In loving memory of Great-Grandma Los

Today was a funeral for my Grandma Los. What a wonderful, caring woman she was. I am so happy that Lucy got to meet her. She LOVED Lucy and was so excited every time that we came to visit. Her health has not been great the past few months but man, when Lucy was over she had a new zest for life that had her out of her favorite chair and trying to get on the floor to play with little Lucy!!  She was a faithful blog reader (thanks to my mom, who printed them out for her!) and a prayer warrior for all of her family.

We will all miss her fellowship, coffee time and prayers on our behalf!

Lucy is feeling great and is basically back to her normal self. We have not downsized her button yet because her current one is still pretty leaky. After taking a much needed week off of doctors, I think I have the energy to pursue second opinions next week and make a plan for  getting rid of her feeding tube once and for all!!

Home!!

Happy to be able to swing again!

 We are home and are so thankful to spend a quiet weekend here!!  Lucy was discharged yesterday afternoon.  Since she had a feeding tube back in and we've taken care of a feeding tube and sore skin for years now, there was really no need to keep us.  So, we are basically back to where we were 2 weeks ago.  Lucy has a feeding tube that we aren't using and her skin is more irritated than it was before!

The plan is to downsize her button later this week to allow her opening to close some more on its own, without having such a gaping opening that will cause her to lose all of her nutrition.  From there - we shall see!  I was just so happy to leave the hospital and not have some other "trial and error" solution provided.  UGH!

She is feeling good and is about 95% of the way back to her old self - BEFORE the tube was removed and we were dealing with the massive leaking.  What fun we had during our tea parties, playtime outside and fort building today!  A special visit from auntie Melisa and uncle Tony complete with fun new toys, family dinner and a walk to the park was a great way to welcome Lucy home last night.  My parent's stayed over last night to make sure everything was OK and then headed back home this morning (for the first time in over a week for my mom!). 

Again, a huge thank you to everyone for keeping us in your prayers.  It has been a tough couple of weeks around here with Lucy not able to do most of the things she loves (jumping, swinging and eating!!).  I absolutely could not have handled the situation without my mom's willingness to stay and help distract Lucy during painful bandage changes, selflessly relieving me at the hospital so I could sneak a shower or cup of coffee and generally just being around for support.  Having my dad join her for the past few days to help share the load was a huge help as well.  As my wise friend, Karly told me this week: "Thank You for giving me the opportunity to help."  She's right...sometimes it is very difficult for us to ask others to help us, but often many people in our lives are more than happy to do whatever they can to help us share our burdens. 

Admitted to the hospital

Patiently waiting on grandma's lap.

After a week of barely keeping any food in her tummy (because it came directly out through her feeding tube site), very few wet diapers, NO dirty diapers and major, major skin irritation, Lucy was admitted to Children's Hospital in St. Paul on Tuesday evening.

I am so grateful that she is here and is safe and that the doctors are finally listening to me that this is not "normal."  But I am beyond frustrated that this happened at all.

On Tuesday, we went to the surgeon's office to consult on the issue.  He saw her and the diaper we were keeping around her to keep her dry and referred us to the ER to have a tube put back IN to her stomach, stating basically that her skin was in such bad condition that it would not be a good idea to close the site up surgically at this point, but that it needed to be closed when her skin had healed.

So, we headed to the St. Paul Children's ER and this is what we saw:

UGH!  I am not even sure how long we waited, but it was a while.  After many doctor visits and calling GI, who said, call surgery, we were eventually admitted as in-patient in order to give Lucy IV fluids and monitor the amount of food that was actually coming out.  They ended up putting on a colostomy bag to catch the stomach contents and quickly realized that most was immediately coming back out directly into the bag.  Note that I had called the GI doctors 6 days prior and told them that, then again 4 days ago, then repeated everything to pediatrics the prior day.  So, feeling good that the doctors are listening, but so frustrated that is has taken this long.

In some ways, being in the hospital is better than being at home, because Lucy's care needs so intense that we were way out of our league on our own.  So there is comfort in knowing that she is getting the care she needs to be back to herself.

On Wednesday, we had the pediatricians and GI doctors aligned that once her skin was healthier, it should be surgically closed.  However, for some unknown reason, the surgical team is still adamantly refusing.  They state that although this much output is abnormal, these sites normally close on their own and should not need intervention if we give it enough time.  Their first solution was a different type of feeding tube that goes through the nose and directly into the intestines.  The thought was that it would allow her stomach to be empty and then the site would be more apt to heal on its own.  The catch - no food orally until it heals.  I really couldn't believe this was a viable option in their mind.  I mean, we have literally dedicated 2 years of our lives to getting Lucy to the point of eating and loving food and NOT needing a feeding tube so to throw that away is ridiculous to me.  Let's just say by the end of the conversation, they knew my thought on it.

Never lost her appetite through this all!

On Thursday, with the surgery team still holding out that they will not perform surgery and her stomach still leaking most things out, the inevitable decision was made to put a feeding tube back in. So, she has basically the same tube in her stomach as before, except one size smaller (think fractions of a millimeter smaller, here, nothing drastic)

I am beyond upset that we had to get to this point after 10 days of putting Lucy through the ringer.  We are in a worse position than we were before and I have no clear answers from the doctors how they expect to transition her off of the tube.  I am very glad that she is able to hydrate on her own again and does not require an IV. At this point, I don't know if her stay in the hospital will be days or weeks long (I really doubt it will be weeks though...)

Checking out the view from her hospital room.

THANK YOU to everyone who has stepped up with phone calls, texts, offers to feed us, rides home for my mom, visits to the hospital and prayers for us this past week.  I could not have handled the situation without you all.  Having Jason across the world and trying to keep him in the loop has been tough and I know that he's having a tough time being so far away and out of contact with us for much of the day.

Lucy is doing really well now.  Her skin is healing nicely and she is happy to be free of her IV.  She is charming all the doctors with her cute little descriptions of the stoplights outside and their cool scrubs as well as her rockstar pigtails!  A silver lining to this situation is the incredibly sweet bedtime that her and I get to have in her hospital bed, where she tells me stories and describes her day and we giggle and play peekaboo until she finally falls asleep - despite a colostomy bad on her abdomen, an IV in her hand and seeming constant vital sign checks by the nurses.  Have I told you lately how much I love this little girl?

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.

THE FEEDING TUBE IS OUT!!! (and Esophagus Dilatation #19)

Outtake from 2-year pictures...so sweet!

Lucy's Feeding Tube is out.  The procedure went very well, as did her 19th dilatation.  We are going to move from 6 to 8 weeks between dilatations going forward, so that is great.

Pre-surgery car race in the hallways of Children's!

In case you are not familiar with Feeding Tube removal procedures, they do not stitch up the patient afterwards.  The thought is that the stomach and opening from the Feeding Tube button will heal up on its own after a few days.  Jason and I were drastically under-prepared for what this would mean.  The past 36 hours have been a blur of crying Lucy, major messes from a gaping hole in her stomach, laundry, more gauze and tape than I could ever count and a very emotional household.

I'll post more details about the procedure and aftermath later when I am able to have a more optimistic perspective.

Bottom Line:  Lucy is the strongest, bravest little girl I know and I tell her that countless times a day.  This too shall pass!  What does Romans 12:12 say?  "Be joyful in hope, patient in affliction, faithful in prayer."  this is a season for all three!