Ella outside in the healing garden - February 6, 2016

Hello #TeamElla,

Our little conqueror has taken to the tracheostomy like a champ. In a previous post I mentioned that mom and the medical staff were trying to devise a pain management regime that minimized the occasion of discomfort, but also did not promote dependency or become habit forming. With less pain Ella can concentrate on getting stronger/healthier. In fact over the last several days we have seen Ariella do more with the trach than she did the entire month without it. It is becoming increasingly more apparent that this was the right decision for Ella to improve her overall quality. In fact Ella has been doing so well that she earned a special trip outside to the healing garden. The garden has rocks and wind chimes and small statues that Ella got see and touch and breath fresh air. It was a great experience. 

In addition to the outdoor activities, Ella has also started to do some tasting and eating through her mouth she had a banana almost 8 ounces of water and some chocolate. This little girl is an absolute wonder and continues to soar.

Thank you all for your prayers for your diligence and for continuing to hold up mom and I. We are all more than conquerors. 

                                                                             

Day 1 with the Trach, Ella update - February 6, 2016


Greetings more than conquerors. Today was Ella's first full day with her new tracheotomy. She had one brief occurrence of desaturation, but rebounded immediately with the side of some suctioning. The big priority for today was pain management. Our angel was clearly uncomfortable and acting anxious most of the day. Mom worked worn the medical staff to develop a pain management schedule that world help our baby rest and recover.

She also had a very special visit with her cousins today. She loves playing with her Jackson.
While it is still early, there are some initial indications that she will do well with her trach. Not even six hours after surgery yesterday Ella was eating pizza sauce by mouth. We haven't been able to give her anything by mouth for a month and a half, but just hours after getting her trach she gets to eat something for the first time in weeks.

I don't know what the future holds but I know my baby's future looks bright.

We are all more than conquerors.

She's out of Surgery

The conqueror has conquered yet again. She is out of surgery and resting comfortably. The surgeon said it was a complete success. A boring uneventful surgery. Thank you all for your prayers. Now the real work begins.

#BeardsformyBaby

Even as I write this Ella the Angel is in surgery. I wish I could tell you all that I have supreme confidence in how amazing this will go and how great she will be as a result, I can't. However, in spite of my uncertainty I have peace of mind. So while I wait for my baby to come out of surgery I wanted to share this with the team.

One of the running jokes between me and my baby is that Ella has crazy hair and daddy has no hair. Occasionally daddy will let his beard grow out so Ella can play with it and so daddy can feel better about having some hair.

As a way to stand in solidarity my boo during this difficult process I promised her I would not shave until she was back at home. Furthermore, I promised her she could help me shave when she was home.

I would like to invite all my fellow men, whether you are a dad, uncle, grandpa, pops, tio, abuelo, etc... to join with me by letting your beards grow. Tweet your bearded pics to @iammtc #BeardsformyBaby I will post your pics to the blog and share them with Ella.

When she gets home we can share our photos of shaving in celebration. Whether you have kids or not join me and Ella as we grow out our hair until she's home.

#BeardsformyBaby #TeamElla

Tracheostomy

Greetings Team Ella, our little warrior has had a great week. Her lungs sound clearer, her x-rays have been clean, her vent settings are lessened and we have even been able to space out her respiratory treatments to every 3 hours. By all accounts Ariella is doing very well and yet this is exactly where she was Sunday before things took that awful turn. As grateful as we are to the medical staff  for rescuing our baby it was very clear to us  that had we not been  in the ICU, Sunday could have gone very wrong. In fact  we believe Sunday was God confirming for us a decision that has weighed heavy on our hearts, but one we arrived at more than a week ago. Rachel and I have wrestled and prayed and talked about what is best for our family and ultimately what is best for Ariella and we have decided to proceed with a tracheostomy. This is not something that we have decided lightly nor is it necessarily what we would prefer it is apparent though, this is what God wants  and what Ariella needs. If there were ever a doubt Sunday's episode was unequivocal confirmation that we are doing the right thing. 

So what happens next? The surgery is scheduled for tomorrow afternoon around 1:30 pm if it starts on time.  The procedure itself should not take more than 30 minutes. Following the procedure Ella will return to the ICU where she will spend another week or two recovering. Following her recovery there's a very good chance she will be discharged to the Hospital for Special Care in New Britain, a city in the central part of the state that is closer to our home.  There she will rehab and learn to live with her new trach. Simultaneously we will be trained as her family to care for the trach and confirm that we are able to keep her safe and provide all the care that she needs in the event that her nurses are unavailable. The amount of time she spends in rehab will depend on how well she does and more important how well we do in grasping the training. 

We are hopeful that things run smoothly and that our baby would be home before the middle of next month, however it is quite possible that it would be another month before Ella returns home. While this timeline is frustrating it is nice to know that there is an end to this episode in sight and without the trach it would be much more difficult to tell not only when, but if she would be able to come home. She would have to prove that she is able to maintain herself without the tremendous amount of support she's receiving from the ventilator and the respiratory therapist that provide her regular treatments. With the trach most importantly our angel will be able to come home and over time it will also allow her to regain her mobility and in time she will even learn to talk over the trach. 

We are so grateful to everyone that has stood with us so faithfully during this difficult process. My employer Career Team, LLC has been amazingly flexible and compassionate during this time. Our church Faith Tabernacle has supported us through our move and continues to look to help us in every way that they can. And we cannot say enough about our friends and family that have come to paint our home - thank you Mom, Ike, Phil, Karen and Gretchen, stay with our baby in the hospital - thank you Grandmabuela, help with Charles and installers - thank you Miguel and Bishop and ensure that we have enough to eat - thank you Lala Ada, Dee, Barbara and Mother Stewart. If it takes a village to raise a child I'm so grateful to be a part of this village because you all make it possible for us to give Ella everything that she needs. We would ask you to keep our baby in your prayers particularly tomorrow afternoon when the tracheostomy is scheduled. Pray that the procedure goes well and that the trach holds. Pray that this surgery gives us our baby back and gives our baby her life back.

We are all more than conquerors!



Ella's update for the last two days - February 1-2, 2016

Hello Team Ella, I have to apologize for the lack of postings for the last two days. As you can imagine posting and working and communicating with the medical team can be challenging.

That being said Ella has been having a really good week. Since Sunday's event her lungs have cleared and there does not appear to be any residual aspiration. She is still intubated, meaning she still has the breathing tube inserted into her mouth and is getting respiratory support 24/7, but the amount of support she is receiving has lessened.

In the mean team Ella has been busy working on several projects and as you can see from the photo has been promoted to Dr. Ariella Botts. She has a patient, Mr. Frizzy, that she has been working with very closely. Mr. Frizzy has been receiving all the same interventions that Ella receives. Mr. Frizzy has made Ella feel like she is a part of this process. Having the opportunity to perform different medical procedures for herself has helped her to cope with what has been happening. We have a send a big thank you to the Child Life department and Leah, the Child Life Therapist that has been an absolute God sent these last two weeks in particular for Ella.

Speaking of God sent, I was leaving the hospital earlier after a tough conversation and feeling a variety of things. As I boarded the shuttle bus to get back to my car the driver was playing gospel music; Kirk Franklin - This Test is Your Storm. Talk about just what the doctor ordered. I told the driver I was grateful to him for playing this music. He began to share his testimony with me and to minister and encourage me. I asked him as we were approaching the offsite parking lot where I was parked, if he could keep Ella in his prayers. The driver said he would and than while he was still driving this angel in the flesh said he felt led to pray for her and me right than and there. The driver's name is Larry and while he was driving his shuttle he prayed for me and my baby. This man took time to pray for a complete stranger.

I must admit it has not always been easy to see God through all of this. Some of you may have more faith than me and perceive God's presence throughtout. I have not always been able to recognize Him, but I have never stopped trusting him and today He sent me some encouragment.

Brother Larry I am not sure if our paths will every cross again, but thank you sir. I praise God for you and for letting God use you to bless me.

WE ARE ALL MORE THAN CONQUERORS!

A third intubation - January 31, 2016

Sunday morning started out like no other morning we have experienced since being admitted to the hospital more than a month ago. Sunday morning's chest x-ray showed Ariella's lungs the clearest they have ever looked. Based on this x-ray and the doctors initial exam it appeared as though there was no sign of collapse in either lung and that the secretions were dissolving. In spite of this seemingly amazing turnaround we all decided to maintain our course and leave her pressure settings on the breathing machine alone. The only change would be to wean her oxygen support as she tolerated it. We also agreed to continue her regular respiratory treatments every 2 hours. It is very important that you all visualize just how good of a morning we were having in order for you to appreciate just how perplexing the events that followed were to all of us involved.

Ella got a bath and we washed her hair around 11 am. As we finished up with her bath and hair it was time for her noon treatment. The treatment was going fine until suddenly Ariella began to complain about pain in her throat. We could see that she was having difficulty breathing and swallowing and she was in a lot of pain and discomfort. That simple interaction; complaining about pain and discomfort precipitated a downward spiral that nearly cost us our angel's life. From 12:30 to 6 pm along with Ella we fought to save her life.

Without being here it is very hard to describe exactly what happened, the medical director for the intensive care unit, who thanks be to God just happened to be working today, described the events as "a life threatening aspiration episode". As you may recall from earlier postings aspiration is when contents from the stomach make their way into the lungs. We cannot say for sure, but the prevailing theory at this point is that Ella may have had some reflux or the high pressures from her vent that were causing her belly to distend may have inadvertently pushed some food from her stomach into her lungs. We cannot say, nor do I think we will ever know, definitively what was the root cause. What I can tell you is that I saw my baby go from doing really well....to critical....to near death in a matter of moments. She worked so hard today, from her head to her toes Ella flexed every single muscle she has trying desperately to bring air into her lungs.  At one point in time her heart rate was 166 beats per minute, her normal heart is between 100 - 120, she was sweating profusely and turning pale because she was fighting for literally every breath that she took. In the midst of all this Ella was able to ask for her mommy and we were able to connect mom through Skype so Ariella could hear both her parents and her baby brother encouraging (begging) her not to give up. We tried several times with suctioning and noninvasive breathing support to help her resolve this episode, all to no avail. After about an hour of fighting and struggling it was decided that intubation was going to be the best course to help her through this particular challenge.
  

The intubation itself was fairly routine, however once the endotracheal tube was placed it took us quite a while to position it in such a way that allowed it to work the way it was supposed to. Simultaneous to this Ella needed to be sedated because as the tube was placed and the machine was trying to breathe for her she was actively fighting the machine and putting herself further into critical status. This means that sedation medication needed to be administered through the one and only IV site that she had at the time. As we were giving her more pain medication the IV blew. In other words the IV started to come out of her skin and was no longer inserted in a vein, it was not functional. We were left with trying to add another IV while Ella was in pain and actively fighting the ventilator. All of this while we are still trying to secure the endotracheal tube.

I don't know if this explanation is painting a picture or if this is very difficult to visualize so please allow me to say it another way. Ella is a remarkably intelligent and intuitive little girl.  Imagine our little warrior so incredibly scared because she's aware enough to realize that if she can't breathe she can't live and NOTHING we tried helped her to breathe. When the tube was put in, Ella's desire for life was so strong that her instincts to continue to breathe and live kick in. She was unable and unwilling to relinquish her breathing over to a machine and so the only way to truly help her was to sedate her and the only way that we have to sedate her was just eliminated when the IV blew. 
 Now, I want you to do something with me to help you understand one fraction of what Ella feels when these things happen.  Try to swallow....you see how you can actually hold your airway closed to allow yourself to swallow?  Now do that again, holding your airway closed for the swallow but expand your chest as if you were trying to take a breath....You feel that suction and the biological fear your body experiences when it cannot breathe? Immediately your heart kicks in like an engine revving to give you more power, but as long as that airway is closed there is nothing you can do. For Ella, blockages in her lung do just that, only there isn't anything she can do herself to get it to open up no matter how hard she tries.

When I tell you that I thought we were going to lose her three or four different ways this afternoon I'm not overstating what happened for a moment. I can not say enough about the team here at Yale's PICU. Every member of the team, nursing, respiratory therapy, physicians, every was diligent and skillful and compassionate. And as grateful as I am to the people that saved my daughter's life I am more grateful to the one true and living God, Jesus Christ our savior that did not let my baby's body give in and positioned all the right people to ensure her survival. 
She was sedated most of the evening and night, but started to come around at midnight and when I tell you this little girl is amazing. As the medication is wearing off she wants to paint and play with stickers. Thank you Jesus.

In church today our Pastor preached a message that has been passing around the internet all day... You + You = you   You + God = Supernatural Power. Ariella truly is more than a conqueror through Christ because today Ella + God conquered death and she lived.