Ella continues to rebound - January 11, 2016

Hello Team,

This is your daily update on Ariella the Conqueror. Last night our little warrior made some modest improvements toward clearly her lungs and breathing more effectively. As a result of her improvements the respiratory team decided to space out Ella's treatments so she should could get some much needed sleep. I'm sure this will not come as a shock, but the sleep helped. After a good night's sleep Ella continued to make moderate improvements throughout the morning. As the day progressed our she continued to show slow, but steady progress. Doctors have lowered some of the support she is receiving on her ventilator they have also started to her off of the oxygen support. 

In addition to her respiratory improvements Ella also spent the day engaged in art therapy. She did a lot of painting and even directed her daddy as to how she wanted her art work displayed in her room. It is such a blessing to watch her battle through this. Our faith just continues to grow each day as we watch God work through her.

Lastly we have been made aware of a number of individuals organizing prayer on behalf of our baby. I don't know exactly who is reading this blog and how many of you are praying or how often or for how long. Truthfully while we are certainly grateful for all of the displays of faith and unity and for everyone who is praying, what we hope comes from all of this is perhaps someone opens their heart to the Lord and they can receive healing too.

We are all more than conquerors.

                                          

A slow day with the tube back

Greetings everyone I wanted to just provide you with a brief update as to Ella's progress. As you may have already read the endotracheal tube was reinserted this morning at about 4 a.m. the procedure went well, however Ariella did not make a lot of great progress today. Her numbers were low and her strength was diminished. Having said that the respiratory team made a small change to her tube tonight and that has made significant difference. Ella is doing very well right at this moment. Her numbers are the best that they've been all day and she is resting comfortably. Everyone is taking a much more conservative approach this time around which is definitely to Ella's advantage. Continue to check back for updates and kno that our little warrior is fighting with everything that she's got. We are all more than conquerors.

The Tube is back in

Our little conqueror had another night of several  desaturations. A desaturation or "desat" is a period of time when the oxygen concentration in Ella's blood falls below a certain percentage for a sustained period of time. For Ariella a desat is any her O2 concentration falls below 89% and remain that low for longer than 30 seconds. This is particulalry dangerous becuase she is not able to effectively exchange carbon dioxide and oxygen. If she remains in desaturation for too long there are serious long term health risks. For these reasons and the overall toll this has had on our little warrior's body we agreed with the PICU team to intubate Ariella again. She was successfully reintubate at about 4:30 this morning and is now resting. We are still in the process of developing the plan for the week, but we wanted to keep the team up to date as to what is happening with our angel. Thank you for following the blog and thank you for continuing to care. We are all more than conquerors.

Still on the roller coaster

Please forgive the brief posting but I wanted the team to know what is happening with our little warrior. Ella had a very good day yesterday we made some good progress after a challenging night. Her numbers settled and we were able to pull back on the pressure support and oxygen she was receiving. However, perhaps we made the mistake of pulling back on her pressure support too quickly because once again last night and early this morning our baby has had another setback. She is stable right now but we are faced with the thought of needing to reintubate her, this time using a larger tube and delivering more sustained pressure for a longer period of time. We have not made that decision yet, but it is on the table for consideration. Please continue to pray we will keep you all apprised of our conqueror's condition. We are all more than conquerors

Ups and Downs January 8, 2015mm

Hello Team Ella,

One of the blessings of being Ariella's parents is that you have the opportunity to experience the full range of emotions and experiences that come with raising a special needs child. The highs are incredibly high, the lows are devastatingly low and still there is so much joy in between. We have learned so much from Ariella on this journey, including learning the value of patience and faith.

That being said Ella had a really good morning and afternoon but as the day moved along she began to have more challenges and it became increasingly more difficult for her to breathe on her own. Things got very difficult between 5 and 6 this evening when it became clear there were several mucus plugs in her lungs that needed to be removed. Through much diligence and hard work we were able to move the secretions around and get to a place where she's doing a little better. The pressure support has been increased on her breathing machine and she is still getting a fair amount of oxygen but she's doing better now than she was earlier.

We know you all are praying for Ella, and she definitly needs your prayers, however tonight please put your minds on the Yale New Haven Children's Hospital PICU, every room is being used and in some instances the children have very dire needs. You all are such amazing, caring and faithful praying individuals we need to ask you to pray for the 7th floor of the New Haven Children's Hospital and specifically pray for the intensive care unit they need your prayers tonight. Ella is going to make it, she will be better and so will the rest of her floormates. We are all more than conquerors.

The Tube is Out part 2 January 7, 2016

A big thank you to Career Team, LLC for Ella's new Friends

Greetings Team,

As you many of you read earlier this afternoon, the extubation was a success. The Yale New Haven PICU team was able to quickly and safely remove the endotracheal tube without any increased secretions or other adverse complications. Ella went directly from being extubated to being put on her mask and the bipap machine that was helping her breathe prior to being intubated. The bipap's pressure settings are the same as those of the intubation so Ella is still getting a lot of pressure support along with additional oxygen, but this is a good step.

Mommy is staying with our baby tonight and she reports that her numbers and status continue to improve. At this point we are going to watch and wait on her. Ms. Ella, as usual, is in charge and will dictate her care plan.

I wish I could give you all a time line or definitive expectation. What I can tell you is Ariella Christina Botts is still here because you didn't give up, because you didn't grow inpatient, because you were willing to sacrifice and place the care and concern for a little girl above your own comfort. On behalf of Rachel, Charlie, Daniel and Ariella - Thank you for continuing to pray.

WE ARE ALL MORE THAN CONQUERORS!

The tube is out!

I will write more later but mom and I just wanted to let everyone on Team Ella know that the tube is out and she is breathing comfortably her own mask. There are many more steps to take on the journey to Ella's full recovery, but that journey begins with one step and this afternoon she took a good one. Your prayers brought her through.