Playing Catch Up

This is a lengthy post, but read to the end because there is light at the end of the tunnel.

Last time I wrote I told of a family I had met here, and the connection between that family and mine. I mentioned when first writing that post that I was very upset and stressed about some recent events, to the point I couldn't even write about it. Then the Internet went down. Sorry for that cliff hanger, folks.

Wednesday night Parker had the procedure to fix the ripped mesh and the bulging intestines. John and I were both furious because Parker had been in such pain all day. I got a hold of the Critical Care Unit Manager and had a long discussion with her about the nurses who didn't act on my concerns and let it get to the point it was when I showed up Wednesday morning. I also told the surgeon I was VERY unhappy that, even though to him it wasn't an emergency when he saw it Wednesday morning, it became an emergency when Parker had to endure that kind of pain all day and it should have been attended to long before 6:pm.

By Thursday when I wrote, Parker's temp was back up over 103, his heart rate and BP up, and we had back tracked because action hadn't been taken when it should have been! All of this proves how important it is to have a family member, or some sort of an advocate watching out for you when you are in this kind of situation in the hospital.

By Friday things were good, he had a great day. He had a little physical therapy, spent a lot of time "talking" to John, made some progress. Then Saturday we back tracked again. Fever, high heart rate, high BP, belly swollen, fluid retention, the works. UGH!

The squeaky machine gets the oil, and because I had spoken up, we had two great nurses over a four day period of time. Nema, the day nurse, knew better than to sit on this and wait and wait and wait for the surgeon to come see Parker. She called him four times and finally got him here (he was working emergencies at one of the other hospitals, but because of her persistence, when he had a break he came right away).

Turns out the NG tube (up the nose and into the stomach to constantly suction the stomach acids and bile that the stomach produces) got a tiny kink in it and the stuff started backing up. Dr. Garcia replaced it with a new one and Parker almost immediately started to get better.

We were relieved it was something as simple as this, but it also showed me very clearly how fragile the balance is in his body. Just the fact that a normal function ~ producing the acids and bile ~ caused him to tip over the edge like that shows me how far he still has to go.

Sunday was another good day. So good that I actually went to Parker's apartment in the afternoon and slept and slept and slept. Being there at his apartment made me miss him so much. I got up at 5:am and came back in time for the 6:am visitation. He'd had a great night, no fever, heart rate and BP good, no anxiety, slept well, everything.

John leaves to go home tomorrow. He was supposed to leave last Saturday, then Parker got the high temp again and he postponed his return. Parker knows he is leaving, and he also knows his Dad will come back if he needs him. The fact that he didn't leave Saturday proved that to Parker.

I have tried to stay out of their way to give them time alone before John leaves. Also to give myself a head start because once John is gone it will be just me handling everything by myself for a long time. I started taking vitamins (thanks for the recommendation Meridy!) and since I got new shoes my feet are MUCH better, so I am trying to take advantage of the weather and walk as much as possible.

Today Parker got his first drink of water. This was REALLY big news. So big I took a picture of the cup and straw. John was with him and said he has never seen anyone so happy. As my brother Michael wrote, "God's greatest refreshment, still unimproved after all these years."

As of today they have resumed the tube feedings (which bypass the stomach but are meant to get the intestines cranked up and working again before the stomach has to do anything) and he has been breathing on his own since 7:am today. By the end of a whole day of breathing he is exhausted and his heart rate starts t go up a little bit, but each day he can do this he will get stronger and stronger.

My sister-in-law, Lizzie, wisely pointed out to me that while I am immersed in the minute by minute changes, which never feel like enough, if I go back and look at a whole week I will be pleasantly surprises. I remind myself of that all the time, because there are moments when I can't get my head out of what is happnening before me and I feel burdened with bad news. But she was right, and when I get the guts to really go back and process what happened on April 14th and April 22nd (the two days I was told I was losing my son), the little things that happen on a day like today will become even more magnificent.

P.S. The random photos are taken from my walk from the room at the League House to the hospital each morning.

I love you Parker. And I miss you James.