Payten needs surgery.

Well, unfortunately, the Doctors appointment did not go a happily as expected, but it was still a good appointment, for we addressed a much needed topic, Payten's Stoma. In order to close her Stoma, it will require inpatient surgery. It is a more invasive procedure than I realized and it will require at least one over night stay in the hospital, if not a longer stay, considering how she responds to the procedure. I am not sure as to when the surgery will happen, I should be receiving a phone call either tomorrow or Friday to schedule the day and time of the surgery. What the surgery will entail is, the Doctor will go in and cut around her Stoma, creating a much bigger hole, then he will take the ends of the new hole and sew them together. She will be intubated during the surgery, which makes me a little nervous considering the last time she was intubated, it did not turn out well and she had a hard time coming off the tube, etc. But I know that this surgery is necessary and so I need to have faith that it will all workout. I did share with the Doctor about the last Lumbar Puncture Payten had shortly after her decanulation in March and how she did not respond well to the anesthesia and therefore she had a hard time breathing and waking up, which he said he understood my concern and he too is a little concerned, but that he believes it will be okay. However he did share the worse case scenario which is the possibility that Payten will end up with a trach again, due to complications with her breathing and the procedure.

Now, let's be honest, that will probably not happen, but it is a possibility and it does concern me. He did explain his concern about her Stoma not closing and why he believes it may have not closed. He believes the reason her Stoma has not fully close is because, she is still pretty dependent on the Open airway in the trachea and therefore is still using the opening/Stoma for respiratory support and therefore the surgery will be able to determine if this is in actuality the case and if it is, then most likely he will have to canulate her again. Not something I want to ever see Payten have again, but if her airway is compromised and the only solution is traching her again, then that is what we will do. But I am hopeful that we will see that she is strong enough without it and that it is just a fluke that the Stoma never closed up. Before he does the surgery, he will be in contact with Payten's Pulmonologist to discuss his feelings regarding the matter and find out the Pulmonologists opinion on the procedure and talk about the results of the sleep study and whether or not it is safe to close the Stoma indefinitely. Most likely while she is under anesthesia, they will do a rigid bronchoscopy on her, to make absolute sure her airway is good and that everything is healed and strengthened. The ENT believes that the reason she had such a hard time with wakening from the Lumbar Puncture anesthesia, was due to Payten's low muscle tone and the fact that when she falls asleep, her muscle tone decreases even more, making her airway that much more compromised, which affects her ability to breath off the gas and wake up. So his concern is that once we close the Stoma, we will see more difficulty in her breathing, especially while asleep, which concerns me greatly, but I am still keeping the hope and faith, that everything will workout for the best and Joseph and I will be able to deal with whatever is placed before us.

The worst case is Payten ends up having a trach again, the best case is she has her Stoma closed and never needs the trach again, I am leaning towards the best case scenario happening, but I know that the worst case scenario is still a possibility and therefore I will be a little worried, until procedure is performed and I know the outcome. So tonight I will be going to bed with a very heavy heart and a brain that is overload with thoughts and concerns. The trach is not a bad thing, it just can be a nuisance at times, therefore I would prefer the Payten  be without it, but I know that breathing is an important part to our survival, so I will do whatever it takes to give my daughter the best support necessary in order for her to breath comfortably. I guess I just have to pray that it will all work out and that the Lord will have Payten's best interest at heart. I need remain hopeful that she will beat this and come out proving everyone wrong. Please, if you pray, pray for our sweet Payten that it will all go smoothly and be okay. I will let you all know when the surgery is, but until then, take care and have a great night. Much love and God bless.