Teddy was admitted to Seattle Children’s 71 days ago and is currently 56 days post-BMT and on day 49 in the ICU. It has been a long and challenging journey. We have overcome hypocalcemia, seizures, sepsis, acute respiratory failure, infections, a blood clot, a brain bleed, SOS, and several other hurdles. While we are still in the ICU, we feel hopeful that we are on the road back home. It hasn’t been what we expected, and there have been too many close calls for us to ever breathe normally again.

The current goal is to move him out of the ICU and back to the BMT floor, which requires him to be stable from a respiratory perspective. He can have some breathing support, but it must be minimal. The aim is to have him on room air during the day and CPAP at night. Due to the rigidity of his ribs, he will need CPAP at night for the next couple of years until his bones normalize and his anatomy returns to normal.

In addition to his breathing, we need to wean him off his narcotics. To get him through this journey, he was on a morphine drip along with other strong sedatives and painkillers. Currently, he is only on morphine, and over the next several weeks, this will be gradually reduced until he is only taking Tylenol as needed.

Another major goal is getting him to eat again. During this journey, his mouth became covered in sores, leading to a transition to tube feeds. Due to sores in his butt, this further transitioned to IV feeds. Now, 50 days later, getting his gut working again is a challenge. Tube feeds have been restarted a few times in the last several weeks without success, but last week they began a round of steroids to support the feeds, and it seems to be on the right track. He is currently receiving 7 ml per hour in feeds and needs to reach 40 ml to support his body, so we have a ways to go, but we are making progress.

They expect him to remain in the hospital through the summer, with the goal of having him home by Halloween. The next challenge will be getting him through cold and flu season without returning to the hospital. This has been a dark chapter for Teddy, but we are hopeful we are entering a period of rebuilding and finding our new normal.