I can not believe that it has been two weeks since Matthew has been home. He is doing amazingly well. My days are really busy just taking care of him and Finn. Matthew has to be fed through his g-tube every three hours, so that takes up a good part of my day. Jim took off the first week we were home. That was a huge help. Matthew was not sleeping more then 20-30 minutes at a time at first. You can only after being in the NICU and being poked and prodded every 30 minutes, you wouldn't sleep either. He has been transitioning quite well since the first couple of days. He now is sleeping for about five to six hours a night. (we are not due to having to feed him)
He came home on oxygen, which we knew he would. That has been a little challenging because he is on such a small amount that his cannula tube can not be very long, so when you want to walk around the house with him you have to take his oxygen tank with you. We are getting really good at doing things one handed. He has a home care nurse that comes out once a week to weigh him and check all his vital signs. He also has a physical therapist coming out two times a week to help with getting him to feed orally. Kids that have been intubated have a tendenancy to have oral adversions. He falls into that category. However he really like his pacifier. I have never been one to want my kids to rely on a pacifier or their thumbs, but with Matt this is really okay with me.
Last week after being home almost a week Matthew's abdominal incision started to get red and irritated looking. It also looked like it might have some gunk in it. The home nurse had come out that day so I showed her and she told me to contact the surgeon right away. I did and got into his office within 2 hours of calling. They lanced the spot and there was definitely gunk in there he had a little bacteria in it. They are pretty sure it was a stitch that had absessed. They were asking if he had been retching or had any fevers. He had not had a fever, but I told them he retched with feeds. They asked how we were feeding him and we explained that we were gravity feeding him. ( this is putting a syringe into his g-tube and filling it with formula and letting gravity force it into the tube.) The surgeon was not happy with this way of feeding and especially since it was causing him to retch. Retching can cause his fundoplication to come undone and we do not want that. So they ordered a feeding pump that you can set the amount and for how long you want the feed to go. This has helped a great deal with his retching. He still does every once in awhile, but not every feed. So that is a good thing.
We have only been to see the pediatrician once since he was discharged on the 22nd of December. She has not felt that she needs to see him yet. Our next appointment with her is next week. Then we have a follow up with the surgeon in two weeks and in a month we have an appointment to see the pediatric cardiologist and pulmonologist. We have had strict orders for all of the doctors to not take Matthew out into public or for that matter around groups of people. So we have been pretty much homebound since he came home. We have not had many visitors either.
Speaking of having visitors we are welcoming them, but there are strict guidelines that must be followed.
First and foremost You can not be sick AT ALL. Not a sniffle, sneeze, cough, sore throat or any other symptoms. If you even have a slight thought that you might be we ask that you please stay home. Also you will be asked to wash and sanitize your hands before touching Matthew. Last but not least you will be asked to wear a mask whether you are sick or not. A lot of times you have been exposed before you know you are sick. So if you meet all of these guidelines and would like to come visit we would love to have you. I know this may seem a little extreme to some, but Matthew is still very fragile and we do not want him to go back to the hospital.
Sorry for the long post, just thought I would give an update as to how life at home has been.
We are loving having him home and I will take all of his equipment to have him home. He seems to be enjoying being home as well. He smiles and talks all the time. Oh and his big brother LOVES him. He has to give him a kiss every night before he goes to bed. I was certain that he was going to tell us to take him back the the hospital, but to my surprise he likes having him home.
Thank you for keeping up with us,
Jaime
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