Update on Feeding Tube Removal - Not doing great

The only thing that occupies Lucy and keeps her happy for a brief moment.

It has been almost a week since Lucy's feeding tube was taken out.  In my previous post, I said that Jason and I were drastically under-prepared for the aftermath of tube removal.  That was an understatement, unfortunately!  This has been one of the longest weeks of my life and I think Lucy has cried more in the past week (and probably me!) than she did in her first 2 years total.

Here is a rundown of what's been going on (I apologize in advance that some of this is graphic):

Wednesday:
Jason is leaving for Tashkent, Uzbekistan today leaving me on my own, with the help of our wonderful, capable, patient nanny.  By 8:30 when the nanny arrives, Lucy and I are in tears.  Lucy's opening continues to ooze at her site and she is clearly uncomfortable and crying.  I am unable to comfort her.  We finally get her calmed down enough to eat breakfast but most of it ended up coming right back out through her opening.  There are moments of calm in the house, but Lucy is only comfortable when she is laying in my lap or her mind is preoccupied with YouTube videos.  We both smell like vomit ALL THE TIME.  I call the GI doctors who took out the feeding tube to see what they think about all the leaking.  Their response is that it can take several days to close up and that I could try to put Maalox on the wound to give her some relief.  My mom offered to come help if I need her, but it HAS to get better, right?

Thursday:
Lucy doesn't sleep through the night anymore.  I forgot how rough it is to wake up to a crying baby in the middle of the night.  She wakes up and her dressing is saturated from stomach contents and her site is very sore, probably from her scratching it in her sleep.  I've discovered that putting a diaper around her midsection helps keep her somewhat clean and protects her middle from inadvertent scratching.  When she wakes up in the middle of the night, she is awake for a minimum of 2 hours so we have lots of middle of the night cuddles, songs, books and cartoons.  During daylight hours I quickly realize that I need my mom.  So, I send her a text and she re-arranges her schedule indefinitely to come down and stay with us.  Seeing grandma and grandpa is a welcome distraction for Lucy.  Her pain level and leaking is pretty much the same as yesterday.  Her skin around the site is raw and almost looks burned from the constant exposure to stomach acid.  We try to get acid reflux medication and Tylenol in her, but so much of it leaks out I'm not sure how helpful that is.  I am worried about her getting dehydrated.

Middle of the night chilling with mama

Friday:
Up in the night again...so nice to wake up and have mom in the house though.  This is truly a full-time job for 2 adults.  I am trying to get work done as much as possible when Lucy is calm with the nanny and my mom or when she is sleeping.  I went into the office during her nap today for a meeting and ended up blubbering to 2 of my co-workers who just asked me how I was doing.  Perhaps working from home is a better option for me right now.  It is just SO, SO incredibly hard to see Lucy in pain and continuing to leak and not to be able to do anything for her.  The doctors seem to be no help and after talking with them I feel like I am being overly sensitive and need to just suck it up.  If it were me, I would do that.  But it's an innocent little 2 year old. 

This morning I called the GI doctors again.  They finally called by back at around 2 with a recommendation to go to the ER if Lucy was getting dehydrated and a referral to surgery to determine if her site needed to be surgically closed.  I called surgery immediately but got voicemail.  Of course, they called me back after office hours and their recommendation was to put the tube back in or take her to the ER if her pain seems unbearable.  They also stated that it was normal to take awhile for a hole like this to close.  Can you believe it?  I was beyond mad at the lack of empathy by both offices and seemingly lack of due diligence to provide any level of care for Lucy.  Oh, and one of their pieces of advice was that stomach contents can ruin clothes so to watch for that.  I'm like - REALLY?  I am barely functioning and everything in our house has a faint smell of vomit.  I went to CVS with a giant spot of it on my pants.  Do you think I care about the stains on her clothes or my clothes or the carpet?  Talk about out of touch with reality.  UGH!

Saturday:
Day seemed to be going better until mom called me while I ran to Target during Lucy's nap saying that Lucy woke up completely inconsolable and in a lot of pain.  I turned around and went home to finding a crying baby and grandma :(  Seems like when she sleeps, her wound dries out the tiniest amounts and then cracks and bleeds and is very painful.  She continues to soak through all gauze and dressing that we try and while eating soaks through at least one Size 4 diaper to the point that her clothes are wet as well.  We are doing laundry every night and she's wearing between 6 and 12 outfits a day.  I stopped changing my clothes because I am too exhausted to care.  Tonight Lucy woke up for the first time before I even went to bed.

Sunday:
We seem to be in a bit of a groove around here.  We wake up slow and Lucy sits on my lap until her pain is tolerable.  Then we get a dry dressing and sit at the table.  Her first glass of liquid with any meal is always painful, because it just runs out of her opening.  Then it seems to get a little better and we spent mealtime holding her tummy, coaxing her to eat and playing on the iPad.  It takes about 1 1/2 to 2 hours per meal.  We were able to take a break today to throw my sister, Melisa, a baby shower.  Lucy slept through all of the shower except the last 1/2 hour, when she woke up very upset.  She was happy to see Melisa and Ashley for a few minutes though and again, other people are a good distraction for her (and us!)  I am counting the minutes until Monday when I can talk to the doctors again. 

Monday:
I called our healthcare concierge service through work and the RN agreed that Lucy's situation doesn't seem like normal healing to her.  She told me that a doctor HAD to see Lucy.  It made me cry from relief to hear another person in the medical profession agree that I wasn't crazy and that this is not typical.  We also got in to see the pediatrician today (ours was gone, but we at least got to see a doctor).  We left with another referral to surgery and come additional cream to try.  They didn't work.  I'm not surprised.  Lucy has lost over 2 pounds since last week - that's like 10% of body weight.  Amazingly, we were able to get a surgery appointment for tomorrow morning (in Minnetonka, but at least we don't have to wait until their next opening on the 23rd!).  Glory to God for his small victories!

Again, I certainly did not understand that this would be such an intense healing process.  I was expecting it to close on its own within a matter of days or to have it stitched immediately up if it didn't.  I did not anticipate the FT care that Lucy would need to keep her clean and dry and somewhat hydrated. If my mom wasn't here, I would literally never be able to shower, or eat or get the supplies Lucy needs (I think we've spend about $250 out of pocket in medical supplies this week, from tape and gauze to Pedialyte and new creams and ointments).

If the surgery consult tomorrow ends with another doctor telling us to wait it out because it will close on its own, I already warned my mom that I am not responsible for my actions.

A huge thank you to all who know part of this saga who have been praying for Lucy and us.  We feel your prayers and they carry us through the moments of intense pain, screaming and crying and exhaustion.

We will keep you posted on how tomorrow and beyond go.