We started Good Friday with some early morning playtime before the older kids headed off to school.  Rudy was sure mesmerized by his older brothers.  All in all we had a good day although we did have a bit of a scare early this afternoon.  Feeling a little “house rot” today, Rolf and I ran a couple of errands together and when I lifted Rudy out of his car seat when we returned home, he didn’t look right to me.  His eyes were somewhat rolled back and he was very labored in his breathing.  We got him inside and suctioned him…when that didn’t work, we changed out his trach and suctioned him again…that didn’t help either so I took him to the pediatrician right away while Rolf waited for the others to get home from school.  I was pretty nervous driving over to the drs office and wondered if the better call would be to go straight to the ER…I wasn’t sure.  He was working hard to breathe but wasn’t blue so I stuck to the plan to get to Dr. Abbott’s.  His office was expecting us and got us into a room right away.  I felt a little ridiculous as I burst into tears when his nurse came in to check his temperature.  She was sweet to reassure me that he was going to be okay…Dr. Abbott came in shortly after and checked him out thoroughly.  As is the norm with Rudy, it wasn’t clear what was wrong.   His oxygen sats were good, for Rudy, and there didn’t appear to be any kind of obstruction in his airway.  He did, however, have a decent fever so we gave him Tylenol and a cold compress treatment and waited…Rudy started to calm down about 20 minutes later.  At that point, he was an hour late for his methadone dose and a feeding so it was hard to know if he was struggling or just agitated.  There wasn’t an obvious reason for the fever so the plan is to watch him closely over the weekend and if another fever spikes causing respiratory concerns, we’ll need to go to the ER here in town.  I asked Dr. Abbott if we were right to come in or if we overreacted and he said, “No, you were right to come in.  I was very concerned about how he looked when I saw him initially but he’s a different little boy now”.  I don’t know if I’ll ever get used to the sudden twists in Rudy’s condition but that is part of “life with Rudy”, I guess.  Rudy has been sleeping soundly since we got back home…he is tuckered out!  ‘Praying the fever was a fluke and not the start of a bug of some kind…we sure don’t want his body to have the added stress of having to fight something off.  I’m praying for continued peace as well because I sure don’t want to “live in fear” of what may happen in the future.  Today rattled my confidence a bit but I’m hoping a good night’s sleep will cure what ails me!   🙂

Once again, it’s hard to believe another little chick is another year older!  It was a full day for Wilson with school and a good bit of homework this afternoon but we enjoyed a yummy home-cooked meal (Wilson’s request) together, a trip to Carvel ice cream for dessert (I stayed home with a sleeping Rudy), and Wilson had fun opening gifts from family and friends…he really enjoyed being remembered.  Happy Birthday Wilson…you make us so very proud!!

Rudy had another good day here at home.  We’re tickled pink we’ve made it 48 hours without having to go back to the hospital.  Both Rolf and I feared we’d end up having to go back for some reason but…so far, so good!  I mentioned earlier that he is sleeping well through the night and we certainly pray that trend continues.  He has also had fairly regular success at eating his full daytime feeds from the bottle!  In the hospital, he would down about half of his feed and then we’d have to put the rest through the feeding tube but several times since we’ve been home, Rudy his finished the entire bottle in less than 40 minutes which is his time limit…that is VERY encouraging to me.  We had our first pediatrician’s appt. today and it was comforting to have a professional look Rudy over and confirm that he is doing well.  Dr. D. Abbott spent a good bit of time with us and was very thorough going through each detail of Rudy’s discharge summary.  The bottom line is we have a number of specialists we need to make contact with in the coming weeks.  Although we have follow-up appts set with doctors down at UCLA, we are going to try to get appts set up with specialists here in town as we’ll need to establish relationships with these doctors long-term anyway.  The trick will be to get appointments set up in the next couple of weeks…if time is an issue, then we always have the UCLA appointments to fall back on.  Rudy will need a follow-up with an ENT doc for his trach, a GI doc for his g-tube, Dr. of endocrinology for his low thyroid function, Dr. of immunology because of his weakened immune system and a pediatric eye doctor for what we hope will be just a one-time visit – there is concern about Rudy’s tendancy to look toward the left and not track consistently AND, of course, he’ll have his on-going relationship with his cardiologist.  So, I’m praying we end up in good hands on all fronts as it seems there will be many of them!

Thankful for a quiet day…and thankful for you!   Thank you for all the wonderful comments on the blog and emails!  You are dear to share in our joy and celebration…

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.