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| This is Aubree feeling and looking great in sweet little pigtails exactly a week before things started changing on Friday afternoon, March 15th. |
With all that has happened, I have not had the time to do a big blog post about everything. For my own memory and for other Jeunes that might be looking for information like I did when we got Aubree's diagnosis, I am going to try and record the course of events from the past month or so. I have been pretty good about updating friends on facebook in bits and pieces about what has been going on with Aubree this past month once she was flown to Arkansas Children's Hospital. This is pretty much everything that happened up to that point. Here we go!
About 5 weeks ago, Aubree was drooling like crazy, had the beginnings of a stuffy nose, and was tugging at one of her ears occasionally. Never to let anything slip by us with our girl, we took Aubree to see her pediatrician (who is seriously the best!), and he said that it looked like she had an ear infection in one ear. To be extra cautious, he put her on 2 weeks of amoxicillin (a normal course would be 7-10 days) just to make sure we were in tip top shape for Aubree's upcoming surgery in about a month. Aubree's ear got better and her snottiness got worse for about the first week of the antibiotics, for which we did some saline and suctioning with the suction machine at the house. By the second week of antibiotics, Aubree's nose was dry, and she was no longer pulling on her ear. Throughout all of this, Aubree acted like her normal, happy, active self.
I also want to add that Aubree is checked out (respiratory rate, heart rate, weight checks, lungs listened to, etc.) weekly by her home health nurse to be another set eyes (and medically trained ones at that) to make sure that there are no changes or areas of concern. We have never had any red flags pop up during any of her weekly visits.
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| Riding her pony like a big girl! I had gotten her this for her 1 year birthday, but we decided to go ahead and give it to her so that she could enjoy it and just get her new stuff for her birthday. So glad she got to enjoy it before she got sick! Can't wait for her to be riding her pony again! At this point, she is still on the first round of antibiotics and doing great.
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So, off we went on our walk. Aubree's oxygen saturation is normal and her heart rate is normal for
her being awake and active. As we strolled, Aubree's o2 sat starts hitting the lower 90's and her heart rate is still that of an active heart rate, even though she is relaxed and starting to drift off a little bit. This is not normal for her. I readjusted the pulse ox probe to make sure that there was good contact on her skin, double checked the portable o2 tank, and checked Aubree to make certain that she was as expanded as possible (not hunched over compressing her lungs). Everything checked out, but Aubree's o2 sat was still lower than normal and her heart rate higher than normal for her activity level. I turned her o2 tank up to 1.5 liters from 1 liter, and her sats returned to the 97 and above that they usually are. Her heart rate remained relatively unchanged. We continued strolling since Aubree was finally able to relax a little, and her vitals remained unchanged throughout that time.
We got home from our walk, and, needless to say, Aubree remained on the monitor and on the 1.5 liters to keep her comfortable. It was late afternoon, and Daddy would be home within minutes. He got home, we assessed the situation together, and he watched Aubree while I called the after hours clinic about getting Aubree seen that night. While these were all seemingly tiny and normal changes (except having 02 requirements of course) for any baby that might be teething, etc., we really have to act on any change that Aubree displays to ward off anything that could potentially be brewing and severely take a toll on her. After several calls back and forth between the nurse, her conversing with the after hours pediatrician who was not very concerned because of the mild changes, and trying to arrange a location for Aubree to be seen with as little exposure as possible, it was recommended that we wait until the morning and see Aubree's regular pediatrician who happened to be on for the weekend. We were thankful for him to see Aubree since he knows her and her history so well.
That night, we watched Aubree like a hawk. Our poor girl was miserable and could not rest. It was even worse with her cpap mask on. Poor baby would thrash and cry on and off all night. The next morning, we loaded up and had the very first appointment of the day and went in the back to avoid all the potential germs in the front of the office. The pediatrician sees her, says her first ear infection cleared up, that the other ear was now infected, and that the pain during sleep and increase in o2 needs and heart rate was most likely a response to pain from the ear infection. He said her lungs sounded great and prescribed her a stonger antibiotic and some pain drops for her ears. Derrick and I had talked about the night before and discussed with the pediatrician if we needed to go to Arkansas Children's Hospital just to be on the safe side. With it being the weekend, Aubree would have to be admitted through the ER and could not be directly taken to the floor like we had done previously with an admit during the week. He did not think it was necessary. Also the potential exposure to RSV, the flu, pertussis, etc. in an ER setting would be too great of a risk unless Aubree was in a crisis situation. Aubree has never been anywhere but home, outside, and the doctor/hospital/housing for medical purposes in her life to help keep her as protected as possible. We seriously cannot be too careful because any tiny illness is potentially lethal for her because of her lungs being so restricted. Our pediatrician told us he would be on call throughout the weekend and to just have him paged if we needed anything at all.
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| After the doctor's appointment, not feeling great but still having some fun. Aunt Amber taught her to hold the phone to her ear. So cute, even though you can tell she doesn't feel her best. |
After the appointment, Aubree fell asleep in the car seat as we drove around waiting for her meds to be filled. We kept driving to let our poor girl finally get some rest. That afternoon, she seemed tired, but not any different than the last 24 hours. As soon as it got dark outside that night, our sweet babe started getting gradually worse. She started retracting, sweating, and needing 2 liters of o2 to maintain her sats. Of course, we immediately paged the pediatrician. We again discussed the option to go to ACH with him. He said that he did not think it was necessary. I told him I really wanted to get a blood gas and chest xray to make sure nothing was brewing. He arranged for us to have Aubree seen with an ER doctor locally (under extreme precautions taken by us and the staff) to have the blood gas and chest xray done.
At the ER, there was literally no one there (this is the same ER I have left before because the wait is usually so ridiculous). Thank you Lord for even less exposure! The chest xray and blood gas came back normal, and the ER doctor saw no need to do anything else and sent us home. He did give her an antibiotic shot to help speed along the healing of the ear infection since the pain associated with it was the only thing that really seemed to be an apparent issue causing this chain of events. By the time we got home in the wee hours of the morning, we were all exhausted but thankful everything came back good at the ER . We put the cpap mask back Aubree like we do every night and the poor thing screamed and was restless through out the night/morning. By this point, we had called in reinforcements for Aunt Amber, who joined us on our trip to the ER and helped us take shifts watching and trying to console Aubree while we tried to get just enough rest to function.
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| At the ER to have a chest xray and blood gas. She loves phones! This night in the ER, she also figured out how to make a kissy sound, but with her tongue. She loves us making kissy sounds to her and wanted in on the fun. Our tough girl, reaching milestones in the midst of feeling rough. |
The next day, Aubree rested somewhat after the cpap mask was off and would play just a little, but she just not her happy perky self. Also, we had to bump her o2 up to 3 liters if she got upset at all. Of course, with every change, we called our pediatrician who was on call (another blessing that her doctor was the one on call for the weekend). I honestly lost count of how many times we called him and he called us throughout the weekend. We also emailed and spoke with our pulmonologist at CHOP. Without telling him the opinion of our pediatrician, he also agreed that the increased heart rate and o2 needs were most likely due to the pain response from the ear infection. Both doctors agreed that we were doing everything that could be done for her at home and to just keep doing what we were doing.
I also had the oxygen supply company bring out a new oxygen concentrator. I had been getting the run around from them for a couple months about getting a new one because it could not give the amount of o2 it was supposed to. It was supposed to give up to 5 liters, but would not even give the 3 liters she was requiring. Thus, we had to use her portable and emergency tanks, which we were burning up quickly. Thankfully, the on call respiratory therapist that Sunday was able to bring us a new, functioning oxygen concentrator and some more tanks. We were so thankful to have a constant supply of oxygen and the ability to go up to 5 liters if we needed to.
That afternoon and evening, Aubree was very tired and slept many hours just laying upright on Daddy's chest. Anytime she wasn't in an upright position, she acted very uncomfortable. That night, as we were putting Aubree to bed around 10 pm, she had the faintest cough. She had also started running a mild temp that we were treating. We took note of these change and decided to take her to the doctor the next morning. That night, we also just left her on her normal oxygen and did not put her on cpap so that she might get some rest. Aubree was exhausted. I sat up watching her most of night since she was propped almost upright with pillows since that is the only way she felt comfortable. She had the same mild cough a few times throughout the night and, while she was still very restless and stirring, got more rest than she had been getting.
First thing in the morning (this is Monday and everything started on Friday afternoon), I called and we were able to get Aubree the first appointment of the day with her pediatrician. Still a huge blessing that he was on and able to see her since he had been so involved in the happenings of the weekend. Also, it was so early Daddy had not yet left for work, and he was able to take us. Aunt Amber was thankfully starting her spring break and was also with us every step of the way. At that appointment, the pediatrician listened to her chest and thought he heard an ever so slight crackle that he had not heard on Saturday. He gave her another antibiotic shot, tested her for RSV (which came back negative), and sent us to our regional ACH clinic to have a chest xray and blood gas done just to be on the safe side.
To be continued in Part 2: All Things ACH and Some Flying
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