Yesterday finally came. The day I have been dreading every since the EP cardiologist gave the very first no response to our question of when can we replace C's feeding tube. With C's heart defects and now her arrhythmia issues including the medications she is on for the arrhythmia, putting her under any sedation at all is extremely risky. Cardiology has been encouraging us to put off changing her tube out until it was absolutely necessary. So, 13 months after C got her very first (and only) feeding tube the day finally came where we could no longer use her peg tube. Yes, C still had her peg tube as placed in June 1, 2010. Fortunately for us, we kept the outside tube extremely long, never cutting it shorter initially. But, as of two weeks ago, we were really running of out length and therefore the necessity of changing her tube.
As you can see for the picture above, the tube for her peg was so short and we were losing more each day. Since we started the blenderized diet we handle the tube so much more than we had in the past and the constant handling was causing much more wear on the tube. Instead of getting a hole in the tube every couple of months we were getting on every week. Each time the tube had a hole, the tube needed to be cut. This picture is from yesterday morning when Kevin used the peg tube for the last time.
C was not at all happy to be back in the hospital. I have no idea why this picture is so small but you can clearly see her expression of "what in the world is that bracelet doing on me?"
Oh my goodness. IV drama and trauma all over again. This poor baby just cannot get a break. Even when I insist and and receive the special IV nurse for C, the nurse still has an impossible time getting a good enough vein in C. Fortunately she only had to poke her twice but unfortunately, the nurses had to bring out the papoose board and strap her down. C is so freakishly strong and she fights, I really think she is more terrified of being held down that she is of any pain associated with the IV. Cannot say I blame her as I do not like to be held down either, but her screaming scares me half to death because all I can think is how stressful this is on her heart. Poor baby was so tired after fighting the IV that she just passed out (it was also nap time). She was screaming so hard and so long that her nose was purple. I rarely ever see C blue or purple. For some reason she just generally has pretty good color, even with her low sats but when she screams, which we do not let her do, she shows us just how sick she really is. I feel so awful having to be a part of the trauma but I really do not want her to go through that without me. The best thing about the IV, the nurse actually got a really good vein and she was able to draw blood through it so C would not have to endure another needle stick to draw blood for the blood work that needed to be done. Or so we thought she would not need to be stuck again.
This would be us, waiting and waiting and waiting so more. Apparently the blood sent to the lab the first time came back with all kinds of crazy things. So, after looking at all the stuff they decided to do another blood draw. I do appreciate the staff being extremely cautious with C. However, to further traumatize her by sticking her again, I am not a fan of. Well, the nurse was able to draw blood off the IV again. Yay! Thanks goodness. But after another hour the lab still showed really skewed numbers. Seriously. Here I am starting to panic because I am thinking I have completely messed up her system with changing her diet again. I am just sick with worry and panic. Well, come to find out, after the third time doing a blood draw, this time with another stick (not off the IV), we learn from the anesthesiologist of all people that the lab messed up the blood work twice. There is nothing off with C's blood work and there was no reason to draw more than the first original sample. I think the anesthesiologist thought we would be furious and in some way we were but what is even more sad to me is that this is the normal experience for us at this particular hospital. Little errors along the way that end up making us wait really long periods of time. I am glad they have not been huge errors because that I would not stand for but I just could not summon the energy to be really angry yesterday. I just wanted the whole thing over and done with so we could go home.