In the Hospital for a Week

Baby Audrey and I will be in Salt Lake at Primary Children's Medical Center for at least a week.  Her routine monthly esophageal dilation surgery on Friday morning reopened the previous tear in that thick, brittle scar tissue in her throat. As updates come in, I will continue to add them at the bottom of this post.

Daddy comforting Audrey during their ride to a swallow study checking for leaks following Friday's dilation.

Her surgeon knew right away that something was probably wrong, because her throat dilated right open past the point it had been a month ago.  He asked that she be held a few hours for observation, and sure enough,  as she came out of anesthesia her oxygen needs seemed to be gradually increasing instead of decreasing.  A swallow study confirmed the leak had reopened, and we were admitted for the night.

We spent Friday night (June 2) at our local hospital under observation, and she seemed to be improving dramatically that first evening.  During the night however, fluid quickly built up around her right lung, making it difficult for her to breathe.  Her oxygen needs and pain level continued to increase, and on Saturday morning she was transferred up to Primary Children's for surgery to relieve the pressure around her lung.  The chest tube drain (for her lungs) and a picc line (to send antibiotics directly into her central blood lines) were placed without incident.  We are waiting for tests to tell us whether saliva is leaking into that area or if it is simply inflammatory "pleural fluid".  The tests we have seen so far seem to indicate the second, which is what we want.  Saliva would mean major surgery to open her chest for rescue surgery.  In the meantime, her pain has been gradually decreasing and her breathing is much less labored with the chest tube releasing that pressure around her lung.  Thank you for your prayers for baby Audrey.  We will try to keep you posted.

Audrey's first professional portraits, taken two weeks ago!  Thank you Michelle and Candi!

4:30 p.m. Saturday June 2 (before the entry above) Facebook status:

Audrey is in the Operating Room at Primary Medical Center after an unexpected turn for the worse and transfer of hospitals after her routine dilation surgery went south yesterday. I am alone and very nervous, but on the bright side I did get to see lots of things I haven't seen before today. The inside of an ambulance (well, when I was conscious) and met a really cool paramedic who's been practicing for 25 years and lives his mantra that "life is a test, not a vacation", the inside of the Operating Room (nifty, they had a ginormous monitor and murals on the walls of a Utah Jazz basketball game), and managed to get myself very, very lost in the hospital despite having lived here for five months last summer. And I tried a new kind of soup in their cafeteria, yummy chunky tomato basil. *sigh*

 

Please keep praying for that sweet baby girl. She is being a champ, but she is in a lot of pain. Morphine round the clock. You can do it baby, Go Team Audrey!

10:30a.m. Sunday June 3 update:  
Three great things to report: her (awesome) surgeon just came to see us and said everything is looking good so far, that what we are seeing in the drainage tank is definitely pleural fluid (inflammation instead of spit), and her pain must be lessening some because she has been able to go a little longer between doses of morphine, and best of all (ok maybe I'm a litttttle off on my priorities here), our trip to Oregon that we had planned for mid June is NOT off at this point.  (Yaaay!)

My beautiful girls, oldest and youngest of our 5 children.  Both medical miracles. 

4:30 p.m. Sunday June 3 update:
Audrey continues to rest and get round-the-clock pain meds, but she is breathing and sleeping more deeply and her oxygen needs are definitely coming down, which is great because she keeps trying to take off her nasal cannula!   She has gone from needing 2 liters all the way down to 0.5!  My favorite part was when she started reaching for things again out of curiosity, and sat up in her bed and reached for me.  We even watched a cartoon together that she seemed to really enjoy.  Little by little I am beginning to see a return of our sweetheart's personality.  

Daddy holding her upside down in our newly built sandbox, mid-April

I wrote a lot more on this day, but didn't want to distract from the quick updates, so it is at the bottom of this post.

 2:30p.m. Monday June 4

Last night she seemed to need her morphine more often, and her breathing sounded like it was getting worse.  This morning we went down for an x-ray and wound up instead in surgery, because the x ray showed a massive amount of air pressing on her heart.  They placed a second chest tube drain, got the air off successfully, did her esophagram under sedation, and the leak still appears to be contained, so we don't know where the air is coming from.  Could the air be coming through a micro-fracture that is too small to allow liquid?  I am bracing myself ever more for major surgery.

7:45 a.m. Tuesday, June 5

Yesterday they vented 60ccs of air (a large syringe full) off Audrey's chest cavity around her heart. Their current theory is that a lung was slightly punctured when the first chest tube was placed, which fits with the esophagram studies showing a contained leak. The lung apparently adheres to the chest wall following open chest surgery (which she has had twice in her life) and makes it easily punctured in the case of a chest tube placement. A couple of the pieces don't fit to my reasoning, but I like the prognosis of that much better than a free leak from the esophagus. She is now on three antibiotics--Meropenum, Diflucan, and as of yesterday's culture readings, Vancomycin (any time you see -mycin you know it is a big gun, so I'm thinking probiotics again after February's C-diff, but her system is at rest since she's on TPN so I'll have to wait until we are approved for G-tube stuff again) The biggest new news is that she spiked a fever in the night of 103 farenheit and we don't know why. It responded great to Tylenol though, and came right back down to a reasonable level. Man, this kiddo does nothing halfway. (Where does she get THAT from?) We'll probably do a swab to see if it's a virus, perhaps the one her 2-yr old brother had over the weekend. Thank you again for all the prayers and sweet messages of support and encouragement.

Her esophagram image shows the leak (also called a diverticulum, the black ball on the left side near the top of the photo), but no "effusion" or leaking out into the chest cavity.

9:15 a.m Tuesday, June 5
Just learned: A more likely cause for the fever is a mild pneumonia and atelectasis (I just learned how to spell that) they think they are seeing on the x-ray.  Both normal side effects of what she is dealing with, caused by not breathing deeply enough to inflate the entire lung.  I am so glad, because I really don't think she was exposed much to her toddler brother's bug, which he came down with mostly after we left... (Plus I have tried to be really careful!  Even when he isn't sick! We are always washing and trying not to let them share things they put in their mouths etc.) and she really didn't need anything more to deal with.  They couldn't do much for a virus anyway, and she is already getting all those antibiotics, so yeah, I like their theory better.  But they will probably still swab her nose to test for viruses.

10:30 p.m Tuesday June 5
Too much new Audrey info to write about immediately, but will flesh out asap. For the moment, here's the CNN ticker version: positive rhinovirus results (she has a cold), continued high fever when not on Tylenol or Ibuprofen, no one seems to know how to test her esophagus for an air leak but they'll try once her infections clear, Vancomycin med was stopped following a negative culture (good news), Boston Children's is going to weigh in over the next few days, a stent is the PC doc's current plan if the leak doesn't heal itself, but the more I read about it the more I am worried it is not a long term solution. At mid day I was very down and she was in a lot of pain, but we both got naps and by evening I saw the first smiles in days, took her on a wagon ride through the halls-- she likes the jungle murals, especially the mama gorilla with her baby. Received an unexpected email with some info about a stent complication in another toddler that led to his passing-- brought it home that we are fighting for her life with every decision we make.

By far the highlight of the day-- her first smile!

The shimmering city lights out our window

When it hurts to move, snuggle your mom

 

 

 

 

 

 

4:30 p.m. Wednesday, June 6:

A quiet, pleasant and restful day.  Wagon rides to the courtyard, and unexpected visits from dear friends.  Docs are waiting to see if her diverticulum (leak) heals in a week.  If it doesn't, they want to place an esophageal stent in an attempt to close her leak and keep her stricture at bay.  I am not very hopeful that a stent will work for Audrey's funky anatomy, and from what I've read I definitely do not think it is a good long term solution.  Researching our "what if" options has led me to wonder about a jejeunal interposition; it is a major surgery but appears to be a much better option than those we've previously discussed.  See this link.  That a surgery specialist's website lists its primary drawback as the fact that it is a "technically very difficult surgery" has me wondering whether we are heading to Boston, not because our fabulous surgeon couldn't do it, but because I know he cares so much about her that he would want her in the most experienced hands for that specific surgery if it turned out to be our best option.  I haven't felt up to writing in detail about my feelings and the details of how everything has shaken out the past couple of days, but I want to express my awe that the order of events has been, if you don't believe in a higher power, an awfully huge coincidence.  Information and resources have been falling into my lap at exactly the right moment, courage and strength and the right people to talk to have been at my doorstep at exactly the right time.  Whenever my pragmatic brain starts to kick in--- bam, I am reminded we are not alone. My Father in heaven is always there, leading, guiding, and walking beside us, helping me find the way to help this courageous little girl.

STOP-- PHOTO TIME!!  (cue techno beat)

We took a morning walk outdoors to the children's courtyard!

The courtyard is full of healthy and lovely things

The cheery children's courtyard

 This artwork was made by my young friend Andrea, whose mother generously brought her children and my older daughter to visit me today.  The dragon is breathing fire that holds the words,
"We're with you."
It now hangs on our hospital room wall.

What a treat to see my two girls together today!  I have missed my other kids back home!

LOVE this family!  Thank you for visiting me, dear friends!  Like the dragon Andrea painted, you are truly powerful.  And thank you, THANK YOU to EVERYONE who has come, even if I haven't snapped your photo--- your visits made our day!

****************************************

A few more thoughts from Sunday June 3:
Wanted to share a few fun things with you, just for the record.  First, you miiiiight be wondering how could I possibly get lost in the hospital I spent 5 months living at, right? So, we arrived by ambulance and walked through the ER, up the back patient-only elevators to our room, and down to the Operating Room as soon as we were prepped and they got through with their previous case, through the halls and elevators reserved for gurneys-- I had no parent bracelet, no room number (never thought to check), nothing. Holding and comforting her most of that time. I walked down with her and a temp tech INTO the O.R. (never never expected that! They always made me say goodbye outside before!) and the tech left. The O.R. staff let me help comfort her as they got her ready and on the table, then when they were ready they told me to kiss her good bye and let myself out the door.... and BAM. I was totally alone. It was so weird. I recognized NOTHING of where I was in that part of the hospital. It's the part where the surgeons go, back behind all the waiting rooms, and behind some special doors that lead out into the main hallways and lobby, but it is a complete MAZE back there and I was hopelessly lost for which way to go. No helpful signs, and doors and hallways in every direction. 

  

I actually had to ask a random doctor in the hallway which way to go. I had a moment of panic that I would have a hard time finding her room again, realized I had no parent bracelet or anything-- it was a weird feeling, especially on top of not knowing how the surgery would go. I knew what section of the hospital we must have been put in only because I remembered the fish murals from our G tube training class-- but there are a ton of rooms and hallways back there too. I got back to the right place by remembering the view out the window at the end of the hallway near our room, and looking for the hallway with the window view that matched that memory-- and when I got to the right area a nurse recognized me. How silly, huh? It was like the twilight zone. I have ZERO sense of direction and it gets me in trouble a lot. Hahaha! 

One really fabulous thing about this hospital stay though, is I LOVE that I get to stay with her!!! Some parts of this experience are going to be much easier than the NICU!  When my little two-year-old is over his cold, my children and husband could all visit us at the same time instead of one at a time!  I don't ever have to leave Audrey except for when I need to shower or buy food. Saturday night I had a funny little adventure.  They have a single bathing room out in the hall you take turns at. I must have gotten a shower after others had used all the hot water last night, because it was much colder than I like and I thought from the way they had things set up, it might be a safety lock on the hot water temp or a cost saving thing. I thought to myself, this is nothing!  I can be tough!  My friend in Ecuador has no hot water at all!  This is a blessing to be here!  Think of it like camping!  Better than camping!  But after shivering my way through washing, I dried off and looked at the separate bathtub and an idea occurred to me-- I wondered if it might be on its own water heater--- so I tried it and it worked! (Soooo guilty! What a waste of water!)  But it was HOT and perfect, and I was a mom-cicle!  It was getting pretty late and I knew I was going to have a hard time sleeping if I couldn't warm up, so I got in the tub just to soak for a few minutes and warm up my core temp.   First bath in a lonnnnng time, and I love baths, so it was a really nice way to end the evening.  I thought about nothing except how Skyping (video calling) my silly little boys back home earlier that evening was soooo much fun!  They are such hams for the camera and were so excited to see me and Audrey!  Justin says our little two year old keeps asking to go in the car to come see Mommy and Audrey.   He has a cold so we will have to be happy with Skype for now, but it was so adorable how excited he was on the computer. As I settled in to sleep, I enjoyed the GORGEOUS view out of our hospital room window looking out over the city skyline. Now it is the next afternoon, and I am having a sweet quiet day with just Audrey and me.  I just gave her a sponge bath and she is more comfy (after so much perspiring) and resting more deeply right now, and we get to be alone together in the room most of the time. I might actually get to take a nap this afternoon. Sooo... yeah. We are not doing too bad, all things considered.

Ok, so this is not aaaaactually the EXACT view from my window, but it's kind of close and was better than my photo, and my camera's photo doesn't do justice to how pretty it is. :)  The shimmering city lights, breathtaking mountains, the indigo sky...

But I have to be honest, I'm not going to mince words.  Major decisions are ahead, sooner than I had hoped, and our surgeon is struggling to make those very difficult decisions.  He needs our prayers too.  I think he is going to say he won't dilate her again, that we must cut out the scar somehow.  I am afraid for what that means.  She received a priesthood blessing today, and strangely the blessing said nothing about healing.  Only that she would be a blessing and an inspiration to many, that she would fulfill her purpose here on earth, that she would by her example and story encourage others to become their best selves, to know that they too can do hard things.  I trust the Lord.  All we can do is to do all we can to help Audrey, and trust the Lord to make things work together for his purposes.  In the meantime we are blessed with her sweet amazing self, and focusing on each day, taking it for what it is, and feeling joy at each little miracle.  I also received a priesthood blessing, and it talked about how our family and friends are God's angels to us.  Thank you to everyone-- for watching children, for making meals, for calling and praying and caring and reading this.  You truly are our angels!

Mon précieux chef-d'oeuvre, la raison de tout ce que je fais