In the hospital (Days 3 & 4)

Hey everyone.  Sorry I didn't get a chance to blog yesterday but when I go through the list of events, you'll know why.

I came home to take a shower and a nap and I'm in bed waiting for my Tylenol PM to kick in.  I don't need it because I'm not tired ...... I'm pretty darn tired, but my mind won't stop working.  So hopefully typing all this out will help that.  And I apologize beforehand for any typos or anything I write that doesn't make sense .... I'm on not much sleep and much stress. 

So anyway, yesterday morning when Jeff and I got to the hospital Leah looked incredibly unhappy.  She had the NG tube in, with her tie contraption keeping it in place.  It looked goopy, dirty and uncomfortable so we cut the tie off and that seemed to calm her down a bit - but not completely.  Rounds were done and I talked to the docs ........ by the time I got back in the room she was back to being totally pissed off.  We asked for some Tylenol for her.  Our nurse came in (Adrianne - who is also our nurse today and we had her back in July and we love her - she's awesome) to check the placement of the tube before pushing the Tylenol through and when she went to draw the air back out of the tube, blood came with it.   So that's why Leah was unhappy, the tube was making her bleed inside and the blood was collecting in her tummy.

The nurse went to tell a doc and Jeff and I stood there with Leah, watching her cry, fuss and have a look on her face that was beyond pitiful.  We knew she was bleeding and why ........ so without permission, and before anyone could stop us, we took the tube out. 

It didn't calm her down completely because she still had the blood in her stomach making her nauseous - and we had just pulled the pesky NG tube all the way out again but eventually, she calmed down and I think in the end Adrianne forgave us.  : )

Somewhere around that time, the docs from pediatric dentistry came around to see us.  They were great -  they knew exactly what was going on, how JEB can affect the teeth, and knew before seeing her that some teeth may have to come out and if so, they'll do it when the G tube is being put in so everything gets done at once.  So they looked at her and we all talked, and sure enough some teeth will be getting pulled.

After the NG was out, the docs from GI came around.  They were not great.  They said they'd want to do an upper GI exam and put the NG tube back down to make sure Leah could tolerate different amounts of formula.  Jeff and I still had the blood-tinged NG tube sitting there and we tried using it as a visual aid and kept repeating that we did NOT want that tube going back down her throat.  The docs kept repeating that that is the only way to make sure a G tube could be placed.  Oh, and that the earliest her G tube could be placed is next Wednesday. 

I could see we weren't getting anywhere so I bit my tongue and decided to save my energy for another battle that I could possibly win.

So that was that ......... for awhile .......... until our beloved ENT surgeon, Dr. Preciado came to check on Leah.  Praise God for Dr. P.  He really just wanted to check the status of Leah's trach area - which he said looks great - but then I told him about what happened with the NG tube and how GI wanted to put it back down and how Leah wouldn't get a G tube for another week.  Dr. P knows first-hand what Leah's throat looks like inside.  So that, with my plea, and the urgency in my voice made him join us on our side of the battle.  He shook his head and said "Nothing should be going down her throat ...... that NG is not going in again".  Now, while Dr. P doesn't really have anything to do with Leah for this admittance to the hospital; he has a lot of pull at Children's - so I knew that was one problem solved.

So as it is now, Leah has no NG tube, and no IV because of the state of her skin.  Her teeth are making it so she won't suck a bottle or binky, and from the several NG episodes, her throat hurts too much at times to swallow.  So we are feeding Leah by dropping formula or Pedialyte from a 3 or 5 ml syringe into her mouth.  I feel like a Mama bird feeding her baby chicks.  It's so sad and cute at the same time.  She loves that she doesn't have to suck but it takes 30 minutes to give her 2 oz of liquid.  And with the droplet-feeding style, inevitably some dribbles out so it's impossible to get a read on what she's really taking in.  But yesterday when we discovered that this is the only way to feed her, she went through four 2 oz bottles of Pedialyte over the course of 2 hours.  That made the docs say that we could continue with no IV and no NG tube, but we'd have to keep feeding her, droplet style - as she wants it. 

So Jeff and I both stayed at the hospital last night so someone was always up to see if Leah looked willing to drink.  I only slept from 4:30 AM ish to 6:15 AM ish.  And last night around 7 I drove all the way home to pick up Leah's formula (since she's such a picky eater and that's all she really likes), our Haberman feeder (just to try - it didn't work) and some snacks for Jeff and I - and then turned right back around and drove back to the hospital.

A little bit after midnight last night a doc from the surgery team came by to talk about the possibility of one of the docs from his group placing the G tube.  I decided to take advantage of the fact that a.) he's most likely not a decision-making guy ... since it was 12:30 AM and he's alone, in Leah's room just trying to get information - b.) Leah was NOT very happy at the time .... her teeth and throat were so bad she wouldn't even close her mouth - and c.) I was there, looking tired, concerned and a wee bit upset.  (For about 30 minutes before he came in I'd had my head next to Leah's, gently rubbing her head and whispering prayers in her ear - crying for about half the time because of how much pain she was in).  So I took out the 'concerned mother of a special needs child that has a disease this guy knows nothing about' card and played it.

 

I explained everything; how her skin on the outside and the tissue on the inside can be affected in the same way.  What the NG tube did.  How her teeth need to come out ASAP.  How she can't or won't swallow sometimes so I can't even know that her Tylenol is going down.  How she needs her G tube for nutrition and hydration because EB kids can get dehydrated sooo fast.  How she can't have an IV because of her skin so I can't ask for any strong pain relief.  

So those facts that I reeled off without missing a beat, my pale sad face, and Leah's pitiful state planted the much needed seed of: this G tube and teeth pulling thing needs to happen and it needs to happen now.

After he left the room I literally winked at Leah and said 'There ya go kiddo'. 

Sure enough when our main doc came in early this morning to talk to us, the game plan had changed to: just an upper GI as a pre-op procedure and most likely surgery tomorrow to place the G tube and pull the teeth.

The upper GI got cancelled this morning .... I never really got a reason why but I really don't care - if they did it at a time when Leah wouldn't want to swallow then what's the friggin point?  But anyway - one less thing to worry about.  

This morning we gave Leah a bath and did her bandages -- so she's much more comfy and smells alot better.  Awesome nurse Adrianne hooked us up on the bath -- she cleaned the entire tub, found a tub liner, taped it to the tub for us, and then made up Leah's bed all comfy cozy while Jeff and I were crouched on the bathroom floor trying to soak and cut off Leah's bandages. 

When I arrived home today I called Jeff to let him know and he said someone from surgery had come in with the consent form for him to sign and told him that the surgery will happen sometimes between 8 AM and 12 tomorrow morning.

So ............... please please PLEASE (I don't mean to yell - that's more of an urgency capitalization) be in prayer for Leah tonight and tomorrow.  Tonight for her to continue to take her drops of liquid and have some amount of comfort and peace .... and for tomorrow for her surgeries to go off without any problems.

Thanks everyone for their prayers, love and support!!!!!

P.S. And thanks to whoever it was exactly in Jeffs group of friends who wanted to come by the hospital to see Leah.  (Erik I know you called but I don't know who else was in on the plan). You guys are super sweet and I know Leah would love visitors but because we are on the Respiratory Care Unit and the whole H1N1 thing is still going on, they are limiting visitors to parents, grandparents and caregivers.  I just wanted to explain that because I know Jeff didn't know why I said you guys couldn't come - it's the hospitals rule - not mine.