Monday, October 1, 2012

Day 3

So we are still in the PICU and we are doing good. He had a bit of issues and started vest treatments which is something that goes around his body than shakes him a bit to make sure that he can get all that ickiness out of his lungs and helps with motlity as well. Anyways he's doing good and to be honest this is a short one because things are looking up. CPAP machine came off at 9pm or so and he's on room air:) Looks like the worse is over now but we shall see!

Saturday, September 29, 2012

Day 2 - Scary!

Today we went to look at houses with my parents and when we were gone I got a scary call from the nurse saying that he had to be put on bypap again. He was on cpap which just was helping him a bit where bypap helps him breath and reminds him to do so. Well he got to the point on cpap where his oxygen was diving and they were going to put a breathing tube in but his throat was inflammed so that they weren't able to so put him in the bypap. They put him on 2 sedations as well to calm him down and an anti inflamatory medcation just in case. He's now on 32% oxygen which is kind of low but we had to up his oxygen because his saltation levels were doing bad.

Daddy came and visted so spent 3 hours hanging out with us. I had a hard time with the news we were given because my hopes was he'd be on room air today but with the chest cold, croup and a viral thing going on it's just hitting him really hard and looks like we might be in till Monday/Tuesday:( My poor little boy. Here are some pictures

Here is dad sleeping because Justin wore him out
Austin looking at his papa when he was upset:( He just wants his mask off and to be held of course!

Friday, September 28, 2012

365 days of blogging - Day 1

I've made a committment to try to update my blog once a day and I know there are going to be days that are harder than others to update. But this is something that I want to do because I know there are a lot of people even though they do not subscribe to the blog they actually follow it. Also this helps me kind of follow as well. Most will have pictures but not all of course.

We are in the PICU right now. Some story we came in about 5:30 pm yesterday night because he hadn't pooped in 6 days so we decided it was time since he was cranky for me and in a lot of discomfort even during PT with Amanda. So we went and they checked his pulse ox (checking his oxygen levels) and he was at 95% which is low. He has a chest cold but we did not see any pneumonia in his lungs but there is a chance now that he has aspirated from the amount of throwing up he's been doing. So we got admitted to regular ped's and we had a lot of issues into the night. We did a lot of breathing treatments (two different kinds) and pounded on his chest to break up the extra stuff. Eventually his oxygen level went down to 84% which is very very low for him and they had to put him on oxygen. After having troubles even on regular oxygen (they had it up pretty high) they called a code so PICU came and they said they needed him on positive air mask and put him on bpap/cpap. So here we are now we are going to be here to at least Sunday (hoping no longer than Sunday!) Alex took the day off and dad took a half day to take care of Justin. Justin firstly was at my mother in law's house. My brother in law was diagnosised with syringomyelria which means his spine is pulling on his brain which might cause him to be in a wheel chair eventually and need care. Looks like Austin MAY have a room mate when he's older. Austin's breathing is doing better but he's still struggling a lot and I think we will be in till Sunday. Here's some pictures.

First picture is half of his machines the other machine picture won't show up. Second picture is doaderm on his face to protect his skin since the mask has to be tight sometimes causes marks on his face. They don't want his skin to break down and the third one is his new mask. It's the third mask we tried for him. This is his first day in the PICU but he's been here since 5:30pm.

Wednesday, August 8, 2012

Our House!

We are getting a house, yes we are!

It's perfect and words cannot express how happy I am about this. We found this house in the Salem area (down the street from the school!). It is 1400 sq ft with a back yard, basement, front porch, back porch and a dining room. We move on September 1st into this house and I'm so excited about it.

We will rent it for 5 years and than we will buy it from the guy. So the money that we are putting into it goes towards the mortgage. Which is awesome so by the end it'll be a bit paid off and we can get a loan for the remaining amount of the house. I can't wait to be able to do what we want to a house and make it ours. It's 3 bedroom so when we decide to do foster care we will be able to do it. The boys will shack up together because the rooms are big enough as well. So here we are packing up again!

Thank you to those who have been so supportive.

What is a healthy marriage?

I am wondering what others would say to this. It's a big topic right now in my Love & Marriage group on Cafemom. I was inspired to write something about it from my own personal experience. As a moderator of the group I get to see everyone else experience's and get to relate, give advice and truly make a difference in peoples lives. That is what I truly think I was put on this earth to do.

There was a time where my relationship was not the best. We have had our ups and downs with the things we have been through. We have had a scary past 2 years with Austin that has challenged our marriage. There were times where I wanted to give up but knew that I loved my husband so much that I could never give up on that. He is my soul mate and I love him. There were times where we were screaming at each other out of anger and when we later realized how unhealthy it was for us we decided that we would be totally honest with each other. 

Alex is the one person who knows me better than anyone else. I'm able to share with him things that sometimes spouses do not share with each other. Some things that are very personal and I may not share with anyone else. To be able to be that HONEST and OPEN with someone takes a lot of trust. So trust is one of the biggest things to a healthy relationship. Open communication, even when it's hard to be able to tell the person how you feel. If your husband or wife is doing something that might be a tad bit annoying or something that you dislike, just tell them. If you do not tell them, guess what? You will get angry at yourself or them and that all builds up. I am not saying that I'm a relationship advice person but through trial in error in my own marriage we have figured out what would work. 

Take your time on things. This is not saying each task you can sit around and do nothing and at the last minute do it. Take your time when it comes to getting to know each other in a relationship. Whether this be a beginning or a relationship or a marriage. You learn so much about your spouse after you are a married. Things may not seem to change but they do, tremendously. You are not only thinking about yourself but the person that you are with. What use to be easy choices on your own may not be so easy any more. 

Sacrifice when you can for another. Sometimes there are certain situations where you have to choose one way or another. Will we go to this family picnic or will we go to the zoo? Make sure that you do the things that are right for your family not only yourself. Sometimes being in a relationship you got to be a little selfless. You got to think not only about your partner but if you have kids them as well. I know we have sacrificed so many date nights because we would rather stay home with the kids or it just didn't pan out. Sometimes we are to tired to do anything and would rather watch a kids movie with our little ones than go out together. 

My parents have always taught me that Family is #1. I would do anything for my family and give up anything that I can to help someone out in my family. Some people do not have these same values but I believe if do this you will always have someone behind you able to help you when you need it. You might fight of bicker with your partner but that should be behind closed doors. Or that's my opinion, you may have something else. Or if you are able to have a healthy discussion in front of your children that's fine as well. I'm not saying hide your adult conversations from your kids but if there is screaming than that is not good for children to see. 

I know the one time that I did this I felt so guilty and hurt that my child had to see me this way. Maybe I'm overreacting but I don't think that I am. I think there are some things that should be kept behind closed doors. Make sure you have time for each other. That is big. I know there are times where we won't go on date nights but we will sit next to each other and enjoy a video game together or something. I love cuddling with my husband and just talking. Text messages and Facebook messages through the day helps out a lot as well. 

Making sure you kiss each other good night and good morning helps a lot too. 

Wednesday, July 11, 2012

Nationwide Children's Hospital

So for a while now I have thought about trying to do something for Children's Hospital but I have never done an event like this. My hopes is that we will be able to do something AMAZING for the boys and girls in the hospital. During Christmas time they do awesome events so that they can give every children that is seen in there a toy for Christmas and there are always tons of people who donate than so I want to do something not around that time. Kind of get people a rest from donating so I am thinking of something in April or May. What I would love to do is every time we go into the hospital there is always someone giving your child a gift to kind of make the stay a bit more bearable. And I want to be able to give that to them. So take the list of things that we needed and have people either donate toys or donate money towards getting the toys and wagons that they need for these lovely children! 

I'm coming up with plans on things I can donate and people I can have get involved with this. Children's Hospital has done so much for me and I want to be able to make sure that I'm able to give back to them in every way possible. I know the journey I'm on is hard but it's worth it when you have safe like them to help us out on the road.

Wednesday, June 13, 2012

Medical Stuff with Austin

So update on Austin's medical issues:

For those who do not know, Austin has been diagnosed with Spastic Quadriplegic Cerebral Palsy, HIE, Laryngomolacia, Tracheomalacia, high muscle tone, global delays, failure to thrive, G/J tube placement, Plyoric Stenosis, Complex Epilepsy (including Infantile Spasms), GERD and a few other medical issues. Sometimes typing them all up I always miss something.

With Austin's complex medical history there is always something that could come up along the way. Austin cannot take anything my mouth because he aspirates (could go down to his lungs) since he cannot protect his airway. So with him throwing up he can aspirate even more! So back on April 18th we went into a scope so we could do the surgery called a Nissen (to help with the throwing up!) and he came out of it with a temp of 104.5 and oxygen level of 85%. Even with all his medical issues he has ALWAYS been a 100% or 99% for oxygen level! 

I didn't get to see my son until 2.5 hours after they had promised. I was worried, confused, and sadden when they had told me. This was the second time he had a hard time coming off of anesthesia so it got me worried about him. I was in tears as they were running test after test on my poor little baby. We found out after getting admitted he had gotten pneumonia and RSV. Normally, if you have RSV it can cause pneumonia but after a lot of test they found out that it was bacterial pneumonia. SO he was put on antibiotics for that and of course had been on oxygen. He stayed in the hospital for 5 days. So with big aspirations it can cause pneumonia, it's part of his life we have to over come and keep trying to make him as healthy as we can. 

So we got a referral in the hospital for ENT (ear, nose, and throat doctor) to come visit. Things looked good on their part but on the Pulmonary aspect things didn't look so hot. Since he cannot protect his air way we have to talk with them to make sure that we do all we can to help with the small aspirations so perhaps we can prevent pneumonia as much as we can. So the pulmonary doctor asked about family history of breathing issues which was a laugh since we have family history of emphysema. 

So at the end she had decided on an steroid inhaler given, 2 puffs, twice a day for him. This will help protect his lungs and in the long term keep him out of the hospital. So let's help it works. On other news since he got out of the hospital April 22nd he had pooped 7/8 times in a month so we went into the hospital again for a 1 day stay. Which he was so backed up it was coming out of his g tube site.:( Poor guy! He can't win. SO now he's on medicine to make sure he stays regular. It's a pain in the butt to give to him but it's worth it. The clean up does suck though! So there is an update on Austin. We got more medical appointments coming up including physical medicine, neuro, and ophthalmology next week so THAT will be an interesting time that I will update you guys all up. Next week we are schedule for 7 appointments in 1 week so I'm not looking forward to it!