Care Conference update

The care conference was very positive in our opinion. Dr. Yang does not think Carson will require a ventilator at home and will be able to wean off before leaving. Hip hip hooray : ) They are thinking several weeks to get off the ventilator, then a few weeks on CPAP and try a trial on the trach collar. But Dr. Yang does think he probably will need a trach collar at home. We are going to keep on praying for a miracle and no need for ventilator or trach. The neonatologist feels differently though and thinks Carson will need a ventilator. 

Today, they were able to wean his rate on his ventilator to 16. The plan is to get to 12 on the rate and then start on the pressures. We feel more confident with Dr. Yang's assessment b/c he is the surgeon that removed the mass and has been there the whole time. Brain, heart, kidneys, and intestines look wonderful. He still has a clot in his liver which they are monitoring. He will probably need to be on Lovenox for 6 months to prevent any worsening of the clot in his liver to be on the safe side. 

They do think he will outgrow all his lung problems by the time he gets to school age, but we just have to wait to see. So all in all we are very very happy. We feel all the doctors and nurses are on the same page. We just need to keep praying for miracles for his lungs! 

Thank you so much for your prayers! We are beyond grateful for all the truly caring, loving people that have blessed us and all our families along this journey.

Care Conference is Friday...please pray!

The doctors weaned Carson's rate to 20 on his ventilator today. They are going to wean to 15 on the rate before weaning any of the pressures. In another bit of good news, his liver enzymes are steadily dropping which is excellent. It may be because the clot is resolving (praise Jesus) or something else, but we are going to say the clot is resolving. The doctors are not checking another ultrasound of his liver until late January, so we will just have to wait to find out. He has done well with his two bottles and we are still just continuing to pray believing miracles will happen in his precious lungs. 

The care conference is at 11 AM tomorrow (CST) so let's all pray together that the doctors will give him a chance!

Posted by Sarah

Today has been somewhat discouraging for Preston and Elizabeth. They have been so faithful through this journey, and I cannot say how proud I am of them. Please be praying for continued strength and peace for them, because it has been a challenging week. 

The neonatologist told them today that he felt Carson would go home on a ventilator and would continue to require his tracheostomy. Our prayer has always been that Carson could go home without even a tracheostomy. However, none of us expected for him to have to go home on a ventilator. It will be incredibly limiting to have a ventilator. This was really difficult news to hear for all of us. The doctor did not say he guaranteed a ventilator and trach, but felt Carson would have them. We are praying Carson can prove the physicians wrong again and God would continue to work miracles in this situation. 

Carson did take two bottles today and did well with them. His rate was weaned to 22 on his ventilator but they still have not weaned pressures. Sometime today, Dr. Yang and the neonatologists are going to talk about what to wean. 

And finally, they have moved the care conference up to Friday, so please be praying for this important meeting between the doctors, nurses, and Liz and Preston. 

Kellen continues to do very well.  

Posted by Sarah

update for today

Carson is doing well. They did not get a blood gas today, so they did not wean on his ventilator. They will be getting labs tomorrow and hopefully, if all is good, will wean to 21 on his rate. The neonatologist believes they will wean about 3 more times and then start on his pressures. 

He did well on taking his bottle, so they are going to let him try two bottles tomorrow at 9 am and 3 pm. They also are feeding him directly into his G-tube with no tubing or venting, so this is a step towards just having a button. 

Please keep praying for the care conference, clarification, and expectations and goals for Carson.  Thank you everyone!

Posted by Sarah

let's pray extra hard for Carson's lungs

Today, there really aren't any changes. Carson's carbon dioxide on his gas was a little higher, so they did not wean the ventilator at all. He did gain 85 grams which puts him about 7 lbs 13 oz. He did very well on taking his bottle today. But again, other than that, no changes.

Elizabeth and Preston are going to have a conference with the doctors next weekend if all works out as planned.  It will be to discuss the future plans for weaning the ventilator, projection for going home and expectations. Please be praying for direction for the doctors, nurses, and Preston and Liz. It will be a good opportunity to make sure everyone is aware of the plan and expectations. 

On that note, we need to really keep up the prayers for Carson's lungs to heal, enabling him to get off the ventilator. We are all praying very hard that he will be able to go home without the ventilator. If not, it would add many additional difficulties...requiring 24 hour nursing care, more possibilities of pneumonia, and not being able to vocalize. 

We know the Great Physician is in charge, but we are praying for Carson to go home soon without any need for respiratory support beyond oxygen. Thank you for joining with us!!!

Posted by Sarah

Happy New Year!!!

The Clark Family is doing really well on the first day of 2012! Preston fed Carson 40 mL from a bottle today. It was absolutely wonderful to see Carson in his Daddy's arms doing so well. 

Carson's blood gas this morning was excellent, so they weaned more on his rate... down to 25. Tomorrow, they are going to get another gas and see if we can wean again. The plan at this time is to wean the rate down to around 10 and then start weaning the pressures. 

Let's all just keep on praying for Carson to continue to get stronger!

final update of 2011!

Carson did well today. They weaned his ventilator to a rate of 27. He took 37 mLs from a bottle that Liz fed him!!! Both sets of grandparents got to see Carson take a bottle. Tomorrow, the doctors will get lots of lab work so we will see how well he has done the last few days with the weaning of his ventilator. 

From the Bunch/Clark families, we wish you a wonderful New Year filled with many blessings!!