Friday, July 29, 2011

It's Friday!!!!

It's finally Friday!! The week has actually gone by decently fast, which I'm thankful for. Maybe today I will get to test out my new running shoes. Of course, I'm not actually going to run in them, but I am going to exercise in them. Maybe the running will come later when the weather cools down. I would LOVE to start running!

We have no big plans for the weekend except today we get our new batch of shirts in!!! Wooo!!! I'm excited to see them! I'm hoping the one I ordered for me will fit okay. It was really cute in the catalogue so we shall see.

I'm also waiting today to get a call from the surgeon's office with the official time for Pax's pre-op appointment and the surgery time. She said it would probably be the same time, but I need to hear an official time. My other plans for this weekend are to go grocery shopping, although I'm not really sure what all I'm going to get since I have no clue how next week will go. I do know I need to get all of our toiletries for the hospital though and I need to get my puzzle books. I have a thing about puzzle books during times like this. That's all I do...puzzles. I guess it keeps my mind off of what's going on in front of me. I'm going to try to stay calm this weekend and prepare myself as much as I can without going crazy. I think, more than anything else, I'm just not looking forward to seeing Pax afterwards. That's what freaks me out the most for some reason. Probably because the 1st time around he was already in the hospital. I couldn't hold or feed him and he was already hooked up to so many things it wasn't a huge shock to see him afterwards. But this time he is a happy playful little boy who is NOT in the hospital anymore. I can hold and feed him and play with him. He's not hooked up to anything right now so to go from him now to looking....scary...well that's a BIG change.

I'm so glad to have the peace of God though. I know that the Holy Spirit is my comforter and friend. He will not leave or forsake me and He will be my strength. I just have to focus on that. 

Monday, July 25, 2011


This morning was Pax's pre-op appointment for his surgery tomorrow. It took a couple hours, but he did so great! I absolutely LOVE the staff at the children's hospital. They truly are so wonderful! They always remember Pax and his story. They treat him like he is a member of their family. Anyways, the rest of the afternoon wasn't hugely eventful. We all just went out and ran errands until it was time for my Dad and Sharon to get to town. They were coming in to be here for the surgery tomorrow. Well we are sitting at dinner at Cheddar's and I get a phone call from the surgeon's office. Evidently the director of nurses advised the surgeons to wait until next week to do the surgery. She said that there were going to be a bunch of newer and inexperienced nurses on the schedule for tomorrow and thought it best, considering Pax's situation, that they wait until the best nurses were going to be on the schedule. I was sooo pissed! Not because they postponed it necessarily, but because they waited until the night before to look at the schedule and make that decision. I am glad though that someone caught it and was looking out for Pax. I just wish they would have done it a little sooner...and BEFORE my Dad and Sharon drove all the way here. After dinner we got some ice cream and then headed to Julie's to play games. When we got there my Dad told us they were going to go ahead and drive back home to Branson and try to come back up next week. This made me happy. I thought I was going to miss out on them being here to support me. I was really looking forward to having someone from my family be there with us.

Well, now we have another week of waiting and doing nothing. I am not a very good "waiter". It's not my thing. 

Sunday, July 24, 2011

Weekend Distraction

This weekend my brother, sister-in-law and my niece Madison came to town to spend some time with us before Pax's surgery Tuesday. I'm so glad they came because it helped to take my mind off of what is to come. They got to town Friday evening and then Saturday we all went shopping. Surprisingly this shopping trip went WAY better than when we tried to go in January. All 4 kids behaved beautifully! I got a pair of running shoes to replace the ones that I've had since I was a junior in high school. They are pretty sweet if I do say so myself. Sunday morning we got to dedicate Pax at church. I know this is going to maybe sound bad and not make sense, but somehow dedicating him had another level of meaning. It was definitely a decision for me to put him in God's hands and literally dedicate his life to matter what happens. Of course, I'm expecting God's healing to be completed in Pax so that he won't have to deal with heart issues the rest of his life and he can declare God's amazingness the rest of his life. Anyways, Sunday night we attended the benefit show that my husband Josh put together for our family. It was at a bbq restaurant so basically for $12 people got their food and then listened to a couple bands play and then got to hear Josh's band play. Our church family was absolutely amazing in their support for us. There were 2 showings and both of them sold out, plus after the show they ended up buying a ton of the t-shirts that we had made.

I forgot to mention that Josh and I started a t-shirt company to help out with finances during Pax's hospital stay, but I think we are going to keep it going. It's doing really well and we think the designs are pretty sweet. :)

Anyways, back to my weekend story...after the show my family left. :( I wish they could have stayed longer, but it's always so much fun to get to see them! They did leave with the promise that they would be back in a month though so I'm holding them to it. 

Thursday, July 21, 2011

Follow Up With Cardiologist

Yesterday I took Pax for his follow up appointment with Dr. Madranero. Pax had been turning purple last week and just had some scary symptoms so I took him to the urgent care and then he ended up spending the night in the hospital. Long story short there's not really anything they can do until surgery to fix his heart. He's doing much much better. Not near as pale and hasn't been changing color quite as much. He's still not eating much, but overall he has improved. So basically today's appointment was pointless. We were in and out in no time. Now we just continue waiting until his surgery date....which none of us are looking forward to except to just get it over with. I continue to thank God though that He is basically keeping him alive right now. We are believing that God is continuing to work healing in Pax's body. 

Wednesday, July 20, 2011

The Last 5 Months

A lot has happened in the last 5 months, that's for sure! Paxton was released from the hospital on February 28th, which happened to be his exact 10 week birthday. Since then he has had monthly cardiologist visits. He has been growing perfectly and developing just like any other baby his age would. This is such a great blessing to us! The cardiologist has even called him "fatso" before. haha! He is currently 7 months old and weighs almost 18 pounds and is about 28 inches long.

March 2011: I took him to his first cardiologist visit about a week or so after his release from the hospital. His repair still looked great and he was doing amazing! At that appointment she did mention one little area about his aortic valve that had some pressure, but she said she wasn't concerned about it at that time.

April 2011: My husband Josh took Paxton to his 2nd cardiologist appointment the 1st week of April. I had just had my gallbladder taken out a couple days before so I had to stay home. :( At this appointment Dr. Madrenero (Pax's cardiologist) said the pressure had risen since the last appointment in March and that if it got worse by next month's appointment or even stayed the same that Pax would be getting a heart cath and that she would share the information with the other doctor's and with the surgeons at the weekly meeting they have. A couple days after his appointment we ended up rushing him to the er because his leg turned purple. He stayed overnight in the PICU, but was sent home the next day. He had great vitals and perfect oxygen sats and they couldn't find any clots. So no reason was given for why his leg kept turning purple.

May/June 2011: Josh and I both took Pax to May's cardiology appointment because we knew there was a chance it wouldn't be good news. At this appointment we were told that the narrowing and pressure was worse. So we scheduled a heart cath for the 26th of May and then we would go from there. Well that appointment didn't happen because Pax, my other 2 sons and I all got sick. Paxton actually ended up in the hospital for a couple days at the first part of June because of it. It took quite a while for us to finally get better. He ended up having his heart cath on June 28th. At that time we were told that he had supravalvar aortic stenosis. We didn't really know what exactly that meant. We were just given pictures of the narrowing and told it would have to be surgically corrected soon.

July 2011: On July 8th we met with the surgeons and were told at this appointment that SVAS is usually seen in kids that have William's Syndrome and they are usually at least 3-4 years old. (We are still waiting on the results from the William's test, but we are all pretty sure he doesn't have it.) It is EXTREMELY RARE for it to occur in a baby. The statistic that I later found on the internet was .05% of CHD kids get it. They were very confused and concerned because they don't understand why he developed it or why he's even still alive. They said he should have died during the heart cath and that even just sitting there she wasn't sure how blood was able to get through. I should remind you that he shows no outward signs or symptoms of any heart issues. THANK YOU JESUS!!

So to make a very long story of the appointment shorter, surgery was scheduled for July 28th. Whew!

Hopefully you were able to follow all of that. :)