Showing posts with label Home for the 1st time. Show all posts
Showing posts with label Home for the 1st time. Show all posts

Headed back to Charleston

Posted by Erin Wilson On Thursday, January 7, 2010 2 comments

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.


Josiah will be going by helicopter in probably 2 hours. Milo, I and the girls will be in the car and on our way shortly after. Please also pray for my Grandfather, Mom and Dad. My Grandfather fell in his driveway a couple of days ago and has been in the hospital. He is not doing very well at this point. Please pray for him and specifically for the doctors and nurses that are caring for him to treat him with the dignity that he deserves. Please also pray for my mom and dad as they are torn about where to be at this point. Pray that if they need to fly to Buffalo all the necessary arrangements can be made here and there.

Thank you for your support and prayers. As always, we'll keep posting.

-A heart that holds on


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Hanging out in the PICU

Posted by Erin Wilson On Wednesday, January 6, 2010 1 comments

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.


This is the kind of stuff at MUSC that I when we started talking about the possibility of going home I was concerned about. Josiah has never had even a week straight of good days. This is him, he is complicated. My concern has been are we being realistic to think he is going to be able to stay out of the hospital for any extend period of time. I know that eventually the answer will be yes, but right now the answer might just be no. And none of us have any inclination as to when that time might come. We got out of MUSC because he had 3 good days in a row. We came home and had one great day, then one AWFUL night, then 2 good days, then one bad day that has landed us back in the hospital. Obviously our hope is that the bad days begin getting fewer and farther between.

Please pray specifically that God would make it evident to Milo and I when we need to get back to MUSC. Pray for our girls that they would be comforted by God when we are not with them and while their routine is so uncertain. Pray that God would continue to heal Josiah and specifically for his heart cath that is coming up in 2 weeks. We are praying for the pressures in his lungs to be right so that Josiah can have his next open heart surgery.


- A heart that hold's on


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Happy Birthday, Daylia Joy

Posted by Erin Wilson On Monday, January 4, 2010 0 comments

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 is doing well with his new surroundings as are we. I slept at home last night but got up early to get back to the hospital (there is a whole new crew of nurses today and I wanted to make sure things were getting done the way we want them done) so the alarm clock was set for 6am. I woke up to Milo saying, "did you hear that alarm," which put me in panic mode until I realized that Josiah wasn't home and he was talking about the alarm clock (which I hadn't heard). I got up here to the hospital and Milo called at about 10am to check on Josiah and I. He asked me if I slept okay last night (meaning, did you sleep okay at the hospital last night), to which I reminded him that I slept at home with him last night. Boy we are all so confused!

We continue to take one day at a time and ask for provisions for today alone. I was reminded of a scripture this morning on my way to the hospital that was encouraging.

2 Corinthians 4: 17-18

"17 For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! 18 So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever."

I don't know the reason we are going through the things we are going through, but I do know there is a lot we don't see and I am far too small to see the big picture. One day, maybe.


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Getting used to a new hospital

Posted by Erin Wilson On Sunday, January 3, 2010 4 comments

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.


It seems like the earliest we would get out of here is Monday night or Tuesday morning. We'll see. The plus side to this stay is that we are allowed to stay over night with Josiah. I'm so grateful for that because it would be very hard to leave him with a strange crew. The staff here is good, they just don't know Josiah and his history yet. After being admitted here twice in our first week home, I think they might get to know Josiah pretty well too! I feel much more comfortable being here with him. It's hard to get used to a whole new system though.

Please pray for our precious girls. My heart is hurting for them with so much upset to their routine and uncertainty of what tomorrow brings. They were so excited to have Josiah home and now he's gone again. l've been missing them a lot. Tomorrow we are going to take them to the new children's museum here in Greenville for Daylia's birthday. I can't believe my sweet girl is turning four! It will be nice to do something special with them in our hometown!

Thank you for your prayers


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Ringing in the New Year!

Posted by Erin Wilson On Friday, January 1, 2010 4 comments

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!

We have been doing better since Tuesday. We had nursing care from 9am-5pm each day and both Wednesday and Thursday we had the same woman. Wednesday was still very difficult as we were still non stop with Josiah. Having to train a nurse on how WE want things done requires us to be so hands on still while she is here. So having the same nurse come back on Thursday was so nice. She just walked right in at 9am and took over our routine. We still did a lot with her but I actually got to take a shower, get dressed and run to the grocery store for a couple of things. Today we will have a new nurse, so we are back to square one. Please pray that the nursing company can find someone that will take Josiah on as their primary patient so we can get someone in here more regularly.

Since Josiah's "episode" on Tuesday morning we have not been comfortable leaving him unattended so we've been having someone awake with him through the night. We think that Josiah's issue on Tuesday morning started with a huge dirty diaper that he got upset about because he was sitting in it for too long. Because we were asleep we didn't know he had blown out his diaper and therefore he was crying and because he doesn't make any sound when he cries we didn't know he was crying. By the time the vent began alarming he was already way to worked up and upset. So we've had some friends that past two nights and Milo's mom and dad tonight help us with the night time shifts. Tonight's schedule looked like this
- Milo from 10pm-12am (Happy New Year!)
- Milo's mom from 12am-2am
-Me from 2am-4am
-Milo's dad from 4am-6am
-Milo from 6am- 8am

Thank God for help!

Josiah had a fever yesterday, which is what I was afraid of leaving the PCICU. Just because we left doesn't mean that Josiah's random fevers stop automatically. So I called the PCICU today when his temp got to 101.2 and asked their opinion. We are in a hard position because if I call our MD's here and tell them that Josiah has a temp of 101.2, it's New Year's Eve, so they are most likely going to admit us to the hospital to draw cultures and watch him. In the PCICU when this would happen 9 out 0f 10 times the cultures would be negative. So the MD in the PCICU and I agreed that we would wait this one out. Josiah maintained a low grade temp all day. Again we are praying that this is nothing. We'll see what today brings.

Thanks for keeping us in your prayers and we wish you all the very best in 2010!


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Why we have to wear pajamas

Posted by Erin Wilson On Tuesday, December 29, 2009 3 comments

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.


So what we think happened was that Josiah's secretions became very thick due to the 4 hour ambulance ride with out humidity to his trach. Josiah's vent has a heater that creates water vapor that get sent to his trach. This keeps Josiah's secretions from becoming too thick, which could plug off his trach. We had to shut off the heater on the trip to Greer, but did not think it was too big of a deal, as we had been told it wasn't. So this morning Josiah's trach became plugged with mucus. And in Josiah's distress when Milo suctioned him he had a response that dropped his heart rate and quit breathing. We didn't realize that it was his trach that was the problem at first because we were still getting his chest to rise with the ambu bag. What a we realize in hindsight was that the majority of the air we were giving him was being forced up and out his mouth not down into his lungs. When we changed the trach we were able to get him better breaths that brought him back. This all lasted about 15 minutes but it was the scariest 15 minutes that felt like 3 hours we have ever experienced. Our nerves are still way out on the edge.

We are grateful that Josiah made it through this "episode." And we are so grateful for the amazing training that we received in the PCICU that allowed us to respond to this event well. Especially to John and Christine for all their teaching on bagging and CPR. We prayed we would never have to use it but knew that we very well could, we just never thought we would need it our first night home. I'm grateful that we took the time last night to set up as much stuff as we could in Josiah's room so that in this emergency we knew where things were. I am very grateful that some little voice (the Holy Spirit) made me go back into Josiah's room last night as we were going to bed to find his ambu bag and place it on his bed. Thank you for all your prayers today and thank you God that we have another day with our precious boy.


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We are home!

Posted by Erin Wilson On 2 comments

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!


Josiah's loving his new surroundings. I laid him in his bed which is in front of a window and I decided to open the blinds for him. He stared out the window and watched his daddy make a million trips to and from the car. He could see beautiful trees and birds flying around our front yard. I could not have been happier to watch my son looking out the window. What a drastic difference from staring at the same gray walls for 7 months! Absolutely amazing.

Josiah is sound asleep right now. We are going to give him his midnight meds and then we are off to bed ourselves. So happy to be at home with our sweet boy. Praise God!


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