At this time, we also ask if we would be able to fly with Aubree. They did not know, it would not be determined until after the transport crew had arrived and assessed Aubree. Even feeling bad, Aubree wants to be with Mama or Daddy or someone she knows, or she can get scared. So, as hard as it was, Daddy left us there and took off for Little Rock in hopes of beating the helicopter or coming close to being there when Aubree would arrive so that at least one of us would be there for her upon arrival in case I was not able to go with Aubree. The medical staff in the clinic were not optimistic about me getting to ride and said it usually only happens about 1 in 5 times. Derrick also called and sent his parents (closer to Little Rock than us) to ACH to have a familiar face there for Aubree in case I was unable to ride and him not have enough time to make it. As Derrick was leaving, he literally dropped Amber, who was still with us through all of this, off at a gas station close by where our dear friend Bailey (also on Spring Break from teaching) came to pick her up and take her to our house to grab our bag (I had already packed one over the weekend just in case we electively went to ACH), get her car, and bring the cpap machine back to the office.
|On cpap at the ACH clinic back home, getting her CO2 down somewhat|
Amber brought the cpap machine up and we got Aubree set up on it. After being on this for maybe an hour, her CO2 went down to the 60s. Not great, but much safer. The staff at the office got us a couple drinks, snacks, and some lunch with their office order. While I hadn't eaten or drank anything in about 20 hours and had no appetite, my sister lovingly shoved a couple bites and sips down me to keep my hypoglycemic tendencies at bay. Thanks for warding off the shakes, Sis!
The helicopter took a little bit longer to get there than normal because of weather in Little Rock, but made it there a couple of hours after the call from the pulmonologist. The pulmonologist also told us to be prepared for them to intubate her for transport because that might be the safest way to transport her. Upon assessment from the transport team and with them conferring with the PICU attending who would be taking Aubree once she got on the ground at ACH, it was determined that Aubree was stable enough to be transported on her home cpap as long as it would work and nasal cannula for when that was not available. The transport respiratory therapist really worked hard and did some thinking outside of the box to make the home cpap even an option for the transport because the interface Aubree uses is not compatible with the transport ventilator. We were so thankful that she did not have to be intubated at that time!
|How we got to Little Rock|
Also, after much prayer, we found out I would be able to ride with Aubree. Thank you, Lord! We left the office with Aubree on a stretcher with a fresh IV and on a nasal cannula for the ambulance ride to the Springdale Airport. Once in the ambulance with access to power, we put her back on cpap. I can get very carsick and seriously thought I might puke in the back of the hot ambulance in the 10 minutes it took to get to the airport. I prayed for the Lord to help keep me from puking there or in the helicopter as I prayed for Aubree. During the transition from the ambulance to the helicopter, Aubree was back on the nasal cannula of oxygen. Once Aubree was in the helicopter and the power was on, we hooked her up to her home cpap. Off we went for a 50 minute ride to Little Rock. (Side note: The night before, some show was on and showed people flying. I mentioned to Amber that I hadn't flown since last summer and kind of missed flying from all of our traveling days. Maybe God was preparing my heart for what was ahead, but this is definitely not what I had in mind!) The home cpap lasted about 15 minutes, but the pressure and altitude change from our elevation interfered with the pressure the cpap was supposed to be delivering. We put Aubree back on the nasal cannula with oxygen, and she stayed doing great. Sweet girl slept the whole time. And I felt much better than I did in the ambulance and did not get sick.
In Little Rock, we landed on the roof of ACH. There is no lip or catch or anything up there close to the edge. For safety, they took me off first and got me inside where I waited and watched as they got Aubree unloaded off of the helicopter and wheeled into the hospital. This took a few minutes. By the time I could see her again, she was darting her eyes back and forth, right to left with her pupils huge. She looked so scared and couldn't find her Mama. Once she finally found me, she just started bawling. I got as close to her as I could as they are trying to wheel her onto the elevator and talked soothingly to her to try and calm and comfort her. This broke my heart for her to be scared. I can't imagine how much worse this would have been for the whole transport instead of just a few of minutes. Thank you Lord for keeping us together!
Because of the delay from the weather getting the helicopter to NWA, Daddy actually beat us to the hospital by a little bit and was able to meet up with us pretty quickly once we got in Aubree's room in the PICU. Tons of people were in and out in the beginning. The attending and fellow decided to put Aubree on a heated high flow nasal cannula of oxygen which can sometimes help flush the CO2 out. This seemed to keep her CO2 in the60s, then the 70s. Better than the 90s which got us into this mess, but not good since her CO2 is usually in the 50s. Since it was approaching evening anyway, since Aubree is usually on cpap at night, and since her CO2 was in the 60s earlier in the day once on cpap, it was decided to put her on cpap through the night. This kept Aubree's CO2 in the 60s for a few hours, but kept creeping up and by morning, her CO2 was in the 90s again.
The next course of action was to put Aubree on bipap on the Trilogy (really the only ventilator sensitive enough to sync with babies like Aubree and detect their shallow breathing) to try and help her blow off her CO2. This is a newer ventilator and not very many respiratory therapists (RTs) have experience with it. Literally, every RT on the floor in the PICU was in Aubree's room trying to figure it out. Thankfully, a relatively new RT had had testing on it and was familiar enough with it to set it up. Upon my suggestion, I also had them call her old RT from the Infant and Toddler Unit who had figured out good settings from Aubree on the vent when she had trialed it back in October when Aubree was there for observation. Thankfully, that RT was working that day and could help out over the phone. It took a village, but we got her set up on bipap. A blood gas after Aubree was on there an hour showed her CO2 back down in the 60's. Unfortunately, the same thing that happened with cpap happened with bipap. It would work for awhile, then not be enough to keep her CO2 down. When her CO2 reached the 90s on bipap, we went back to heated high flow nasal cannula since that was the only thing in the mix of all that we had done that didn't get her CO2 in the 90s, only the 70s. During all this, while the blood gasses gave us definitive numbers of how she was ventilating (getting rid of CO2), Aubree was really good at letting us know how she was doing. If her CO2 was high and her pH acidic, she was very lethargic and sleepy, so much so to the point that she didn't hardly flinch when given a shot and have an iv done. But, if her blood gasses were better, she would look at books, play with toys, wave at Daddy, etc.
|How we spent so much of the time before she was intubated, snuggled up together on the hospital bed.|
Poor baby doesn't feel good.
Also throughout this time, many labs and tests were run, but the only thing that came back was that Aubree was positive for rhinovirus. While this is usually just a common cold for most, it is super serious for Aubree and babies like her. This was the same illness that caused Aubree's buddy Madden to have to stay intubated for months after his surgery because it knocked him down so bad. It was knocking our sweet girl down pretty hard, too.
As soon as Aubree was put back on heated high flow nasal cannula, she almost immediately became inconsolable. Thrashing, crying, miserable for over 50 minutes. Aubree has never in her whole life been in consolable for any longer than a couple of minutes. I can always comfort or soothe her. I was so concerned about the way she was acting and knowing things were going wrong that I had a doctor come to the bedside to make sure she was at least safe for the time being. The resident came by and said we would just see how the blood gas went. I was finally able to console her enough that she wasn't thrashing about, but at that point she was pretty much responseless and just laying in my arms. Shortly after they drew the blood gas, the fellow (who had admitted Aubree, was so sweet, and had a baby of her own at home close to Aubree's age) came in with tears in her eyes and didn't speak for awhile. When she finally was able to speak through being choked up a little, she told us her CO2 was 122 and her pH was 7.14, the worst either one had ever been. We had no choice but to intubate Aubree because she was in respiratory failure.
|Poor baby would get so incredibly sweaty when her blood gasses where off. Still cute even when she didn't feel good!|
All that we had been trying to avoid was about to happen. However, I was honestly not surprised because of how awful she had been the last hour. The fellow confirmed that her CO2 was so high that it was affecting her organs and altering her mental state, hence her being completely inconsolable and thrashing about. In a way, I was honestly relieved because Aubree was going to get a break and get to rest. Our sweet fighter had done everything she could, but her respiratory muscles were just way to fatigued from the extra work she already does and the work from being sick. I can also have comfort in feeling that everything that could have been done was done to try and keep Aubree from having to be intubated. We had been fighting right along with her, and we all needed a break. I literally hadn't slept or had more than a sip or a nibble in several days because of watching Aubree constantly and trying to comfort her by holding her, rocking her, and anything else we could think of. We were also thankful that Aubree's intubation was able to be planned instead of in an emergent situation. We were able to get in some good snuggles before she would have to be indefinitely sedated. About 10 minutes before they intubated her, they were preparing the room for the procedure, and she woke up and was sitting up in my lap. She was smiling at us and looking at books. It was so good to see a little bit of her and her sweet personality before it would be suppressed with pain and sedation meds.
While we could have stayed and watched her be intubated, we decided not to and went to the waiting area with our family. While we could handle it, we have nothing to offer in that situation and the room was so full of people helping. We were also so physically drained from unsuccessfully trying to get her better, a break could benefit us as well. While her being intubated was not what we wanted to happen, we were so glad that something could be done to help Aubree as she fought this illness.
At this time, I remember talking to Derrick and saying how this was probably for the best. We were killing ourselves trying to do anything we could to help her get better (all of this under advisement of her doctors of course), but things kept getting bigger and bigger out of our control. We are not in control of any of this. God is. It took Aubree's respiratory well-being being totally taken out of my hands with the intubation for me to be quickly reminded that no matter how hard we worked to keep Aubree safe and well, her entire life, health, and happiness is not up to us as her parents, but is completely in God's hands. We are so very thankful God has a plan for Aubree's life and that He is in control.
To be continued with Part 3: ACH and Transport to CHOP
|I know we all look pretty exhausted, and its because we are. And I had been crying all day long. It is physically painful to see my sweet girl sick and declining. This is the last picture we took together as a family before she was intubated.|