Noah's Story
Chapter 5: Boston Children's Hospital (ICU)
08/01/17 cont: As soon as I sat down to eat my lunch, I got a call from Noah’s nurse saying that I should probably come back to the room. So I packed-up my food and headed back. When I arrived, Noah’s room was FULL of people. In just the few minutes that I was gone, Noah was having a lot more difficulty breathing. One of the team had to hold his head/neck, to keep his airway open. Noah had developed one a common side-effect, called mucositis, and this was making it difficult for him to breathe.
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The transplant team decided to move Noah to the ICU, where he could get more help with his breathing troubles. The ICU doctors tried a few different CPAP/BiPAP masks - it was difficult to find a mask that would work because he has a tiny nose and lower-jaw, and because he was a mouth-breather.
Room full of staff addressing Noah's breathing trouble
Moved to the ICU
ICU, CPAP/BiPAP
ICU, Room #1
ICU, CPAP/BiPAP
ICU, CPAP/BiPAP
When the CPAP/BiPAP options didn’t seem to help, they decided to intubate and sedate him. This would not only to help him breathe, but would help his body heal from the chemo and the transplant.
Intubated & Sedated
Noah was intubated and sedated for a long time – almost a month – because he was overloaded with fluid when it came time to start weaning the ventilator. They needed to get a lot of the excess fluids off of him, so that his lungs wouldn’t fill with fluid, and so that he’d be able to breathe on his own when the tube came out.
In the ICU, there is one nurse per patient. Noah’s nurses would shift his body occasionally, to prevent bed sores. They would also “bathe” him and do anything else they could to help keep him comfortable.
Noah was such a fighter, they had to keep increasing his sedatives because he would “wake up” a little, but they didn’t want him too awake, because he might try to remove the tube. I didn’t touch him a lot during this time because I was afraid of waking him. I also tried to whisper or not talk at all, because sometimes that would cause him to stir too.
Peek-a-boo!
"Ahhhh!"
Finally getting cuddles!
On 08/21/17, Noah was finally able to come off the ventilator. They used the “blow-by” to make sure he was getting enough oxygen, but he was doing fine breathing on his own, and I finally got to hold him again! The next step to getting Noah out of the ICU and back to the Transplant floor, was to wean him off as much of the sedative and pain medications as possible, until it was manageable by the Transplant nurses.
"Ahhhh!"
Finally get cuddles!
Hearing Test
6 Months Old
He still needed a little help breathing at night, and the ICU doctors said they could try the CPAP, or they could re-intubate. They decided to try the CPAP, and it took a while to find a mask that fit properly. They decided on the full-face mask as the best option. Unfortunately, he couldn’t leave the ICU with that mask, so they continued to look for another one that would be acceptable off the ICU floor. Fortunately, he only seemed to need it at night – not for naps during the day.
CVL to Port
On 09/03/17, Noah had surgery to change the central line (CVL) to a Port-a-cath (Port) and on 09/06/17, he was transferred back to the Transplant Floor.