Monday, May 4, 2009

Lazy Days

Update on Sunday, May 3 and Monday, May 4, 2009 - Sunday was an exciting day for Elle and myself. Lee and I woke up and spent the morning with Elle. She promptly fell back asleep in her boppy. I just love that little belly!! She did wake up when her occupational therapist, Julia, came by. She took 11 cc by bottle! I am so proud of a few ccs at a time!! My parents came up around 11am and Lee and I were able to leave the hospital for a few hours. I was a nervous wreck leaving Elle. My dad finally demanded us to get out or else we would never leave! It was my first time to leave the hospital since we moved to the 15th floor on April 23. I had so many things to cross of my to do list while my parents were with Elle. Instead, I got home and fell asleep! Like mother like daughter! It was nice to sleep in my own bed - even if it was just for a few hours. We got back to the hospital and my parents and Lee's parents were with our little Elle. She had a bow in her hair and looked just like Pebbles from The Flintstones! Elle had a great Sunday with all her grandparents! Monday was not as laid back as Sunday was. At 8:00am this morning, our nurse came in and told me that Elle was going down for a swallow study. Julia had felt confident enough to order the study based on her 11 cc. Ann, our nurse, told me that they were coming in 15 minutes to get us. I rushed to get Elle's nose suctioned so she could breathe during the study. Of course, I rushed to get it finished and then the transport didn't come for another hour. They let me carry Elle down to Radiology for the swallow study. I was allowed to stay in the room for the study. It was so cool to watch! Anna, one of Elle's occupational therapist was with us. They put a wedge made out of towels on the table and then propped Elle up on her side so her head was a little elevated. There was a Speech Pathologist, Becky, who was there to evaluate Elle's ability to swallow. Becky filled three different bottles with Barium and then they started the swallow study. I watched on a tv screen as Anna fed Elle and could see the Elle suck on the bottle and the barium go down her throat and into her stomach. It was so cool and Elle did great! They tried each of the three different bottles and Elle did great with all three. She took a total of 14 cc of barium...probably because she hadn't eaten since 2am and was starving. Becky said that Elle's swallowing was great and based on that swallow study, there is no liquids going into her lungs - so she isn't aspirating. When Anna handed Elle back to me, her face was covered in white barium. It was hilarious! She had her first barium mustache! The picture doesn't do the mustache justice! We got back up to the room around 10:30am and Elle was able to start eating again. We had just settled in when the cardiologist made their rounds. They said that surgery was tentatively set for Wednesday. She should have a room in the CVICU. We have a new attending cardiologist for the next few weeks. I have no idea how to spell his name - Dr. S something. He was nice and wrote the orders to Elle to be taken off the pulse ox machine she was on just as a precaution. He told me that we aren't going home with the machine so we need to start getting accustomed to looking at Elle instead of watching a machine. We were only using the pulse ox when we suctioned and at night. Tonight will be our first night for her to be totally off the monitor. After the cardiologist left, Dr. Wesson, the pediatric surgeon came in. We talked about the g-button and the procedure. He explained what he is going to do and how the tube will work. He was such a nice man and I feel so comfortable about the procedure now. She will have a tube coming out of her stomach for about a month and then after that, the long tube will be taken out and the button will be put in. He said Wednesday is set for her surgery - maybe sometime mid day. Who knows though!! I will believe it when we take her down for surgery. Dr. Wesson left and Anna came back in for another feeding session with Elle. She took 5 cc this time. It was during this feeding that Anna told me that when they had done a chest x-ray on Elle before the swallow study the radiologist had noticed that the PICC that Elle still has in her arm had backed up into her neck. Evidently it is pretty common. Anna left and about 30 minutes later, the transport team came back to take Elle back to radiology to move the PICC. I was able to hold her and walk her back down. The radiology team took her and I had to wait outside - the procedure only took about 15 minutes. They basically flushed the PICC with saline to get it to move back into place. It moved back into place but the radiologist don't think it will last much longer - so the sooner Elle has her surgery the better. The only reason it is still in her arm is so the surgeons have a central line for surgery. We finally got back into our room around 4:00pm and our nurse told me that they were increasing Elle's feeds to 75 cc. It was such a long day! We are praying that things stay "staus quo" until Wednesday and she will be able to have the surgery for the feeding tube!


mrsrubly said...

i hope her PICC remains free of everything and stays put until the surgery. she is just so stinkin adorable. sendin up prayers for all of ya'll. glad you got some rest. i bet you walked back in feeling very refreshed! take care. and god bless you

oleyfriends said...


I found your blog and wondered if you had heard of the Oley Foundation yet.

We offer free information and peer support for families like yours with a member on home tube or IV feeding. Check out our website at

In particular you might be interested in the

• Tube Feeding Tips page

• Meet Patients Section (try all three links)

• Oley's annual conference -- where you can learn a lot about tube and IV feeding and meet other families facing similar challenges. Preliminary details are posted now, but keep checking for updates at
There are travel scholarships for first time attendees.

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY