Update from the PICU

Jacob has been more alert and aware every day since we last blogged. He's been surprisingly mellow. He's had lots of secretions (mucous) in his lungs, which the doctors say is a great sign that he is healing as he begins to breathe more on his own. When secretions build up the respiratory folks send a small tube down his larger breathing tube to suction out the mucous. The process is tough to watch, as Jacob gets so uncomfortable during suction. But when it's over he's so much more relaxed, breathing easy, and able to sleep much easier. So as much as it sucks (literally) for about 20 seconds, he gets hours of relief. This process also reduces the amount of pressure needed by the ventilator

Jacob goes into surgery in the morning. The procedure was supposed to originally happen in September, before Jacob's respiratory distress got him intubated. The procedure is very routine, and involves the installation of a device called "Broviac" in his chest. This is a small central line that allows for infusions of meds to enter his bloodstream without having to IV him every time he needs them. Because of frequent visits to clinics and hospitals, children with conditions of all kinds get Broviacs installed. When Jacob was five months old he had a smaller type of device put in called a Port o Cath, which served the exact same purpose. The difference with the Broviac is that it has two points of entry, called "lumens". The multiple lumens allow for two separate streams of meds and/or blood products (red cells, platelets) to be infused simultaneously. So if Jacob is getting an infusion of antibiotics, we don't have to pause that infusion in order to give him a transfusion or another med. This will allow for efficiency while in the hospital, and it will save us hours in the clinic when we visit as an outpatient in the future.

After the surgery is done we might be able to extubate him in the afternoon. If not we will do it on Wednesday, but at this point the ventilator is doing so little the PICU doctors want the tube out of him ASAP. Jacob is breathing 30 breaths per minute, 11 of which are supplied by the vent. The oxygen output on the vent is minimal...so basically with him doing most of the work, the surgery is the only reason he's still on the vent at all. After the breathing tube comes out, we will likely spend another day in the PICU for observation and then we go back up to the 5th floor (Pediatric Encology) for the remainder of our stay. How long will that stay be you ask? GREAT question. We will likely remain here through the next round of chemo, which is loosely scheduled for the first week of November. We say loosely because it will depend on how much his marrow is able to rebuild between now and then. If his body is strong enough to handle another round, they will proceed as scheduled. While it's lofty to think we could be home for Jacob's second birthday (December 7th), we'll just be happy to have him up and around, hospital or not. On that note, we have a bunch of physical therapy scheduled once we get back to the 5th floor. Spending weeks in bed is a developmental setback, but with his young body he'll be back on track in no time. We've been doing gentle massage to stimulate blood flow in his legs, but since we haven't been able to pick him up for weeks, he'll need some major love devoted to his back. We have every confidence the PT staff will have him up and around very soon. Right now all we care about is being able to pick him up and hug him.

Thank you all again so much for the kind words, thoughts and prayers. As much of a rollercoaster as this has been, it has been a lot easier of a ride thanks to all of you. We look forward to relaying more positive news in the weeks to come. Much Love to you all...