PICU Day 7

Where to start????? It seems as though we have been on an emotional rollercoaster this week. Our sweet child has been through the ringer. She has had a lung and a half collapse, then reinflate then try to collapse again. The PICU staff has worked aggressively on Ava to help her little lungs strengthen. We had a mishap yesterday and two physicians didn't communicate with each other and doubled up on pulling back AG's breathing tube. This caused her to basically be extubated for a while, until they got the second xray back. In turn making her work harder and made her co2 levels increase. In laymans terms, she went without adequate oxygen for to long. Thus was a major setback. I was quite fired up over this initially and very vocal to my friends. Realizing this wasn't doing anything but keeping me in a uproar, I just thank the Lord that they realized it before it was too late. There has been a lot of praying coming from the PICU this time around. That is nothing new from AG's room though. She is fighting and is still here. That is more than some families have. I have to constantly remind myself that at least I still have a reason (Ava) to have something to fight for. That is a struggle that I am having with myself. since they have moved Ava to a private room inside pICU, I am able to stay with her. On saying that, I am doing this blog from my iPad, so please overlook any grammatical errors. This hospital stay seems to be taking a toll on the family. I'm not sure if it is because of the stress, worrying about Ava's daily advances/set backs or the possibility of being here another two months. That's right, another two months. The drs are pretty much attributing AG's diagnosis to her inability to swallow her secretions due to her incomplete esophagus. We have spoke to various specialist about a fix, whether temporary or permanent. All of our thoughts and consults have lead to finding out it's going to be a "go big or go home" deal, literally. We either do nothing and go home and continue suctioning her every 30 to 45 mins or do the esophageal connection surgery that will demand a 6-8 week recovery period in the hospital. I know most of you are thinking thus is a no brainer, but until you physically see the toll thus has taken on our family, the high risk that are involved with the surgery and the possibility that Ava may have her last days trying to recover from a surgery that adults have a problem recovering from,then you can't see the full picture. I am praying for the Lord to lead mine and Bryans heart to the correct decision, with Ava's best interest at heart. The thought of Ava never going home with us is gut wrenching. My inlaws took Trace to our house yesterday to get some things and the first thing he did was run to Ava's room and look in her bassinet fir her. All I can do is cry. Can you imagine what is going through his little mind? He thinks Batson is our home. When he walks in the hospital he says "moma dada". Poor Landon is rolling with the punches. Without my family and friends jumping in and helping with him, I'm not sure he would be as well off as he is. At least in PICU we are able to schedule a time that Landon will be able to come see Ava. I love the fact that they have a child life coordinator that takes your child and shows them the machines prior to them ever setting foot inside the room. This allows them to touch and ask questions about the equipment so they aren't so overwhelmed by it. What a fantastic idea!? We will hold off doing that though until she comes off the vent. Even though she is able to open her eyes, she is still not able to move her head as freely bc of being taped. I guess my thoughts are I really don't want him to see Ava like that. Anyway, Ava has had some amazing first time experiences. She got to fly in a helicopter and she received her first celebrity autograph! A sweet sweet friend went to a children's miracle convention in Washington and told this celeb about AG's story and why she wore a pink bracelet. He signed AG's pink bracelet!!! Guess who? Mark Willis! Thank you Amanda for allowing Ava to have another first :) tomorrow I am making a list of all the things I want to feasibly accomplish with Ava Grace and make my goal, crossing each one off of my list. Send me some suggestions. One thing I really want to accomplish is to take Ava Grace to church. I want her to be dedicated to the Lord and have that connection strengthened. I was baptized the weekend before her birth and it was an amazing feeling! I miss my church and my preacher so much. Bro Mark came to visit us the other day and I felt so blessed that he took time out of his day to travel 2 hour to just see and pray with us. That's a GREAT preacher for you!!!!!! Please keep praying for our strength, wisdom and understanding. Pray for Ava's strength and uncomplicated recovery. The Lord is good in all times and is making the unexpected time we will and have already had even possible.

"I came naked from my mother's womb and I shall have nothing when I die. The Lord gave me everything I had, and they were all His to take away. Blessed be the name of the Lord! In all of this Job did not sin by blaming God".

Ava Grace is still fighting!

So are each one of these 50 miracle children

Miss Amanda got Ava Grace's first celebrity autograph

Love Mark Willis

PICU

I know it has taken me a couple of days and hundreds of unanswered messages to update everyone, but here it is. As you read in my last blog, Ava was taken to the hospital for what I thought was broken ribs and was sent home. She did ok through the night and by mid morning she was breathing quite a bit heavier. She seemed like she had a lot of secretions but nothing would come up. I called hospice to come out and eval her. They felt that it could go either way and since we had a dr appointment on Monday morning anyway, that it was my call. Less than an hour later, Ava Grace was in full distress. Luckily my cousin, (Doctor) Brandon Oakes, came over for a suprise visit and reinfored mothers intuition. We immediately jumped in the truck and flew to DRMC calling in a botched report on the way. Poor Brandon was probably thrown all over the back of the vehicle with my NASCAR driving skills. Drifting into the ER parking lot, my good friend was ready and waiting. AG was struggling to breath, her lungs were struggling to circulate oxygen and one had partially collapsed. They started line and gave her the first dose of lasix. Her heart was smothering from so much fluid surrounding it. Once they read the X-ray report from the night before, the ER dr said that she was diagnosed with fluid around her heart and pneumo last night. Oh my gosh!!!!! They sent us home with pneumonia and fluid around the heart! I will save my feelings about this for another time when i can prepare a full disclaimer prior to reading. The repeat X-ray showed partially collapsed right lung bc of the pneumo. Upon seeing Ava struggling for air and hearing that she was in fluid overload, it was time to make the decision to intubate or not. Since we knew that her need for intubation was not related to her Trisomy, we decided to intubate and transport to Batson. They know her and her dr's are all there. I will give cuddos to the nurses and Dr at DRMC for being so proactive and on top of everything. From door to helicopter we were in er for about an hour. I was impressed. Once they intubated her, she calmed down and was not as feisty. Air care got to the bedside and made me aware that I could not fly with her because of the isolette they were using was too big, do Bryan and I set out for Batson. We made it to Jackson about 20 mins after the chopper. According to the pilot, AG gave him the stink eye the whole way. That's my girl!!! Keep them straight. Two great ladies were waiting on the chopper to land. They followed Ava to PICU and stayed with her until we got there. Thank you Jackie and Amanda!!!!! Once they evaluated Ava Grace they found out that she had a large air leak around her ET tube and bc of this leak her left lung was not ventilating well, so it completely collapsed. So we are working with a half a lung. They also had to extubate and reintubate, which was a bit scary since they didn't have the right size blade. It took a little bit and was a bit of a struggle, but PICU doc prevailed. The plan of care was since they could not tell if it was true pneumo or aspiration, they were going to treat aggressively for pneumo. They started two antibiotics and had to go up on her vent settings. Even with a half a lung functioning, my little peanut was still breathing over the ventilator. Super proud!!! In case any of you have never had anyone on a vent, breathing over what the ventilator is trying to breath for you is a good thing. It shows that you're not dependent on it to breath for you. They also are doing CPT and IPV. CPT is basically where you take a cup (soft) and beat on the outside of the chest to break up secretions and get things moving. IPV is just like CPT, but it's actually hooked up the the breathing tube and blows strong puffs of air into the lung to pop open the little sacks in the lung, so it will open up. Ava did not tolerate this treatment. Her oxygen and heart rate would fall when they tried to do this with her. She does not like CPT either, but it's helping. After a full 24 hours of CPT and medications, AG is taking a turn for the better. Her left lung is starting to open up and her left lung is not as hazy. She has not ran fever through the entire process. Now she has gone from 100% O2, to 40% O2. They are thinking that if she keeps progressing like she is, then they wil extubate her tomorrow. She will take baby steps to decrease each support measure until she is back to her norm. Right now she is laying in front of me sleeping comfortably and has sats on mid 90's, which is more than the dr wants her to do, so they will most likely decrease her again. I can not praise the Lord for putting people like Brandon, Adam, Dr O, Amanda and Jackie in the right place at the right time. It truly mad this experience a lot more transitionable. Toni has been a Godsend as well. She has been running messenger if I have any questions or issues that they nurse can't answer. I am truly blessed. The Lord just keeps blessing me. I have a awesome and supportive husband, beautiful kids and a nursing background that allows me to understand what is happening. There is no doubt why the lord sent me into this field of study. As far as her plan of care, we will keep doing antibiotics, d/c the ventilator as soon as possible, keep doing CPT, suction and there is no plan for her ribs at this time. Please continue to pray for Ava Grace and for her friend Karis, who is also visiting the NICU. Please pray for strength and recovery as this will be a hard battle to overcome. My little spunky peanut can do it! She is already proving this. I have had my moments as so has her dad. You just breakdown bc you feel so helpless and broken, but if she can keep it together, then so should we! I dive into my faith to send up my prayers ad wishes for complete recovery and sanity. A chaplain for the hospital came by and prayed with us. It was wonderful. Even our pastor made a special trip to pray with her. I love it!!! There has been so many casualties lately, so please cherish each moment with your loved and living ones. In a flash they can be taken. Thank you all for your support!! We love y'all for all the prayers, gifts, food and encouraging words.

“Today I have made you a fortified city, an iron pillar and a bronze wall to stand against the whole land — against the kings of Judah, its officials, its priests and the people of the land.” (Jeremiah 1:18 NIV)

1st ER visit post home

Well tonight was a little scary. While changing Ava tonight, I noticed a large "bump" on her mid-right back area. I called for Bryan to come in there to look. Knowing that this area of concern had not been there previously, I started texting Palliative Care and Neurosurgery from UMC. The "bump" was not a soft bump, nor did it have any redness or heat. You could not move it like a fatty tumor. IT FELT LIKE BONE. Well, like any mother, all I could think about was that she had cracked a rib from all the gagging she does when we suction her. Both of the specialist stated that I should watch the area. Not even an hour later, another spot came up with the same characters as the other, just smaller. So, back to texting the specialist and they responded "go to er now". I told Bryan what they said and off to the ER at DRMC we go. As most of you know, I used to work ER and was not looking forward to going up there on a Saturday night. Ava's immune system is already compromised with all of her diagnosis. I went in and requested they put us in the family conference room and explained the situation. About halfway through the girl at the desk said "don't you work here?" Thank goodness she recognized me, because I was ready to refuse to sit out in the waiting room with people that have the flu and other airborne illnesses. After being "wanded down", we went straight back to the first room. This process was speedy. Shortly after the dr came in, assessed Ava and ordered test. The dr. stated that it was definitely bone that he was feeling, but the xray came back as a bony lesion. Really!? We knew that. They were a little concerned about an area of the lung, but determined that it was related to her heart. They even called and talked with Ava's NICU dr in Jackson. They agreed not to do anything at this time and a follow up appointment for Monday was scheduled. I have to admit that I am not pleased with the unknown bony lesions on my child's back. I am so ready for Monday so that we can  see what Batson has to say. As far as speed, I give DRMC a thumbs up. Good job. Just wish that we knew more. The cardiac concern is now rising, because AG's heart rate has been lower the past couple of days. I marked it up to her growing and of course your rate decreases with age. I am still praying that it is the case. I am so nervous. Tonight I was greeted by some really nice people in the ER that told me that they think and pray for us everyday. How wonderful that felt. In the mist of craziness, we were still reminded that there are good people with the power of prayer. One of the dr's said "I don't know how ya'll are keeping your head straight with everything". Easy........... PRAYER! Please keep AG in your prayers as we head to Batson at 7 am Monday to figure out what is causing these bony lesions on her back. If they get any worse or more before Monday, then we will be "off to see the wizard" before then. For now we are at home and going to try to sleep (at least until her next feeding at 3am).

Phillipians 4:6 
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your request be made known to God.