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

Matthew is Home!!!!

So this is the post I have been looking forward to since the day Matthew was born. After 58 days in the NICU Matthew is home.

 Here is a little about how it all happened. Yesterday morning Jim was up doing Matt's 9:00am feed and the Doctor came in and told him the plan was for Matt to go home tomorrow. (Thursday Dec. 22nd) So I frantically got bags packed for myself made arrangements for Finn to stay at the grandparents for two night and also found grandparents to watch the dogs too. I managed to get everything done and get to the hospital at about 12:30pm. I had to keep reminding all the nurses to ask the Dr if there was still a final Echocardiogram that need done. Sure enough there was so he had his echo done at about 3pm. Then we got to spend the rest of the day waiting for the on-call pediatric surgeon to come change his feeding tube to his button and pull his broviac (central line) out. She arrived at about 7pm to do that, and then we spent the rest of the evening in a private room in the NICU. We roomed in with no monitors to watch. I did not sleep very well at all, but that is why we decided to room in. Matt did really well and slept most of the night. I guess having a feeding tube can be a positive thing, when you don't have to disturb the baby to eat. This morning the Doctor came in and checked on Matt then we started the discharge process. We officially left the hospital at 12:30pm. Since we have been home things have gone great. It is just myself, Jim and Matt right now. We thought we needed a little break in time. So no dogs, big brother, or visitors today. It has actually been a nice change from the crazy life we have been living.

Now that we have Matt home my life will be extremely busy with LOTS of Doctor appointments and just having a 2 year old and an infant. I am looking forward to every minute of it.

I will try to keep you all updated as I have time, but there are no promises on that.
Thank you for all your thoughts and prayers we ask that you continue to keep us in your thoughts and prayers. We have made it a long way, but we still have a long way to go.

Jaime

What drugs???

This last week we have been going in every three hours to help with Matt's feeds. He was getting a little restless and agitated about 30 minutes before and after each feed, so the Doctor asked us if we could have someone there for his feeds. We managed to make most of his feeds. The only ones we didn't have someone there for were the midnight and the 3 am feeds. I think that is pretty good considering we had to cover every three hours. During those feeds Matt was still getting his morphine and phenobarbitol. Well today I am happy to announce that he is no longer getting morphine and he received his last dose of phenobarb at his noon feeding. YAY!!!! This is a huge step for him. This coming week he should be getting his permanent feeding tube "button" and also getting his central line (broviac) out. This is another HUGE step forward. 

I also believe they are going to do one last echocardiogram to make sure things still look as good as they did about a week and a half ago. They are also talking about doing a swallow study. They will have him swallow some barrium and then watch it with a flouoscope. This will let them know if he can tolerate feeds orally. If he can then I think they will try little amounts to see how he responds. They will not require him to be feeding orally to come home. He will be getting most of his feeds through his G-tube still. 

Now the next big step he needs to be able to come home is get off of the high flow nasal cannula. They have lowered his flow on the high flow form 4 liters to 2 liters. Hopefully this week they will try him on a standard cannula. If everything goes well with that, then maybe...just maybe we can hear the words we have been waiting 54 days for... 

We just ask that you continue to keep us in your thoughts and prayers.

Jaime

Update

Matthew update:

Matthew has just been kind of riding the wave for a few days now. On Tuesday of this week the Dr noticed his breathing has become a little more labored. They started doing all kinds of tests. Blood tests, x-rays, echocardiograms, ultrasounds, and more x-rays. They blood tests and x-rays all have come out being ok. There was one day his blood work came back a tiny bit abnormal. The echo actually came back and it looked really good. Better then his previous one after his last surgery. But the cardiologist did see some fluid around his lungs in his plural space. So that is where the ultrasound and more x-rays come in. He had those done yesterday. We talked to the Dr yesterday and she said he could possible have pneumonia again or something called a chylothorax. This is a condition where you have a lymphactic fluid leaking into your chest. This is not a good thing. This was a very worrisome thought. Well today we talked to the Dr again and they could not find a leak anywhere and they have completely ruled out the chylothorax and pneumonia. YAY!!!!

We know about how negatively a chylothorax can affect you because there is a little girl who was born two weeks before Matthew with undiagnosed CDH with heart problems as well. She had multiple surgeries, a couple of the same ones Matt has had. They think during one of her surgeries that something was nicked and caused the chylothorax. She has been leaking fluid into her chest for weeks now, they put chest tubes in and tried different medications. Today she lost her battle with CDH. It was very hard to hear this. We have become pretty close with the parents in the 6 1/2 weeks we have been in the NICU. Just knowing that she had some of the same things as Matthew just makes it that much harder to take. Little Elizabeth fought hard and was a very strong little girl. Her parents were at her side all the time. They have 9 other children as well and were with her as much as possible. They got to hold her until the end. RIP Elizabeth, you are in a better place where you will not have to endure anymore pain.

So with that said we are extremely greatful that there was not a chylothorax found. The Dr's have said they are quite certain his breathing and all of that is from withdrawls. They are SLOWLY weening Matthew off of morphine and phenobarbitol. He has had slight fevers and sweats a lot. Poor little guy. I just wish I could take some of the discomfort from him. He has been through so much in his short little life, but he is still on the right track. So we just keep praying for him to get better so that he can come home.

That is all the update information I have for now.

Jaime

On the right track

It looks like Matthew is on the right track. He has done amazingly well this last week. He has recovered from his surgery with flying colors. He is being weened off of his morphine slowly. He has become a little addicted to it and is having some withdrawls. They will ween him slowly so they shouldn't be too bad. They are also weening him of his high flow oxygen. Then he will just be on regular oxygen. He can come home n regular oxygen. He is very alert most of the time we go up there. The nurses say he is awake most of the day. He slept last night so I guess that is a good thing. He is getting tired of just laying in a bed, so they have put him in a swing and in a bouncy seat. He likes them both. He also loves to look at his mobile above his crib. We brought it in for him. I am sure the nurses are tired of the one and only song it plays. His feeds are starting to go a little better. They have started to give him 20cc's of milk and are only getting a little bit of residual back. They feed him through a feeding tube that was placed in his stomach during his last surgery. Once they get his stomach to empty and ween him off the morphine and high flow oxygen then he can come home. Jim and I are hoping that is before Christmas. One of his nurses today said she is going to be gone foe two weeks and she is afraid Matthew will be gone before she gets back. I sure hope she is right. We have been able to hold Matthew everyday since last Monday. We can go and take him out of his bed anytime we want and hold him as long as we want. It is so nice to be to that point with him. It was heart breaking to not be able to hold him for the first 26 days of his life. He loves to be held and rocked too. The nurses and respiratory therapists take turns holding and rocking him. He has a big boy cry that makes them all want to hold him. They are so used to the tiny pre term baby cry, that a big boy cry gets their attention. He is in good hands where he is at and everyone thinks he is just too cute. I would have to agree with them. :)

 I will keep you updated on the possibility of bringing Matthew home. We can just hope and pray that it is soon. However as much as I want him home, it will be a little scary. He will for sure be coming home on oxygen and also with a feeding tube. He might be coming home with his broviac IV as well. (central line in his chest) He could need extra IV nutrition on top of the milk that gets fed through the feeding tube. So with all of that it will be a lot more work then just bringing a healthy baby home. But hey I will take it.

That is all the information I have for now.
Jaime