I feel like I will be just jumping right into the middle of her story here with this post, but this is for the purpose of both trying to process all that has happened in the past 24 hours, remembering what the doctor told us in our marathon session a few hours ago, and updating friends and family who are waiting.
Kendall was taken from her pediatrician’s office by ambulance to the hospital yesterday.
And today she was taken from that hospital to this hospital by ambulance again.
And the fun keeps on comin’!!!
Basically – she has RSV. It’s a pretty bad case of it, in that she is not breathing well at all on her own. Her heartrate hovers around 200 meaning its working very hard to pump the oxygenated blood through her poor little weak body. She had a rough nite on Tuesday nite, screaming almost literally all nite long, then coughing, then screaming more. The ped wanted to see her Wed. afternoon and within SECONDS of us getting there we had three nurses in there trying to get oxygen started for her with a nebulizer and the doctor wasted no time telling me she was calling 911 for transport to the hospital.
:I remember my knees buckling and looking at Kaylen and about 4891 thoughts going through my head at the same time. HOW? WHAT? WHY? My family was literally in four different places and they were telling me they were going to split us up even further. One nurse was just talking me through “get your phone out, ok good, now who do you know lives close to the hospital or here who can help with your other baby?” I was like – its not just her – there are two others at two different schools and my husband is in Pennsylvania in meetings!!! Well as if on cue, Ben called right then and I broke down crying trying to tell him what was going on – he said he would be on the next flight out but that would be a few hours and i said i have to go i have to figure out how to get everyone together. I called my darling sister and told her they were headed to Edwards and could she please meet me there to deal with Kaylen and Karissa. I called a neighbor to make sure Kealey got off the bus with her and to break the news to her gently, and then I decided I would just pick up Karissa from her school across the parking lot before driving to the hospital.
And then I glimpsed the paramedics coming in. And I really thought I was going to break from reality then. Seeing those men in their uniforms made it like 4000% REAL right then and I was trying desperately to go into a happy little world in my head where reality had no foothold. Everyone is asking me questions and making me repeat how she had been the nite before and is she allergic to anything and what medicines have you given her and meanwhile the two nurses are struggling to hold her still to give her another nebulizer treatment AND hold oxygen over her face AND get her pulse ox which was around 85. Meanwhile her DITZY pediatrician is calmly explaining that kendall’s in respiratory distress and that she just felt like an ambulatory transport to Edwards would be good and she would meet them there later to follow up. The “head” paramedic looks at her and says – “Dr., she’s not gonna make it to Edwards, we need to go nearest facility RIGHT NOW” and within minutes they had packed her onto a backer board and had whisked her away. Another nurse was getting kaylen’s coat on and feeding her animal crackers and entertaining her with stickers and getting her in the stroller so I could push her right out to the car to follow the ambulance. The paramedic said, we’ll meet you at Copley, do you know where you’re going? I nodded yes and watched him run down the hallway and I pushed Kaylen out of the office. i had the presence of mind somehow to call Erin at church and ask her to start praying because at that point i had NO IDEA what else to do or what kendall’s outcome would be. I was in shock I think. And we make it to our car and I hear the whine of an ambulance siren and it backs around the corner and whisks by our car in the parking lot and I sat there and watched with detached disbelief that that was really MY BABY in that ambulance whining its way down the street and I wanted to scream – MOVE OUT OF THE WAY YOU IDIOT DRIVERS!!!! But I didn’t.
Ben called me right then to tell me he was at the airport and I really and truly lost it. I couldn’t even form words – just sob into the phone that they had taken her away and I could still hear the sirens and i had to get karissa and i had to drive to the ER and he kept telling me to drive calmly and be safe. I somehow made it into karissa’s school through my tear filled eyes to get her and try to explain to her what was going on – she also started crying very hard and we were all just a crying sobbing mess in the car – me praying to Jesus to be with her and karissa just crying because I was crying and I am sure I scared her to death. Kaylen was actually, for once, quiet. I had had the foresight to bring an extra full bottle to the appointment with us – she was a happy camper.
We make it to Rush, the ER secretary takes us right back, and i walk into a room full of CHAOS. there are literally FOUR nurses pinning my baby to a stretcher trying desperately to start an IV. A doctor starts asking me THE SAME questions I had just answered to the paramedics (and truly, I get that they have to get an accurate history) but at that moment in time i was just like – look – MAKE HER BREATHE again, stop asking me redonkulous questions!!! AFter poking my child for 45 minutes they finally called the NICU at my insistence and had a nurse skilled in putting an IV into a squirmy 2 pound baby come put an IV in Kendall’s foot. Her O2 sats were still miserable – they ordered a chest Xray, and we just sat with oxygen for about an hour. REally, i mean, it was a typical ER experience. No one had any pep in their step about the fact that they had a barely breathing 3 month old there waiting for care. And for right then I was just glad to be holding her again, trying to calm her breathing down, feeling like at least they would help her somehow. They finally admitted us around 4 pm to the peds floor, which consisted of them just putting a pulse ox monitor on her and laying her flat in a crib. This seemed wrong to me on so many levels so I tried to make a makeshift wedge with blankets and towels so she could be semi-upright and on her side – it seemed to help her breathe a little easier. She was on oxygen and still had a sky high blood pressure/pulse and a scarily low O2 sat. I say all this because it still somewhat shocks me that they were so completely UNWORRIED about this baby who was clearly still in distress. At some point they had a respiratory therapist come up to give her an albuterol treatment. They had gone through all this trouble to start her IV and they still had done nothing with it. She wasn’t receiving any medications or fluids through it – it was just there bugging her. I remember asking them if I could pump or give her a bottle and getting very non-committal answers. I think I thought she was hungry at one point so I fed her a bottle, because it seemed like breastfeeding would be just a little too hard on her system (and yet my mommy alarms still weren’t going crazy at that point – hello!!! she’s too weak to eat but we’re not doing anything?!?!?! what was wrong with me?) I guess I thought – we’re at the HOSPITAL – surely she’ll be fine now. Since her pediatricians are not associated with Rush, we had to see the resident on call, who i think maybe graduated last year with doogie howser’s little brother. Am i that old that everyone seems SO young these days? I don’t know – but this kid was young. And inexperienced. So we settle down for the nite and the plan is to just give her some tylenol for her discomfort and continue the breathing treatments all nite. I finally fell asleep around 11:30 (ben made it home around 8 – flight got delayed because a man had a heart attack as they were pushing back from the gateway!!! of all the bad luck…) And I remember waking up to a LOT of commotion around 3 am because a tech had taken her temp as 103 axillary (meaning it was closer to 104), and she was PANICKING. She called the nurse in, who called the resident and they all sat there going – what do we do? should we give her ibuprofen? Yes give her ibuprofen. At this point I said – look, you put this IV in, USE IT. Give her fluids or something because you told me not to feed her and by now she is STARVING. so he at least listened to me on that. They got fluids started and gave her ibuprofen and ordered another breathing treatment. After this I fell asleep for about an hour and a half until it got light enough outside that I could start to see.
Catching up to today though –
she spent the nite at (close) hospital, and continued to go downhill. About all they did that was helpful was tell us it was RSV for sure. She spiked a horrible fever in the middle of the nite which threw everyone into a tizzy, and when i could finally see her this morning, she was roughly the color of E.T. when Elliott finds him in the creek at the end of the movie – kind of a grayish blue color. And with every breath her chest would cave completely in, exposing every rib and organ in her little body. It was beyond words horrific.
And then our savior walked in – Dr. Natalie.
I will again have to fill in details on our wonderful conversation later, but long story short, this dear dear woman actually apologized to me for the fact that no doctor has ever put ALL of her symptoms together and tried to fix the PROBLEM, not just alleviate symptoms. She sat and explained to me everything that was going wrong with kendall, and that she felt she needed to move her to a pediatric center in order to fully treat kendall like she needed. So out went the order to move her to (far away) hospital.
With a specialist. Actually a team of them. All of whom are looking at all the various issues Kendall is fighting and has fought her entire life in order to get a complete picture.
As of tonite our plan is this:
1. Fix the RSV. – she is now on three meds to attack it from different ways, and right now is resting as peacefully as I have seen her in a LONG time. She still is fighting a horrible painful tight cough, but those spasms are getting farther and farther apart. She is back on a feeding tube and just getting a constant stream of breastmilk into her little tummy. I really feel like this is key to both her problems and the now solution. Her color is back to normal – no more creek-bed E.T. Very reassuring. I think if I stop and think about how probably close to really crashing she was this morning that i will break from reality so I am pulling a Terra and pretending like that didn’t really happen.
2.) Tomorrow morning (friday) at 10:30 she will undergo a “sweat test” to get a more definitive answer to whether or not she has cystic fibrosis. This diagnosis has been on the table for a few weeks now, but our doctor was basing her “no” answer on very basic info. Since Kendall is VERY symptomatic of CF, and we know that I am a carrier, the doctor here wants to get some solid answers. The sweat test will definitely help move us in the right direction. We will have those results sometime after 3 pm tomorrow afternoon.
3.) Have a neurology team do a work up on Kendall’s “hypotonia” – lack of muscle tone. She has always been a “floppy baby”, and they feel like it’s ALL her muscles – her stomach muscles not fully working to digest food, her colon muscles not working to get it back out, her lung/rib muscles not working at top capacity to clear fluid and help her breathe, etc. This makes a lot of sense, but also has some of the scariest “diagnoses”, so I am also putting this one into a nice cute box and filing it in the “things i want to ignore” cabinet.
4.) Having a respiratory team continue to work up Kendall’s breathing issues, even beyond the RSV. Was her NICU stay lung issues related to the weakness that allowed her RSV to get this bad? Things like that.
So that’s what we know right now.
I am beyond tired.
I cannot thank you all enough for your prayers, helping hands, and childcare. You are all amazing friends and I am so so blessed by all of you.
I leave you with these words from a Sara Groves rendition of that old great hymn, Great Is Thy Faithfulness:
“I can’t remember a trial or a pain, He did not recycle to bring me gain
I can’t remember one single regret in serving God only and loving Him yet
All I have need of, His Hand will provide
He’s always been faithful to me”
God is faithful, and His hand of healing is upon our daughter. He is singing a song of peace over her even through all the tubes and wires weighing her down.
Thank you for your prayers. We feel each and every one of them.
I can’t respond to every email I have gotten, but I love getting them (yay iphone!!!). I read all your encouraging words to kendall and tell her how many people are praying for her.
I will update here tomorrow as I know more.
sleep well homies. Think of me on the easy chair/bed combo. It’s pimptastic.
who is officially now talked out.