Our week of spring break is quickly coming to a close…it has gone by way too fast but it has been fun.  Our string of family birthday celebrations continued today with Wilson’s party.  His 12th birthday is next week and we had fun exploring the nearby caves of Lizard’s Mouth and playing games here at home with three of his friends from school.   As chaotic as life is, we were able to pull off some of our usual creativity in celebrating our kids–me with cool survival treat bags and Rolf in his ability to throw together 2 totally-cool outdoor boy adventure activities less than one hour before the guests arrived.  Boy is it fun to celebrate our kids together!

In addition to preparing for Wilson’s party, Rolf and I continued to make preparations here at home for Rudy’s homecoming.  It’s still unclear what kind of timeline we’re talking about as we have heard different views from various individuals but I think it boils down to the feelings of the next PICU attending physician who will start on Monday.  Rolf will head down early tomorrow (Sat.) morning and, hopefully, get a better idea of where we stand.  It may be necessary for us both to be at UCLA a couple of days this week to “prove” we are capable of taking care of Rudy before they’ll okay him for discharge.  It is really tempting to get a little uptight about the details of this discharge so we’re praying for grace and trust in God’s timing of it all…it would just make things so much easier for our family if we could have a specific plan in place. 

Rudy is certainly doing his part as he continues to feed!  Today he took an entire feed orally…100ccs in about 50 minutes.  The goal is for him to be able to consume 100ccs in 30 minutes but the fact he was able to take the 100ccs from a bottle this morning (regardless of how long it took) is very encouraging.  They have already run out of my milk so when I’m not there, Rudy gets formula.  Rolf will take a stash of the frozen milk we have here at home tomorrow so Rudy will be supplied again until I get there on Monday.  Many of you have asked how long Rudy will need the feeding tube and we’re just not sure at this point.  Because he is able to feed orally, it seems pretty clear that the g-tube will be a temporary need.  It would be premature, however, to remove it at this point because although Rudy is taking a bottle, he isn’t consistent and we need to make sure he is getting a full 24+ ounces a day.  He still isn’t very interested in nursing but I’ve decided not to push it.  There are too many distractions at the hospital and I’m just not relaxed there…I’ll try again when we get Rudy home and we can sit (where it is quiet and comfortable) and take our time.  My milk production, however, is starting to wane so I’m praying for renewed vigor in that department…there is just so much going on mentally and physically I’m having a hard time keeping up. 

Rudy is also doing great off the vent…as far as we know there aren’t any concerns there.  He hasn’t had a chest xray in a while but he sounds clear after his trach is suctioned and he has developed a nice, strong cough which means he is able to clear his lungs himself…another sign he is getting stronger.  His trach is also a temporary aid.  I’m not sure when they’ll wean him off the trach but because it is another potential source of infection, Dr. Brian would prefer that wean happen sooner rather than later…maybe even before his next open heart surgery.  We’ll see…

I guess that’s all to report tonight.  Rolf will be able to share more specifics tomorrow once he’s at Rudy’s bedside!  We promised ourselves at the start of the new year that we weren’t going to place our hopes on getting Rudy home from one holiday to the next but it sure would be wonderful if we could celebrate Easter with Rudy at home in Santa Barbara!!!!!  Ahhhh, may it be so…thank you all for your continued prayers!!!

Today is April 1st and we have been at UCLA for exactly half a year.  I think about where we were at this moment 6 months ago… Rolf and I were going into the NICU to see Rudy for the first time since his birth 6 hours earlier.  He was intubated and sedated, sleeping peacefully next to his new teddy bear.  I remember thinking how precious it was that his nurse put matching I.D. anklets on Rudy and his bear.  He was a perfect pink and his body was untouched.  I’m so glad Rolf and I had no idea what was to come…I sure wouldn’t want to relive the past 6 months but I am thankful for where it all has brought us today…on the verge of bringing Rudy home.  The miracle of his homecoming is within reach and we are READY.  As I mentioned yesterday, please pray that no new infection (or bug of any kind) will develop as that would put any plan to discharge Rudy on hold.  It would also be helpful to us if an actual plan for discharge can be established.  There are differing views among the team of doctors following Rudy’s treatment about the specifics of his discharge so we pray for a definitive plan…of course, we hope it is sooner rather than later if it’s safe for Rudy.  There is certainly a fair amount of fear and apprehension about bringing him home and taking over all his care on our own, but the positives in having him home far outweigh any insecurity we may feel…the reality is an extra week or two in the hospital won’t make me feel any more prepared or ready for the road ahead.  My heart and mind are ready to get started on the adjustments here at home  Go, Rudy, Go…you’ve come so far already – you’re almost home!

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.

     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.

I don’t have much to report this evening as the swallow test was rescheduled for tomorrow at 11am.  ‘A little disappointing only because I’ve been waiting soooo long to get going on this non-nutritive therapy but it’s not a big deal to wait another day.  What this means, though, is that they are going to keep Rudy at his current setting of 27 ccs/hr, they’ll have to stop his feeds tomorrow morning before the swallow test, and then we’ll pick up on the feeds at 27ccs/hr again after the test…we may not get to 30ccs tomorrow afterall but, again, hopefully it will be a short wait. 

Other than the disappointment of the short delay on the swallow test, today was uneventful.  RT Oscar was assigned Rudy today which was fun as we hadn’t seen him in a few weeks.  Nurse Sandy made me laugh out loud when she came back after lunch sporting a gorgeous 3 diamond ring a little freaked-out…it belonged to another nurse friend of hers and Sandy tried it on for fun while they ate lunch together.  Her friend suddenly got paged to go down to the OR and left in a hurry WITHOUT her ring!!!  Nurse Sandy was so nervous she was going to lose her friends ring she ended up taping it to her finger…what a hoot!!!!  The ring was returned at the end of the shift and Sandy was definitely relieved!! 🙂