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! 🙂
Rudy's Beat 
Oh, my – this is the hard part, isn’t it? You did exactly the right thing and I am praying with you that this fever will settle down and not lead to any further complications. Everything about your dear boy is just super-sensitive and that is going to take getting used to when you’re dealing with it on your own. May the peace of God settle over you as you head to bed tonight and may you all have yet another good six hours of sleep and recovery! Love and prayers to you all. The pictures are too wonderful for words. Three lovely boys (though the older ones would not appreciate that particular adjective, it certainly applies! You have my full permission to substitute ‘awesome’ at any point. :>)
Sleep well, all of you. I’m sorry you had this scare – I feel at a loss for words as I have no idea what Rudy or you guys are going through, but God does and I will pray that His peace will settle over you as you get used to the “new normal”! Rudy definitely has his own M.O., but your lives and hearts are more full because of him – it’s obvious!
I know it’s bit scary right now and you didnt realize how much you relied on the nurses at this point but this to will pass and you will learn to trust yourself again. Im glad you took him in but this is the adjustment time for you all. You are now learning without the security of the hospital staff your son Rudy. You can do this. I know it is overwhelming and there is that sense of Oh my gosh but all you need is a deep breath and faith. You have come a long way baby and it really will get easier. I promise. I hope to see you soon. xoxo know you have so much support from us and never feel you cant call on us. we love you all. Go Rudy Go!!
you never over react when you have a HLHS child……sit back and think of other parents and what they do with a sick child……..the normal cold, etc…….prayers for strength for all of you….Dawn’s Mom
Trish, I have felt so much of the same things, so many times. You just never know what is “normal baby” or “medically fragile baby” stuff! You will learn his signs and symptoms of things…but you’ll always worry that you’re over reacting! And now that Nick is older, I think he even uses it to his advantage! He’ll tell the baseball coach that he needs a break while the kids are running, but when it’s time to bat, he’s fine and dandy!! Don’t worry, you’ll learn to know when to panic and when not to…to grows on you like a third limb!
Continued prayers for peace and health.
We’re standing by you in prayer! Wow! what a day by day challenge!
It is so good to see Rudy on the carpet with his brothers!!!
Dear Trish and Rolf–What a team! You can do it and will soon feel much more comfortable with the journey with Rudy at home. The commebnts from other HLHS families affirm this. Hang in there. We are so proud of you and the children–just remember God doesn’t make mistakes and he certainly picked a great home for Rudy.
Dear Trish and Rolf, you are doing great. The adjustment is tough but the comments from other HLHS families affirm that this is part of the journey. Hang in there. God does’nt make mistakes and placing Rudy in your home is just where he needs to be. We are so proud of you and the children as you all pitch in to make Rudy’s life the best it can be. You are upheld by much love and support and faith. How we love you!
Praying for you, friends, as you get used to life with Rudy in SB and finding your way to the new sources of care, etc. Rudy’s surely taking it all in, too. Praying for a very healthy weekend! There is so much love in your home, and may God’s perfect love cast out the fear. Rudy looks the best he’s ever looked on that blanket at home with the boys. May God’s power strengthen you all!
Trish you are one awsome mom! You are doing great and things will get easier as time goes on. hang in there and trust your gut decisions. We are still praying for you all.
Hugs and kisses to all the kids.
You guys are doing great on the new and improved home version of the heart baby roller coaster! Praying for peace and joy for you all this Easter.
God grants sleep to those He loves.
Phew – but all I keep noticing in the photos and voices, from the trip home and with the other kids, is JOY!! Amazing how God gives us the hard stuff to make the joy so deep. Joy in these moments, in just being home and together, no matter what happens tomorrow. EN – joy!
Sending prayers for peace for all of you and comfort and blessings to sweet Rudy! Love, Jane and Joe
Rolf, Trish and family,
You can do ALL things through Christ who strengthens you!! I pray for continued peace. Live in fear? NEVER! That’s what Satan would looove for you to do. Let go, let God (smile!) We had an incredible Easter service and I just thanked God for the miracles and strength that he has given you and your family.
Hallelujah! He has Risen!!
Tanya
Dear Rolf (MD) and Trish (RN)
God is sharing his wonderful spirit with you to know what to do and when. We can see Rudy is thriving at home with all that brotherly and sisterly love. We will pray that Rudy gets over this fever quickly with a few doses of tylenol. He is such a stong little fighter! Much love and Happy Easter to all of you! Love, Lisa, Paul, George and Nick Borkovich
Oh, Trish. How scary! But you guys did the right thing, and Little Warrior is fighting on. In a way, it’s a good thing that he spikes a fever suddenly as it gives you warning that you need to start checking for symptoms.
The pictures of Rudy so enthralled with his big brothers is so precious! I am so happy you guys are all together! Relax! You are doing wonderfully, and the Lord is leading you on this path.
Much love and prayers for you all on Easter. Hope you have a blessed day!
We are sending lots of Easter prayers your way that you may have peaceful nights and courageous days as you juggle the complicated care regimen and unknowns for dear Rudy. We LOVE you and wish you all the blessings and strength you need.
Andrea, Mayali, Kyra
We are so thrilled that Rudy is home with you now. The slide show was very moving! You continue to be in our thoughts and prayers. Happy Birthday, Wilson! Happy Easter!