Unexpected Events Part 3: ACH

 

 

Here are links to Unexpected Events 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.

 

 3.) Prior to intubation, an echo was also done of Aubree's heart to make sure it was still functioning properly and had not enlarged or anything from all of the extra work her body was doing that was keeping her heart rate high.  Thankfully, the echo was clean! 

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!

 

 

Unexpected Events Part 2: Helicopter Transport to ACH & Intubation

If you missed it, here is Unexpected Events Part 1.  I had just left off at leaving the pediatrician's office to go about 15 minutes north to have a blood gas and chest xray at the ACH regional clinic.  When we get there, we also ask about going ahead and seeing the pulmonologist because Aubree had a scheduled appointment with her anyway the next day.  Once we get in a room, the pulmonologist is able to see Aubree briefly for a quick listen.  She does not detect a crackle like the pediatrician had heard.  Next, the respiratory therapists come and take a blood gas.  Our sweet girl is still feeling crummy and is needing 3 liters of oxygen.  Derrick, Amber, Aubree, and I are back in the room for what seems like quite some time before the pulmonologist comes back in the room and tells us Aubree CO2 is in the 90's and her pH is acidic. She says that the only option is for Aubree to be taken to Arkansas Children's Hospital via helicopter to help her severe respiratory distress.  This is obviously very hard to hear, that our baby is critical to the point that the safest way to transport her is via helicopter, i.e. the quickest method.  It is also recommended that someone go home to get Aubree's home cpap to put her on until the helicopter could get there to see if that would help get her CO2 and pH at more stable levels prior to transport.

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. 

 

 

 

 

 

 

 

 

 

Unexpected Events Part 1: At Home, the ER, & the Pediatrician's Office

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. 

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. 



Our sweet St. Patty's Day Princess!  This was also taken when Aubree was on the first round of antibiotics.  This was also  well before St. Patrick's Day so that we could send pictures out to family.  Aubree was unfortunately at ACH on the actual holiday. 

 

As we ended the course of antibiotics (literally, the same day we ended them), Aubree started acting fussy, and she is not a fussy baby.  She will literally go days at home without crying.   The night before, she had a restless night of sleep and her heart rate never lowered to her deep sleep heart rate.  That day, she was having trouble taking her normal cat naps even though she seemed tired.  Her spot checks throughout the day to check on her heart rate and her pulse ox were normal for her activity level and fussiness.  It was a pretty day so I decided to take Aubree on a walk in the stroller.  I remember thinking I should try let her get as much outside time as possible before surgery.  Also, I had hopes of this helping Aubree get a little cat nap since she seemed fussy and couldn't rest.  Anytime my eyes are not physically looking at Aubree, she is on her pulse ox monitor.  Anytime we sleep, that she is in the car seat, even with her back to me in the stroller, she is hooked up so that no oxygenation issues sneak up on us (like her rubbing her cannula out of her nose while sleeping, a portable o2 tank running out unexpectedly, etc.). 

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. 

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.

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