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.

Significant happenings today with Ella - January 6, 2016

Hello Team Ella,

Today was a good day. Ella actually got some pretty good sleep last night. Instead of waking up every two hours for her treatments, per her usual, she only had to get up twice over night, at midnight and then again at 4. Armed with a good night's rest she was able to tolerate her daily treatments a little bit more effectively. The breathing treatments still take a toll on her, but getting more sleep overnight certainly works to her advantage. Her oxygen saturation was a little low during the morning and early afternoon. Her respiratory therapist attributed this to the fact that her secretions were significantly looser than they have been all week and that there are more of them because the intubation tube is moving around, which slightly irritates her airway, thus causing more secretions. As we continued to stay on top of her treatments her oxygen level steadily improved throughout the day and her secretions lessened.

The increased secretions and throat irritation pointed to another issue. The tube inserted into Ella's mouth that goes down her airway is called an endotracheal tube. One end of the tube is connected to the ventilator that delivers oxygen support along with positive pressure to keep her lungs inflated and her blood oxygenated. On the other end of the tube is small balloon, this balloon is referred to as a cuff. It is through the cuff that gases are directed into the lungs.  The cuff is meant to seal the airway against leakage of respiratory gases so that her lungs stay inflated as well as prevent aspiration from stomach contents, blood, secretions and other fluids. In other words there shouldn't be a leak around the cuff. Ella's cuff has a leak; there are times, depending on the way she is positioned, where we can actually hear air getting past the leak. 

Thank God, up to this point she has not aspirated any of the feed getting pumped into her stomach. But because there is a leak she is not getting all of the pressure support she is supposed to be getting. Which means the endotracheal tube is not doing everything that it is supposed to be doing and everyday that the tube stays in Ella's already weak diaphragm, gets weaker. Weaker diaphragm means it become even more  difficult for her to cough and clear secretions on her own, this leads to increased chance of mucus plugs and respiratory failure. For these reasons it was decided today to remove the tube tomorrow sometime between 12 and 1 pm. While we would prefer the tube to be coming out under different circumstance we are pleased that the tube is coming out. However, it is the process of removing the tube that represents a significant risk. The first time our baby went into serious respiratory distress was when she was extubated as an infant following her muscle biopsy. This is what lead to our first ICU stay at CCMC in Hartford. 

We have been talking about extubation since last Thursday when she was intubated. Mommy has provided the team with some of research and guidance on the best way to approach this process to avoid leaving our baby with more secretions than she is able to clear on her own. Everyone understands that we absolutely need to get his right.

We are sharing all of this not to present some dire picture of how bleak things are, but rather to be completely transparent as to everything that we are dealing with and to give you enough details so that you know exactly what to pray. We are asking Jesus to allow the removal of Ella's endotracheal tube to free of complications and to leave without extra secretions. We are praying that when the tube is removed it will not need to re-inserted at a later date. We are praying for a smooth transition from the tube back to her bipap ventilator. We are praying that the bipap would deliver the right about of pressure support Ella's lungs need to recruit and stay inflated. We are praying that tomorrow marks the beginning of Ella's full and complete recovery according to God's perfect timing.

Thank you for standing with our family, thank you for not giving up, for not getting tired, for not getting bored, for not loosing faith. Thank you for your love. Tomorrow is going to be a great day. We are all more than conquerors.