Ariella Christina Botts a source of inspiration, hope, joy and love. You can follow God's special little conqueror on this site. Learn about her trials, triumphs, victories and achievements.
Another day and our angel stayed mostly the same. Friday night into Saturday morning was difficult for both mom and Ella. She had several episodes of desating, that's when the percentage of oxygen in her bloods drops below 90, these episodes typically involve some kind of intervention, usually suctioning. Becuase she had so much difficulty overnight she did not get any breaks during from her treatments, which made her very tired during the day yesterday. Having said that Ella did rally later in the day. We were able to back down on the amount of oxygen support she was receiving through her ventilator due to her challenging night, on the other hand we increased the amout of pressure she is getting in the hopes that we can pop open the collapsed portion of her right lung. In spite of everything our baby has had to deal with she continues to remain in good spirits. She had two fun visits yesterday and got to spend some good time with mom. She is a remarkable child, truly a special gift from God. By taking one day at a time, we are all more than conquerors.
Greetings Team
It is hard for me to say exactly wherever Ella is in terms of her progression. This morning's x-ray did not look significantly better than yesterdays and in some respects it may have been a little worse. The bronchoscope did what it was supposed in that Ella's pulmonologist was able to get out a significant amount of secretions from the lower portion of her right lung. In order to do that they had to add quite a bit of fluid to the lungs to break up the secretions. The doctors were not surprised by the fact that the X ray did not look much better than the x-ray that was taken immediately following the procedure but when they listened to her they felt like she was moving good air through the lung but it does still sounds, at least partially, collapsed. In spite of whats happening on the inside Ariella continues to fight. She's spent a portion of the day painting and playing with her grandma. You can see here she was playing hide and go seek or peekaboo, one of the two. I don't know exactly what else to say except that they we are taking each day, as cliché as it may sound, as it comes. One day at a time. Hold to your team faith. We are all more than conquerors.
This morning's procedure became this afternoon's procedure as the procedure which was originally scheduled for 11 am didn't happen until after 1 pm. That being said the procedure was relatively brief and the doctors feel good about the amount of secretions they got out. Ella is still resting from the anesthesia. Her lungs sound more inflated at this point it is hard to say whether or not the collapsed portion of the lung is reinflated, but the team is "cautiously optimistic". Day by day, we will trust The Lord.
Good morning more than conquerors. At 11 o'clock this morning Ariella will be having a third bronchoscope procedure. This time the procedure will be done in the operating room to provide extra precaution which is something that mom and I are actually okay with, however what this means we are one step closer to a tracheostomy. Mom and I continue to wrestle with whether or not the interventions we are agreeing to are helping Ariella or are they actually setting her back. Years ago during her first intensive care stay the head of Connecticut Children's Medical Center's PICU gave us some of the best advice we had ever received. We asked him what he would do if it were his daughter laying in the bed instead of Ella and he said he would do everything he could to keep from having to perform surgery as long as he was doing things for her and not to her. Mom and I are feeling like we are getting very close to doing things to Ella and not for her. We don't want our baby to be trached but if that's God's will and if that's what gives her the best opportunity to get better and to come home then how selfish would we be by keeping that from her. We are not there yet and at the same time if we go there we won't see that as a defeat because our baby will get to come home. Please pray that God's perfect will is exercised today we will let you know how the procedure goes this morning. Thank you all for your unwavering support it has been a pillar that we have been able to lean on during a very difficult time. We are all more than conquerors.
Greetings team Ella, in spite of how well our angel was doing Monday apparently at some point during the course of the day the lower portion of her right lung collapsed. Our warrior spent yesterday working through this collapse and doing her best to rebound. Team as hard as it is for you to read these up and down reports as hard as it is for you to see that every good day seems to be followed by a bad on, it is that much more difficult for us to write it, but I'm taking a different approach this time around. We've spent the last 24 hours declaring to you and others that we have turned a corner this weekend and that we were out of crisis. Those words were met with opposition yesterday. She was described as tenuous and the doctors continue to try to put on the table the possibility of a tracheostomy. Now I'm a man of great faith, but I also recognize the Lord's ways are not my ways and in spite of what I may want God may have different plans for our baby. And if the Lord needs for Ella to be trached then let His will be done. However, that's not what he had said to me and when I look at her that's not what I see so I do not accept the doctor's report and I will not accept that she is tenuous and prone to continuous setbacks. I recognize that this is not just a natural fight but this is spiritual warfare and for those of you that are believers with me rise up and continue to stay in warfare through prayer for our little warrior. We are not going to back down we are not going to give in we are going to fight with Ariella and we are going to let everyone know that WE ARE ALL MORE THAN CONQUERORS.
There are times when as a parent you just get overwhelmed with how beautiful your children are, inside and out. Last night was one of those moments. After speaking with some of the doctors and having Daniel evaluated we decided to bring Daniel to see his big sister ! Kfor a surprise visit. I think these pictures say it all. Rachel and I are so blessed. We are all more than conquerors.
God's grace has shown brightly on our baby these last 48 hours and for a change Ella's day ended even better than it started. We shared a quick post this morning with a picture of our little warrior smiling and breathing without the assistance of any apparatus. The day only got better from that point. Ella Skyped with her family; Mommy, Charlie, DJ and Grandmabuela. She even started to whisper some words today, Mom was her first word...again.
She had a full day of rigorous treatments and by the end her lungs sounded the clearest they have sounded since the day we were admitted, one month ago. It is hard to believe we have been here for a month. I am grateful because by God's grace we will not be here, much longer.
Ella and I wanted to provide some fuel to keep your fires of faith burning. After 6+ hours of mostly uninterrupted sleep this is how my baby looks this morning. We are going to continue to be aggressive with her treatments and conservative with how long we leaver her off her breathing machine. But last night I asked you to stand with me and trust God and this is the result.
Hello Friends and Family of Ariella. The day is ending much better than it started. After a full day yesterday where Ella got to spend some time with her Nana, Poppy and Auntie Karen, she had a pretty good night. And yet similar to yesterday around 4 this morning Ella started to have real trouble, but this time was different. The respiratory therapies were very effective at getting her secretions to mobilize. In other words the treatments we gave her overnight helped to loosen the secretions in her lungs, however when we tried to suction them we could not get to them fast enough and Ella developed a mucus plug. The plug blocked her airway and for several second Ariella stopped breathing. I was able to get the respiratory team the ambu bag, which was used to give Ella breathes when she could not take any on her own. The ambu bag moved the plug and immediately after receiving a couple of breaths from the bage she started breathing again on her own. This is not the first time this has happened during this hospital stay, however in the past these events have lasted several minutes. In this case it lasted maybe two minutes all together. Once our baby recovered from this event the day only got better and better.
I spent time in prayer this morning desperately seeking guidance on how to best help our little warrior get better. God reminded me of what we have done in the past to help Ella get over these kinds of episodes in the past. With new inspiration I advised the doctors on some modifications I wanted to make to her therapies. Additionally, yesterday her pulmonologist recommended we try a new "nose" only mask that would direct the air pressure from the breathing machine into her airway without getting diffused and spread throughout her face on her full face mask that we use at home. Not only does it direct the air pressure, but it also opens up our baby's face so she can interact more and it gives us access to her mouth to suction her secretions and provide mouth care.
The mask combined with the adjustments to her therapies made a marked difference in her condition today. She is still physically very weak and her right lung is still diminished. In spite of this she is stronger now than this morning, we have gotten a lot of secretion out all day long. We have turned a corner today, I believe that today is the beginning of Ella's full recovery.
You all have stood so strongly with us through this prolonged hospital stay. We are getting closer and closer to being done with our time here. Pray with us that God eliminate her extra secretions. And believe with me that Ella will WALK out of this hospital under her own STRENGTH.
More friends from church came to hang out with Ella
There is no other way to say this team, today was hard. Up until about 4am our warrior was doing quite well. The settings on her vent and her oxygen support were lowered, she was comfortable with her mask, things were looking up, that is until everything changed at 4 am. Ella had another episode of collapse. This time the right middle portion of her lung collapsed. I have to confess this morning and early afternoon as I watched my baby fight to breath I felt scared. Scared that she would have to have surgery, scared of what it would mean for her and for our family, but most of all scared that I would not make the right decision in enough time. I asked the doctors to prepare for re-intubation in the event that she did not recover, but I also asked them to give her more support on her vent, more support than she had received previously. Also around this time, Ella's pulmonologist had a special machine delivered to our room that would provide her some additional pressure therapy to her lungs. The combination of this new therapy along with the increased setting on BiPap machine helped to clear out some of secretions and get our baby back to her baseline. The remainder of the day and evening were better. Ella is still on considerable support from the breathing machine, she is also getting more oxygen than normal, but she is comfortable and more importantly she is not going into surgery.
Though this morning's episode scared me, it did reveal something. We know what the prevailing issue is now, Ella needs help managing her secretions. When the breathing tube was removed it generated a lot of secretions and those secretions that trickled down her throat and some of the them went into her airway and got stuck in her lungs. When you pray tonight ask God to clear Ella's lungs of the increased secretions. She needs to get past these increased secretions.
Ella continues to fight. She is tolerating more than a person three times her size and strength could tolerate. She is an amazing inspiration. Looking at her I realized I don't need to be scared.
You will forgive me for this brief post it has been a very long day. Ariella's extubation went very well and the breathing tube was successfully removed. Ariella quickly transitioned to her home mask and the BiPAP breathing machine. What this means is essentially Ella is on the mask and using the kind of machine that she uses when she's at home. The pressure settings have increased and her treatments are still happening every two hours however, she has responded quite well to being on the mask and having the breathing tube removed. At this point there is no surgery eminent and nothing has been scheduled for tomorrow. I believe today is the beginning of Ella's rapid recovery. The clock is ticking, accept we are not marking time before a possible surgery, I believe we are marking time before we can go home. We are not all the way out of the woods but today was an important and strong step. Keeping petitioning heaven. We are more than conquerors.
Peace and blessings team more than a conqueror today has been a good day. Ariella has spent the entire day on decreased pressure support through her ventilator and has shown that she can withstand the decreased support. In addition to the decrease ventilator settings Ella also maintained her daily regime of rigorous respiratory treatment every 2 hours and a 40-minute physical therapy session. In spite of how busy her day was Ella showed continued signs of improved health and strength. The doctors will make 1 more reduction in her pressure support overnight. If she tolerates this final reduction in support the endotracheal tube will be removed tomorrow. Once the tube comes out the real work for our angel begins. She will have to show that she can sustain herself without the invasive breathing tube. The tentative plan is to give her 24 hours on her regular breathing mask with increased support from the ventilator. If she tolerate the new pressures on her breathing mask the doctors will begin to give her trials off of the mask to see how long she can sustain herself without a collapse in her lungs. Tomorrow and the rest of the weekend will be a crucial time for our family. Thanks to the amazing church family to which we belong at Faith Tabernacle we will be looking to officially move this weekend while our baby proves that she can live without a breathing tube.
As you are praying for Ella we would also like you to pray for one of her special friends Franny. We met Franny and her family as part of an annual gathering Manhattan for families living with nemaline myopathy. Franny is a beautiful young woman as you can see and has been fighting very hard to maintain herself off of a ventilator and thrive after a significant illness. She is in a very similar situation as Ariella, however her family has decided to proceed with a tracheostomy. For Franny and her family this is a decision that they have come to in the best interest of their household this is not something they feel forced into. In fact in many ways a successful tracheostomy will be the light at the end of a long tunnel. Please keep Franny and her family in your prayers as you pray for ours. We are all more than conquerors.
Progress for our little warrior continues to be up and down. It seems like every time we take two steps forward we take another one back. I am not questioning God and we are not rushing Ella, but believe me when I tell you things have not been easy here. Our warrior had a busy day yesterday. Her day included a visit from the occupational therapist, getting her hair washed and braided, and doing another trial on the ventilator using lower support settings. For the most part Ella did well during the day. Her numbers looked good throughout the day, she had a productive therapy session and even tolerated getting her hair braided again. However, around 8 pm she started to have some difficulty breathing without the kind of support she has come accustomed to and was clearly very uncomfortable and tired. The doctors increased some of the settings on the vent and by 10 pm she began to settle down and fall asleep more comfortably.
The Plan
The doctors would like to do another couple of trials with Ella on the ventilator using reduced settings. This will continue to demonstrate that when the breathing tube is removed Ella will be able to breathe without the increased support that the breathing tube provides. When the breathing tube is removed Ella will go back to the ventilator using her regular full face mask. This time around, God willing because she is stronger and healthier, she will not face any additional episodes where her lungs collapse or she is unable to breath without a lot of support from the machine.
Tracheostomy If Ella does not thrive off of the breathing tube, if she continues to have severe episodes of mucus plugging that block or collapse her lungs or she is unable to show signs that she can sustain herself and breathe more independently from the machine than the doctors here in the PICU are clear in their opinion that the next option is surgery.
A tracheostomy is when a hole cut into your throat; it goes through the front of your neck and into your trachea (windpipe). The purpose of the hole is to make it easier to breathe by clearing the airway and being able to attach a ventilator to the hole so that breathing can be supported in a more permanent fashion. A tracheostomy is usuallytemporary, although you can have one long term or even permanently. At this point if Ella were to have a "trache" inserted we would have no way of knowing when or even if it would ever come back out. We have been told by a number of healthcare professionals that it is possible for Ella to eventually get back to her life as usual even if she had a trache. Eventually she would regain her mobility and be able to get breathing support as needed. Team, we are not about to doubt or question God. Whatever His will is that is what it is going to be. At the same time we don't want our baby to have to undergo this surgery. A tracheostomy will change everything for our family. More importantly it will change everything for our baby. We will do it if it means Ella being able to breathe without having to be on a full face mask 24 hours a day and we will survive the surgery and recovery. But make no mistake there would be a hole in our baby's neck and that changes things. She would be at increased risk of infection, she may have to remain attached to a ventilator for most if not all of the day, She may not be able to move around as freely. We trust God. Please pray that His perfect will is done. Next Steps At this point surgery is on the table, but not definite. Ella will do more trials today with the breathing tube on lower support settings. If she has another good day and proves she can sustain herself than we will look to remove the breathing tube tomorrow and that will start the clock in terms of whether or not she will have to have surgery. If she does not do well with the trails today the breathing tube will stay in for another few days and we will continue to try and see if she can get strong enough to breathe more independently. If she continues to fail her trails the doctors will look to perform the surgery before they remove the breathing tube. We know that you have been praying, We know that you have been sacrificing. On behalf of the strongest 3 1/2 year old we all know and love, I am asking you to have the faith of a mustard seed. At some point we have to choose to believe that God's plans for Ella is perfect regardless of what it looks like to us. I am not asking you to stop praying, I am asking you to BELIEVE. Trust in Jesus Christ. We Are All More Than Conquerors.
watch the video of Ella on FaceTime with her friends from church
Hello team more than a conqueror what a great day our warrior had today. If you read yesterday's update I talked about Ella spending some time in a therapeutic chair as part of her physical therapy well today she spend even more time in that chair not just sitting up and doing recreational activities but today we actually had therapy in the chair in addition to washing his hair. All told she spend about an hour in this chair and did very well throughout the time I'm. It was only until we got to the very end of the hour that it was clear she needed to lay back down in order to recuperate and rest. In addition to a very rigorous therapy session Bella had a 2 hour trial where the doctors moved a number of the support she receives on the ventilator to see how she would do with reduced pressure and support. Our little angel did very well during the first trial. We will be doing more trials tomorrow to see how well your lungs are working and assess how she would respond if the breathing tube or taken out. This is a critical phase in Ella's recovery and will ultimately impact where we go from here. Please pray that our baby does well on her trials tomorrow.
We also want to say thank you again to the amazing family that we have at Faith Tabernacle Church in Manchester who have come through in grand fashion both spiritually and naturally during a season that has been considerably longer and more difficult than we could have expected. Through faith we are all more than conquerors.
Greetings team Ella. Our little warrior is getting closer and closer to full strength. On top of a very active day the doctors decreased some the support Ella receives from her ventilator. On top of that she engaged in some physical therapy as well as spent some recreational time sitting more upright in a therapeutic chair. This was the first time that Ariella was nearly upright since her admission 3 weeks ago. She did well with her therapy and tolerated sitting in the chair for almost 30 minutes. It was clear at the end of the 30 minutes she was physically drained but she did quite well for someone that has spent several weeks laying on her back. While sitting in the therapeutic chair Ella did some painting as well as sticker time. Her respiratory treatments continue to go well in spite of the frequency and while they are physically demanding they are certainly helping our angel stay clear of her secretions so that her lungs can continue to expand and she can continue to get strong enough to breathe on her own. The plan over the next day or two is to continue to reduce the amount of support she receives from the machine until we can get to a place where they can do some trials to simulate having ella breathe on her own. Your thoughts and prayers continue to be invaluable and among the most effective interventions we have received. We are looking forward to a great week and with your faith and strength we know that that this is almost over. Continue to trust in God's plan. We are all more than conquerors.
I wanted you to know oh that our baby had a good day today. As I indicated last night her fever had broken late last night and did not come back over night. There were a number of blood tests run and while many of them came back negative for more serious viral infections like RSV she did test positive for a bacterial infection. We are still waiting for the results of her urine culture to tell us exactly what it is, however we have started her on antibiotics and the doctors believe it is a urinary tract infection. One of the downsides to a prolonged hospital stay is that your risk of secondary or tertiary infection increases. In spite of last night's hiccup Ariella had a very good day treatment wise. Her lungs sound good, this morning's x-ray showed no signs of collapse and her numbers have been strong throughout the day. Ella and dad did a little bit of painting today and dad read a couple of stories. But our little angel was wiped out from yesterday's episode. And yet the doctors are thinking about taking out the endotracheal tube Tuesday or Wednesday. We know that you have been praying and we are so blessed and grateful to you and your tireless efforts. We still believe God. We are all more than conquerors.
Okay so it's been about 48 hours since my last post and quite a bit has happened over the last day and a half. Ariella had a pretty good day yesterday. We did a lot of playing and painting. As the day progressed her energy level seemed to pick up. Overnight she did well and got some rest, however this afternoon our precious angel had a spell of vomiting and several large bowel movements in addition to spiking a fever. The doctors have run several tests and so far they have all come back negative, but there are several other results we are still waiting on including whether or not this is the early stages of rino virus; there is some concern that she may have picked up a bug while being here even after being cleared of the RSV and pneumonia. Furthermore, her x-ray this morning showed signs of her upper right lung collapsing where as previously it was her lower left lung. It is almost like the blockage is just moving from side to side.
In spite of all this our warrior keep fighting, even as I type this Ella's fever has broken and the second x-ray they took afternoon showed slight improvement from this morning's x-ray. Basically our little Conqueror is saying this thing is not going to beat her and through Christ she is going to win.
We also wanted to share with you all that we signed papers on our new home. Even though Rachel and I owned property prior to being married this is our first home as a family. Thank you Jesus. We are all more than conquerors.
This is one of those things that would be much better said than read, but I am going to attempt it anyway. If you have read this blog before or had an extended conversation with myself or my wife you know we are people of great faith; a Christian household with a capital C. I know many of you read this blog because you want to check on our little warrior, not read my personal affirmations. I understand and respect that. I made the statement about being people of faith for this reason. Our belief system convinces us that everything happens for a reason, there are no coincidences.
Six years ago I was laid-off from a large corporation. I enjoyed my time there, the salary, the facilities, the resources; it was a really good situation. However, it was not a long term part of God’s plan for my life and ultimately for my family’s life. After six months of unemployment KRA Corp hired me to work in the American Job Center, this past spring I took a new role with Career Team LLC. I can say with full confidence the support, encouragement and love that I have received from my two most recent employers would have never happened at a large institution or most anyplace else for that matter. My family and I have received kindness, support, well wishes and genuine concern during some of our darkest times whilst in the employ of these two great organizations. KRA set a powerful precedence during Ella’s first prolonged ICU stay two and half years ago and Career Team has done nothing but carry that standard upward and forward. Thank you to my friends and “family” at CWP, KRA and Career Team. I am one of the fortunate handful of people in the world that loves my job AND my employer. Career Team is a great company that employs great people. I have worked for Career Team less than a year, but in that short amount of time I have been made to feel like an important and valuable member of the team. Thank you Chris for being a man of your word.
We would be remiss if we did not also recognize the flexibility and encouragement Rachel has received from MHIS and the City of Hartford. It would be very easy for our employers to take a less flexible stance. That has not been our experience, in fact the opposite has been true. Organizations going out of their way and people sacrificing themselves and their workloads to support and hold us up.
There are days when we think about how different things could be if we were on a different path. Those moments are short lived. I am so grateful to God for placing us on this path. I cannot adequately put into words what everyone’s kindness, compassion and love has meant to us. From the very bottom of our hearts and with all the grace Christ has given us – THANK YOU, EACH AND EVERYONE OF YOU. Thank you for watching DJ so that we don’t have to bring him with us to the hospital and risk him getting another infection. Thank you for checking on Grandmabuela and keeping her company. Thank you cooking for us. Thank you for being willing to clean our home so that we can focus our strength on Ella’s care. Thank you for stopping by to say hi and let us know that we are on your minds. Thank you for every text, every e-mail, and every note on LinkedIn, Facebook and Twitter. Thank you making things for my Ella, and buying things for my Ella, and most of all…THANK YOU EVERY SINGLE PRAYER YOU HAVE UTTERED ON OUR BEHALF. Thank you, thank you, thank you. We are the living evidence that PRAYER WORKS, never, ever, ever doubt it. We Love You.
I apologize for the delay in sending out yesterday's update. As Ella continues to improve and gain strength her threshold for boredom also shrinks requiring more attention and activity from her daddy, which he is happy to provide however it leaves less and less time for daddy to do things like update all of Ellis followers as to her progress. Yesterday morning Ella had a second bronchiscope that revealed very little traces of an additional infection or scarring in her airway. There still continues to be copious amounts of secretions that require treatment every 2 hours. The settings on her vent continue to be reduced requiring her to breathe more independently. These are all positive signs of progress. Mommy and daddy continue to exercise their faith using wisdom as they coordinate LS treatment with the doctors. While everyone is eager to see our warrior recover we have all learned that if we push too hard too soon we may have a repeat of last week's episodes and no one wants that. That being said Ariella had a very good afternoon. She wants to paint and play and interact. It has been a joy to see more and more of her personality and character come through as she gets stronger and does better. Thank you for your patience through prayer. Ella gets stronger day by day. We are all more than conquerors.
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.
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.
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.
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
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.
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.
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.
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.
