Below you can read about Giovanni's latest medical battle. To read from the beginning scroll down to the bottom of the page and read your way up. Week of April 21-25, 2008 Giovanni is gaining strength, and has become very aggressive. He's having a hard time keeping his food down, has blood in his stool, is still agitiated from withdrawals, and will remain on methadone for two months. His Dana Farber check up Friday went well, he is 19.6lbs, 28 1/4 inches long, and hIs vaccinations are scheduled for June. Otherwise he is playing and sleeping, very mobile, and we hope he will walk soon. April 18, 2008 Friday So I was wrong, completely wrong. Giovanni was up at 3am for play time. And I was his toy. Yep, up in the crib to 7:30am wrestling a toddle with some pretty incredible strength. We played, cuddled, threw everything out of th crib to hear it go bang, untangle dwires/tubes, and rested together. I had no problem with it. I slept the night before and he gave me a two hour respite before running me till morning. I got another 1 1/2 before waking at 9am. Giovanni will be off the fentanyl Saturday, and if he continues to breathe well can go home Sunday. Release us, yes we love Children's Hospital, especially the valets who helped us with drop offs, pick ups, and parking, but we want to go. Especially Giovanni. His brothers miss him and we need them to tire him out so we can sleep. (;-). April 17, 2008 Thursday Giovanni gave mom a run for her money last night, but had a wonderful day sleeping and playing. The doctors continued decreasing the fentanyl and he is off the nasal oxygen. He is still on blow by oxygen while sleeping. Giovanni could be home by Saturday or Sunday if he continues breathing well. I relieved mom at 11pm and prepared myself for battle with baby boy: he fell asleep at 1am. Yes, I'm gonna sleep tonight. Well, maybe not. He has a tendency to pop up like Chucky the psycho puppet and leave me leaning over the bed in a semi state of sleep like riding a New York subway. April 15/16, 2008 Tuesday/Wednesday Morning I replaced Aunt Rosie at 4pm and we played. If you've never had to wrestle a 20 month old to sleep who has a pic line in one arm, an IV in another, three vital lines, feeding tube in the belley and a nasal canyon for oxygen you haven't lived. When he starts rolling around tangling all those wires and tubes again and you have to chase after him rolling him back, standing him and untangling that mess you realize baby against man is just no match. Giovanni against me just aint fair. He fell asleep at 1am and woke up fresh at 4:30am for an unscheduled play date with me until 7:15. I ran to the bench for a few hours of shut eye and now I'm doing the update: 11:09am. Giovanni is doing great. He wants out of the hospital. His fentanyl is being reduced twice a day now and he should be off the oxygen by morning. More great news is that Giovanni's heart exam came back clear. The NEMO could have damaged his heart but the doctors where more concerned that last years chemo therapy caused heart disease. At rounds this morning I asked the doctors if they could elininate one of Giovanni's IVs to remove the arm board so he can crawl. I'm glad mom's taking over tonight, she's tougher than I. Good luck Alex at your first baseball game tonight.
April 14, 2008 Monday Monday: Giovanni enjoyed playing with Aunt Ropsie all day. His fentanyl was lowered again and will continue each day until he can come home. His white blood cell count is down to 13,000, and the doctors are happy with his progress. April 12/13, 2008 Saturday/Sunday Giovanni had a very good day, was alert and responsive. He's still going through withdrawals but the narcotics are slowly being reduced. Aunt Rose spent the day with him, and Anna came to vis tas well as Elene. Mom took over for the night. Giovanni slep well until about 4:30am and was awake until 6:30am Sunday morning. Aunt Rose wants to come back late this afternoon and stay with Giovanni overnight again. Giovanni has been sitting up for mom and even ate some blueberry Yougurt last night. The nurses tryed to take him off oxygen this morning to see if he can breath on is own but his oxygen vital fell to 93, so they are just turning doen the oxygen support he has. April 11, 2008 Friday Giovanni was released from Intensive Care today and is on 6-West, the floor where his transplant took place. He is continuing to struggle through drug withdrawals, will be observed for 3 to 5 days, and hopefully return home by mid next week. He is still very restless, found it very amusing ripping an IV out of his head, and it's simply incredible to watch the nurses try to sedate him when he just fights it and stays awake. He dosen't want to sleep. Aunt Rose is watching him for the night while mom and I get some rest. Aunt Elena was also with him for sevearl hours. April 10, 2008 Thursday 10:50pm Giovanni rested until 12pm this morning. His white blood cell count came back at 32,000, down 20,000 from 52,000 last night. He has an infection either from his pic line or the docotrs believe it may be from his white cells reacting to the RSV in the lungs. The cultures are still out but we should have a preliminary finding tonight. He is still laboring to breath but starting to cough up the remains of the RSV from his lungs. Also, he had two nebulizer treatments today. His lungs are moving air well, but the doctors describe what they hear as "junky." I had to come home and get a full night sleep so Mom took over for me with the one and only Aunt Rosie. That's right. She's back at baby boy's side as she was for months duing his 1st stay in Boston Children's Hospital. Giovanni's withdrawals are going well. The time line for 12am tonight is off. They are too concerned with his labored breathing and high heart rate. He is still on the methadone and his meds are being slowly reduced. We are told Giovanni may be home by midweek. April 9 & 10, 2008 Wednesday/Thursday Thursday 12:19am: Giovanni had a horrific Wednesday night withdrawing from the narcotics that sedated him for the past few weeks. He broke out in a rash and could not be comforted. He just rolled and kicked and moaned in agony. The doctors couldn't give him any further drugs for fear it would suppresss his respiratory functions. He was trying to crawl out of his skin. All he wanted was to be held but that only soothed him for a few minutes and he was pushing away. At 4:30am he finally fell off from exhaustion, and was awake a 6:30am Thursday morning. On a brighter note Giovanni was released from one intensive care unit to another and classified as critical but fair. When we got to the new floor he again rolled around unconsolably until 10:30am when Mom arrived and was able to console him for most of the day until about 6pm when it all started again. Giovanni is now on methadone to withdraw but his heart rate shot up to between 180 and 211 until nearly 11:30pm. He spiked a fever, 102, cultures were taken, and an IV put in his head to run the methadone. I believe his pic line is infected. Giovanni has fallen off to sleep. By 12am Friday night he will be completely off narcotics. We still have tonight to get through though. I spoke too soo: Giovanni woke up at 12:20am and the phone rang for the nurse. It was the lab telling her that Giovanni's white blood cell count is 51,000. This is very bad, He has an infection, and two antibiotics have been started. The bone marrow transplant team has been notified and they are discussing the blood count. Giovanni is sleeping again, 12:40am. April 8, 2008 Tuesday 2pm: Giovanni had a tough night dealing with medication withdrawals that kept him in a coma for 12 days. He only rested a few hours at a time before waking, and was nearly inconsolable. In fact, and this may be a hard visual for your, but I crawled up in the crib to hold baby boy. I didn't quite fit, my butt was hanging off the edge, and I almost fell out, but we parents do what we must for our babies. We made it through the night and then I wrestle him all morning until he finally fell asleep at 1:45 but not before the doctors had to twice sedate him and back step a little on his withdrawals. The withdrawals are tought, Giovanni can't get comfortable, he keeps trying to roll over on his belly, which he can't do because of all the lines, and his arms are restricted from one IV and one pic line. The doctors are still impressed with is recovery: He is moving air well, his x-ray is better than yesterday, and they are converting some of his drugs so he can be transferred from ICU to the transplant floor. He could potentially be home by this weekend. That which does not kill us only makes us stronger April 7, 2008 Monday 4pm: Giovanni is doing great, as most of you know the ventilator was removed yesterday. Giovanni did very well with his breathing last night and his morning x-ray is even better than yesterdays. He is slowly being withdrawn from his meds, and the doctors feel he must remain in ICU for two more days for observation before being moved to the transplant flood where he will be observed for a few more days before allowed to go home. Mom is hanging with Giovanni and he is trying to speak, but he still has a very sore throat. He is, however, talking a lot of "dada," which Giovanni uses to ideintify both Christina and me. She is having a hard time trying to keep him in the crib. He is trying to roll over on his stomach and get up on his hands so he can crawl but one of his arms is boarded and he can't bend it, which in turn angers him. When the doctors come in the room he rolls over on his side and starts crying. Last Monday the doctors were telling me Giovanni could die, and now he's trying to jump out of his crib. The kid is incredble. That which does not kill us only makes us stronger." Nietzsche April 6, 2008 Sunday 8:30pm: Giovanni is off the vent and resting in mom's arms. He is still disoriented, and now going through withdrawals from the medications he was on. That will take several days to a week depending on how well he does. His vital are good, and his kungs are moving air well. Today's chest x-ray showed improvement over yesterday. He is still in ICU, and will remain there for several days unless the transplant team is willing the monitor his withrawals. It's been a long but pleasing day. To watch his eyes open and look to us each with question, then around the room at the machines, sounds, and personnel that filled so many days of his past was heartbreaking. His look was one of surprise and fear and back to us for comfort almost pleading "why am I here bring me home." I can't imagine how he felt or what went through his mind, but it will soon be over and he will be home and hopefully his future will spare these walls, these machines, and most of all these pains and days in which his dances with death will end Sunday 10:40: Giovanni let out his first smile and looking at Christina said: Dada. Our baby boy is back April 5, 2008 Saturday 6:30: Giovanni is coming strong: The vent is off tomorrow. He's still sedated but further taking command of his respiratory system, his vent numbers ranging from high 5's and over 10, and that's enough to remove the vent. His femoral line is being pulled, his cultures are negatve ruling out any infections including pneumonia, and his white cell count is going down. He's opening his eyes for the 1st time in a week and holding our hands, but he keeps breaking through the sedation so they have to keep increasing the morphine, which means extra days in the hospital to reduce the meds and minimize withdrawals. We are very happy parents and if Giovanni keeps making these gains he'll be home next week. April 4, 2008 Friday 4:10pm: Can you say "You go boy." Giovanni moved from the paralytic drugs to sedation smoothly. The ventilator is only providing pressure and Giovanni is breathing on his own. That's right. He's supporting 60% of his respiratory fsystem and the rest is the ventilator, which is being weaned down. This kid is incredible. He was also taken to have a pic line placed in his arm so the femoral line can be removed. His while cell count is going down, his cultures are negative, so its believed his cells are reacting to the RSV. He's still in ICU but the doctors are impressed with his strength. They feel he needs the ventilator for a 3 to 4 more days but they didn't know how well Giovanni would transition so that predition may be lowered. Christina and I are some very happy parents. We just want him off that vent so we can kiss 'em and hug him. April 3, 2008 Thursday 6:15am: Giovanni just had his morning x-ray and we hope it shows at least modest improvement. Throughout the night his ventiltator setting have not been adjusted up or down, but he's continuing to show an elevated heart rate between 140 to 150, and they would like to see it 50 points lower than that considering he is in a paralytic sleep. Will upday everyone again once the results of the chest e-ray return. Thursday 1pm: Giovanni's x-ray is better, but he has some time before he's well. He's engaging in spontaneous breathing over the ventilator, which is good, and his vitals, with the exception of his heart rate, are good. The doctors are no longer concerned with pneumonia, a great relief considering it could kill him and, indeed, four days ago we were advised he could die given his lung condition and the potential for pneumonia. But Giovanni is going to live, the kid is defying death again. He truly has a purpose here. He is still looking at several days on the ventilator before he can sustain his own respiratory functions, and it will take him several days to recover from this trauma of these. His white blood cell count is climbing, 24,000, indicating he may have an infection. Possibly the femoral line or reaction to the RSV in the lungs. They are testing. That which does not kill us only makes us stronger." Nietzsche. April 2, 2008 Wednesday 5am: Throughout the night Giovanni's vent settings have been increased bcause once again he is not expelling enough CO from his body. He's going backwards, not forward. This is attributed to the RSV. We are waiting for the x-ray team to shoot Giovanni's lungs for evidene of improvement and in the general a clearer picture indicating a reduction in the RSV within his chest. Wednesday 10am: Giovanni's is still in a fight for his life. His chest x-ray has improved little, but the left lung that suffered the collapse is better and they no longer feel pneumonia is a danger. The doctors feel Giovanni could be on the ventilator for up to a week given no setbacks. He is, however, moving forward but slowly. Wednesday 9:10pm: Giovanni is stable and moving forward slowly. Three days ago the doctors sat us down stating Giovanni could die given his lung condition and the potential for pneumonia, but things are looking much better now. He will remain in a paralytic condition on a ventilator for up to a week but at this point it looks like Giovanni's defied death again. We hope for a better chest x-ray in the morning and that the settings on his ventilator are moved further down. He was allowed to come out of his paralytic state for about 10 minutes which we believe was enough time for him to feel and hear Christina,myself, Grandma and Aunt Lisa holding his hands and talking to him. That which does not kill us only makes us stronger." Nietzsche. April 1, 2008 Tuesday: 4:30pm Giovanni has responded so well to the ocsilator that the medical team has transitioned him to the ventilator that previously could not provide the respiratory support he needed to live. He is still in serious condition, but now moving forward. He's moving air through his lungs and oxygenating well on the ventilator, which he could not do before. We still need some clear x-rays, but he definitely in a better situation than yesterday morning. We cab also touch and kiss him again, and play his music. They say that even though he's paralyzed he can probably hear us. He is also sustaining all of his vitals. Tuesday: 12:27pm Giovanni's chest x-ray came back better. His lungs are completely expanded, but the left lung is still darker than the right and the lungs overall are still infected with RSV, which is indacative of the clouding in the lungs. Giovanni is doing much better on the new vent, his vitals are very good, they are actually weaning the pressures the machine is instilling in his lungs, they are staying expanded, and appropriately oxygenating, which was not occuring with the previous vent. We need to see improvement chect x-rays before we can say Giovanni is moving forward and downgrade his status. We are, however, at a point where he's getting the required respiratory support and his lungs can begin to rehabilitate from this point forward barring any setbacks. We thank everyone for the continued support and prayers. That which does not kill us only makes us stronger." Nietzsche. Tuesday: 2:14am Giovanni is once again in a fight for life, yesterday was yet another battle he's fought in the war for life and I can only hope that the master of his destiny is friend, not foe. Giovanni is currently stable but serious and could die. A prospect that destroys me yet one I must acknowledge for that is our reality. As I sit here contemplating the events of yesterday, realizing how close my boy neared death, I'm completely exhausted yet cannot sleep. Instead, I think about the days he's blessed my life. the smiles shined on my day, and the happiness he's showered upon me. I've faced death, many times, and have known no fear like that of watching my child descend the road towards death. Giovanni is stable, his vitals are good, albeit an oscilator is a great factor in that result, the doctors feel he's going in the right direction, but the morning x-ray of his chest will confirm or dispute this position. For now, I simply love my son with all my strength and in that vain say to all love your children every day, cherish moment, and hope that no days such as these ever shadow you. I await our morning x-ray and hope the sun shines on Giovanni for Christina and I love him with every fiber of our beings and we're further honored by all of you who support us and love our child, Giovanni March 31, 2008 Monday morning: I lay to rest last night optimistic that Giovanni would progress so the ventilator could be removed in the morning but awoke to disappointed. Instead, I had the most terrifying experience of my life. At 6am I awoke to screaming alarms and an army of consummate medical professionals saving Giovanni. While positioning Giovanni for a chest x-ray his intubation tube dislodged from his lung, he de-sated, and the alarms went off. the tube was removed requiring that Giovanni be re-intubated. I can just imagine what the medical team thought as I whipped open the curtain shielding my sleeping space to see a bald man with a tattooed chest yelling “What the *#@% happening.” And I watched: Giovanni was laid across the bed his head tilted back with a respiratory therapist bagging Giovanni with oxygen, a doctor holding his head preparing to intubate him, another squeezing Giovanni’s esophagus to open his throat, nurses checking his lines, his attending nurse removing liquids from his stomach with a syringe to prevent any aspiration, and a support team outside the door. Giovanni was intubated, his ventilator initiated and Giovanni’s vitals slowly came back. Once he was situated on his bed I was able to hold his hand, stroke his, kiss him and lay my head on his chest. A long breath, this kid is remarkable. It was a terrible experience but I watched with confidence as the staff worked on Giovanni like no other in the world because Boston Children’s Hospital is the best in the world. Giovanni is alive because of the people who work here, I am indebted to them and grateful beyond words for saving Giovanni. Again: "That which does not kill us only makes us stronger." Nietzsche. Monday: 9:23: Giovanni's x-ray shows that his lungs are getting worse from the RSV as well as aggravated fthe morning incident during which he aspirated. See Medical Update Monday: 1:05pm: Met with the medical team. They are very concerned for Giovanni, the ventilator is not doing the job, he's in jeapordy of pneumonia, and the hardest thing to hear: even death. Giovanni's lungs are not getting rid of the CO fast enough, his left lung is worse than his right, and switching him to the new machine poses problems with de-sating. He's fighting for life again. Monday: 7:55pm: Giovanni was moved from the ventilator to an oscillatory ventilator, which will keep his lungs completely expaned. He move from one to the other without a beat and his numbers are great. His latest lung x-ray although relative are better than the last few. He is in serious but stable condition. He will require this machine for a minumum of two days before being moved back to the ventilator and then weaned off completely. The next few days are critical. Hopefully the night will be uneventful and the morning x-ray will be better. Forward, we need to move forward from here. That which does not kill us only makes us stronger." Nietzsche. Monday Morning I lay to rest last night optimistic that Giovanni would progress so the ventilator could be removed in the morning but awoke to disappointed. Instead, I had the most terrifying experience of my life. At 6am I awoke to screaming alarms and an army of consummate medical professionals saving Giovanni. While positioning Giovanni for a chest x-ray his intubation tube dislodged from his lung, he de-sated, and the alarms went off. the tube was removed requiring that Giovanni be re-intubated. I can just imagine what the medical team thought as I whipped open the curtain shielding my sleeping space to see a bald man with a tattooed chest yelling “What the *#@% happening.” And I watched: Giovanni was laid across the bed his head tilted back with a respiratory therapist bagging Giovanni with oxygen, a doctor holding his head preparing to intubate him, another squeezing Giovanni’s esophagus to open his throat, nurses checking his lines, his attending nurse removing liquids from his stomach with a syringe to prevent any aspiration, and a support team outside the door. Giovanni was intubated, his ventilator initiated and Giovanni’s vitals slowly came back. Once he was situated on his bed I was able to hold his hand, stroke his, kiss him and lay my head on his chest. A long breath, this kid is remarkable. It was a terrible experience but I watched with confidence as the staff worked on Giovanni like no other in the world because Boston Children’s Hospital is the best in the world. Giovanni is alive because of the people who work here, I am indebted to them and grateful beyond words for saving Giovanni. Again: "That which does not kill us only makes us stronger." Nietzsche.
March 30, 2008 Sunday: 3pm Giovanni is still on the ventilator, and the RSV has spread into his right lung taking its course. Giovanni's heart is spiking to 174, and the team feels his blood cells are dry, so they are transfusing him. They are giving Giovanni a holiday and leaving him on the ventilator another day to treat the RSV. His left lung has yet completely expand from the collapse, but he's moving air well and his lungs are getting suctioned daily.His paralytic drugs will be stopped today to test how Giovanni breaths on his own. Please donate blood and become a bone marrow donor. Finally, I continue to rest on Nietzsche for Giovanni: That which does not kill us only makes us stronger. March 29, 2008 Saturday: 1:00pm Giovanni is still ventilated. At this point, the swelling in his throat has reduced enough to remove the tube, but they are having difficulty determining how much oxygen Giovanni is producing versus the input from the ventilator. Consequently, they are installing a larger tube to seal up the leak, gauge Giovanni's actual oxygen contribution, then turn off his paralytic meds and as he revives lower the vent to see if he can sustain his own respiration. He is moving air through his lungs well, his vitals are excellent, and his CBC's are great. He's gonna pull through this in a few more days, maybe a week. I've always rested on the words of Nietzsche with respect to Giovanni's strength: That which does not kill us only makes us stronger. March 28, 2008 Friday afternoon: 12:15pm Friday afternoon: The doctors removed Giovanni's paralytic and as he awoke tried to remove the ventilator but he wasn't able to sustan enough breathing to fill his lungs, one of which is partially collapsed. The medical team will try again in the morning. He's heavily sedated and paralyzed, but did hold my hand. I like to think he knew I was with him until he went under. His vitals are good, as well as his CBC. Friday Morning: 8:45am Giovanni's left lung is still colappsed so he will remain vented until the lung is clear. The hospital is reducing his reliance on the vent and pushing him to breath more on his own. His vitals are good, as well as his blood cell counts, but to be safe he recieved an IGG infusion. He's comfortable state of sleep, and his lung will be x-rayed throughout the day. He could remain in ICU for one or two more days. The most dangerous thing to him is pneumonia Friday Morning: 6:30am If Giovanni's chest x-ray returns clear this morning his parayletic drugs will cease, he will slowly awake, the airway tube and ventilator removed and he will begin his own breathing. If he does well his femoral line will be removed and he will be moved to 6 West, the transplant floor of Children's. March 27, 2008 Late Thursday afternoon update Hi everyone, it's Carolyn again! Giovanni has tested positive for RSV and is still heavily sedated. He is still under the paralytic and will be until probably tomorrow. They installed a line into his groin to have IV access as he had issues with the other line yesterday. As more comes in, I will keep you all posted. He has fought many other battles that he has overcome and we are positive that he will conquer this bump in the road. Thursday Giovanni update
Giovanni had a restless night. He's still intubated and on a ventilator. His left lung is still collapsed from the Lakes Region Hospital procedure, and a number of tests and cultures are still out. We are waiting to see if Giovanni has some type of a respiratory infection. If there is no infection we are waiting for the swelling in his throat to abate so the tube can be removed and he can begin breathing on his own. He is definitely a tough kid. Every time he wakes from sedation he struggles to get lose, starts gagging from the tube, his vitals spike and he must be sedated again. This is bad because he keeps irritating his throat. In fact, they are now using paralytics on him to paralyze his body so his throat can heal. He is down to one IV access so they are installing a pic line today.
March 26, 2008 Wednesday Baby Giovanni developed a cough on Monday, and early Tuesday morning was rushed to Lakes Region Hospital. He was intubated, they collapsed his left lung, and he was subsequently airlifted to Boston Children's Hospital where he is currently on a ventilator in ICU. His vitals are stable, and he is sedated with his arms secured to the bed because when he wakes he tries to rip out his ventilating tube. The doctors are hopeful this is a minor setback but taking every precaution to Save Giovanni from any discomfort. We are hopeful he will be well soon.
March 26, 2008 This is Carolyn with a quick update for all of you. I will post more when I get more information! Giovanni was rushed by ambulance to Lakes Region Hospital in Laconia at 4:30 am. Mom was up with him all night. He was having a hard time breathing. Once at Lakes Region, they decided to intubate him and in the process, his left lung was collapsed. He was later life flighted back to Boston Childrens Hospital with what they think is croup. What would be a normal infection in a normal child has been devastating for Giovanni. Any infections in a child that has a weakened immune system, like someone who has had a bone marrow transplant or cord blood transplant, is potentially deadly. He is still intubated and heavily sedated. They are hoping today to pull the breathing tube and see how he does. He will probably stay sedated today and try tomorrow to start waking him up. |