Part 1 and Part 2 in case you want to get caught up.
*Three things I forgot to mention in the last post that I really want to remember:
1.) Aubree's room in the PICU was the exact same room Derrick's cousin Alex was taken to after he was transported via Angel One after a severe car accident. Out of all 26 beds in the PICU, we were put into one with strong ties to family and strong emotional memories. God provided such hope in that situation, and Alex is not only survived but is thriving by God's grace.
2.) On Aubree's first full day in the PICU (Tuesday, March 19th), it was a very trying day with every noninvasive approach to help Aubree stay adequately ventilated eventually failing time after time. That Tuesday morning, the nurse that was assigned to Aubree looked so familiar to me. I asked her if she had possibly taken care of our dear friends' daughter Hannah Crumby, and she had. Nurse Kelli had actually been a "favorite" who had taken care of Hannah frequently during her time at ACH, which is why I recognized her. I cried once the connection was made because it reminded me of the spunky four year old that didn't get to go home from ACH. This was just the beginning of a day filled with tears; however, God knew we needed a familiar face that trying day. There is no doubt God provided Kelli for us that day, to help us take care of our girl. Kelli is also a first-time mama to a baby just a little younger than Aubree, and she was so sweet and understanding about the pain of seeing our girl hurt. Kelli was so sweet and provided such great care to Aubree. Thank you Lord for giving us just what we needed right when we needed it, even something we didn't know to ask for.
Back to Part 3! Sorry for the interruption! After Aubree was intubated that night, I was finally able to rest somewhat because there was truly nothing else I could do for her, even from a comfort standpoint since she was sedated for being intubated. I knew that God had been and was taking care of Aubree. Once intubated, anything that I could do to "help" her was taken away, and all of the healing was left up to God and the medical staff He could use to help with His plan for Aubree.
A blood gas an hour after she was intubated showed her CO2 had been cut in half (from the 120s to the 60s) and her pH was no longer acidic (it was 7.14 when they decided to intubate; the lowest end of normal for pH without being too acidic is 7.35). Her heart rate was also down to normal levels since her body could finally rest. I was finally able to rest a little bit that night knowing Aubree was finally being ventilated (able to blow off her CO2), even if it was being done mechanically for her. Our poor baby just needed a break to let this illness run its course and for her to be able to rest and recover.
The next morning, Aubree took a "field trip" to the IR part of the hospital to have a central line placed. This is a much more stable catheter than an IV and is placed in a larger, more stable vein in the upper arm that leads directly to the heart. Since Aubree had to be stuck so many times for blood gasses and since she such a hard stick for IVs (took 3 nurses and about an hour and a half total to get one IV placed where the vein didn't blow at ACH), we were thankful for her to not have to be stuck constantly for blood draws. Also, meds, IV fluids, and the like could be easily given and work even faster since they would go directly to the heart. If an infection develops in the central line, it can be very dangerous because the infection would go straight to the heart, but lots of precautions are taken to keep the insertion site and all lines leading to the central line as sterile as possible. Aubree did great during the transport out of the PICU and back. We are still so thankful for this line since it prevented (and is still preventing) so many sticks from happening to our sweet girl.
The next few days consisted of Aubree remaining stable and healing as the vent was doing the work for her. One issue that came up as the attending doctors directing care for Aubree changed and with each change came a different opinion of whether or not Aubree should be attempted to wean off of the ventilator or not prior to going to CHOP. Aubree was intubated on a Tuesday (exactly three weeks prior to her scheduled surgery date) and this conversation started on Friday. The doctor coming off service (the one that intubated Aubree) did not want to attempt to intubate her. The weekend attending wanted to assess Aubree and let her tell us if she was ready. We were of the same opinion as him. The attending coming on for the next week was extremely gung ho about pulling the tube.
During rounds with the "gung ho" doctor, he was very ready to start weaning and pull the tube. I expressed concerns about her not being ready to wean vent settings in preparation of pulling the breathing tube because she was still symptomatic of rhinovirus (which is what got her intubated in the first place) and acting sick. She already works hard to breathe and just couldn't handle the work of being sick on top of the work she was already doing. Respiratory muscle fatigue kept her from ventilating like she should. Also, I expressed concern about the method they were wanting to use to wean her vent settings. They were wanting to wean her peep (the tiny air pockets in the lungs staying at least mildly inflated even when inhaling) relatively quickly and put her in volume support instead of pressure support. Aubree has always pulled pretty great volumes, but struggles with peep because of her chest being restricted. Also, from her previous extubation after surgery, she did not tolerate volume support but did tolerate pressure support very well. While I was always able to say my piece, I kept feeling like what I was saying was falling on deaf ears. I kept hearing "well, this is what we typically do" and "we'll just see if she's ready and, if she's not, we'll just put her back on her old setting; no big deal." I kept advocating for Aubree and reminding them that she is not a typical child, so what typically works for other kids isn't what will work for her. I also kept expressing concern about her not being ready because she was still symptomatic of being sick, and I was afraid of her becoming even weaker from a respiratory standpoint by weaning her vent support and that it would be very difficult for her to rebound because of her being fatigued from the illness already. I requested for doctors and APNs from Aubree's team come to the bedside many times so that I continue expressing my concerns, and they came. However, I kept getting the same responses. The nursing staff taking care of Aubree were very supportive and helped relay my concerns as well.
I literally did everything I could think of to keep them from weaning the vent except put my body in front of it and refuse. I guess next time I will put my body in front of the vent if I am ever faced with the same situation because once her vent settings were weaned, every concern I had about them weaning the vent settings came true. Her blood gasses became horrible, she was requiring more oxygen, her chest xray showed the worst signs of atelectasis (the tiny air pockets collapsing from not maintaining peep) it had shown since she had gotten sick, and she wasn't bouncing back once they put her settings back to what they were before the wean. Because she had gotten so weak with them making her do respiratory work she wasn't ready for, they had to increase her vent settings to even more support than what she was on before the weaning because she was even more weak.
To say that I was upset would be an understatement. I had done everything I could think of to try and protect my child and no one would listen. And Aubree was paying the price. I ended up talking through many tears to the attending that was on for that night (but not part of Aubree's team during the day), and for the first time it was acknowledged that they do not have experience treating a baby like Aubree and did not know exactly how to treat her. Now, I love ACH and am so thankful that they were able to safely intubate Aubree and stabilize her. The medical professionals there are skilled and wonderful and save children everyday. However, no hospital is an expert in every field. They can't be. ACH is renowned for many areas of concentration, but treating children with thoracic insufficiencies such as Aubree's is not one of them. CHOP, the #1 children's hospital in the nation and one of the largest, does not specialize in everything either. It's just not possible.
Also, as any parent of a child with special medical needs know, no one knows your child as well as you do. While we don't have all of the medical training that doctors have, we specialize in our little girl. It definitely takes everyone working together. We don't know everything and want and need the help of the doctors. Doctors change, hospitals change, but mom and dad are always there and are the only absolute continuity of care. However, I struggled in this particular case to get anyone to think outside of the typical child box to think that would be best for Aubree as the unique individual she is, even after giving them information that we know about Aubree from taking her to doctors who specialize in babies like her. The same overnight attending assured me that she would personally meet with Aubree's team in the morning before rounds to get a better game plan going for Aubree. The attending also said she would get the wheels in motion to get Aubree transported to CHOP so that she could be assessed to see if she was ready for surgery and optimize her as much as possible from a respiratory standpoint for whenever surgery would be.
I was very thankful that I was finally able to get through to someone about how Aubree is not the typical case, but hate that it took her declining from a respiratory standpoint to get anyone to listen. That night after we finally got her back to decent blood gasses, she was running fever again, which she hadn't been doing the last couple of days. It was also not breaking with single doses of Tylenol or Motrin. She also started pouring snot. I was told it was just because of the rhinovirus, but I knew it was something different because of the changes in Aubree. Upon my insistence, we did a viral panel and cultured everything possible to see if infection was brewing somewhere. The culture from her breathing tube came back positive for MSSA (a type of staph) that she acquired from being intubated, from being in the hospital, and I believe her weakened state from the vent weans. Aubree was given antibiotics and started to improve from the secondary infection slowly.
Rounds from that point on were pretty uneventful and revolved around Aubree remaining stable for transport to CHOP and getting the logistics of the transport arranged. It was set that Aubree would go to CHOP a week before her scheduled surgery date. During the rest of Aubree's time at ACH, she continued to have several super sweet nurses who would comfort her, love on her, and be so sweet to her as they provided the best care. We also had some great respiratory therapists, a dedicated case manager arranging the transport, a sweet social worker checking in on us in case we needed anything, and lots of great medical staff including several doctors. While we did have that one major hiccup, we don't harbor any bad feelings towards Aubree's time at ACH and are so thankful for all that they did to help our little girl when she was in such great need.
While there were lots of very difficult times, I want to remember the blessings that occurred while we were there. Little Rock where ACH is located is substantially closer to my family and Derrick's family. We were so fortunate to have lots of family with us every day and taking care of our physical needs. We literally only had to eat one meal from the cafeteria because of takeout, home cooked meals, and snacks coming from our family and friends. What a blessing! It was also so nice to see everyone since we cannot yet take Aubree anywhere, and it had been awhile since we had seen so many of our family members. My family also fixed and brought several of our favorite dishes for a yummy Easter lunch, which is the first meal I have gotten to have with almost all of my family since Aubree was born. We hated the circumstances, but we were thankful to be constantly surrounded by those we loved. Literally, our families were the first visitors of the day in the PICU and the last visitors to leave. Knowing we are not alone in the trying times and that we have an army of people that love us and Aubree helps us stay strong.
My sweet sister Amber and friend Monica made Aubree several sweet gowns for her to wear while she was in the hospital that were very cute and girly. This gesture meant so much to us! Amber quickly got very comfortable with the sewing machine and even deconstructed an Easter dress and sewed it back together in a way that Aubree could wear it with all of her lines and tubes coming out every which way. Amber also went out and bought all kinds of goodies and monogrammed her an Easter basket for Daddy and I to still get to play Easter Bunny and put together an Easter basket for Aubree. We wish we could have had our sweet baby home for her first Easter, but we are so thankful to have her here with us on Easter! Thank you Lord for the sweet blessing of our daughter and for hope through Jesus Christ!