Tuesday, August 16, 2011

As you know Pax came home last Thursday afternoon and is still doing great. Over the weekend we pretended we were on "vacation" and celebrated his homecoming by eating lots of ice cream and playing a whole lot of Mario on our wii. Josh and I actually beat the game...yeah I know...we are dorks, but we actually had a wonderful time. I can't remember the last time I have laughed so much or so hard. I actually laughed so much one of those days that I gave myself a headache. 

Now "vacation" is over and Josh has gone back to work and I'm back to the normal household wife and mom duties. I don't mind a bit though. The only thing I miss about the hospital is the sleep I got (Josh stayed at the hospital with Pax while I slept through the night at home.) and the cookies. :) Even though some days being home with 3 very loud and messy children can be rough I wouldn't trade it for anything. I love being here with them watching them grow and learn. On days that it becomes too much I just get to go shopping and get some coffee and I'm totally okay with that. :) 

Speaking of sleep...I miss it! I think Pax's body is still doing some adjusting. Heart babies tend to burn more calories than heart healthy kids do so I kind of understand waking in the middle of the night to eat, but I sooo want him to just sleep through the night. Can't he make up for the calories during the day and not at night? I'm actually thinking about trying to move him into his crib in the boys' room in the next week or so. At least that way I'm not waking up at every move he makes or every breath that I hear. We will see how that goes though.

Pax has a cardiologist appointment this Thursday. While he was in the hospital a doctor mentioned to Josh that they were going to do a heart cath on him soon. This was somewhat news to us so I plan to talk to his cardiologist about it. I knew that he'd probably have to get one again at some point...some day, but I wasn't expecting so soon. The surgeons did say they wanted to watch his aorta. Where they made the previous repair was starting to narrow again which was concerning to them, but it wasn't so bad that they felt they needed to do anything to it during his surgery a couple weeks ago. So please be praying this week for a good report. Of course I will update after the appointment. 

Happy Tuesday everyone!! 

Saturday, August 13, 2011

Paxton is home! The doctors released him late Thursday afternoon...one day early. :) He is doing fantabulous! He's still a little bit "fragile", but he's been trying to get back to his active self. Even when he was in the hospital he had been working on trying to roll to his tummy, but either didn't quite have the strength to do it or it hurt him. Not sure which. Yesterday though he was on the floor at home and rolled all the way over! He even tried to start army crawling again. He doesn't go as far or as fast as usual, but we were floored that he even tried and was happy on his tummy. It made my chest hurt just to watch! He's been sleeping and eating like a champ too! It's so amazing to see how quickly he is healing and progressing.

His only restrictions are that he has to avoid public places for the next 4-5 weeks...no sickness allowed!! And we can't pick him up under the arms...we have to scoop him up. That ones pretty interesting. Try "scooping" an almost 8 month old who weighs more than 18 pounds and is wiggly. :)

I will try to post some pictures of him at home sometime in the next few days. 

Wednesday, August 10, 2011

There's not too much new news for today. Dr. Barth came by this morning and told Josh that he looked great and that he could go home on Friday. By the way, here's a picture of the surgeons that operated on Pax. They truly are rock stars and God definitely blessed us with a couple of the finest and best pediatric heart surgeons in the country. And it makes it even better knowing that they serve God too. Dr. Nikaidoh always prays over each procedure he does and prays with the family beforehand. Even though we and sooooo many of you are praying for Pax, it's nice to know that his doctors area also praying for him and asking God to give them wisdom concerning his case.

In preparing to leave the hospital I can't help to think about what I'm going to miss about being here. The people are absolutely top notch...fantabulous! I'm also saddened to have to leave these behind...
Trust me, you'd be a little sad too. They are turtle cookies from the cafeteria and they are delicious! And don't even get me started on the rocky road cookies...oh me oh my! Unfortunately, for my own health and for my waistline it is best that I leave these behind. *sigh* 

Tuesday, August 9, 2011

I finally got to hold him today!!! 

Pax is continuing to do wonderfully! His liver has gone down significantly. Yesterday the doctors decided to "test" his liver by letting him eat whatever he wanted whenever he wanted to see how his liver would react. I have yet to talk to a nurse, but I'm guessing it didn't increase in size because they are continuing to let him eat as normal. They did tell Josh that it is still enlarged though, but I'm not sure by how much and I don't know any details about it yet. He is definitely breathing much much easier which is a great sign. (When the liver is too big it puts pressure on the diaphragm causing breathing difficulties.)

At 2pm he will receive his last IV med and then his "art" line (the line that is in an artery that they draw blood from. No drugs are given through this line.) will come out and then we will move out of the PICU and head to one of the "clean" regular pediatric floors. Yay! I'm sad to have to leave the PICU just because we have made so many friends here, but glad that Pax is well enough to not need them. He still has his central line, but I'm guessing it will also come out today since he is receiving no meds through it after 2 and he also has 2 other lines for "just in case".

I can't believe that 1 week ago he had his surgery. So much has happened in the last week! I'm hoping that I will get to hold him today too...it's been 1 whole week since I've held him. It's time for some Mommy cuddles. :)

Also, if you remember me mentioning a friend here on the PICU level named Taylor...she was our neighbor in the surgical suite that was on ECMO and not doing very well. I found out today that they are weaning her from the ECMO machine!!! Praise God!!! Thank you for praying for her. God is sooo good! 

Sunday, August 7, 2011

Today has been a new day. This morning his doctor came in and gave the clear to give him a couple ounces every couple hours. Wooo! He's been a MUCH happier kid since he's been able to eat some. He's been talking and laughing and playing all day. It's been so great! It's nice to see that he's feeling better. It's been hard to see him so unhappy this week.

They decided to start weaning his oxygen and nitrate so it should be gone completely in the next day or so. His liver has gone down a little, which is good. It's at least showing improvement. Praise God!! The swelling has gone down significantly...not too much more to go until he is back to "normal". I think that's all the changes today. God is so good!!

This afternoon he got to hang out with grandma and grandpa Coats while Josh and I took Dakotah and Kaiden out. We went to Build A Bear and to play at the mall and after that we took the boys to see Cars 2. Dakotah loved it...Kaiden, not so much. He is definitely NOT into movies the way Dakotah is...that's for sure. They are so opposites! Dakotah could sit through movies by 18 months, but he does NOT like music or concerts. Kaiden still won't sit through movies at age 3, but LOVES music and will go to Daddy's concerts and have a blast. I wonder what Pax will be like....

Saturday, August 6, 2011

Well the "easy part" of the hospital stuff has passed. I think the hardest part is when they come off of the vent and come off of the drugs, but can't eat or be held yet. It's so sad today. :( I'm happy that he was able to come off of the vent and got to have a bunch of tubes taken out yesterday, but they also stopped his pain/sedation drugs. So his throat is sore and he's having trouble breathing and is just plain miserable. He's just been crying today. It makes me so sad. Hopefully in the next day or so they will take out his central line so I can maybe hold him. He's a cuddler so he just gives me this look like "mommy, why aren't you holding me?"

He does get to move into a bigger room that has a shower and a tv which will be nice. And he gets a bigger bed. As soon as his liver goes back to normal size he will be able to eat.

So I would ask that you be praying that his liver go back to normal so he can start eating again and also that  it would be an easy transition from having all those drugs to not having any.

Thank you all so much!!

Friday, August 5, 2011

Paxton truly is my little miracle man. This week has been full of amazingness. His surgery was Tuesday morning. At 7:15am I had to hand him over to the nurses to go back for his surgery. It was insanely hard to give him to someone knowing what they were going to do. Sooo! Hard!! Anyways, it took awhile before they actually got him opened up and on bypass. There was a bunch of scar tissue that they had to work through from the first surgery so that's why it takes so long. After lunch they came out and told us that it was going to be more like midnight before they were done, but thankfully about 4:30pm they wheeled him to his room. He did absolutely beautiful during surgery.

Back story...as we already knew, he has Shone's Syndrome which consists of 4 defects. One of those was already corrected in January. What they repaired during this surgery has absolutely nothing to do with Shone's. For short, it's called SVAS and it's normally found in kid's with William's Syndrome and is never seen in an infant. The surgeons had no information or statistics on infants that develop this. It just doesn't happen. (After we originally met with the surgeons I did do some research and found a handful of cases involving infants. Unfortunately most of the infants either died during the diagnostic heart cath or during surgery.) The surgeons were very confused as to why his aorta developed this. There's just no known reason for it. They were very very hesitant and worried about doing this surgery. Making a long story short, they did not give us good odds. In fact, at one point during our meeting they told us they wished we weren't such good parents. It makes it easier for them to give bad news to parents if they aren't good parents. It sounds horrible, but it does make sense.

During surgery they saw that the material they used during the previous repair had gone haywire. It's a material called cormatrix aka pig gut. It's supposed to grow with and essentially become the tissue that you are attaching it to. In Paxton's case it definitely grew, but not the way it was supposed to. Instead of growing with the aorta, it grew out and around and inside of it causing the artery to be almost completely closed off. So because of that they decided to use a different "old school" material called gortex that doesn't grow. Without going into all the details of that, they are hoping that it will work just fine and they won't have to do anything else to it.

Because his aorta had such a strange reaction they sent off a piece of his aorta and a piece of the cormatrix for biopsy. We are still waiting on the results from the aorta, but the cormatrix immediately came back as inflammation. It didn't even recognize that it was a foreign material.

Post surgery he has been doing fantastic!! He was put in a special surgical suite room because they thought he would bleed out or have to be put on life support. Neither has happened! Praise God! His vitals have stayed wonderful! Today his chest tube came out and later he will come off of the ventilator. Wooo!!! I'm not really sure what the next step from that will be, but probably to start weaning from all the drugs and get back to eating.

I'm just so amazed at how God is carrying us through! He has been really showing Himself strong on Paxton's behalf. He has smashed the odds that were given to him.

Through all of this Josh has had a chance to connect with a couple other "heart families" that are here. We are actually sharing the surgical suite with one of those families. Their daughter is on the life support I mentioned earlier so please keep her in your prayers as well. I really believe that through all of this that God is going to open doors for us to be a blessing and minister to others that are going through this.

Thank you all for your love and support! You are amazing!