Friday, January 18, 2013

3 weeks- what does the future bring?

Some things take a little time to digest. And some things are easier to take when a detailed explanation/open dialogue is kept. I think that is true for any difficult situation you may encounter in life.

Yesterday, I was here at the hospital with Riley while the fellow and resident came in to check on her as they do every morning. The fellow had just left and we'd just gotten Riley back to a comfortable position when the resident popped in. She listened to Riley, checked her out and then proceeded to have a chat with me.

She first started talking about a g tube and the possibility that Riley would have/need one. Without pausing she then threw in the need for a tracheostomy. Pretty blunt, no explanation and just up and left the room. Ummmm okay. Thankfully, our nurse was in the room to witness this exchange and saw my look of defeat and disgust.

We chatted briefly about how we (Megan & Dave) would really prefer to have these discussions with both of us present and we'd prefer to have them with an attending who has been around our daughter versus the new resident who just hit the floor Monday and knows very little, except for what she has read, about our daughter's case. She agreed, handed me a box of tissues and I left to go call Dave.

To say I was fuming is an understatement and of course a call to Dave had him as riled up as I was. Dave was on his way to the hospital anyway so we were both anxious for rounds to start so we could address our concerns and ask some more questions. As Dave arrived rounds started and before they could even get in to Riley's updates our wonderful nurse made our requests clear and set the tone for the future.

After the review of Riley's case Dr. Tony (as he likes to be called) came in to the room pulled up the trash can and sat down to really talk to us. It was the dialogue we needed and the professionalism we'd expect from every doctor on this floor regardless of title. He apologized for the resident's basic overstepping and we talked about where we go from here for Miss Riley.

First is the G-tube.
A gastrostomy is a surgically created path through the abdominal wall into the stomach. A gastrostomy tube ("G-tube") is a gastric feeding tube, passed through a gastrostomy, designed for the administration of liquid nutrients, fluids, or medications. G-tubes are placed in children who are unable to orally consume enough calories to maintain adequate nutrition and growth or who are at risk for aspiration of oral feedings due to difficulty with oro-pharyngeal control, esophageal motility, and/or gastroesophageal reflux. [Sleigh: 2004]

Riley is gaining the ability to suck & swallow however, due to her age and route she'll be taking in recovering from her illness/brain injury she is going to need lots of nutrition. Nutrition that even with a suck/swallow ability she's going to have a difficult time keeping up with. A g tube will allow her to get the nutrition she needs and also allow us to monitor what she is getting. It will basically, look like a little button on her tummy and she won't need to be hooked up to it constantly, just when she is receiving feeds.
Our biggest concern was the permanence of this g tube. There is no real way to tell how long she will need it 1 month/6 months a year? Riley will dictate how long she has this little button and with time we will know more.

Next discussion was about a tracheostomy. Ughhh yeah.

A tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe). A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. This tube is called a tracheostomy tube or trach tube.

What we envisioned this being and what it really is are two very different things. Riley would need this to keep her airway open and clear secretions, not as an oxygen support. After rounds today and another discussion with another attending we are much more comfortable with this apparatus and the benefits it will provide for Riley IF needed. The thing about this is that Riley is still recovering from RSV/bronchiolitis. She's on a regular oxygen canula now and only at 2%. She has a TON of secretions and some she swallows most she spits up (which is good). We felt very strongly and the doctors agree, that making the call to put this in is premature. We truly don't know if she needs it but, if she does it will be okay.
Again, the same question was asked. Is this permanent? Nope. Will she need it for 1 month, 6 months? We just don't know. Positive for Riley is that she has tone, strength in her passageway and can breathe on room air so if this is placed it will most likely be temporary.
Dr. Hunt, the attending today, explained to us more about how to them (the doctors) this really isn't a big deal in the long term. Yes, to us it is but, they see these placed all the time to help children during their recoveries.

Ideally, they'd like to do both procedures at once. Only one round of anesthesia, risk for complications etc. Problem is and one thing we all agree on we know she needs the g tube but, no one feels comfortable making the tracheostomy call until Riley's respiratory illness is gone. So who knows. We'll talk more on Monday about whether they will proceed with the g tube and wait for the other or just wait to see about doing both.

We are still in the PICU but, our time here is getting short. Riley is on limited oxygen and really won't necessarily need to be on this floor much longer. I'm hoping we'll be able to stay here after the g tube procedure, she'll need to watched for a week, and not have to move to another floor. After we discharge from CHOC Riley will go to a pediatric sub acute rehabilitation facility before she goes home. We're really hoping to find one closer to home but, I'm fairly certain we'll end up at the one near by in Tustin. It has sub acute and acute services and will basically, be the next step in helping us transition her back home while also providing her with the PT/OT/ST she needs on a more intensive basis.

As I watch Riley sleeping right now I am feeling a sense of calm. Maybe it's because we believe in Riley so much that I know this will be a long journey but, one she'll tackle with extreme fight and feistyness. I believe all the prayers and good thoughts she's received are truly holding her up during this time and pushing her to do more and more each day. Before we began PT this morning Riley was raising her arm and trying to smack the nurse and vocalizing her frustrations with where she is and all the people that are touching/bugging her. She was fantastic during the time she was sitting up and her stats on paper just continue to get better each and every single day. She has shown us one new thing each day that proves that she is coming out of this little by little and won't give up.

We ended our chat with Dr. Tony yesterday with an open discussion about Miss Riley's future. He reminded us that her road is long and we really won't know her true outcome for at least a year. He also reminded us that if this had happened to any of the 4 adults in the room, we wouldn't even be here. He spoke to us about the cases he's seen in kids Riley's age and the amazing recoveries these kids have made because they were so young and their brains were able to heal and re route/program in order for them to live full normal lives. He assured us that a g tube and a tracheostomy were only going to be devices used to help Riley along this journey to recovery not hinder. He left us feeling at peace with the path Riley will be taking.

I hope that one day, we can return to this floor and thank each of the individuals who have been a part of Riley's care with a little girl that amazes them as much as she does us. No matter what disability she'll need to face and no matter what setbacks she'll have, we will take joy in each day we have with her and celebrate Riley for who she is. 3 weeks ago we didn't even think we would have that chance.

Dave, Megan, Logan, Mason & Courageous Riley!


  1. I cry with you every day and anxiously await your updates, which are most appreciated. Keep fighting, little Riley, and Mom and Dad, too. xxoo
    cindy c.

  2. She looks so sound much more peaceful like you said...your perspective is amazing. You have a very special girl on your unbelievable will to survive. This road and journey will undoubtedly be long but you all have shown so much got this!

  3. We think about you all everyday and are so happy Riley is on her way to coming home. PRAYERS as always for you and your family. Thanks for the updates.

  4. relatively new follower to your story. was just sent back here from another blog to pray for you. just wanted to mention that my daughter had the g-tube and it is nothing to be afraid of. the reason she needed it was much different. i started out as her foster mom. when I met her (at 4 months old) she had a gj tube..which was much more complicated. the g tube was a huge relief. so, I can at least comment for that not afriad! praying for your sweet girl and family. (before we adopted her, my daughter shared your daughter's name)