It's a James thing

Last night, our nurse, Katie, was trying to help us get to bed by a decent time by doing James' midnight vitals and his blooddraw a little bit early. It's a good thing we started early.

For some strange reason, his port (through which he had been getting bicarbonate fluids to bind with and flush out the methotrexate) decided to quit working. Katie couldn't draw blood out and she couldn't push fluids in. She got the charge nurse, who has 22 years of experience and she couldn't get anything to move either. They re-accessed his port (which is a wee bit traumatic for James) and, since the first needle was bent, we hoped that this would correct the problem. It didn't. They then tried to put some blood thinning medication in (called TPA). One nurse (I don't remember who did what at this point), pushed so effectively, that the sub port blew out and there was saline and diluted blood on the sheets. Oddly, it was clear there were clots in the blood that came out and in the tubing.

Two nurses tried to get IVs in and neither would work. Finally we called the emergency transport folks and someone was available to come help. He was very kind (everyone was very kind and very apologetic through the whole ordeal) and was able to get an IV near James' right hand. The only trouble was that James uses his right hand to 'talk' with sign language. Poor little guy was just crushed.

In addition to this, the first vial of blood they sent down to the lab clotted and they needed more.

Thankfully, we finally got settled at about 3:30 this morning. I was so glad I was able to speak with the nurse manager about nursing care continuity for James yesterday. She explained some staffing challenges they have been having, assuring me that that was still not an excuse for the lack of continuity in James' care and I asked if we could please have familiar nurses for these last couple of days as we prepare to go home. She worked it out so that we have our primary nurse today and tomorrow. I was so glad to see Maggie open the door this morning!

We all slept late and folks were just scratching their heads about the whole issue.

Today, Maggie tried again to reaccess the port. A tiny bit of blood pulled back, but the access leaked blood at the skin level, so they removed the access. Two more unsuccessful attepts at IVs were made and finally we called emergency transport for help again. They were tied up with a call so the alternative for now is a special bicarbonate solution running through his g-tube. It is VERY important for James to flush out the remaining methotrexate from his system.

We did enjoy the brief time without strings. After dancing in the hall a little, we made our way to the playroom and found some mats stacked like steps. James crawled all the way up (three steps) on his hands and needs. He was a determined little bug and he made it! I am so proud of him. He also played in an exersaucer and then we went back to the room to get hooked up to g-tube fluids and watch signing time videos.

His yeast-y rash seems to be spreading and the wound care nurse (who oversees the care of James' ostomies) insisted we begin using an antifungal powder instead of the cream because she says the powder helps dry James up and make the environment less hospitable to yeast. The trouble is that James sweats profusely. I am also concerned because all of his feeds have some level of sugar, which, of course, feeds the yeast.

One of our favorite nurses, Jenn, told me that it is becoming more apparent that James is going to right his own script for the next couple of years.

In spite of all this, there is still hope of going home tomorrow. Please pray:

1. that James' body would flush out the methotrexate and get down to the right levels before his blood test this evening at 7 p.m.
2. that his yeast would continue to do better with the powder (so far there seeems to be a difference).
3. that it would be safe for James to go home for the weekend (Thursday, Friday, Saturday, Sunday) and wait to return on Monday to fix his port and continue his treatment.

I'm afraid that if do get home tomorrow, I'll be so tired that I'll sleep the whole four days! :*)

Thanks for checking in on us. Love, Stephanie