Asking for Help

I have been getting the question a lot. What can we do to help? When I am asked this question I do not have an answer. It kind of catches me off guard and I can not think of things that people can help with. So I thought I would think about it ahead of time and post it here. This is a very hard thing for us to do. We are not the type of people to ask for help. It is hard for us to even let people help out. I have started to come to terms with it and have realized that it is okay to have help.  I am still probably not going to call people up and say hey come help me. I just can not seem to get over this part, but if you are wanting to help out and are free and have nothing better to do then this is what we could use help with...

When Jim is out of town I could use a little break during the week either to go to the grocery store, or get other needed supplies for the house or even tap a little nap. Especially if Matt continues to not sleep very well at night. 

If anyone feels so inclined I could sue help with vacuuming, mopping, sweeping and all that good stuff. I am able to stay on top of dishes and laundry. Even if it may appear that I am not. I can do a load of laundry a day and stay on top of it pretty well. I am able to do the dishes after meals and when preparing Matt's feeds. So I don't need as much help with this stuff.

When Jim is gone I could use a meal or a visitor to come by to make sure I have not gone completely insane. As I am not able to get out of the house. We can not go out in public (i.e. grocery stores, malls, bank etc..) We can go to other people's houses if and only IF no one is sick. 

I think this pretty much sums it up of what I could use help with. Again, I will probably not call you to ask for help, so if you have a few extra minutes in your busy days and want to come by and help it would be greatly appreciated. 

So that is pretty much the gist of it. I hope this helps anyone who wants to help and doesn't know how. You can also just call and come by anytime, we are more then likely home. 

Thank you in advance,

Jaime

Surgeon Follow-up

Yesterday Matthew had his first follow-up visit with the surgeon. She felt all of his post op stuff looks good and nothing to be too concerned with at this point except for one minor thing...We have been into the office a couple of times in the last couple weeks due to his abdominal incision having a bit of an issue. They say that his body is having a reaction to the sutures. They fins this kind of odd since it is almost 2 months post op. They have been wanting to avoid putting him on antibiotics, but decided this was necessary at this point. They were not having me put any ointment or anything on it and now they are. So hopefully all of this will make his incision heal like it should have.

 I also had to replace his G-tube by myself yesterday.( with the instruction of the surgeon) It was not as bad as I was anticipating. It was really pretty simple. They wanted to make sure I know how to do it so if it ever comes out. I now feel confident that I can change it if I ever have to in an emergency.

We had a peditrician appointment last week and she does not want to see him until he is 4 months. I am taking that as a positive thing. She does call every week to check on him. She just wants to make sure he does not go into the office any more then absolutely necessary.

We have our first follow up appointments with the pediatric cardiologist and pediatric pulmonologist in two weeks. I am very curious as to how those appointments will go. I have met the cardiologist briefly at the hospital but we have not met the pulmonologist. I am hoping that they have positive things to say. These are the doctors that will let us know how long Matthew will be on oxygen and how many medications he still needs to be on.

As you can see I stay quite busy with just Doctors appointments, not to mention all the home care we are receiving. We are currently receiving in home care for the following..Nursing, Physical Therapy, and a dietitian. Nursing comes once a week and the physical therapist is coming twice a week. The therapist is working with Matthew trying to get him to be able to eat orally. She says it looks like it is going to be a long road to get him to where he needs to be. That seems to be the story of his life.  Speaking of in home care I will have someone arriving any minute now so I need to say see ya later..

Jaime

First two weeks

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