Angel Maxton's blog says that "Some souls are so special, heaven can't wait." I believe that is the case today as we say goodbye to a brave CDH warrior who fought so hard during his short life. Baby Jackson took his last breath today around 1:00pm in Candice's arms. Rob and Candice are shattered right now, living every parents worst nightmare, but were remarkably collected as we spent time with them at the hospital this afternoon. It's not much of a surprise since they have shown unbelievable strength and courage during this long and painful journey. We know there is a reason and a purpose for all of this sadness and pain although we remain frustrated as we can't truly wrap our arms around it. Baby Jackson has touched many lives and taught us what true courage and bravery are all about. He has taught us to appreciate life more while demonstrating just how fragile it really is. We are privileged to have shared in Jackson's story no matter how short the chapter.
Rob and Candice, Stephanie and I are so very sorry for your loss. If there is anything either of you need, you just simply need to say the word. Take care of each other friends and we are here if you need us.
Shawn
Saturday, August 8, 2009
Prayers needed for Jackson and Family
It is with a heavy heart that I update all of you on Jackson's condition today. Jackson has not made good progress overnight and the medical staff has let Candice and Rob know that Jackson won't be able to overcome the hypertension. Around 5:00am, his body gave signs that it just couldn't handle the situation any longer. While his heart and lungs appear to be stable, the stress on his body is just too much. They estimate he has probably around 8 hours until he will leave this amazing couple and truly be at peace. Rob and Candice find some comfort right now as they know Rob's father is awaiting Jackson's arrival with open arms in heaven.
Jackson is not in any pain right now and they are preparing him for Rob and Candice to spend time with him this afternoon. Stef and I are heading up to the hospital in just a little bit to be with them.
Please pray for this dear family that they find the strength to endure this afternoon and the days, months, and years ahead of them without their precious Jackson. Please also pray for Jackson that he has a peaceful transition from this world to a much better place in heaven.
Shawn
Jackson is not in any pain right now and they are preparing him for Rob and Candice to spend time with him this afternoon. Stef and I are heading up to the hospital in just a little bit to be with them.
Please pray for this dear family that they find the strength to endure this afternoon and the days, months, and years ahead of them without their precious Jackson. Please also pray for Jackson that he has a peaceful transition from this world to a much better place in heaven.
Shawn
Friday, August 7, 2009
Still on ECMO
I wanted to give you all an update on Baby Jackson. Jackson has been on ECMO for 9 days now and unfortunately hasn't made a lot of progress. He has had at least one circuit change and didn't do to well. He is stable right now, but surgery isn't on the immediate horizon as it was a couple of days ago. His face is swollen, but the rest of his body isn't as swollen as much as it could be from ECMO.
The hypertension is still pretty severe right now and it doesn't look like he will be coming off ECMO in the immediate future. Our hearts are breaking for this family as we understand that they are going to give Jackson the weekend to make progress and then assess Monday what, if anything, can be done further to help him make progress. They have done about everything possible up to this point to get him over this hurdle, but the hypertension is persistent and not showing signs of decreasing. As Candice told Stef today, they are going to try two more types of medicine on him and give him through the weekend, and will assess from there.
We know that there is still hope as many baby's have been on ECMO much longer than 9 days and survived. As you can imagine, Candice and Rob are devastated though with the progress right now. We are praying that Jackson can make some positive progress over the weekend and hope you will join us in prayer for Jackson and for the family.
I will update as soon as we have more information.
Shawn
The hypertension is still pretty severe right now and it doesn't look like he will be coming off ECMO in the immediate future. Our hearts are breaking for this family as we understand that they are going to give Jackson the weekend to make progress and then assess Monday what, if anything, can be done further to help him make progress. They have done about everything possible up to this point to get him over this hurdle, but the hypertension is persistent and not showing signs of decreasing. As Candice told Stef today, they are going to try two more types of medicine on him and give him through the weekend, and will assess from there.
We know that there is still hope as many baby's have been on ECMO much longer than 9 days and survived. As you can imagine, Candice and Rob are devastated though with the progress right now. We are praying that Jackson can make some positive progress over the weekend and hope you will join us in prayer for Jackson and for the family.
I will update as soon as we have more information.
Shawn
Tuesday, August 4, 2009
Current condition
Good evening everyone, it's Shawn again. Stef spoke with Candice tonight and we do have some updates to post about Baby Jackson. First, he has been moved to a high frequency oscillating ventilator (HFOV) and this appears to be working well to keep Jackson's lungs inflated while on ECMO. Candice can see his chest moving up and down which I know is very reassuring to them.
They will take another x-ray tonight to see how his lungs look because they are now contemplating surgery. It looks like they are leaning towards Jackson being repaired while he is on ECMO and the x-rays will be one of the clues to when that moment of opportunity presents itself.
We are currently waiting on a picture of Baby Jackson that should be here tonight sometime and we will update this post with that picture.
Candice sounds like she is holding up well, but is just exhausted as she spends all day at the hospital and has to be emotionally drained, not to mention physically exhausted since giving birth under very stressful circumstances.
Honestly, Candice and Rob are in a situation that Stef and I can't fully appreciate as we were spared ECMO and this chapter of CDH. Some of you who are reading this know the ECMO world far too well and can relate first hand to the emotional battle they both must be going through. Please pray not only for Baby Jackson to fight and overcome this ECMO stage, but also for this very sweet family to find the strength to endure this chapter and comfort in the current strategy to save Baby Jackson.
Shawn
They will take another x-ray tonight to see how his lungs look because they are now contemplating surgery. It looks like they are leaning towards Jackson being repaired while he is on ECMO and the x-rays will be one of the clues to when that moment of opportunity presents itself.
We are currently waiting on a picture of Baby Jackson that should be here tonight sometime and we will update this post with that picture.
Candice sounds like she is holding up well, but is just exhausted as she spends all day at the hospital and has to be emotionally drained, not to mention physically exhausted since giving birth under very stressful circumstances.
Honestly, Candice and Rob are in a situation that Stef and I can't fully appreciate as we were spared ECMO and this chapter of CDH. Some of you who are reading this know the ECMO world far too well and can relate first hand to the emotional battle they both must be going through. Please pray not only for Baby Jackson to fight and overcome this ECMO stage, but also for this very sweet family to find the strength to endure this chapter and comfort in the current strategy to save Baby Jackson.
Shawn
Friday, July 31, 2009
Resting on ECMO
Baby Jackson is stable and resting on ECMO. For those of you who don't know about ECMO, it is basically a heart/lung bypass machine that will give Jackson's lungs a rest and time to develop more. ECMO is used when the ventilator settings would have to go outside the "gentle" ventilation strategy settings to keep O2 and CO2 measurements in check. To avoid compounding the already critical situation by damaging his lungs with more aggressive ventilator settings, they bypass them with ECMO and perform the O2 and CO2 gas exchange in the blood in a machine and then return it to his body.
Stef did get to visit Candice today and she is still in a lot of pain. She may be discharged as early as tomorrow. We did hear that they determined the liver is down below the diaphragm which is good news and should make for an easier surgery. The surgery isn't on the immediate horizon as they give Jackson some time to rest.
Please continue to pray for this little CDH warrior who is fighting so hard to get through this difficult battle.
We will update as we get more information.
Shawn
Stef did get to visit Candice today and she is still in a lot of pain. She may be discharged as early as tomorrow. We did hear that they determined the liver is down below the diaphragm which is good news and should make for an easier surgery. The surgery isn't on the immediate horizon as they give Jackson some time to rest.
Please continue to pray for this little CDH warrior who is fighting so hard to get through this difficult battle.
We will update as we get more information.
Shawn
Thursday, July 30, 2009
Current status
The medical team worked for a few hours last night trying to stabilize Baby Jackson on a ventilator, but determined that wasn't going to be possible. Around midnight, he was transferred over to Children's hospital and was placed on ECMO to give his heart and lungs some time to rest and develop.
Candice is doing ok, but she is still in a lot of pain. We weren't able to see her or Baby Jackson today, but hopefully will tomorrow. Candice was able to see Jackson last night before he was transported to Children's.
I am really at a loss for words right now when I think about everything this wonderful family has been through just over the past couple of days. I will continue to update you all each time I get a status update and ask that you continue to pray for this little fighter.
Shawn
Candice is doing ok, but she is still in a lot of pain. We weren't able to see her or Baby Jackson today, but hopefully will tomorrow. Candice was able to see Jackson last night before he was transported to Children's.
I am really at a loss for words right now when I think about everything this wonderful family has been through just over the past couple of days. I will continue to update you all each time I get a status update and ask that you continue to pray for this little fighter.
Shawn
Wednesday, July 29, 2009
Jackson has arrived!
Jackson was born tonight sometime around 7:30. I don't have a lot of details, but will continue to update as info comes in and definitely will have more tomorrow when we are up at the hospital. Jackson appears to be in pretty severe respiratory distress right now and the doctors have indicated they are struggling to stabilize him. They are going to continue trying to stabilize Jackson for a while and then assess if ECMO is the right path to take.
We just received the first picture of Baby Jackson:
The family is struggling to take it all in right now and are terrified. We anticipated Jackson might be critical early on and it looks like that is the case. Please pray for this family who is searching for answers and trying to make sense of the current situation and strategy and please pray for Jackson to fight like mad to stabilize.
I will update as I get more information tonight or in the morning.
Shawn
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