I have found that keeping busy with some sort of project in Rudy’s room keeps me from obsessing over Rudy’s numbers and “hiccups” from minute to minute. As a result, I was able to get Rudy’s birth announcements out in October…our Christmas cards in December and this month’s project has been to compile a binder of “Rudy’s Beat”. Today is our 16th week with Rudy at UCLA and I spent part of the day skimming previous entries as I arranged them in the binder…an amazing trip down memory lane in the midst of a chapter that is still being written!
Rudy had a good day…like yesterday, he rested soundly for most of the day and looked real comfortable. It was a full day in that we had a number of consultations with doctors in various fields to help determine our next steps. Today’s focus was infection. After Monday’s struggle, a number of cultures were sent for testing and they came back positive for infection…so far infection was found in his urine, in his ET tube (bacteria that has been present around the tube for some time) and also in his picc line. They started antibiotics yesterday which have helped already. The challenge is addressing the bacterial infection in his picc line. Normally the choice would be to simply remove it and put another line in somewhere else. Unfortunately, the nurse practitioner who puts the lines in for Rudy has been unsuccessful in getting a line in some other place…there just isn’t any more access. There was talk of attempting to put another line in surgically but I think the plan now is to try to salvage the one he has for the time being. We are still waiting for the results of an additional test to determine if the bacterial infection is isolated in the picc line or if it’s in his blood. So, feeding is still on hold until the infections are cleared up.
Thankfully, none of this has interrupted the weaning process. Rudy started the day at 14bpm and is now down to 10bpm with a pressure support of 10!!! If he holds steady with these settings tonight, then he’ll start sprinting again tomorrow. We are so close to getting off the vent…the closest we’ve been so far, at least.
Although Rudy isn’t getting feeds to his stomach, adjustments have been made to his nutrition through the TPN he gets in his picc line…the reduction of glucose seems to have helped Rudy’s ability to breath easier already and that’s encouraging. Since the plan is to not feed him until the bacteria issue is resolved, the stomach contrast test and the insertion of the NJ tube to his intestines has been put on hold. Rudy decided he was done with his feeding tube through the nose this morning and pulled it out himself! Not a big deal since it wasn’t being used for feeds anyway but Dr. Lee replaced it with and OG (oral gastric) tube through his mouth which is currently helping to vent his stomach and get rid of all the extra air that was causing his stomach to balloon quite a bit. As a result, his stomach looks much smaller and feels much softer which must feel more comfortable to Rudy!
All in all, we’re in a good place respirtory-wise and the infections are treatable so I’m encouraged and optimistic! We had a super time cuddling this afternoon and we’ll get another chance to cuddle tonight in front of a movie…Dr. Sonal brought us “Stardust”. Happy 16-week birthday big boy!!!
13 thoughts on “Happy 16-Week Birthday!”
wow! i can’t believe he pulled the line out himself! i guess Rudy is taking matters into his own hands. 🙂 glad to read that he is holding steady and closer than ever to getting off the vent. enjoy your cuddle time.
R & T,
Just found your blog through Laurie E-M-L (sounds like a vision test) Facebook post. I didnt know you two were going through so much. But, I smell academy award–Tom Hanks as Rudy (wait, wrong movie), Bryan C as producer, Doug P. video, R & T writers…
Reading about the bears on the famous pumps, I remembered this song, “Teddy Bears Picnic” (http://en.wikipedia.org/wiki/Teddy_Bears'_Picnic)
Good Free iPhone game is “Pathways”. Good chair sale at La-Z-Boy on Pico/Sepulveda and a 103″ tv at Ken Cranes.
Rudy, we will pray for your infections and all your needs as always. Hang in there, we know you are getting closer to doing so many new things on your own. Love your new photos today, your hair looks soft and fluffy, I would love to pet your soft hair, have your mommy do that for me.
Hugs kisses and love to you and your family.
NOthing like taking matters into your own hands, Rudy! Nice sow of independence! Just remember to be respectful of all your caregivers!! Keep up te good progress on breathing as we pray for the infections to be cleared up. Love to all
Pulling out his feeding tube is a sign of a strong will! Go Rudy! We love you all and keep praying.
What a big boy you are Rudy!!! Sitting up all proud! We’re proud of you too… keep on sprinting to that goal!
Wow! your mumsy has so many numbers and technical-sounding medical words in her vocabulary now, she sounds like a doctor herself! One smart mumsy you have, there!
Have a great day and another great cuddle with your mom!
Happy 4 months Rudy !!
Love from Kentucky !
Rolf, Trish & family,
Congrats on Rudy’s 16 Weeks!! I love his hairdo. So cute!!!
Love, kisses and hugs!
God bless you and stay strong!
Rudy, you look awesome in red…my favorite color! Ahhh and your personality is coming out too…getting rid of that tube. I think you are feeling better. Praise the Lord! In Jesus name we ask those infections be gone! Thank you Lord for continued improvement. God is so good! Oh Trish give Rudy an extra hug for me. One of these days I want to cuddle him so bad. It will happen. Love to all!
Im praying for rudy to reach his goal off the vent !
Wow – talk about some bed head! Trish, let me know if I can send you my never-sent Christmas cards to write, or some tax fprms to work on. We’re always glad to do anything to support you and make your life easier! Cuz we love all of you!
So happy to see such bright beautiful eyes. Love you lots please keep up the good work little man. We are praying for you. Love the Chessmar’s
Wow, Little One!! Happy Four Month Old Birthday! And you are getting soooo BIG!! wow!! I am so excited to hear of your progress, Babykins. Rudy, stay strong and healthy, honey. You’re going to be rid of one major piece of equipment soon…I just KNOW it!!! Getting rid of that vent will be such a HUGE milestone for you!
Lots of love and prayers!!