We end this beautiful Easter Sunday with the three older chicks nestled in their beds and the littlest chick nestled on Daddy’s lap. We celebrate our Risen Lord today so thankful for the presence of hope in our lives because of His sacrifice…
We had a good weekend. Rolf and the boys gave some much-needed attention to our yard yesterday afternoon and it felt good to get some chores done that are long past due. Rolf and the kids went to an outdoor Easter service this morning while Rudy and I celebrated at home. We enjoyed a low-key afternoon and our first grilled steak dinner of the season with a good friend this evening. Rolf loved being home on a weekend for a change and I love that I’m not scurrying around this evening getting my bags packed for another week at the hospital. Rudy is doing well…no fever since Friday and very calm when his tummy is full and his diaper is dry…we’ve experienced a good dose of “normal” this weekend and it does the soul good. Wilson gave his first bottle to Rudy, Max changed his first diaper and Olivia is quick to supply Rudy with many kisses so eventhough we’re all challenged at times with the many adjustments we’re making, love for Rudy by all is quite evident. ‘Wishing you love and peace this evening! Happy Easter…
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…
In between getting settled here at home, we’ve been working on a couple slideshows to document Rudy’s journey and all the people who played a part in it. But Greg, being much more tech savvy (ya think?), got his discharge day slideshow up and posted today. So grateful to have such a record of a day we’ll never forget.
I’m not sure words can adequately express what the past few days have been like…as a result, Rolf and I have been putting together a couple of slideshows that we will post soon that we feel capture a bit of what our hearts are experiencing. As expected, having Rudy home has been a big adjustment but in a real positive way. He has actually slept through the night the two nights he has been at home…so we’re not as sleep deprived as one would expect!!!! He gets his last meds at 12 midnight which is when Rolf puts him on the feeding pump (the pump feeds him continually throughout the night) until 6am when we take him off the pump and give him his 6am meds. So that gives us 6 hours of solid sleep which isn’t bad! Ha Ha
I’ve spent the past two days trying to find a place for everything…what WAS a very organized changing table with neatly placed diapers and wipes has been cleared off to house all of Rudy’s medical supplies and equipment. For now Rudy has a corner of our room so until I find a good storage spot for everything our room looks more like a medical supply warehouse than a bedroom. His crib is warm and cozy, though, and he seems to like it alot.
The kids are sweet with him and visibly excited to have him home but they are sensitive to give him space and not overwhelm him. I’m not as nervous as I thought I’d be in caring for Rudy but, I admit, I’m not too eager to leave the security of our home. Rudy has his first pediatrician appt. this afternoon so that will be our first outing. I’m still trying to get a handle on his schedule…He feeds every 3 hours, he has a total of 13 meds he takes at different intervals throughout the day and we have to make sure we get his trach and g-tube cleaning/care done each day. It feels pretty non-stop at this point but I’m sure it will all become second nature and we’ll settle into a nice routine…there will be a day when drawing his meds, alone, won’t take me 20 minutes!
So, we continue to take life one day at a time…praying for wisdom, discernment and AN ABUNDANCE of GRACE as we all let down a bit after the adrenaline rush of the past 6 months. I still feel like I’m on that raft adrift at sea but no longer on the open, choppy waters…now it feels like we’re cruising along the coast in sight of land!
We all had a great night’s sleep. Rudy is experiencing lots of something he hasn’t before–peace and quiet. Not sure what he’s thinking, but he is calmly looking around a lot in these new surroundings. He’s breathing well and just drank down his whole bottle this morning. It’s almost ten and I think he’s wondering why the morning doctor parade (rounds) is late. Hope they aren’t too sad down at UCLA.
Trish and I are getting ourselves set up here with Rudy’s equipment, medicines and now understand why hospitals throw so much away–much easier to toss things and get a new one out of supply next time than clean and store. But we’ll get the system down.
We so appreciated Greg Lawler coming down and taking pictures most of the day through discharge, the drive and arrival home–I think some people were wondering if we were famous enough to have a papparazzo running around us and snapping away. Can’t wait to see the pictures, but he was nice enough to post a great one to get us started. While you’re at Greg’s site, Livy fans might want to check out his pictures of her ice skating trip. She’s the one with form like Sonja Henie and teeth like a Detroit Red Wing. Nice to know talented people–thanks, Greg.
No, I think the better question is…”How much stuff can one baby accumulate in 6 months?”. The answer is…ALOT! After 3 trips with the wagon, I’m really thankful Rolf has a large truck bed because we’re filling every inch. It’s 11:30am – Rolf ran down to the pharmacy to get Rudy’s meds, Rudy is testing his car seat to make sure he can tolerate a long ride in it and I’m finishing packing up his room. We’ve had a constant stream of nurse and doctor friends come in to say goodbye but it doesn’t feel rushed or overwhelming which is nice…It has been a calm, comfortable day so far. We hope to hit the road no later than 2pm today which will put us in SB around 4pm. We’ll meet the home care nurse at our house at that time and then we’ll get him settled with the help of the nurse as she has to check and make sure everything is assembled and working properly. He has a feeding pump and poll, a mister-thingy to humidify the air he breathes through his trach and the suction machine…pretty managable. Our friend Greg is coming to document the trip in pictures so be sure to look for the pics soon…Bless you all!!!