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Raya's Adventures at PCH: Chapters 1, 2 and 3 (Sun. 1-24-10)

(This is going to be very long because a lot happened and I need to write it all down so I won't forget anything. :)
What a crazy week this turned out to be! It all started on Thurs. the 14th when Raya saw the GI specialist. It turned out to be a very stressful appointment for 2 reasons: Stress #1. Because the appointment was on short notice, I had Cole & Kaida with me and Kaida had gotten up at 3:00 that morning & Cole had gotten up at 5, so they were bouncing off the walls trying to stay awake & were very grumpy. It's embarrassing when your kids aren't behaving and when the doctor has to say, "I need you to be quiet so I can talk to your mom for a minute, okay?" Stress #2. I had gone into that appointment expecting to hear something like, "Well, maybe her current medication isn't working, let's try something else instead." or something like that. What I heard instead was, "Your baby is very malnourished and underweight and I'm very concerned. I'm actually thinking about hospitalizing her right now." REALLY?!? She looked normal to me but as people at the hospital repeatedly pointed out to me, "She looks more like a 2 week old than a 2 month old." Yes, thanks for rubbing that in. :)
So instead of sending her to the hospital on Thursday, she modified Raya's feeding & medication dosage instructions and gave us until Monday to show some improvement. That, of course, didn't happen. She had a terrible weekend and by Monday had lost an ounce instead of gaining 3-4 like they wanted. The doctor called me back Monday evening at 8:30 and asked me to bring her in to Phoenix Children's Hospital for some urgent intervention. By that point I was coming to terms with the fact that my baby is really skinny and it's probably not a good thing to spit up 50% of what she eats, and because of how bad she had been over the weekend, I was actually relieved when she told me to take her to the hospital.
Since it was after hours, we had to go in through the ER which kind of grossed me out thinking of all the germs & sick kids that were there. Because the doctor had called ahead & told them we were coming, she had also told them not to make us stay in the ER any longer than we absolutely had to since Raya wasn't sick & we didn't want her catching anything. We were there for about 2 1/2 hours before we got up to our room, which wasn't too bad. :) They had to stick her in 3 different places (hand, foot & head) before they finally got the IV in but once she was done with that, she had worn herself out crying & went to sleep for a while. I think I finally got to lay down on my plastic pull-out couch around 2:30.
The transport lady came at 8:00 Tuesday morning to take her down for the ultrasound of her stomach. We had a whole herd of doctors in & out all morning asking me the same 75 questions over & over again. I guess they have to do that to make sure that your kid's problem isn't a result of abuse and/or neglect. Then I happened to overhear a conversation in the hallway between a doctor & a Peruvian med student where the doctor was trying to explain to the med student what head lice were so that the med student could tell him the Spanish word for head lice. I was so grossed out when they came in our room to talk to our roommate's mother about head lice & making sure that she checked the rest of her kids for them when they got home. SOOOOO GROSS!!! I was relieved when Pablo left.
All day Tuesday, Raya kept spitting up most of what she ate and was really fussy. That afternoon we went to radiology to have an upper GI where they gave her barium to drink and watched on the screen as it went down her throat, into her stomach, & started to move into her intestines. It was pretty cool to watch. The results of that showed "significant reflux and distension of the large bowel" which basically means she almost threw up the barium & had gas. :) The GI specialist told me later that barium weighs 13x as much as water and that Raya was able to reflux the barium clear up to about her collar bone. She was also concerned that 3 hours after the scan, Raya spit up barium which meant that her stomach hadn't emptied yet. On Wednesday, she was taken completely off of breast milk & put on Pregestimil formula, which is quite possibly the most foul smelling "food" on earth. It kind of smells like it's already been used once. :) She drank about 20 ml of it before she got a good taste of it and realized how nasty it was and then refused to drink anymore of it. That's when she got her NG tube to make sure that we could get all of it into her and hopefully get her to start gaining weight.
She kept the first 2 feeds down really well. Roomie #2 left and roomie #3 arrived after having her gallbladder removed. I think she was about 16 and her family & friends were quite the crew. I quickly lost count of how many times I heard the "s" word and no longer felt bad when Raya was fussy because at least it drowned out some of the profanity & discussion of underage drinking & teen pregnancy, which #3's mother was apparently okay with. I also learned some new Spanglish words that I'm pretty sure are at least PG-13.
We finally got to get rid of the IV Wednesday night, which she hated since the tape was stuck to her hair, but it was nice to have it gone. At 8:30 that night, we started her 3rd feed w/the NG tube and it started out ok but about 15 minutes into it, she started vomiting (which almost made me throw up b/c of the smell of the formula) so we had to stop, give her another dose of her medicine that she had thrown up, and wait 2 hours to start her feed over again. She was fussy for about 2 hours before I kind of reached my breaking point and turned her over to the night nurse for a while. She was kind enough to find a baby swing & take Raya out to the nurses' station for a while so I could take a shower. That was pretty gross too. I couldn't help but wonder as the water was rising in the shower, how much hair it must take to clog a drain that size. Eew.
That night I had a wonderful nurse & PCT (which is another name for a CNA) who kept Raya all night for me so I could get some sleep. Wednesday morning Raya's GI doctor came in to see her and was upset that she didn't have clothes on and it was freezing in our room. She also said that Raya had gained about an ounce since we had gotten there which was good but still too slow for us to think about leaving yet & she told me to plan on being there until the weekend. The lady from the play center brought Raya a couple of little crocheted hats and a blanket that turned out to be a pillowcase. :) She also brought me some word searches which was nice. I was getting tired of Jon & Kate + 8 reruns.
I love her little sleep smile! :)

Donny came for a visit that afternoon and brought Raya some pants & socks and a bigger blanket from home since the hospital ones were too easy for her to wiggle out of. She was happy to see him. :)

One of our nurses also brought in a little crib toy for her to look at which was a big help with her torticollis stretches.

For all of the feeds on Wednesday, we fed her as much as she would take from the bottle and then give her the rest through the NG tube. We also were happy for gallbladder girl when she was feeling well enough to go home that morning. Later that afternoon, we got our 4th roommate. He's an 8 year old boy with cancer and he just about broke my heart. More about that later.
She was fussy again Wednesday night but did pretty well with her overnight feeds. In the morning, she was too sleepy to drink all of it so she got about half through the tube. Dr. Tran came in to check on her & told me that although Raya was starting to gain weight, it was still a little too slowly for her to go home & that we'd probably be there a couple more days.
On Thursday, she took almost all of her feeds by mouth, which was great. She was also hardly spitting up at all at that point which was really strange for me. I'm not used to having a baby that doesn't spit up large quantities frequently. :)
I also found out Friday afternoon that the formula she's on (hopefully temporarily) is outrageously expensive. Long story short, it's about $550/month for the small amount she's drinking right now, which is more than we spend on food for the other 5 of us combined. I also had a visit with another one of the GI doctors that left a bad taste in my mouth, so Friday was kind of a downer for me. It also made me sad that my baby doesn't smell right anymore and I don't like how she smells at all. Donny made me laugh about that too though. When he came to visit that afternoon, he was holding Raya and we were discussing how bad the formula makes her smell. Out of nowhere, he just started singing "Smelly Cat" (the song Phoebe sings on Friends) to Raya and I couldn't stop laughing. For those of you who aren't familiar with the song, the words are "Smelly cat, smelly cat, what are they feeding you? Smelly cat, smelly cat, it's not your fault." Poor little Raya is Phoebe's smelly cat. :)
Things continued to go better as Friday evening went along. The nurses kept telling me how much they loved having Raya there because she was a "healthy" baby and we were on an oncology/nephrology floor with a lot of kids with long-term illnesses.
Saturday morning, one of the doctors from the GI group came in and told me that they were pleased with her improvements in weight gain & that as soon as I had been taught how to place the NG tube and home health could get me set up with all the equipment we'd need at home, he would be ready to discharge her. I was SOOOOOO excited and ready to get out of there.
She had a couple more feeds that day and had to use the tube for portions of both of them, so I was actually kind of relieved that they wanted to send us home with the tube just so I know we can make sure she gets what she's supposed to.
Auntie Brooke came to visit and brought me a delicious sandwich that broke up the monotony of hospital food. :)
A little while later, the nurse observed & coached me through changing Raya's feeding tube and the home health guy brought over the equipment we need in order to feed her w/ the tube at home if needed.
After that, we packed up everything that wasn't nailed down & headed for home. (I have since realized, however, that we forgot the roll of tape for taping the tube to her cheek. oops.)
We were greeted by the welcoming committee who had made cute little signs for us:
We are SOOOOO glad to be home! I took a nice long hot shower last night and used real shampoo & shaved my legs and slept in a real bed and it was WONDERFUL! I do, however, miss picking up the phone and ordering room service and having nurses handle the every-3-hours-around-the-clock feedings. :)


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