…Today was truly Rudy’s day o’ rest! His little body finally stopped kicking long enough to realize it was tired and he slept, slept, slept. When he was awake, he was quiet and calm. His little eyes were glazed over and he looked tired but he wasn’t agitated at all. He did spike another 104 degree fever early this morning which was concerning to the team during the a.m. rounds but thankfully he was fever-free the rest of today. So, today the team left him alone, allowed him to rest and continued waiting for the cultures to come back. One variable that we know for sure is that Rudy has c-diff…a bacteria in the gut that we all have but is normally controlled by other bacteria. Rudy, however, has been on antibiotics that have killed off the other bacteria so Rudy has been battling a terrible case of loose stools brought on by the c-diff running rampant. It could also account for the temps, etc. but we need to wait for the cultures to come back to know for sure. If the cultures come back negative, then they’ll take Rudy off the IV antibiotics and we can begin the vent wean and work toward getting Rudy home again. If the cultures come back positive, then Rudy will have to stay in the hospital until the full course of IV antibiotics is complete. We’ll know tomorrow or Saturday.
In the meantime, we spent some time today inventing toys for Rudy. Sadly, the MATTEL Children’s Hospital (emphasis on MATTEL) has a shortage of toys. We needed something to occupy Rudy’s little hands as he was using them to tug at his tummy-IV port and his vent tube. Nurse Sara came for a visit and made him a syringe rattle and I constructed his “tube handle”. Both seem to satisfy his need to hold something without the threat of disconnecting anything.
He’s a funny, little boy with funny, little toys but he’s pretty endearing. He has driven Dr. Andy a little crazy this week but I think Dr. Andy will agree that you can’t help but love him. I’ll head home to SB sometime tomorrow and Rolf will take his shift over the weekend. Hopefully, we’ll be looking at a discharge early next week. Thank you for your prayers this week…
A week ago tonight, we were waiting in the ER hoping for the green light to go home…well, we’re still here at UCLA and today was a tough day. After the episode early this morning, we waited a good bit of the morning for an xray to help determine the next step. The xray did show some fluid in the lungs…not quite pneumonia but something to address nonetheless. Dr. Andy wanted to get a picc line in him to get Lasix directly into his vascular system and dry up those lungs but Nurse Anita who puts the picc lines in just wasn’t willing to attempt another picc line in Rudy as she has not had any success with him the last several tries (I don’t blame her). The alternative was to put a peripheral IV line in but that, too, is not easy to do on Rudy. Dr. Andy did it himself and ended up putting an IV in one of the prominent veins in Rudy’s stomach area…not a typical place for an IV but it worked. The only drawback is that it is well within Rudy’s reach and he grabbed onto it with his killer grip and almost pulled it out! As a result, Nurse Sam had to wrap his torso in netting so he couldn’t grab onto it anymore. If it weren’t for his buddha-belly physique, he’d look like a member of the “Village People” with his fishnet tank. He finally settled down about an hour ago after a full day of restlessness and discomfort. We were all pretty concerned around 4pm this afternoon when his fever spiked to 104 degrees…he was seriously uncomfortable at that point and Nurse Sam had him packed in ice from head to toe. His fever finally broke and he fell asleep soon after.
Dr. Andy is pretty certain he is battling an infection and ordered a couple of antibiotics as a precaution until the cultures come back. No matter what it is, it’s clear Rudy’s body fought hard against it all day today and so I pray tonight he is able to sleep soundly and rest up…he sure deserves it. I love this little boy.
…very sad! We were so close to going home but at 5am this morning Rudy took a turn for the worse and we are back where we were last week. He spiked a high fever, battled a heart rate over 220 for a few hours (It’s currently at 203), was put back on the ventilator and we are now waiting for word from Dr. Andy whether or not we can attempt another picc line (Did I mention I’m sad?). The hardest part is watching him fuss for so long…he hasn’t slept in hours even with the help of Tylenol and 2 methadone rescue doses. Saint, I mean, Nurse Sam and I gave Rudy a bath which helped calm him a little bit but he’s still pretty restless. Most likely he caught another virus bug but we’ll have to wait 2-3 days for the cultures to come back to be sure. So, we wait. Please pray for the kids today…they were sweet and agreeable yesterday but I’m afraid today’s news could be discouraging (I know it is for Mommy and Daddy…we’re sad). I’m very grateful for Drs. Andy, Sonal, Mary and Nurse Sam today…if we have to stay, I’m glad we’re in good hands. I’ll update again later today…
As the big kids headed off to school this morning, Wilson looked back at me, gave me a wave and said “Bye Mom, we’ll see you when we see you”. Eventhough everyone was disappointed Rudy didn’t come home with Daddy yesterday and I had to return to Los Angeles, all were agreeable and well-adjusted this morning. -Good kids.
By the time I got to UCLA, Rudy was breathing room air. Dr. Andy wants to observe Rudy for 24 hours without oxygen before making plans to discharge him. As of early this afternoon, the plan was to send Rudy home tomorrow morning after rounds. Rudy did have a few bouts with low sats throughout the day and then this evening, his sats stayed in the 30s consistently for over 12 minutes!! He had to be put back on oxygen and is now resting with sats in the low 60s with 30% oxygen. I’m not quite sure what this means for our plans to discharge tomorrow…I’ll keep you posted and publish an update in the morning with our plan for the day. It goes without saying that I hope the gang at home sees us sooner rather than later! 🙂
When Trish told me she went ahead and bought an extended parking pass here at UCLA last week, I wondered whether it would be cost-effective. Well, turns out it was as we’re going to be here a bit longer. Rudy’s o2 sats have continued to be low throughout the day and he hasn’t been able to wean off of oxygen. The culprit is atelectasis, a fancy word for a kind of partial collapse in his lung. Not as scary as it sounds, but it really would be best to send him home breathing room air (21% O2), he’s at 30% right now.
The best theory I’ve heard for the pathology of this is that he very likely had some kind of virus (indicated by high fever) which ran it’s course but left him needing to recover his respiratory function. Dr. Mary said that the average baby is sick 40-50% of their first year with some kind of bug or another, but since Rudy is a bit compromised they can upset his system more than normal kids. In addition, the trach doesn’t allow him to maintain pressure in his lungs like the rest of us can, so this can cause some of those small passages in the lungs to close down. But all of them need to be working to bring sufficient oxygen into the blood.
The good news is that Rudy doesn’t appear to need a major intervention (like the vent) to push air in. He does get regular breathing treatments and suctioning, but the key treatment is known as “Chest PT–Q3”. Bypassing all of the sophisticated technology and highly trained people here in the ICU, Chest PT is essentially the act of playing the bongos on Rudy’s chest and back for five minutes every three hours to loosen up his lungs. I politely listened while Nurse Carlin gave me my orientation and was pleased with how quickly I caught on–there’s even a rubber percussive thingy I can use if I want to change up the sound. Rudy actually really likes it and just lays back and closes his eyes while I thump around. So far there isn’t a written policy about impersonating Ricky Ricardo, but if I keep it up it may fast become a guideline. So, this is how we will combat our newest foe: Atelectasis, you have met your match–Babaloo!!!!
It’s just past 9PM on Monday and I’ll give Rudy his night bottle and then make the drive home in order to change assignments with Trish. Please pray that we’ll get over this hiccup and be back together at home again soon.
“Life may not be the party we hoped for, but while we’re here we should dance.”
We’ve shared before about how this journey with HLHS thrusts us into ironies, dichotomies, and couplings of things one normally wouldn’t put together. On Saturday evening, this included the surreal experience of wearing black-tie attire in the PICU. Our dapper appearance strayed from the usual dress code of the parent tribe (jeans, sweats and t-shirts with unkempt hair and glazed over eyes). Dressing in the little PICU bathroom in Rudy’s room proved a challenge…the only full-length mirrors are inside of the elevator doors so we weren’t quite sure how “put together” we looked until we were on our way out the door.
What was the occasion? We were invited to attend Gala del Sol; a benefit for “Camp del Corazon”. Camp del Corazon is a camp founded by one of the cardiologists here at UCLA, Dr. Kevin Shannon, that provides year-round opportunities for children with heart disease. You may have heard of this camp if you’re an “ER” fan as it was highlighted in one of the last episodes in March. We first heard about the camp when nurse Fay popped into Rudy’s room back in October and told us to put the summer of 2015 on our calendar. When we asked why, she said “because that is when Rudy will be old enough to go to camp”. 🙂 Many of Rudy’s doctors and nurses donate their time staffing the camps each year. Only recently has it sunk in that Rudy’s condition will likely limit the things we’ll permit him to do in life. As much as we might want him to have adventures, realistically we’re not sure how comfortable we would be sending him some place without access to skilled medical care. Well imagine a camp staffed by the top nurses and cardiologists in the world–where no kid with heart disease has ever had to pay to attend. Where kids with limitations don’t sit out.
Saturday’s Gala was particularly special as our favorite surgeon, Dr. Brian, was recognized as the 2009 Medical Honoree. That alone was reason to be there. It’s not lost on us that we can say “this man saved our son’s life” without any tint of hyperbole. We were priviledged to be involved with Rudy in the tribute video and so thrilled to meet Brian and Noel’s extended family (who, we were humbled to learn, are followers of Rudy’s Beat). Originally, Rudy was supposed to be in attendance and we feared that his current setback would shelve that plan for all of us. But with Rudy’s condition improved yesterday, the docs and nurses back at the hospital encouraged us to attend. Rudy, after all, was in good hands. So, with the older kids settled at home in SB with one of their favorite friends (thanks Nina), with Rudy safe in the PICU with special company (thanks Pammy), we decked ourselves out in a tux and “little black dress” and headed off to Universal Studios for the big event.
We enjoyed the hospitality of Nurse Aliza and her family and were pleased to see Rayme and Brett (Logan’s mom and dad) again–who we haven’t seen since his discharge in November! Just as stunned as our doctor and nurse friends were to see us dressed to the nines, it was a change to see them in something other than scrubs and white coats. The evening gave a hopeful vision for Rudy’s future which served to renew our energy for the journey ahead. One of the most compelling moments was a camper video in which a precious 9 year old girl and her mother told of the 25 surgeries she’s had and how they live fully aware that life can be unexpectedly interrupted–or come to an abrupt end–because of her condition. It was impossible not to hold back the tears as the camera followed her dancing around the house with her sisters. Amidst the blond tresses flying about, she jumped close up to the camera and screamed out “I LOVE LIVING!!!!!”
We don’t often get to put on clothes like we did last night, but what stays with us is the new array of emotions that are becoming part of us: We wish HLHS never struck us, but we are so glad for these talented, loving guides. We wish our son didn’t have this limitation on his life, but we saw kids whose lives have fullness of their own unique kind. We don’t ever lose sight of the severity of Rudy’s condition, but see that life still holds grounds for celebration. It might not be the party we hoped for, but we’ll figure out how to dance here.
Our recent slideshows have been a topic of discussion with the nurses over the weekend and several weren’t aware of their existence. I think they are now as I subsequently heard familiar music playing and then had to deal with weepy nurses. So they don’t get buried under the subsequent posts, I’ve put a thumbnail in the right column that will take you right to Greg’s page. They get even better on the 4th and 5th viewing!