Day 139

It was a long, hard weekend filled with many scary moments but yet we sit here today filled with peace, hope and determination. Our God is so good.

After going back on the vent on Friday Bella has been up and down. We have been reminded again that each and every day with her is truly a blessing and we should be grateful for every moment. Bella started showing signs of improvement on the vent with better saturations last night about midnight. Today she started nitric oxide for treatment for her chronic lung disease. The nitric oxide mixes with the 02 and carries blood to her lungs helping her to oxygenate. We saw her heart rate drop from 180's -190's to 150's- 160's and her sats go into the 80's-90's. We even saw her hit 100 a few times. We are hoping that this will help us wean her oxygen down, she has remained on 100% since going on the vent.

We are so appreciative to have our favorite Dr on board this week. This woman is brilliant, compassionate and has a true love for what she does. This weekend I had another Dr tell me that he thinks Bella has lethal chronic lungs and he does not see any hope for survival. While we appreciate the fact that he gives his honest opinion (which is never easy) we respectively chose to disagree and disregard. He agrees that Bella has proven him wrong many times. We were anxious to get our favorite Dr's opinion today as she seems to see the same Bella we see, full of life & hope. We asked her the question: does she agree with the last Dr's opinion? The summary of the answer is that if we look at the medical facts then yes the outlook is grim (it has been from the beginning) but if you look at Bella- how much she has overcome and the life she has shown so far then there is hope. She agrees that if she has come this far why should we give up now. We should leave no rocks left unturned.

So that is where we are today. They had to push our care conference back until Wednesday (we hope) where they will have the team of doctors together talking about any treatments that they know of or have heard of to treat her lungs. We are looking for any new clinical trials or treatments to treat Chronic Lung Disease and assist with the regeneration of new lung tissue. They will also be discussing a transfer to Vanderbilt for a trach evaluation. Our Dr has already contacted someone at Vanderbilt for insight to see if they have any ideas for treatments that are not being used at Centennial at this time. We are also looking for any hospitals in the U.S that is on the cutting edge for treatment options. We do not care how near or far we have to go, we will go the distance. We have faith that the Lord will lead us to the answers we need. If any of you have any experiences or medical contacts that may have any insight we would appreciate passing along this information and contacting me at telishacobb@gmail.com with contact information. Again we are leaving no rocks left unturned.

Also if anyone has any experience or input on the following treatments again we would greatly appreciate your insight. These are treatments I have found thru research online. Our Dr is currently checking into them as well.
-TGF-beta (this is from an article written in 2007, at that time no clinical trials were being done) it is a protein that controls cellular functions. It supposedly improves lung development and decreases dysplasia.
-Sestrin- (this is from an article written in 2009, do not know if clinical trials are being done now) When inhibiting this antioxidant protein, it prevents the accelerated degradation of elastic fibers within the lungs. This is one of Bella's big problems with her lungs.

By no means do we think we know as much or more than our Dr's because we have internet access but we have seen that taking a proactive approach in her treatment can work wonders. We also have seen our blog and story spread across this country so we know how many people can be reached now by writing this.

We are not desperate, we are determined. We move forward with faith knowing that if there comes a time that we need to say goodbye to our sweet girl, if it is time to give her to the Lord,then he will let us know. We are not there so we will continue to fight with her and for her. We will continue to fill her with every bit of positive energy and every ounce of hope that we have, we will not give up or give in. We appreciate all of you more than you will know. We appreciate prayers for wisdom and knowledge as we search for the answers. We pray that some day we can tell her of your kindness and we know that she can feel your love.

Much love to you all
Telisha