Busy, busy, busy…training and practice continue as Rudy keeps working on his feeds. His status was upgraded to “floor status” in the ICU which means the nurses check his vitals every few hours instead of every hour and leave most of the treatment care up to me (and Rolf when he comes over the weekend). Yet another step toward home…please pray he doesn’t spike any last minute fevers or develop any last minute infections. Rudy has one more day left on his antibiotics…when he finishes the cycle, they’ll be able to pull his subclavian line (the last line to go) and all other meds will be transitioned to oral doses. I’m praying an infection doesn’t pop up once he is off the antibiotics. He took a bottle for three of his feeds today…the rest were through his g-tube. Right now it takes him about an hour to finish a feeding…the team would like to get it down to 30 minutes ultimately. It’ll take a while for Rudy to learn to eat that quick – it’s an issue of conditioning at this point. So, there will be quite a bit of work to do at home to help Rudy reach many goals…gotta get to work on that “master list” of “to dos”. Old habits die hard!
Today was a great day…one of the only crisis-free visits we’ve had with Rudy and all the children together. There was no need to usher the kids out of the room because of an “episode”, no frank talks with Drs that left me wiping away tears so the kids wouldn’t see, no family meal in the cafeteria with Rolf and I sitting catatonic…
The kids and I got an early start from home and made it to UCLA at 10am. We found Rudy in Daddy’s lap just hanging out. Max quickly took Dad’s spot and held Rudy for a little bit and then all the children accompanied Dad to his CPR training. Like a good Girl Scout, Olivia was able to answer a number of Nurse Katie’s questions because of her “First Aid” training at a Brownie Troop Meeting this year! I tried to nurse Rudy while they were all out of the room but he wasn’t too interested so I ended up pumping and giving him a bottle. When everyone returned, we packed up the red wagon full of Rudy and his gear and headed to the peds patio…making sure we paraded through the CTICU on our way. It was a beautiful, sunny, breezy day here in L.A. and Rudy’s very first venture outside was a special one with everyone in tow. True to Rudy’s norm, he was asleep for a good big of this momentous occasion but woke up towards the end…
Check out Rudy’s first experience with a little breeze on his face and siblings playing in the background:
Take a look at Rudy’s entourage:
When we returned to Rudy’s room, Rolf and I had a few more “home care” lessons and the kids entertained themselves for a good bit conducting a teddy bear health clinic…
Wilson got his turn to hold Rudy for a bit and before we knew it the afternoon was gone and it was time to drop the kids off at dear friends’ for a couple of days of spring break fun!! Understandably, Rudy was pretty wiped out and had a good nap while we packed up to go. Rolf dropped me off back at the hospital around 9:30pm, said another goodbye to Rudy, and then headed home to Santa Barbara…I’ll stay with Rudy until Wednesday, pick up the kids and we’ll all head home as well to spend the last half of spring break at home – celebrating Wilson’s 12th birthday and making more preparations for Rudy’s homecoming. It was a whirlwind day full of excitement and adrenaline…I think it was quite encouraging for the children to see Rudy doing well and to hear the nurses and docs talk about his discharge. It’s starting to sink in for all of us -Amazing!
I’ve had a running joke with the team here that I’m one day hoping to earn a “Junior Doctor” patch. Well, it looks like that’s coming true as Rudy’s room has become kind of like camp. There is a number of things we need to demonstrate competency at before Rudy can go home and, consistent with her temperament, Trish has asked for a list to be compiled which is now posted on the closet door. This weekend Nurse Lindsey is walking us through the day and every time we successfully perform something she notes it on the chart. Sometimes she quizzes us and we even get to practice some things on a very creepy looking doll before we move to Rudy. So far, I’ve received merit badges for trach tie changing, trach suctioning, dispensing meds through the G-tube, G-tube cleaning and securing the pediatrician. Tomorrow morning, I’ll hopefully earn my CPR badge–leave it to me to make this a competition, but I guess I’ve always been motivated by sticker charts.
Since I mentioned her, I just need to say that Nurse Lindsey is the GREATEST NURSE IN THE WORLD! Yeah, she’s highly trained and very skilled at providing acute care for patients who need it. Really grateful for that, but she wins this approbation for stopping at Starbucks on her way in this morning to bring me some coffee. Instead of needing to stumble down into Westwood myself, I got to start my day lounging around in my PJs with Rudy here in the room. Florence Nightingale never did that!
While there’s all this activity to keep me occupied and entertained, Rudy’s impressing us all with the great strides he’s making. We turned off the feeds for an hour twice yesterday and let him try to take the 30cc by bottle–success! Today the team decided to try to compress the feeds to move from constant drips to “bolus” feeds–where it all comes in one shorter burst (as it would in a meal). We were going to proceed incrementally by spreading 90cc over two hours and then to one and try a bit by bottle every now and again, but on the first feed this morning we put 45cc in a bottle which Rudy devoured. So, we filled another bottle and he pretty much gave his vote with regard to proceeding incrementally. It was no fluke–he’s done it twice more, so the order was re-written for Rudy to make the call–he can feed 90cc by bottle every 3 hours, but if he’s sleeping or just doesn’t seem to feel like it, we can put the balance in the G tube. He would appear to have his father’s feeding habits.
On the down side, I’ve re-discovered what I had forgotten over the last six years: all that food going in has to come out in some form and a diaper’s seal far from impenetrable. Full breast-milk feeds have resulted in technicolor emissions that register in multiple dimensions. His brothers will marvel at the sounds and I regret that I only brought one pair of pants with me…
It is a very happy adjustment to be thinking concretely about bringing Rudy home. There’s some open speculation as to what our time frame is at this point, but I suspect we’ll gain some clarity on this on Monday when the new attending comes on. I’ve been reflecting on the post I wrote awhile back on the Stockdale Paradox and how our thinking has undergone a shift. Back in January, we had to hold forth that we would prevail over this circumstance without any real idea of how this would come about. I’m certain I didn’t think we’d be headed into April, but here we are. There were twists and turns enough to turn unrealistic hope into insanity, but here we are. Given that we’ve been here six months, we’re not up in arms if it extends a few weeks more. It’s just such an encouragement to be viewing things through a new lens.
I’m looking forward to a quiet night here with Rudy and hope he rests well for tomorrow when Trish and the kids will be coming for a visit. It’s actually been almost two months since we’ve all been here together. Word has gotten out among the staff that the floorshow will be here in full force tomorrow–can’t wait. These poor ICU people–who will entertain them when we leave?
PS–speaking of fun, Livy made another appearance on the web as Greg Lawler shared everyone’s intrigue about how her trademark “green tooth” dangled precariously without falling out for so long. Good news everyone–it finally “fell” out (with a little help from Daddy during a wrestling session).
I made it home safely this afternoon but before I left UCLA, Rudy and I had a little bottle-time. He continues to do well with the sucking and swallowing but the big adjustment for him is tolerating any volume more than 1 oz at a time in his stomach. Because he is on continual feeds getting 1 oz. a hour, he isn’t used to getting larger volumes all at once. He’ll continue to get bottle feeds intermittently to allow him to practice oral feeds but he will also continue to get feeds through his g-tube. One reason for this is to help conserve Rudy’s energy before his next surgery. Oral feeds require more energy making his heart work harder so, for now, the g-tube will remain.
The jp-tube, however, was removed today! After 24 hours on breastmilk, there continued to be no drainage from the stomach cavity into the tube so we were able to say goodbye to another line and potential source of infection. The next and last line to be removed is Rudy’s sub-clavian picc through which he is getting his meds. Gradually, they’ll transition Rudy’s IV meds to oral meds (or in Rudy’s case, through his g-tube) so they can remove that line before we go home.
Speaking of “goodbyes”, RT J-Way, Nurse Sam and I kissed the vent goodbye late last night! His breathing continues to be strong and steady. PTL!
Rolf will head down tomorrow to spend the weekend with Rudy…the kids and I will join them late Sunday or early Monday. The kids are excited about Rudy’s progress and all our talk of bringing him home. We’re all excited but also not quite believing it’s true!!! It’s all a little hard to comprehend.
Check out our super star today…he took to a bottle of breastmilk with great ease and showed-off for OT Nicole how he can down 15ccs (=1/2 ounce) in 2 minutes!! Ha Ha Rudy reached the goal of full feeds (30ccs/hr) around 3am…they started him on breastmilk this morning at 11:00am and as of 9:00pm there hasn’t been any fluid drainage…they’ll want to watch it close for 24 hours but so far so good! Today is also Rudy’s first full 24 hours on the trach collar and he’ll stay off the vent indefinitely at this point. I think it’s kind of interesting that he reached both target goals on the same day! Break out those beads!!!
As for me, well, my day was rather full. I was trained in CPR for an infant with a trach and in the daily trach cleaning process as well as the cleaning of the g-tube AND I changed out Rudy’s trach for the first time (something we’ll have to do at home once a week). It all went smoothly. All of Rudy’s care will be time consuming, at first, but doable. My biggest concern in bringing him home, at this point, is keeping him infection-free between now and his Glenn surgery…don’t be surprised if you see our family walking around with travel-size bottles of hand sanitizer hanging from our necks! 🙂 Rudy’s room was one continuous string of folks coming in to talk to me about all kinds of treatment details. We’ve only just begun this discharge process and already there is too much information to process and retain but like we’ve done from the very start of this journey we just need to take it ONE DAY AT A TIME.
Rudy and I got to say our first “goodbye” today to Dr. Rick. He will be gone the next two weeks and he came in to say goodbye at the end of the day because, as he said, he hopes we’ll be gone when he gets back. Ha Of course, we’ll see him soon enough at our follow-up appointments for which we’ll need to come back but it was nice to say an official goodbye nonetheless…another step closer to home.
Speaking of home, I hope to get an early start for SB tomorrow as I’d like to stop at WalMart on the way to get a crib mattress and sheet for the little lad. Rolf will come for his normal weekend shift with Rudy and then the kids and I will come to LA for a couple of days early next week for the start of their spring break. We might get to take Rudy outside for the first time (on the peds patio on our floor) on Monday if I can get it coordinated with the nursing staff and folks over at Child Life. Please pray the logistics of that outing will come together…it sure would be a special moment to share together as a family. The first of many, many shared moments to come, we pray!! Lovin’ you all from Rudy’s room…
Trish just called with an update so I’m putting up a quick post. Rudy has been at full feeds (30cc) since 3am and everything continues to go well. So, in the next hour they are going to switch him over to breast milk. We know now that his stomache can process at the volume it needs to, now we need to know if it can process fats without there being any chylous fluid coming out of his lymph system. The JP drain is still in, but probably won’t last much longer, so the plan is to start milk in the next hour and see what comes out of the drain–please pray for NOTHING!
Hooray! Hooray! The little superstar passed his swallow test!! It was really quite remarkable to watch the images on the flouroscope…you could tell right away that the contrast fluid was going down the way it’s supposed to. Speech therapist Carol conducted the test and gave Rudy the contrast through a syringe at first, halfway through the test she said, “He’s really sucking on this syringe, I’m going to try a bottle”. The minute she gave him the bottle, he latched onto it like a pro and drank from it with no problem. The whole thing brought me to tears. OT Nichole came down to watch as well and we gave each other a big hug in celebration of Rudy clearing yet another really big hurdle. Like I told Dr. Rick when we returned from radiology, it’s just so nice to have a definitive, no-doubt-about-it, POSITIVE result where Rudy is concerned! Everyone who heard the news was quite excited for Rudy and his BIG step toward home.
There was alot of talk about discharge details today so that certainly added to the excitement. We’re still a couple of weeks away from bringing Rudy home (at least) but it is helpful to get started on the many details that need to be addressed. I go to CPR class tomorrow morning and get trained to do CPR on babies with a trach. Rolf and I both need to practice suctioning Rudy’s trach and learn how to change the trach completely as that will need to be done each week. We’ll need to learn how to care for and administer feeds through his g-tube, etc. We need to find Rudy doctors up in SB and start getting things settled for him at home. Wow, there are so many things to think about right now!!
I tried to put aside the rush of details in my head this afternoon and focus on a little sucking therapy for Rudy. He is clear to start the non-nutritive sucking therapy so we tried it for the first time. I brought him to the breast after pumping empty (he’s not allowed to ingest the breastmilk yet) and let him “find his way”. It’s definitely a new feeling for him and I’m not too sure what he thought of the whole thing but he did finally relax and got comfortable sucking. He isn’t quite latching on securely but he’ll get there…it’ll take some practice and I think he’ll be more motivated to latch on when he’s allowed to drink the milk while nursing. So fun and crazy!!! One of the charge nurses said she has never seen a baby as sick or as intubated as long as Rudy do so well at the swallow test or take so quickly to nursing…our prayers are being answered.
So, the process continues forward…Rudy is currently at 28ccs/hr on his feeds through the g-tube. They’ll, most likely, introduce breastmilk tomorrow and it could take a couple of days to see if the chylous fluid will return. If it does return, he’ll go back on the Tolerex formula and I’ll look more closely at what it will take to skim my milk of it’s fat. If it doesn’t return, then we can get rid of the Tolerex finally start using the MEGA-supply of mama’s milk we have stashed away in the unit! Rudy will spend a total of 22 hours off the vent today which means they will bump it up to 24 hours tomorrow!!! At that point, he’ll stay off the vent and they’ll monitor him closely for a couple of days before declaring him “vent free”. Other than that, he has a couple of meds they need to start weaning him off of and the surgical team will remove his “frankenstien stitches” early next week. Things are falling into place…finally!
We’ll never know what tomorrow is going to bring but it sure is wonderful to end a day with Rudy with a strong sense of hope for a brighter tomorrow.