to Giovanni going to the McDonald house and then home.
April 17, 2007
Saving Giovanni +28
ANC 2,610
TWO THOUSAND SIX HUNDRED TEN... 2,610 ANC. Yeah, that's right, something to jump up and down over, 2,610 ANC. Two more consecutive days of over 2,000 and the doctors will begin reducing Giovanni's growth hormone medication that's giving him that turbo boost and then monitor his ANC levels to see where they go. As long as his ANC stays over 500 Giovanni could be lookin' at early release for good behavior. And guess what else? He let out the first giggle in three weeks today when his brother Alex spoke to him over the phone, and his smiles are coming back in spades. We are some happy people today.
With respect to Giovanni's intestinal issues, he ate 5cc of neocate from a bottle for mom with little trouble and no gas. This is our next hurtle to overcome.
I drove Aunt Rosie back to NH this afternoon to have a birthday diner at the Common Man with Uncle Mick whose 39 again (for the last ten years). Happy Birthday Uncle Mick from Giovanni and family.
Tomorrow, +day 29, Giovanni's gonna some in strong again over 2000. You heard it hear first. Lets go baby boy.
April 16, 2007
Saving Giovanni +27
ANC 1,290
Giovanni slept well for Aunt Rose last night and woke up with a 1,290 ANC and smiles for everyone. He's lost the scab on his lip and is once again sucking on his binky and playing with it. He look's really good, he's very lucid and alert. He's following Christina and me around the room again and after two weeks of ups and downs its wonderful to see his personality coming back.
His blood cultures continue negaitve and his other labs are all good. The central line will most likely go in Wednesday. The week is starting well, Danielle ran the Boston Marathon for Giovanni and a contingent of us, including her mother and father, were waiting for her at the finish line. Day +28 is looking good.
April 15, 2007
Saving Giovanni +26
ANC 1,570
Repeat after me: ANC 1,570. That's right. Giovanni's absolute neutrophil count was 1,570 today. That three times what the doctors like to see at this point in the transplant process. Giovanni slept well for Grandma last night, he was well most of the say--we believe he's teething--which will let us know if Giovanni will suffer from another NEMO effect, conical teeth. He is having some trouble adjusting to the feeding tube and the neocate itself. Its going right through him. This, also, is another NEMO effect we are looking at to determine its degree. Will the intestines correct themselves with new blood cells, will he live with cholitis, or will he need a small bowel transplant once his new immune system has fully established itself. Giovanni has many more battles to fight.
We held five Save Giovanni and Friends bone marrow drives this weekend and added 227-life saving bone marrow donors to the registry. Other numbers are coming in from several other drives. We will break 5000 by tomorrow.
Giovanni could possibly be home in 6 weeks. That would be nice. Driving 200 miles a day since November 26 is getting tiring. We want Giovanni home.
April 14, 2007
Saving Giovanni +25
ANC 1,350
Giovanni's ANC is 1,350..... added 56 people to the registry today. We're over 4,800, almost at 25% of our goal. Giovanni is well, Grandma is enjoying her time with him. Another day of negative blood cultures. I'm exhausted. I have to sleep.
April 13, 2007
Saving Giovanni Day +24
ANC 990
Sorry it took so long to post the medical update, but I was at the expo all day trying to rally people into joining the registry with Danielle and the Rhode Island Blood Center. From 12 to 6 we did 21 donors. One can't quantify life and although one person could save a life, we were disappointed with th Boston Marathon crowd.
Giovanni is, however, back on 6 West with his New York Grandma Judy. She's getting her hugging time in, and Giovanni as we all know loves to be hugged. His ANC is 990, another negaive day of blood cultures, and he's starting to suck his binky again. The mucositis is nearing an end, but Giovanni is still having some pain and his pain drip was increased again to 11.5ml per hour. We are once again feeding Giovanni again although its via a feeding tube but it bottle food as opposed to IV nutrition, which will continue but we hope to transition completely to foods at which time we will begin to learn whether the cord blood transplant will correct his intestinal tract defect or if he will need a small bowel transplant. He is also on oxygen but just to help him and its only set at one.
All in all Giovanni is doing fine, he looks much better, and he even gave us a smile today. Day +24 is over. We're hoping for many smiles on day +25.
April 12, 2007
Saving Giovanni Day +23
ANC 1,040
Yes, yes, the kid is on his way out of ICU back to the transplant floor, 6 West, in the morning. Thank you much to the pure professionalism and care of the ICU staff. They are simply remarkable. Note, however, that while there we saw many many children sicker than Giovanni and this beautiful little girl was called to heaven to serve as an Angel. We send our heartfelt sympathy to the parents of that little girl, recognize the struggle of all these children and wish their parents the strength necessary to sheppard their children through these trials of life. Indeed, Giovanni is sending many bone marrow donors to the registry and many children will live because of those people moved to action by the movement Giovanni continues to stimulate.
Giovanni is no longer on the high pressure oxygen but still has nose oxygen that can be managed on 6 West. He also has a feeding tube. His ANC was 1,040 today and that's still remarkably high this early in the transplant process. We've been advised the number will go up and down. So long as it stays over 500 it is good, but when it levels off it should be between 1000 and 1500.
We have some pictures of Giovanni fighting to get the oxygen out of his nose and the feeding tube. The doctors continue to comment on his strength given everything he's been through.
Today we strike an emotional high, the coaster slowing to a crawl and we exhale a breath of relief, the tension evaporting into the air, yet a gloating fear lies in the shadows like a reaper with his sickle raised to strike only that blade is a phone call, lab result, a microscopic bacteria. Stay positive, yes, stay positve. That is a colloquy easier said than done. Words conveyed to comfort, those spoken to oneself to sooth and cope, but reality has a way--not always--but sometimes of obliterating theory, idealism, hope.
With Giovanni--or any parents in this situation--the reality of chronic medical illness is minute by minute, hour by hour, day by day, with a teeth grinding hope of just week by week and the ideal of month by month yet each and everyday of your child's life is cherished and selfishly held to one's chest or breast as a priceless gift. We've lived like this since November 3, 2006, and we--like all of you--will live like this as long as necessary for the love of a child is unconditonal, boundless, selfless.
Day +23 is over, day +24 is here. "What is past is gone and irrevocable, and wise men have enough to do with things present and to come." Francis Bacon
April 11, 2007
Saving Giovanni Day +22
ANC 1,380
ANC 1,380!!! Yes, even the doctors were impressed. While fighting two infection, water in and around his lungs, on breathing assistance he still grafted that high. Incredible or a miracle, you make the call. Giovanni is officially engrafted and now we just need to make it through the next year of possible grat versus host disease which can present manu obstacles and even be fatal, but we will take one battle at a time.
During the night Giovanni's nasal canyon was increased from 3 back to 8, and now its at 5. He still needs a few days in the ICU to gain some strength and get through the final stages of mucositis. Furthermore, we got our third day of negative blood cultures. No more infections. A new central line will be scheduled shortly. Mom and Aunt Rosie are on their way from NH. I'll keep everyone posted on the progress today.
Giovanni lost both his head IV one after the other so an IV tech was sent for who was able to get one line in his arm after two sticks. Within an hour that line was blown, so the ICU doctors put a temporary line in Giovanni's femoral artery in the groin area.
The doctores had no time to wait for an operating room because they need constant IV access to Giovanni for his pain medication and the various other medications he needs through the transplant process plus the daily blood draws he needs to check the levels of medications in his blood, blood cultures to look for infections and his daily ANC count. The doctors did the entire procedure right on Giovanni's bed in the room, and I was allowed to stay in the room and watch as the line was placed.
I got to tell you, the care at Children's Hospital only get better and better from floor to floor. Once you think the care is great, they top it with even more impressive care. I can't rave enough about the care of the CNAs, the nurses, fellows, residents and doctors. They are great and I salute them.
April 10, 2007
Saving Giovanni Day +21
ANC 770
ANC 770, second consecutive day of negative blood cultures for both infections, and Giovanni's breathing is getting better. If Giovanni's next ANC is above 500 he will be officially grafted. Then we must closely monitor him for graft versus host disease (GVHD) for over a year. Yes, over a year. So Giovanni has a long fight ahead.
The c-pap oxygen mask didn't last very long once Giovanni woke up. He fought for two hours to remove it and finally got his way. It was replaced with a nasal canyon. His air pressure assistance or the volume in which air is pumped into Giovanni's lungs to expand them was initially set at 8, late morning reduced to 6, and by the evening to 3.
Giovanni has once again overcome several obstacles. Its just incredible. Tony, you could not have picked a more appropriate song for Giovanni's movie, "Eye of the Tiger," because he just keeps bouncing back.
On my way to the hospital today I stopped at my friend Bob's tattoo parlor, Creepy Creations in Londonderry, NH, and had him tattoo Giovanni's name on the back of my shaven skull. When Christina saw it she chased me around Giovanni's crib several times until she realized it looks pretty good and simply concluded I'm crazy about my kid and I'll do whatever it takes to help and save him.
Day +21 is over, day +22 will bring better news.
April 9, 2007
Saving Giovanni Day +20
ANC 520
Giovanni had a rough night and was transferred to ICU this morning. The good news is his anc came in at 520, but the transfer was due to his breathing issues. He also lost the IV in his arm. The ICU doctors feel Giovanni is working to hard to breath and the mucositis in his upper airways is the cause. They are going to put a c-pap on him, which is an oxygen mask that goes over the face and provides the needed pressure Giovanni needs to breath and allow him to rest some. Christina and I are on our way to the hospital.
Giovanni is now in the ICU with a c-pap machine that is allowing him to work less to breath. His lungs are still in good condition, but wet, and he has a second infection. He is in critical condition but he'll bounce back from this just like he's come back from every other set back. Day +20 is nearing its close, Giovanni is still fighting.
The roller coaster of terror continues. This is the time when you dred each phone call, each lab, each examination, a groan, the twist of his body, the unknown. Because each piece of news could be a gift of relief or complete devastation. You don't know which lot will be dealt at any given moment and that is the true horror of helplessly watching your child struggle for life. Truly, if one could describe hell I think we're living in it at times like this and when Giovanni is doing well its a mixture of bliss shadowed by fear. Fear always in the background luming over your shoulder with its brother terror a shadow above waiting to rush in and engulf you. To shake you to your core, weaken your knees, and send chills through your entire body meeting in your throat a choking knot threatening to consume you with uncontrollable emotions and set you down like a hysterical child. Just look at Giovanni, how much more most he suffer? the
April 8, 2007
Saving Giovanni Day +19
Happy Easter: ANC 300
Giovanni had a relatively good night only requiring suction to remove mucus from his mouth several times that is rising from his respiratory tract. His oxygen versus co2 exchange is getting better moving us further from the pneumonia threat. And most importantly his absolute neutrophil count is 300 meaning he's continuing to graft or accept his new stem cells from the cord blood transplant.
This is a perfect example of the ecstasy and terror of the transplant process. You wait for grafting in fear of host versus graft disease or simple rejection and both can be fatal. You get a good anc number and you feel great relief, you take a breath from terror and even some comfort and then regress bact to your perpetual state of fear. Then you get some bad news and contract in fear progressing to terror as you consider the fatal implications. The roller coaster continues.
Bad news is the blood culture is now positive meaning the new line must be removed. The fact that the bacteria took over 24 hours to grow indicates his body is not so saturated with the infection and that the antibiotics and new white cells are working to fight the infection.
Giovanni is still working very hard to breath and still facing a possible transfer to the intensive care unit. He's still retaining water in and around his lungs, and his extremities are very swollen. But his lips are getting better and soon he'll be able to suck on his binky again. He finds much comfort in that and hasn't been able to enjoy the binky because his mouth hurts so bad.
Giovanni is still struggling against the various conditions his body presents and we'll continue our vigil by his side until his rapid breathing and sedated status is replaced with his smiling face, cooing vocals, and animated hands and feet.
Giovanni was just scheduled for surgery. The new line is being removed and several IV's will be placed for 72 hours to give Giovanni the opportunity to fight and defeat the infection. The down side of the IV strategy is that he will blow numerous IV's over the next 72 hours requiring repeated IV replacement and the pain that each IV will entail as they search for new access.
Giovanni's line was pulled and an IV placed in his arm with a second in his head. His oxygen/co2 exchange is good, no blood clots were found in his leg, and while his breathing is still labored he has yet to tire thus fending off ICU once again. We hope that three days without a central line will allow the antibiotics and Giovanni's growing white blood cell count to kill the infection. He is resting comfortably with Grandma, I ate his chocolate Easter Bunny for him, and Christina and I will return to his side in the morning anticipating a higher ANC. Day +19 is closed for business and we enter day +20 with relief and one tough kid. Thank you everyone, Happy Easter, be well. Giovanni and family.
April 7, 2007
Saving Giovanni Day +17
ANC 80
After five days of positive blood cultures Giovanni has triumphed over the serious infection that threatened his life. One more battle won. He's still under close supervision by the Intensive Care Unit, yet continuing to hold his own. The concern is his labored breathing and that he may become exhausted and stop breathing deeply thus allowing pneumonia to cultivate from the water in and around his lungs. His gases still show good air v. co 2 exchange and that is the key to keeping him out of ICU. He still has oxygen in his nose, his mucositis pain so serious they added a .5 drip activated by push button plus he's still getting the 10ml per hour.
His other medication have also been increased for pain control. Its terible to watch him flailing his arms and crying, trying to push mucus from his lip, his lips so swollen and sore we must repeatedly apply vasoline, and sometimes we can't even hold him because he's arching his back and trying to wiggle out of our arms. He's at the height of pain from the mucosistis and on the downward countdown for the chemo side-effect.
His chest x-rays have shown a reduction in the water in and around his lungs, the swelling in his lips and face has decreased, and he slept through the night for mom. We are playing classical music, lullabyes, holding his hand, rubbing his stomach and everything else we can to let Giovanni we are here with him, feel his pain, and are doing everything we can to travel this road with him. Its encouraging that he looks for us, recognizes us, and still find us comforting absent periods of extreme pain for him.
The rollar coaster of terror continues. The highs and lows of hope and despair, fear and terror, stress and relief are just exhausting and emotionally devastating. Its almost surreal as if it can't be happening yet it is and each day we roll out of bed placing our feet on the ground to contine our 100 mile journey to Giovanni's side begging Giovanni will continue the fight and brighten the rest of our lives with joy and the life of a normal child that he deserves. He's suffered a lifetime in 8 long months. Our poor child, why, why, must he suffer so. I have no answers, I just want it to stop.I want Giovanni to be well and come home so we can begin our lives anew as a family. I'm tired, so tired, but can't despair or be weak. Giovanni needs Christina and I with all of our strength, unconditional, never ending until he overcomes.
Day +17 is coming to a close, no ICU, relief, underlying fear begs reprieve from the next test, exam, x-ray, sonogram, EKG. Terror awaits in its place. Never in my life have I felt such fear, Never do I hope to feel it again. And once again I mentally repirmand myself for my selfish pity--me,me,me--my pain and fear when my son lays near struggling for life and I can't even take his place.
April 6, 2007
Saving Giovanni Day +16
ANC 110
That's right, you read it correctly: absolute neutrophil count is 110--up from 90 yesterday--and Giovanni is still struggling in pain from both infection and the hight of mucosistis. No fever, the ultrasound of Giovanni's heart has yet to come back with respect to infection, and his breathing is stable. His heart rate last night drop sounding alarms but the staff responded immediately and raised it. Grandma was shaken last night to see the state of Giovanni and apprehensive about handling him with the new line coming from his leg and an additional line from his head. The lines make it difficult to change him, cradle him, or move him around because you are always afraid you're gonna move too far and pull a line from him.
Its late morning now and Giovanni is sleeping. When he's awake its from the pain. Our baby boy is suffering yet he continues fighting through the obstacles life has thus far laid at his feet. We're waiting for yesterday's blood culture to come back and hoping it negative.
Giovanni's blood culture came back positive for the fifth day. If it comes back positive again tomorrow the new line in his leg must be removed. Sonograms of Giovanni's chest show water in and around the lungs. Another medication was added to remove the water. The test also showed one of Giovanni's heart valves thickening most likely from his high blood pressure, but the doctors say that will so away once then get his blood pressure under control. In addition, Giovanni's pain drip was increased from 5ml to 10ml.
He's at the height of side-effects from the mucositis and his chest is full of the shedding intestinal and respiratory systems. This has interferred with his breathing requiring oxygen from time to time and his struggle to purge the mucus from his body. His lips are so sore and swollen its painful to look at and I can hear how he feels from the moaning and crying, the thrashing and flailing of his body and arms.
Giovanni is still fighting. Day +16 is closing and day +17 coming.
A subsequent afternoon chest x-ray showed water in and around Giovanni's lungs. The intensive care team has examined Giovanni and feels that if his labored breathing continues he's in jeapardy of pneumonia. In an attempt to assist Giovanni's breathing the ICU team has placed oxygen in his nose, which he fought for almost an hour before settling down. Mom calmed him and Zia Elena was by her side with us before I headed back to NH with Grandma. A second x-ray was taken at 11pm and we are waiting for the results. He is under close monitoring and will be immediately taken to ICU if any conditions present a harm to Giovanni.
The x-ray came back showing a reduction in the fluids inside and around Giovanni's lungs. He is now on Laysix to reduce the water retention and it appears to be working. Giovanni is fighting ... still. Its now day +17.