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 lungs 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
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.
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.
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.
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.
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
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.
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.
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.
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.
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, 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.
See latest Giovanni pictures from photographer Michael Blanchard: New Pictures