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?