Josiah has been running a high temp, again, all day today. It got as high as 104.3 at one point today. We were able to get it down fairly quickly when that happened by putting cold wash clothes all over him. His temp has stayed above 101 all day. We are trying out a new plan today. The pharmacist seems to think that Josiah may be experiencing these fevers as of late as a result of some drug interactions. So we are taking him off the antibiotics he's been on and hoping that his fevers come down. I am a little nervous that we are stopping antibiotics on a day when Josiah's fever was as high 104.3, but at the same time there doesn't seem to be any other indications for infection. Josiah is acting fine and his white blood count is normal. Hopefully getting rid of these antibiotics will help his fever to come down.

Here is a video of Josiah getting his nightly chest physical therapy. Miss Yevette decided to try a new method tonight. For all of you who have think Josiah has some chubby cheeks, this proves it!

So I know that we have left many people hanging, wondering about Josiah's cath results. It was not our intention but we didn't receive the best of news and it has taken Milo and I some time to talk and process things ourselves. We certainly don't have things figured out yet but we can at least share news with you now.

Got another update. Cath is done, Josiah will be back in PCICU in an hour. Just when you think it's going to be several more hours they surprise you!

Just got another update. They are finished getting pictures and pressures (don't know what the pressures are yet). His coractation of the aorta has been confirmed and so they are going to do the procedure to ballon it open. We were told yesterday that if they had to do that they were going to need to get to the heart from another location. So I am assuming that they are going to have to spend some time getting restarted.

Just received word that they have just begun the cath procedure. They took him back at 7:30am and have just now gotten the access to the arteries they needed. We were told it would be about 4 hours from this point. Thanks for praying.

Josiah's heart cath is scheduled for tomorrow morning. He is the first case, so he will be taken to the cath lab around 8am. The procedure will be around 4- 5 hours long. While this isn't surgery it is still a very invasive procedure as they are sending wires and tubing directly into his heart. The goal of this cath is to determine where Josiah is in regards to becoming a candidate for his next open heart surgery, the Glenn. Josiah has already passed the normal age range for this surgery but his lungs have proven to be a complication in him becoming a candidate for this surgery. So tomorrow they will take measurements and check on the pressures in both his heart and lungs. They will also be able to get a good glimpse of Josiah's heart function. The other main thing they will be doing is determining if there is in fact a coarctation (or narrowing) of his aorta. The Md's think that they are seeing one by echo and so if there is a coarctation they will have to balloon it open.

Josiah's been doing well since we got back to MUSC. I think he just loves it here and who wouldn't! He was looking a little rough when he arrived at MUSC, we think mostly from the transport. After a couple hours here he perked back up and began acting like himself again. We were certainly reassured to know that the MD's here think he's doing well. He is still having issues with dehydration and the Md's are tinkering with his diuretics (the medicines that helps him to urinate off extra fluid). They are going up on one and getting rid of another now. It truly is a balancing act. Josiah continues to spike temps every once in a while, but all the cultures come back negative. We continue to pray that he would quit messing with us!

The decision was made this morning to go back to MUSC. We are comfortable with this decision and it's what Milo and I felt was the right call last night before things got under way. We are grateful that we didn't have to push anyone into that this morning, but rather everyone agreed that today was the day. Thanks for your prayers in this situation.

We are still hanging out in the PICU at Greenville Memorial and will most likely be here for at least another week. Josiah had a pretty bad day yesterday. His lungs have gotten pretty wet in an attempt to rehydrate him from all the diarrhea he was having over the weekend. It's pretty complicated simply because Josiah is very complicated. Josiah was having respiratory distress yesterday and we have had to go up on his settings on the ventilator. His settings are too high for home (we don't have the ability to provide him with enough oxygen at home, it doesn't just come out of the wall like it does here!). So we will stay here until he can be weaned back down on the ventilator. Cultures were also drawn again last night because Josiah had another high fever. The offer was put on the table to go back to MUSC but for right now Milo and I want to stay here. It is easier on our entire family being here. As soon as we feel that Josiah will be better at MUSC we will go there. There is nothing, at this point, that the MD's here can't do that we would be doing at MUSC. The tricky part of that is, the MD's at MUSC know Josiah better, that is the only thing that keeps us wondering if we should go back. The MD's here are truly great they just don't have the 7 month experience of Josiah's ups and downs to start from. They are in constant contact with our MD's at MUSC though, which has helped tremendously.

Our sweet baby girl is 4 today! I can't believe that. Although this year has not been the easiest year for being a mom, the day Daylia was born and I entered into the world of motherhood was the best day of my life and I wouldn't trade being a mom for anything. She is amazing and I am so grateful for her today and always.

Josiah started having a fever on New Year's eve. I spoke with the MD's at MUSC and we all agreed to just wait and watch it. Unfortunately, on New Years day his temp spiked again to 103 and he was having major diarrhea so we had to bring him in to the hospital. We were able to be directly admitted to the PICU at Greenville Memorial so we didn't have to go through the emergency room. We were put on a 3 day sepsis watch. Basically that means cultures were taken and we wait the 3 days to see if anything grows back. So far nothing has grown back and so we are thinking that it is something viral. Josiah was also very dehydrated when we got here, so the MD's are trying to determine if that is because of the diarrhea or if he is on too many diuretics.

We are spending our first night at home with all three of our children under one roof on the last night of 2009! It is so nice to have everyone home. Milo's mom brought the girls home this morning and they were so excited to see Josiah. They were so good with him and have done so well listening to some new rules around the house, like wash your hands at least 1,000 times a day and ask before entering Josiah's room. They love their brother so much! Here are a couple pictures of us in Josiah's room. They are not the greatest pictures, it's hard to have taking pictures on the top of our priority list. Just like I need someone to come over and help clean my house and do laundry, I need someone to come be our photographer!

Can you believe that the picture above is the first time in 7.5 months that Josiah has ever sat in my lap like that. One of the best things about being out of the hospital is being able to be on the floor with everyone!

So on night one home from the hospital it was confirmed that we do in fact have to wear pajamas from now on! I joke but it's only to bring something lighter to an awful experience this morning. As I posted last night, Josiah had an amazing day! We put him to bed and he was sound asleep. We got up several times through the night because of alarms that were all related to the monitors not picking up right. At 4:45 am Milo got up to respond to Josiah's vent alarm. When he got to him he was "screaming" ( I put it in quotes because you can't hear Josiah cry or scream but you can see it all over his face) and the vent was alarming, which indicated that Josiah needed to be suctioned. When Milo passed the catheter through Josiah's trach to suction him. Josiah stopped breathing and became limp. At that point his heart rate dropped. By this time I had gotten up because the alarms had gotten worse. Milo was bagging Josiah with the ambu bag and he was still not responding. His heart rate dropped to the point where CPR needed to be started so we began CPR together while I called 911. We did several cycles of CPR with no response from Josiah. At that point we decided to change out his trach and put a new one in. I did that while Milo continued CPR. After several more cycles of CPR Josiah began to cry and fight again. Praise God. Just as he started breathing again EMS was coming into the room. His heart rate came right back up and we headed off in the ambulance. I held him in my arms, bagging him all the way to the hospital. Josiah has been perfectly fine, perfectly himself since. The blood gas that they drew when we got to the ER was good. Showing that his body did not take too hard of a hit from this episode.

We are home. We are home. We are home! And I actually have a moment to blog (probably because the girls aren't with us yet). It has been a wonderful day. Josiah has been amazing. I don't think I've ever seen him look so good. He has been just perfect. His O2 sats are higher than they have been in weeks. He's been sitting in the upper 80's all day!

I was so awestruck by the out pouring of love that came from people we have never met that I forgot to mention the other acts of love that we have received from the people we do know. Here are just a few at this time. I got home and all over my house are encouraging notes of scripture written by my dearest friend Dana, there were cards placed on my girls pillows that said "I pray for you" written by her young children. There were Christmas presents on our kitchen table from their family. I love this family so much. I know of other friends who have given contributions to Crossbridge family ministries (the ministry in Charleston that has taken such good care of us and helped us with housing) in honor of Josiah this Christmas. Crossbridge volunteers came caroling at our house in Charleston this week and brought gifts for the whole family. Mindy (one or our PCICU nurse) decorated Josiah's room with Christmas bows this morning to lift our spirits. These are just a few of the ways we have been blessed this week. There is a whole stack of mail that I have yet to go through.

We just got home from Charleston, unpacked, put up a Christmas tree, and opened a million packages that were sitting at our door. Some were Christmas presents that we purchased for the girls as we did most of our shopping online this year. Several boxes were for Josiah from long term medical (I think we are going to end up with quite a medical supply center here, just in case anyone ever needs anything). There were two boxes however, shipped from the other side of the country, Washington state. I couldn't figure out who this was from, we don't know anyone from Washington. I opened the two boxes which were filled with Christmas presents for our whole family and a simple precious note that read, "Given in Loving Memory of our Grandson Hudson Alvin Skiff December 22, 2008- April 11, 2009." Thank you God for this precious family. I just began to cry as I was so humbled by this gesture. We are so loved by people we know and people we have never meet. Which ultimately brings me back to the fact that God loves us so deeply. God brought to the front of my mind at that point this scripture from 1 John 4. I love the way the Message translates this passage

Christmastime is here... here in the PCICU that is. Josiah won't be making the trip to Greenville with us when we leave tonight to head back up the road. When we complete this holiday week, we will have made the 3.5 hr trip 6 out of 9 days. We spent 2 hrs over lunch the other day arranging our most complicated Christmas schedule ever.

He turned 7 months old on Sunday, and I guess somehow we had begun to feel entitled to leave here or something. But the reality is, we don't want to leave this unit until our little guy has reached the goals necessary. Goals like...

Maintain ventilator settings of 40% oxygen or less
Breathe on a trach collar (water vapor and oxygen instead of a vent) for at least 1 hr a day.
Stabilize his glucose (sugar) levels to a safe level of 70.
Tolerate his feeds in a way that doesn't make his belly swell into a Jabba-The-Hut-like pose.
(it would appear that he is sneaking in a ridiculous amount of donuts every night)

So, while we were beginning to feel sorry for ourselves and our crazy busy Christmas, we were reminded of an incredible story you may have heard of before. Through this process we have gotten to know a family on the other side of the United States. Their little baby is named Rudy, and this is what Rolf had to say Christmas Eve 2008 when they didn't make it out of the hospital:

So this is our Christmas and, the more I think about it, it’s all very appropriate. As I’ve shared in a few settings over the past few weeks, we tend to associate Christmas with preparation and organization. We shop, plan, decorate, dress and clean up. All this to commemorate an instance that was anything but. Mary and Joseph had no time to make plans and prepare but found themselves caught in a setting that bordered on deplorable. A birth in a cold, stinking stable. A baby placed in a crib that was far from cozy, sterile or hypoallergenic. No, a manger coated with dried spittle and decaying bits of cud from the livestock that dined there. Had they even the opportunity for the slightest bit of planning it would have seen them far away from anything like this. Yet it’s into this dirty setting, populated by frazzled and unprepared people, that God comes bringing life and hope. And that’s a tremendous comfort to us here in Room 5439 because it means that Christmas will come to us, regardless of how much we’ve prepared for it. Not to say we haven’t done a bit of planning, but our primary wish was to be together as a family. With this in place, we’ll let the celebrating begin.

Perspective strikes again...