Tuesday PM Update

It is 8:00pm on Tuesday night.  It has been an exhausting day.  Maya only had one hour long nap in the stroller today.  She just refused to give in.  She fell asleep an hour ago.  Luckily, the child life specialist was available to watch her, after she fell asleep while I went and got our clothes out of the dryer.  They have a patient/family laundry room, that has 2 washers and dryers and they were full, so I wanted to be sure I didn't tie anyone else up.  The biggest necessity in the wash today was Maya's favorite froggy blanket, that our friend June actually gave to Brianna for her birthday.  Maya just loves sleeping on it.  Yes on it, not under nor with it.  

So today, we had a consult with the speech pathologist, who determined that they needed to do a barium swallow study on Maya to determine exactly what consistency her beverages/ food needed to be in order for her not to aspirate them into her lungs.  (in lay man's terms, without them going down the wrong pipes)  

For the barium study, they had Maya sit in a carseat looking type seat, that was surrounding by xray equipment, so it gave the feeling of being in an enclosure with an open top, bottom and front.  Then, they brought out some different foods that had been mixed with the powdered barium.  (The purpose of the barium is to be able to watch the food/drinks on the xray while she swallows them to see which pipe it goes down)  They started with milk, that had been mixed to honey thickness using baby rice cereal.  She aspirated that.  Then they gave her some chocolate pudding, which she thoroughly enjoyed, and didn't want to stop eating.  She did not aspirate that.  Then it was baby banana food, which she aspirated.  Then they gave her some cream of wheat with granola, which she did not aspirate.  So in the end they told me that she could not have any foods that were thinner than pudding consistency.  I think they should have followed that statement with... until we determine a plan of action, which is what they meant but didn't state.  My reaction to that was that it was unacceptable to just feed my child foods that were thicker than pudding!  So they clarified that the "team" would meet to determine the plan of action.

In the meantime, Maya and I went back up to her room, then we went and put a load of clothes into the laundry, the soap dispenser ate my quarter and produced no soap, but some nice mother, who I overheard talking on the cell phone that her child's transplant was probably not successful, loaned me some soap.  Then Maya and I went back up to the room and ordered her food voucher for dinner.  This was something I only just learned about on day 6 in the hospital.  Apparently, instead of ordering food from the menu to be delivered to your child's room for them, you can instead order a food voucher, which is a $7.50 voucher that can be used in the cafeteria.  Had we known earlier, it would have saved us some hassle.  Anyway, so we took our voucher and went back to the laundry, after I got so excited to see that CVS had just got the new trash magazines in, and they were kind enough to give us more quarters.  We were fortunate, to arrive and find one of the two dryers unoccupied.  After laundry was switched, we headed to the cafe with the voucher.  Maya ate great, she longingly looked at my glass of ice water, and I felt somewhat guilty drinking it in front of her.  She pointed once, and I had to tell her no.  We were just finishing dinner, when I got a call on my cell phone from the floor nurse asking where we were and that the Surgeon was waiting to talk with me.  (only 1/2 hr ago, the same RN told me he was in a lengthy emergency surgery and wouldn't be free until tomorrow, which was why I had left.)  Maya got to finish the last bits of bananas and we briskly walked back to the floor.

The Surgeon and the RN practitioner for the floor shared with me that he had spoken with three ENTs, and the speech team, and that they feel that Maya has paresis, vs. paralysis of her left vocal cord.  They said paresis is temporary, where paralysis is not.  I asked how they determined that, and he shared it was b/c her vocal cord moved slightly vs. not at all.   He then shared that what needed to occur, was that Maya needed to have a feeding tube placed in her nose, so that we could give her proper hydration at home.  Yes, she is going to be leaving with a feeding tube that we will need to work.  The Surgeon said that he believed that the vocal cord will improve in a matter of weeks, although the Dr. yesterday said could be up to one year.  I will have to ferret out why the big disparity tomorrow.  They will show Chris and I how to work the feeding tube tomorrow, as well as install it.  The RN practitioner wanted to install it tonight, but I refused.  Maya was exhausted, as was I, and I was not in the mood to be shoving tubes down her nose at 8/9pm at night after a long day.  The Surgeon agreed.  The plan for tonight is to hook her up to some IV fluids via her IV in her neck, which is still good.  They are currently waiting for her to fall asleep (10pm now).

I had a nice surprise as I was beginning to write this blog entry, Chris and Brianna showed up.  Chris had gone back home today to get Brianna, and to take her to her Taekwondo class, as she needed some normalcy.  Brianna and Maya were very happy to see each other.  Maya even gave Brianna a hug.  Brianna did a Jedi Mind Trick on me, and got a vanilla pudding and graham crackers from the patient food center.  Maya and I rode the elevator down with Chris and  Brianna, and Maya started to cry when they left.

So I am exhausted, and still need to do some research before tomorrow.  Thank you all again for your thoughts and prayers. Love Victoria