Justus will not be coming home today. He is now dehydrated and is not wanting to eat. There is blood in his stool and a high potassium level in his body. If he doesn't eat another feeding tube will be placed. Please pray for him to eat and for him to become hydrated. Thank you.
Thursday, September 24, 2009
Yes, you read it correctly!!!! We have been okayed for discharge tomorrow. Praise the Lord! We will stay at the Ronald McDonald house through Friday night and be home Saturday! So thankful, happy, relieved, etc. etc.
One happy mama here! Thank you for all your prayer!
Wednesday, September 23, 2009
Today was a busy day. Justus has had a great day. He got alot of lines removed and drugs stopped. That is excellent news. He is now clear to move to acute care. We are just awaiting a bed. It is a busy time on the floor right now. So now Justus continues to try and re-learn how to nurse. We are having a difficult time. We will get through it. He is also having to rid his fluid level - he has more fluid in his lungs. This is a bit normal after open heart surgery. We just don't want it to continue to build or else it may cause problems. Overall - Justus is doing great! Thank you to all who have prayed for our son!
I have also gotten to know a young lady named Alecs who has a five week old boy named David who is in the CICU battling for his little life. He is critically ill awaiting a heart transplant. This morning he almost passed. They were very close to putting him back on life support. If they put him on life support he gets his name removed from the list awaiting a heart. His oxygen saturation levels were in the 30% range all night last night. I prayed with his mother and when we re-entered his room we could see on the monitor his levels were rising. Praise be to God! That said - he desperately needs a miracle. His father is in Istanbul pastoring and cannot re-enter the states. His mom is here at the hospital and only has her mother and father here in town. If you think of them could you please pray for peace and perhaps a miracle for David? Thank you.
I know God's hand has been in all of this. I know this is one of the reasons why our son, Justus, had such a difficult time on Sunday. It may have been a setback for Justus - but it was God's providence that allowed us to meet and pray with Alecs while in the waiting room during my son's fight to recover from fever. I KNOW that is why this all happened. She knows it too. She refers to Phillip and I as family to the other nurses and staff. She is thankful to our Lord for the support from our Pastor as well. Think of it moms... if you were watching your infant son struggling for life and all the while standing by his bedside alone! I am honored that Christ has allowed me to come alongside her and hold her hand. Her family is precious to us. Sunday night I wept and asked God why my son was going through so much - He didn't have to give me an explanation or show me why - but He has. Alecs met Justus today. She held his hand and said thank you. She said to my little "Butter" that if he had not been there she would not have gotten to know all of us (Phillip, myself and Pastor). This is all to God's glory. Not of myself, nor anyone else. This is just how Christ works. To offer her encouragement when she needs it most. He truly never forsakes....
Thank you for your prayer on behalf of David, Alecs, Caden, and Justus.
Tuesday, September 22, 2009
Just a quick update: Justus is off the ventilator!!!! :-)
Daddy is currently holding him. His blood gas looks great! Fever staying down with Tylenol. He is still on feeding tube. His chest tubes are out! Praying that this continues to be the trend. Thank you for all your prayer! We are so very thankful! Can't wait till little "Butter" is all better.
Justus is being prepared for coming off the ventilator. This is a long process that involves turning off his morphine and stopping his feedings via feeding tube. Please pray that this process goes successfully. Also - his core temp. is a little higher this morning than last night or yesterday. Please pray against fever. Thank you. We will update later today if ventilator removal went through or not.
Also - yesterday we had the opportunity to meet a sweet little boy named Caden who has Down Syndrome and is fighting Leukemia. He is two years old. Precious. He and his mom are here from Alaska and are separated from their family due to costs of airline tickets. We immediately felt a bond with them. I would ask that you pray for sweet Caden. He is absolutely beautiful. You can see pictures of him on my Facebook wall. We sat and prayed with him and his mom for healing.
I am thankful that through our storm - God allows us to feel encouragement by loving and getting to know others as they face their own storms. May Christ receive all glory.
Monday, September 21, 2009
Sunday, September 20, 2009
Our sweet little four month old Justus underwent open heart surgery last Thursday to correct a condition known as TOF. The surgery went well and by Friday morning Justus was on target for coming off the ventilator while in the CICU (cardiac ICU) in Seattle. In order to come off the ventilator the staff cuts all pain meds. to see if child can breathe on his own (sounds barbaric - given that he had just had his little chest open the day prior). They turned off his morphine and was allowed to wake on his own. As the day progressed I noticed that he was in a considerable amount of pain. My stomach was in knots. His little chest also started to make horrible clicking sounds... and they continued to get louder as the day moved on. Later that night you could not only hear the clicking, but feel his bone moving in his chest when he breathed - as if the sternum was apart and rubbing against itself. He spiked a fever that night at midnight. I - was scared. There was absolutely nothing I could do as I watched. I continually cried out to God to fix this, that is all I could do, just ask Christ to intervene. . . He did.
That next morning the surgeons performed their rounds. Upon discovery of Justus - the surgeon immediately scheduled him for another surgery. My husband's suspicions were right. Justus' sternum had separated and was rubbing upon itself. I broke down in tears. It was hard the first time letting him go, and it did not become easier. There was also a fear of infection, which could translate to bad. Justus was readied for the surgery, and our friends and family were called - my husband asked all to pray.
During all this... dare I say ... I asked why? Why did God allow such a thing to occur? Why? I could not understand. Was it somehow my fault? Was Justus not ready for surgery and we were just pushy? Why would this happen to him? Why all the pain for my sweet little baby?
The answer would come...
Justus came out of the second surgery and was doing great. He even looked better. His little countenance was not grimacing any longer. I felt a huge amount of relief seeing that he was feeling better. Then family visited and I got to see and hold and kiss on all of my sweet little children. Ohhhh... how I miss them. It was then that I got the answer to my question that I had been repeating within my heart all through the night... my husband wrote of it on Facebook and so I just copied it to here:
"Why Lord? We often wonder why things happen in our lives. Charrissa and I have certainly been challenged with that as of late. Today we had family and Pastor visiting us at the hospital. After they left the nurse (Eileen) was speaking with my wife... about how wonderful it was to see such love and support from our family and friends. She commented on our children.This conversation lead to a discussion where my wife was able to share the gospel of Christ to our fantastic nurse. She was so very interested in our story and our story IS our Saviour. Oh how the love of Christ manifested is such a testimony to others. (John 13:35). Funny thing is,she was only seeing the tip of the iceberg for she could not see the hundreds of people that have been coming boldly to the throne of grace on our behalf and seeking God's face for our little one. We are so thankful for the love of Christ manifested!As the conversation continued with Eileen, they happened to be speaking about the providence of God, sharing stories of how God's hand has been on our son and the many stories of how we see Him at work. During this conversation, they began talking about the many extra bottles of milk that we had a heart to donate or give to someone who was in need.As the nurse was researching, online, a place to give the milk another nurse came in, to which Eileen asked if she knew of a good place to donate the milk. The nurse broke down in tears and stated how there was another nurse who is adopting a child and is looking for milk to feed her new little one. When it was agreed the extra would go to the other nurse in need, the nurse said to my wife and Eileen, "This is nothing short of the providence of God."
I would be shorting the story if I did not tell you that the nurse who was weeping and speaking of the providence of God was a nurse that we had a VERY difficult time with during the season of battle that we were having last night. How gracious of our Lord to allow us an opportunity to love on her and encourage her."
This has been a roller coaster of a ride for our family. However, that being said - I could not imagine the ride without Christ being at the controls. That He would allow us to be apart of bringing glory to His name in sharing the gospel to one soul - is simply humbling. I can honestly say that my heart is comforted to know that although Justus is still "recovering" there is already a victory. A seed has been planted. . . I pray it would find roots and grow.
To those who have been in prayer: I, nor my family, can thank you enough. It is the most humbling thing to have people pray for you and encourage you. Our sweet baby is such a gift. He has been used of God to teach many lessons - and yet only four months old.
I will continue to update as I have time. Justus is doing well. He continues to battle fever here and there. We are praying that he does not have an underlying infection. We will get the cultures back on Monday or Tuesday. If you think of it, could you please pray against infection as well? Thank you so much!
Thursday, September 3, 2009
Just a quick update. (I am better about posting updates via Facebook - just easier and quicker)
Justus is scheduled for open heart surgery September 17th at Seattle Children's Hospital. He has a full day of pre-ops the day prior. Very mixed feelings here. Hopeful and excited to have this behind us and no longer over our heads - BUT .... this is my sweet little baby facing such a BIG surgery and that makes me weep. Being very honest here. Then my Lord reminds me through scripture (esp. Psalms) that Justus is in His hands. That is a comfort. I love my son - fervently. I am so thankful for his little life being entrusted to Phillip and I, as I am all of my children.
Updates may be spotty - but I will try. Thank you in advance for your prayer - and support.