A few days ago, I received a letter from Mateo's gastroenterologist, Dr Annie Terry, from Doernbecher Children's hospital. It stated that Mateo's sodium levels were off, and that we need to get him in for some labs. This means that we get to go to the pediatrician to get orders to have his blood drawn. This is one of the hardest things we have to do with Mateo. He gets uneasy just walking into an exam room, and when they position him on my lap and hold his arms down, he knows exactly what is happening, and immediately starts getting VERY upset. It breaks my heart to see and feel my little boy so frightened and stressed. I know it is for his health, but I wish there was some other way!!
Back to the sodium... Mateo has an ileostomy. His bowel movements are very liquidy, and he loses a lot of sodium, which can and DOES cause dehydration. Mateo's bases of nutrition is an amino acid based formula called Neocate. When we give Mateo his neocate to drink, we add 5ml of sodium to every 100ml feed. This helps to replenish what he loses through his ileostomy.
While we are at the doctor's office, Mateo also needs to get his weight checked. We go in to the pediatrician once a month to do this, to keep up on his progress and to make sure he is not losing weight, or gaining to fast. In either case, it causes a visit to the dietician, also at Doernbecher's, to make adjustments to his feeding.
Mateo's appointment with Dr. Young (pediatrician) is tomorrow morning. I won't have any results for a bit, since his blood will be drawn and sent back to Doernbechers, then the results will be mailed back to me. As soon as I find out anything, I will be sure to post!
On top of this, Mateo's G-tube, which is a Mic Key button is protruding from his tummy. I called the wound and ostomy office, but they referred me to the surgeon's office. I called there, and was told to anchor it with gauze and tape and to make an appt with Dr. Wadie. So on the 31st, Mateo has yet another office visit. This one will be to look at his G-tube to see if he needs a new size (he has grown and gained weight since this one has been put in) or if it just simply needs to be replaced. Again, i will post with more info when I get it!
Thank you to those who follow our blog, and please help us by simply spreading the word and raising awareness of this not so fun disease!