Wow! I can’t even begin to express how grateful I am for all the love and best wishes sent my way today. I’m totally overwhelmed by the number of phone messages, texts, emails, Facebook messages, blog comments, cards and gifts from friends and family near and far not to mention all the wonderful face-to-face well wishes from the staff at the hospital! I may not be able to return everyone’s greetings but you must know that I received them all and deeply appreciate every one!!! Thank you…thank you! I’m so grateful
There were a number of things that made today special…it started out with Rudy and is ending with the others all cozy on the couch. In the midst of all the activity I was honored to visit our old neighbor in the CTICU. Rolf and I were touched daily by this precious little girl who fought so hard in the room next to Rudy’s for the past 7 weeks. We saw the dedication of a loving foster family and the CTICU staff that filled her life with love and tenderness. Her precious life on earth ended today and as I walked back to Rudy’s room after saying “goodbye”, I felt so honored to have witnessed this little life…she deeply touched the lives that came in contact with her – I’m so glad I was one of them. I spent the rest of the morning holding Rudy – tight – we looked at each other for a bit until he feel fast asleep. I was so grateful
OT Nichole came for a little therapy and Nurses Barbara and Missi prepared him for some exercises off the vent completely! The weaning began early this afternoon with an hour-long stint with the trach collar and he tolerated it well…another one hour stint was scheduled for this evening and so on!!! He’s doing great. Rolf and Max will head down to L.A. tomorrow in time for the first attempt at feeds through the g-tube! Of course, we’re very anxious to see how it goes.
For now, though, our focus is on Wilson, Max and Olivia as we enjoy a rare movie night together as a family. Freaky Friday is tonight’s movie choice…come to think of it, today was a bit “freaky” but, on many levels, a true gift of grace and love!
P.S. Thanks for the gift of a good laugh today Rolf! Speaking of the 80s, don’t be surprised if the classic college video production of “Rolf: Man, Myth or Mongoloid” gets mysteriously distributed worldwide!!!!
While it’s not the celebration we envisioned (but then neither have most holidays of late), our family sure is excited about Trish’s birthday. As Trish does a pretty good job keeping vanity at bay, she didn’t let on that one of the highlights this week was a birthday makeover. There’s a kind organization that comes into the hospital to take portraits of kids and their mommies, so Trish got to join in the fun! The final result is stunning!
She told me that our plans for the weekend have changed. Tonight she wants to sit on her bed, eat Pop Rocks and gaze longingly at her Karate Kid poster while listening to Sheena Easton 8 tracks. She’ll need to get some rest because she was a troublemaker and has to spend all Saturday in the school library with Emilio, Molly, Ally, Judd and Anthony so that they can achieve teenage enlightenment and discover that they, as middle class suburban white kids, are remarkably all the same (who would have guessed?)
OK, that wasn’t the picture. Here’s the one from this week’s makeover:
About three times the years, but ten times the HOT! My birthday princess is looking fine!
While I’m posting and boasting, Wilson had a great week as well representing La Patera Elementary at the County Spelling Bee. His goal was to make it past the first round as he missed the cut last year, and he was successful. About 150 started and he finished somewhere among the final 20. As we didn’t have a lot of time to study, our strategy included preparation in some of the terms that have become part of our family vernacular but would likely elude the common elementary speller. Unfortunately the gambit failed as “hypoplastic”, “cardiothoracic”, “pleurodesis”, and “fundoplication” were not on the word list. Too bad, Wilson was going to nail those!
Yesterday was so lazy that I forgot to post an update so here’s an early morning recap for you…
Rudy is doing really well post-op…he continued to get some pain meds yesterday and had one pretty fussy spell in the a.m. but was awake most of the afternoon – alert and calm. So nice to see!!!! Everything was cancelled yesterday…no OT, PT or RTs. The pediatric surgical team came in to check Rudy’s in incision and dressings. The only real action for Rudy yesterday was various nurse friends stopping in to say “hi” and the constant (mind ripping out) chime of the vent because of Rudy’s trach leak. I think we first mentioned this a couple of weeks ago so keep in mind this has been going on FOR A COUPLE OF WEEKS. With all the amazing, miraculous things they do in this unit, being able to adjust the vent to accomodate the trach leak isn’t one of them!! Ha Ha
So, today the plan is to start taking baby steps…they’ve come down a little on Rudy’s oxygen support and will attempt short sessions off the vent today. He’ll get a little exercise today and I’ll get to hold him a bit before I head home to SB for the weekend. They’ve already begun administering some meds through the g-tube and will begin feeds through it tomorrow!!!! Of course, they will start VERY slowly but it will be great to get started. Rolf and Max will be here over the weekend to cheer Rudy on in the feeding game along with the staff so he’ll have great support!!! I’ll share more later…Nurse Jennifer just brought me a beautiful, homemade birthday cake!!! It’s time for a little “birthday cake” breakfast 🙂
I think these pics sum up our day pretty well…Rudy remains sleepy and calm with the help of some pretty heavy doses of pain meds. He woke up a few times for a quick photo op here and there, would wiggle and squirm uncomfortably for a few minutes and then fall back to sleep. The team has been quite attentive checking in on him regularly. Everyone from Dr. Brian to Dr. Rick to the GI specialists to the peds surgeons have all warned us that the introduction to feeds will be veeeerrrrrryyyyy slow. The process may require a couple of starts and stops and then starts again…it may require going up even more on the vent support before it can be dialed back down, etc. I appreciate the warning and the reminder that such “hiccups” shouldn’t be seen as setbacks but as part of the process. It’s a relief to have this surgery behind us making this next phase of waiting a little easier for now. Once again, Rudy has proven himself a tough nut to crack!!! Thank you for covering him in prayer today…and eveyday!
The precious one is back safe from the OR. The pediatric surgical team member who accompanied Rudy back from surgery said he did great…was well-behaved (apparently Rudy has quite the reputation for being a trouble-maker) and the procedures went as planned. He has a bandaged incision going from the bottom of his open heart scar down to right above his belly button…so at least it’s all very neat and linear! 🙂 The feeding tube was placed just to the left of his scar and extends out about 8 inches. Right now, of course, he is knocked out (dreaming about something) and resting. We’ll have to wait a day or two to start the feeds into his stomach through the g tube so although the surgery went well, we won’t know for sure if all the plumbing will work properly for a few days. He’s back to having no tubes in his nose…no tubes in his mouth…and looking very handsome! I’ll post pics later today!!! God is good…all the time. Love to you all from Rudy’s room.
I woke up in a daze and haven’t talked to anyone in charge yet but the night nurse said Rudy was scheduled for 8:30 am and would transport to the OR at 8am!! He should be leaving in just a few minutes! I’m confident Rudy will be safe through surgery but there is a pretty heavy cloud of doubt hanging over my heart this morning that the “fix” to his stomach will actually get him past the feeding challenges…my doubt isn’t based on anything specific other than past disappointments probably…
Years ago, Rolf and I attended this little storefront church in South Central L.A. where the African American pastor would preach his entire sermon in English and then AGAIN in Spanish! It made for a long church service but he was so amazing and I remember one service where he repeated “nunca dura” (not sure if I’m remembering my Spanish correctly but you get the point) over and over again. “No (never, none) doubt”…”No doubt”…he passionately proclaimed. Funny how, 15 years later, this simple message from an inner city storefront preacher comes to mind as a helpful reminder – God is in control no matter the outcome.
I’ll let you know when he is back to the room and settled! Thank you for your loving prayers…
Rudy started out the day agitated, feverish and breathing hard but he ended up sleeping a good bit of the afternoon in my lap so the day of rest and cuddles I had hoped for ended up coming to pass. There really isn’t much to report…Rudy made another attempt off the vent and on the trach collar this afternoon but only tolerated it for about 15 minutes. It’s a bit discouraging to have to make up ground in the weaning process again but I shouldn’t be surprised. It seems that for every day the next surgery is delayed we lose a few days. My prayer tonight is that his surgery WILL happen tomorrow, will be successful and will allow Rudy to fly through the next milestone of feeding and digesting!!! It’s starting to feel critical that we get him home and settled before his next open heart surgery which is why impatience is starting to set in, I think. Oh, may I continue to trust in God’s timing and may Rudy’s body continue to heal!!! Bless you friends…
Today has felt like a few days wrapped into one…quite a bit going on from a fun lunch with friends in Santa Barbara to a surprise dinner party with friends in L.A. in celebration of the birthday I’m going to ignore later this week. In between it all there was sweet Rudy facing a couple of challenges. As Rolf reported earlier, Rudy’s surgery was postponed again until Wednesday. The attempt off the vent didn’t go so well so he was put back on pressure support with the plan to dial it back and wean slowly. Rolf held Rudy until I arrived around 3pm. When he was transferred back to the bed, Nurse Samantha detected right away that his groin line fell out making quite a bloody mess. Frustrating – because it’s a line into his vein that is quite necessary for administering his meds and TPN (nutrition) and Rudy is notorious for making the placement of such lines VERY difficult. Nurse Practitioner Anita and Dr. Lee worked hard at finding new access but, ultimately, Dr. Rick placed a new sub-clavian line…it’s location could be problematic in the future for his open heart surgeries but, like always, we trust the veins will remain open and clear and we’ll cross that bridge when we come to it. Rudy was cleaned up and settled by 9:30pm and I’m just know settling in myself at midnight. The plan for Rudy tomorrow is to lay low, exercise off the vent, maybe get some physical therapy and cuddle!
I remember talking with Dr. Rick many weeks ago after a particularly tough day for Rudy and as we talked over Rudy at his bedside, Rudy yawned and Dr. Rick said “a distressed baby doesn’t yawn”. Tonight, Dr. Rick and I were, once again, talking about the day’s events at the bedside when Rudy yawned a big, relaxed yawn. I chuckled and reminded Dr. Rick of his past observation and he replied “there was enough stress in the room today – Rudy didn’t need to join in”. Dr. Rick sure has a soft spot for Rudy…and vice versa. May tomorrow be a day FULL of relaxed yawns and big, full breaths. Thank you for your continued prayers…
Yesterday evening, as the ICU and surgery teams were working out their schedules, they ended up taking Rudy off the list as they had to prioritize other cases. They would work to add him in if there were any cancellations, but I found it tough to hope and pray for that as surgeries like this don’t usually get cancelled because the patients heal themselves. As crazy as we are about our own little patient, we need to keep in view that this is a hospital full of sick kids and the team has to make choices. A member of the surgery team just came in about an hour ago to tell me personally that it wasn’t going to be today. So, right now Rudy is the second case on Wednesday.
As the team rounded today, Dr. Rick decided to do something about the vent as Rudy got put back on late last week so that he’d be fit for surgery Friday and then continued on in case it would happen today. So, we’ve been dialing things around a bit to give him some exercise. After five days on support, taking him off cold turkey was a bit too much, so now we have him on pressure support only and he’s been sitting on my lap for about four hours peacefully napping or studying his surroundings.
Trish is on the way down so we can switch up this afternoon.
Again a pretty calm day here with very little to report. Livy and I enjoyed our weekend together and we were especially encouraged by a number of visitors. Rudy has been very calm today and his numbers look good. While he had a little fussy spell this morning (what baby doesn’t), he’s settled down for the rest of it so we haven’t messed with him much. At some point this afternoon, we must have shifted his position a bit because the nurses and I have now gotten a taste for the recurring vent alarm that made Trish contemplate making an adjustment to the machine with a shotgun.
Livy and I had a fun time hanging out with Rudy. She took a break from playing with nurses to play in the hospital playroom and we enjoyed two meals at her favorite place (Socko’s Subs). While we were planning on driving back together about now, as the plan for Monday isn’t clear, I’m staying around for at least the evening (if not the night). So, our friends Bob and Janet were kind enough to take along a weepy passenger on their way back to SB from Oceanside.
As it stands now, Rudy is on the surgery schedule for 10am tomorrow (Monday). No infection has presented itself so right now there’s nothing in his condition that is changing plans. Perhaps one of the other cases they mentioned to us will still show up to bump us from the schedule, but as far as Dr. Lee could determine, he’s on the schedule so until we hear different that’s the plan. If surgery’s on, I’ll stick around and we’ll be keeping you posted in any case.