A lot has happened and not really happened since I last posted.
My lil guy is now 4 months. He is doing wonderfully. His dialysis is working very well. We haven't had any problems with Fibrin or any signs of infection. His labs have been going up and down on different things. His blood pressure was remaining high, his phosphate a little high, low iron, low hemoglobin, so his meds were increased or a new one has been added on. He has a total of 7 daily meds and 1 (2x weekly). He also has a nebulizer now w/ Xopenex. I give him this whenever his breathing seems really labored. Usually at night before bedtime. Other than that he is doing really well.
He has reached 13 lbs 9 oz. Yay, Tino! We have 9 lbs to go for transplant.
He still has the nj tube which is working out well for him. The only thing is now that he is getting a little older and stubborn, he keeps trying to pull on it. I have a feeling he will be pulling it out sooner than later. The doctors have asked if we want to put a G tube in but we are still a little hesitant. We don't want to compromise his peritoneal dialysis. We really don't want him to be on hemodialysis again. It was really rough on him. Granted he was a teeny baby but he still is my lil baby. We'll see what happens with that.
Tino also has a hernia and the Urologist is reluctant to correct that for the same reason of compromising his dialysis. We are to just watch it for now and make sure it doesn't become irritated and red.
We are hopefully going to start seeing Physical and Occupational Therapy. We are waiting for authorization right now. We will go to PT for his Torticollis of his neck. We are doing stretchs to try and loosen it up on his right side.
For OT this is more for sensory and his fine motor skills. We are working on sensory of his mouth and his grabbing for objects. He still hasn't wanted to hold a rattle. He does like his hands in his mouth and his lil satin blankey he has. We are working on it.
This is all for his health updates. Other than that he is a happy baby who brings smiles to our faces everyday.
Santino on one of his good days
Enjoying my binky!
Mommy time
This is the life in mommy's arms!
Daddy time
Checking out my daddy
Snoozing after bath time
Sponge baths are good!
Free of ventilator!!!
This is what I look like w/out edema
Daddy holding Tino!
Daddy changing Tino's diaper
Baby Tino in my arms!
Santino's eyes are open
Isn't he just the cutest!!
Big yawn!!!!!
Tino w/ hemodialysis catheter
not a pretty thing, poor baby!
In the Children's NICU
Santino after they placed the peritoneal catheter
Hi Yvette, It's so great to hear that Tino is doing so (relatively) well! Logey also had 2 hernias and they were repaired individually while on pd. We never had to miss a therapy. They were inguinal hernias if that makes any difference. We were never even admitted during either of those surgeries. On the g-tube, that's a hard decision. It is great to have one though Logey may be looking at getting his out soon if we can increase his fluids. Logey got his pd cath and g-tube and mediport all at the same time about 3 weeks before we started PD.
ReplyDeleteI pray that you guys have a very easy time until transplant. Transplant is amazing and honestly you quickly forget some of the hard times. How are your other kiddos adapting to life with a little one on dialysis? how are you adapting to the strain of all of it?