Doc and I have known for the last few weeks that we were rapidly approaching a dead end. Rowan isn’t showing any signs of improving and is instead slowly getting worse.
Yesterday we noticed his discomfort level was much higher. He had turned much bluer and puffier and was working harder to breathe. Despite how heart wrenching it was for us to take him to the hospital, we knew that at this point he needed to be taken in.
We were grateful that Rowan’s primary care doctor was able to get him a bed so we didn’t have to go through the ER.
Rowan is now at St. Francis, receiving treatment for some of the symptoms that he has that are contributing to his discomfort.
After meeting with the pulmonologist today, we feel like this is very likely a lung issue. Rowan has been on a ventilator for a long time in his short life and that can cause lung damage. That is likely a sizable part of the problem. With all of the procedures he’s had, his lungs have likely sustained some CF damage. On top of that, there was a cath Rowan had in March that showed some varying pressures in his pulmonary vessels meaning he might have some narrowing that is causing that too. There isn’t really a fix for these things. Several months (like 6-9 months) with no ventilation and good health might help his lungs recover, but that is not likely a possibility for him.
We are trying some antibiotics right now just in case there is a lung infection. We should see some improvement over the next few days if they are working. We will re-evaluate at the end of the week.
We are going to talk to the palliative care team at St. Francis tomorrow to decide what end of life care looks like for Rowan so we can set up hospice should he need it.
Every time he smiles I start to tear up. I am so proud of him.
Praying
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