Noon Sunday …
Had some company today (always a nice surprise) and they brought chips and salsa! Gotta love good friends. :)
Hematology came by … we are staying the course of giving iron IV and getting his iron stores up. I LOVE that! Why? Because doctors have been happy thus far with getting his Hemoglobin to around 10. Then they discontinue the iron and hope it doesn’t fall. But we’ve established a pattern that he NEEDS the iron. So I was concerned that they would change the plan when his Hemoglobin is currently 10.8, the highest it’s been in almost a YEAR! But his iron levels when directly measured are always very low. So yay! She ordered the last two doses of iron anyway. I’m a happy camper.
Nephrology came by. Most of you know my oldest son, Jacob, has FSGS (a kidney disorder) and he is followed by a Nephrologist. That one wasn’t available so we went with her partner. But this weekend, Jacob’s neph is on call at the hospital. I like this lady. We’ve known each other for 2 ½ years now so we didn’t have to start from scratch with that, we just had to start at the beginning with Manny and his diagnoses and current situation. That helps a lot.
She is very smart, thorough and caring. She knows kidneys well! She appreciated all my details, the historical data I had and the spreadsheets of the labs. She was drooling over them basically and kiddingly said, “Want a job?” LOL
From the labs and the clinical picture, she agrees he has a kidney disease. She believes he has Distal Renal Tubular Acidosis. RTA has all the symptoms he’s been having that I’ve been asking about for several weeks now! We will not be able to “prove” it via labs because his creatinine levels are false low due to his muscle disorder. His levels will never show high.
She was a bit shocked that none of the doctors seemed to understand that. In fact, they’ve been telling me, “Can’t be a renal issue since his creatinine levels are so low.” But it’s going to make the interpretation of the labs virtually impossible. But that’s OK because they will treat him like he has RTA. What’s the treatment? Close observation of the labs and close administration of the electrolytes! JUST WHAT I HAVE BEEN ASKING AND PRAYING FOR!!! If he weren’t TPN dependent, it would be virtually impossible to monitor close enough. But this is relatively “simple”.
So yay! Go God.
Meanwhile … line …
On Saturday night, The TPA at 7pm didn’t work. TPA at 11pm didn’t work. Doc wants to do one more round of TPA. That’s not standard to do a third but Doc knows just how precious his lines are! So one last ditch effort is warranted. If this works, great. All done. If it doesn’t, we will call IV team to trouble shoot on Monday morning. And then we will call Surgery consult to place a new line.
NOT thrilled at this.
What happened to the line? We have no clue. It worked when I used it from home. The first time they went to use it here, it wouldn’t work. So no one did anything wrong. They didn’t screw up. It’s just one of those things.
Now it’s 9pm Sunday and nothing new happened the rest of the day. There will be a lot of consults tomorrow … Vascular Access, Surgery, Hematology, GI, Palliative Care, Nephrology and they’ll all have ideas that need to be tried. But for the night, I’m just happy to have a little boy who is stable, is peeing and has fluids going in.
1am … Manny’s IV went bad. His arm got extremely swollen. We had hoped we could wait until 9am to get everything done with the IV team … new iv, labs, dressing change, trouble shooting, etc. But it didn’t work that way.
I put out a prayer request. Our nurse called around and the people who felt most comfortable doing a difficult stick were in the ICU. I told them where they had found the extra veins the other day and they were able to get it in on the first stick! That’s huge. It was the least problematic IV stick not done by the Vascular Access team. It’s on his ankle but given that he doesn’t walk, it’s not a huge problem to be there.
He has started his wet cough again. I personally think this is what is going on … he has something in his head that is chronic. He gets on an antibiotic and it clears. When he’s off, it comes back as a post nasal drip type thing that drives him nuts. It gets caught in the airway and blocks off his airway. He can’t get it up or down and he loses his breath. Suction doesn’t quite go deep enough to help. Deep suctioning causes him to bleed (his platelets are low) and then he ends up choking on blood. We have an outpatient appointment with the ENT on Thursday. And why is this happening now? His last round of antibiotics ended on Friday night. Got here Saturday and it’s gone downhill. For now it’s not in his lungs. It’s all upper airway and we’re trying to keep it that way.
I'm going to stop this blog at this point because I know today is going to be a wowzer of a day with lots of details.
So thankful to have you all with me on this journey!