Caden is beyond DONE having people poke him, wake him out of a dead sleep for blood draws, and simple things like replacing his leads. Just DONE. Now he doesn't even let us touch him. We went down for the Echo and EKG yesterday and we were determined to get through these without being sedated. He did ok with the Echo, but freaked on the EKG (the simplest test) of everything he has had to endure so far. Again, HE IS DONE.!!! Caden wouldn't let anyone touch him so we left with 14 leads still stuck to his skin. He continues to get stronger, is walking more, but unfortunately not really eating. He manages to get a little nutrition through a vanilla boost in the morning and we nurse spaghettio's through the day, but the options on the menu are so limited. We have grilled chicken (negative), veggie burger (negative), roast turkey (negative), turkey meatballs (negative), waffles, egg beater eggs….he just isn't a fan. I think some kiddo's might like these foods but we were so focused on having him gain weight for the fontan he got used to some pretty high fat foods (per doctor's orders), now we take them away (so cruel….poor guy). Today the blood draw indicated his sodium levels are too low to send him home. All these diuretics to keep the fluids off the chest are also throwing off other things including his sodium. He is at 122 and it isn't safe to send him home at this level. Dr. Neibler told us seizures could occur so we still try to find the right balance of sodium through these awful big sodium tablets that they are giving him, with his limited food intake, and fluid intake. It is indeed a balancing act. Dr. Peter Frommelt came in and told us his Echo looked great, his oxygen sats are around 89 % (nice to see the high 80's) vs. the mid seventies. I'm working on getting baked lays on the menu for him……under 3 grams of fat….more sodium…he might just be on his way to having a steady diet of baked chips for breakfast, lunch and dinner. (C.Q…….new avenue for sales….insert smiley face here). We pray for a good level of sodium on the next blood draw and for Caden to progress with his strength, endurance, and food intake.
Love to you all - Melissa and David
Sounds like Caden had a little bit of a rough day yesterday. I hope you can get the ok for the baked lays, they taste pretty good. I keep praying that he gets to go home soon. Love you all.
ReplyDeleteAunt Ginny
We will pray for eating progress and good sodium levels! Prayers that God will continue to give him strength to endure the good drs. & nurses who are trying to help him! Keep going Caden...you can do it!
ReplyDeleteLove, Lori
So cute!! Love the pictures....We will pray for the sodium levels and you to find the perfect food that a 3 year will like. So glad that the good news keeps coming.
ReplyDeleteI knew his diet after surgery was a concern. Praying for a good solution.
ReplyDeleteLove the pic's, so darn cute. He looks wonderful. I can't say that I blame him for being done with all of this. Im sure he doesn't understand all of what is happening to him but he is a strong and brave boy. Praying for sodium levels and finding some foods he will like with little fat. Keep going Caden :)
ReplyDeleteLove,
Dawn V.