There is not much to report. Marsh had a quiet but very, very late night so he is still sleeping. The plan for today is “just hanging out and watching to see how he clears the effusion.” per the rounding team. No changes with meds.

Dr Smith has called twice already.

Please keep Marsh in your thoughts and prayers💕

Eight days ago Marsh played outside for two hours and walked .6 of a mile home (the longest walk he has ever taken🎉).

Then we had a great report from Super Smith.

And now we are here in Upstate waiting for results.

The fever keeps returning in the late afternoon and Marsh’s respiratory system is just off. Marsh’s pediatrician Gwen sent Marsh for an x-ray this morning. The x-ray showed what Gwen expected: a pleural effusion and pnuemonia on left lung.

I made contact with Dr. Friedman in Boston. He was optimistic that more diuretic for the effusion and an antibiotic for the pnuemonia with a stay at Upstate will tune Marsh up.

I also talked with Dr Smith. He reviewed the x-ray and called to let us know that it looks like the fluid is compressing the lung but otherwise it is “good.” He also said that he too thinks it could be the pulmonary vein issues but Boston is not accepting patients without known Covid status.

So we wait… Marsh was brave for iv placement. The Covid test, labs and x-rays have not come back. The ekg looks good.

Super Smith stopped by to check in. He suspects pnumococcal pnuemonia but we need to wait on the labs and other tests to help Marsh kick this thing.

Please get those big healthy thoughts and prayers going. We will send them right back when he needs them a bit less.

Sending love and hugs and so many, many thanks 💖

P.S. Covid test is negative

Marsh has developed a 🤞 summer cold/illness that made the weekend really tough.

The good news is Marsh has turned it around 180% from where he was Saturday afternoon.

We are following up with his pediatrician in the a.m. so if you all could please some really healthy thoughts and/or huge prayers, they will be returned when Marsh needs them a bit less.

Hugs and love and so many, many thanks💖

Marsh had his Super Smith (Syracuse cardiologist) visit and it went well.

The echo is good. The pulmonary gradient is up 1.5% to 7mm. Dr. Smith has reached out to Friedman to🤞 kick out cath longer because Marsh is doing so well and because Boston is swamped.

So long as everything’s stable, it is looking like (send a good thought/huge prayer) the cath could be temporarily postponed to the late summer or fall.

Return to Supet Smith in 4 weeks.

If you have a good thought or prayer, please send them Marsh’s way.

Hugs and love💖

Marsh had his pair of strokes following when this picture was taken.

For one so small, he has been through so, so much.

I am so thankful for all of those good thoughts and prayers. Without them I am certain he could not have made it this far. Please keep them coming.

Hugs and love and sooo many thanks💖