Author Archives: Heart Of Beckett

Mar 13 2013
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Leah

March 13, 2013

UPDATE (3/13/13)

Yet another good day. Everyone was commenting today on how great Beckett looks. He was able to have a relaxing day yet again; a day filled with sleeping and playing. Then tonight he got a very thorough bath, new linens, and new pj’s. Once he was tucked in for the night he quietly drifted off to sleep within about a minute. He has been so peaceful and calm all day.

The only main events for the day were turning his Vapotherm down from four liters to three, weaning his Fentanyl drip from 2 to 1.5, increasing his Lovenox dose, and changing the multivitamin he gets because his billirubin has decreased enough. Nothing major, but all good things.

They are planning to do his upper GI early next week, and surgery for his g-tube mid to late next week. This truly is a huge step and we can’t wait for this to be done. They have also cancelled the HIDA scan for now.

Oh, and Beckett is almost back up to his full feedings. This is great, and he continues to grow bigger and stronger, becoming more active every day. Tonight he weighed a whopping 9 pounds 2 ounces. I honestly cannot believe how big he is getting, and I often forget that he is almost three months old. Where has the time gone?

This morning while my mother-in-law was praying after our devotional, she thanked God for spring and the coming of new life. How wonderful is it that soon we will be bringing Beckett home, in the springtime, with new life ahead of him. What a beautiful picture.

— with Jonathan Rupp at St. Vincent’s Womens Hospital.

Mar 13 2013
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Leah

March 13, 2013

Sorry this didn’t get posted last night. Had trouble with the internet.

UPDATE (3/12/13)
What a great day for Beckett! Praise the Lord! When my mother-in-law, Linda, and I arrived this morning, Beckett was wide-awake lying calmly in his bed staring at his mobile like he loves to do. His nurse had already changed his PICC dressing so that it would be out of the way. This was literally the only procedure he had to endure today. Other than routine assessments every three hours and diaper changes, he wasn’t messed with at all. It is about time that boy got a day of rest. I could not be more grateful that he was finally able to take multiple long naps. He was awake for hours this morning perfectly content in his bed (we are not allowed to hold him right now due to his fresh chest tube). Grandma Linda did give him some “exercise” three times today. She would sit him up in the bed, let him look around, and talk to him about the animals on his mobile. She is already teaching him colors and animal sounds. She held him up like that for what had to be at least an hour each time, normally until her hand went numb. I told her she is going to have one really big forearm because she only uses the left one. Ha Ha. He would eventually get tired and drift gently off to sleep. She then laid him down and he would sleep for hours.

This evening when we returned to his room he was once again awake. He was so happy. He had a sweaty head so I washed his head and face, along with his hands and feet. We changed his bed linens and his clothes. He was so comfortable once everything was freshened up. They also weighed him tonight. Are you ready for this…Beckett weighs 8 pounds 15 ounces! And Saturday night when they measured his length he was 22.5 inches long. He is getting so big! When people haven’t seen him for a while, one of the first things they comment on is how big he is, and how chubby his cheeks are. We have been told one of the best things to do for surgery number two is to grow him. We are definitely working on that.

Just so you know, we love visitors. Yesterday we were able to see our friend Rachael from the PICU, and today our friend Karol from the PICU came. It is always so good to see them and catch up. We miss them over there, and while I would love for Beckett not to endure any more surgeries, it is inevitable, and we will be back hanging out in the PICU with all our friends before we know it this summer.

There was lots of good news today. So far, as we may have mentioned already, all of Beckett’s recent cultures have come back negative. That is absolutely wonderful! He still has a small pleural effusion, but the chest tube should continue to drain that out. His breathing continues to be relaxed, and the Dr. said he even looked more comfortable today than yesterday.

So before bedtime Grandma Linda once again had him sitting up and enjoying a different view. It wasn’t long before he started getting sleepy. The nurse began tucking him in, and he was rubbing his eyes and everything. Within minutes he had fallen asleep. It is comforting to know he sleeps so well, and I pray it is truly restful for him. It is so wonderful to see how good he looks when he was so sick just a week ago. I don’t think we will ever know all the ways God has answered our prayers, but I simply look at my son, and I know he has heard them. God is in the midst of this. God is in control of this. We are walking in the assurance that this journey has been perfectly planned for us, and we wouldn’t have it any other way.

— with Jonathan Rupp at st Vincents womens hospital.

Mar 11 2013
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Leah

March 11, 2013

UPDATE (3/11/13)
Today was a good day. Beckett was once again extubated! Yeah for no ventilator! He is now back on the Vapotherm and has been breathing comfortably all evening. The nurse tonight also had Beckett on Friday night after he was extubated. She said he looks so much better today than he did then. Every one has been commenting on how much he had to appreciate having his pleural effusion drained because he has been so much happier and content today, as well as being more engaged when people are interacting with him.
Right before they were going to extubate him, they were moving things around to make room for the Vapotherm. They had moved some of the cords from the ventilator and he must have gotten a “drink” from the water in the tubes. I happened to look at the monitor and his heart rate was in the 90’s. So when I looked at him, his was crying hard and beat red. Then his oxygen began to drop. It got all the way down to 46. I said something to the nurse and she suctioned him and turned his oxygen up to help him recover. He bounced back right away. It just so happened the doctor had walked in as this was taking place, so it appeared that he was really struggling. Thankfully he recovered and they were able to take him off the ventilator without any trouble, and as I said, he has been comfortable. I just thought you all would appreciate reading how these things tend to happen before something big and always as the doctor walks in. Go figure.
Beckett was awake almost all day. Literally. It seemed like he barely slept at all. But, he was so calm, just looking around the room and staring at his mobile. This evening, my mother-in-law, Linda, spent some time sitting him up in bed. He just kept turning his head from side to side to take in the new view. It was so funny. It was like he had just been introduced to things he had never seen before. Oh, and how he stared at his mobile. He absolutely loves that thing, and heaven forbid it should stop moving and playing music. When she finally laid him back down in the bed, his nurse put him on his side and tucked him in, and he feel asleep instantly.
His blood gas post-ventilator was good tonight. They have also been increasing the volume of his feedings today. They are talking about possibly putting in his G-tube at the end of this week or beginning of next. His labs have looked good. The fluid from his spinal tap was negative, which is awesome (no infection in his spinal fluid).
Beckett seemed truly happy today. He appears to be feeling much better and we praise the Lord for that. We pray we are back on the road to recovery, getting ever closer to going home. They have told us from the beginning it is two steps forward and one step back. We pray that after all the challenges Beckett has had to face, he will only move forward from this point. But, should that not be God’s will, we will boldly face whatever challenges come before us, knowing He will carry us through to the end. He has proved himself faithful time and time again, and the rest of this journey will be no different. May he continue to be glorified!

— with Jonathan Rupp at St. Vincent Women’s Hospital.

Mar 11 2013
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Beckett, Jonny

March 11, 2013

Hey guys, Beckett here. I just wanted to take a moment and thank you all for your thoughts and prayers for me, especially this last week. Yeah, I know I’ve been through much worse, but having this tube put in and then taken out to then just be put back in again is tiring…and to be quite honest, it’s not very comfortable. But I’ve beaten off a few infections this past week and am being told that the Doctors really do think I’m ready to have this tube taken out later this afternoon once and for all.

It’ll be good to hear my voice again. I know it’s cute because people always gather around when I use it, especially my parents.

My mother hasn’t left my side since I was born, and for that I will always be so thankful. Daddy has to leave here-n-there, but I know it’s for the good of his family he is trying so hard to take care of. They aren’t perfect, but I definitely know they love me!

I cannot wait to meet you all. Thanks for caring so much for me, even though many of you haven’t ever even met me. And thank you for encouraging my parents. I can tell when they are renewed from a lil message they’ve read, or an unexpected visitor stopping by just to hug and encourage them. They always come back so reenergized.

And to my family, grandmas/grandpas, cousins, aunts/uncles, great grandparents, extended family….a big fat thank you! It’s amazing how much you care and love me as if I was your actual son.

And lastly to the doctors and nurses who look after me. To be quite honest, I wouldn’t still be here without your wisdom, skill, and consistent care. Thank you for helping me out when my body just wasn’t able to do it on its own.

And to my God. I’ve been told that there have been moments when the skilled physicians weren’t able to help me much more and you would step in and save the day. Thank you for using my lil heart condition to display your power and love for not only me, but for all who love and care for me.

I will grow up trained to follow the guidance of your words found in scripture. I know my parents will train me in the way I should go, and I will not depart from it. Please use my life to share your love and your grace to all I meet.

Again, I hope to meet you all soon. I’m on my way out of here…I just know it!

Beckett Intubated (again)

Mar 10 2013
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Jonny

March 10, 2013

UPDATE (3/10/13)

Sooo….the “time change” kinda got us this morning. We kind of got off to a late start. But in getting to the hospital, we found out that the doctor was in the middle of putting in his chest tube. They came out to the waiting room to inform us that the first attempt did not drain ANYTHING. Mmmm, that was a lil confusing and frustrating. They said they were going to do an ultrasound and see why. They tried again and got it (yes, this means they pierced his side twice….and while they did give him morphine and fentanyl, no, they didn’t numb the area. yikes.). They pulled off over 50ml of fluid, and it is still draining!

Leah actually left for the afternoon to meet up with her Dad here in Indy for a Volleyball Tourney. Her Dad coaches Volleyball, and Leah was actually planning on doing it with him these past few months….until all of this. This was really good for her to get away for a moment to be with her Dad and relax with a sport she is so comfortable with and skilled in (yeah, I’m bragging about my wife).

Sooo, I set up my “mobile office” in a chair in Beckett’s room. It was challenging to concentrate with nurses and doctors walking in and out along with Beckett constantly squirming and me just trying to settle him down for him to then just do it all over again. It was worth it though, just difficult to concentrate and stay very productive.

Beckett is honestly doing sooooo much better. He looks much better, even better than this afternoon. He seems awfully relieved (to have the fluid gone), and I really do think we are back on the road to recovery. I am so legitimately proud of him. He was truly such a trooper today and handled it very well! But don’t give up on us…you’ve seen the silly lil games Beckett likes to play with us. Oh, and we will try to post another picture again soon…he just hasn’t really been lookin’ 100% as of late.

Lastly, please pray for a neighboring baby and her family. We were just informed that the Doctors don’t feel as if there is anything more they can do for her and had the difficult conversation with the parents to possibly “pull-the-plug” (sorry for how course that sounds, I’m not quite sure how else to say it). Though we’ve been awfully close to that point ourselves, we have yet to actually get to that point (and hopefully never!). I cannot imagine how that family is feeling. So, again, please pray for them too. This is very heavy on our hearts tonight. God can heal this baby. So let’s pray for healing and comfort for that family.

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Mar 09 2013
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Jonny

March 9, 2013

UPDATE (3/9/13)

I’ll keep this update brief, but hopefully still informative.

As you may have seen from the update earlier today, Beckett was unfortunately REintubated again. Yes, yes…this was certainly disheartening, but only disheartening because of our impatient nature. This decision to REintubate was for his own good. We just want him healthy…whatever it takes, and however long it takes. He really hates the tube going down his throat and requires a lot of extra attention to calm him down (most likely because he’s had a “taste” of what it’s like to not have a tube down his throat), but that’s nothing a few thousand pats on his back can’t handle. Yes, he loves being pat on his back or behind…it settles him right down. Unfortunately though, as soon are you stop, he is not a happy camper (we are going to have massive, and weird, hand and forearm muscles). He does seem much less distressed from a breathing standpoint, but not necessarily from a annoyance standpoint. But once again, this is just a necessary evil, and as long as this is helping us move towards the end goal of getting “healthy”, than so-be-it.

We did find out some pretty great news today…his E.Coli is GONE! Yay! He will need to continue his full 10 days on the antibiotics though, but still…that’s really good news! Sooo, no more MRSA or E.Coli.

Also, he will be tapped tomorrow morning to drain the pleural effusion (fluid) from around his lungs. Though this is yet another “operation”, it is minor and should be fairly quick and relatively painless. In fact, he should be feeling a lot better once that fluid is gone.

Whelp, that’s about it. Yet another day. We do, however, try to hang on to simple truths and positive reminders that it was yet another day we were blessed to be with our son. Again, there is no guarantee of another day with anyone (husband, wife, mom, dad, brother, sister, son, daughter, grandma, grandpa, friend, etc.). Sooo, take advantage of the time you are given. It is a gift, not a right. Life is a precious commodity, be a good steward.

#GoBeckett!

— with Leah ‘Whiteley’ Rupp at st Vincents womens hospital.

Mar 09 2013
1 Comment
Jonny

March 9, 2013

UPDATE (3/9/13)
-REintubate-

The title of this update is pretty self-explanatory. Beckett is getting REintubated right now. We came in the room and they were turning him up his VapoTherm from 2 liters to 3 liters. They then turned him up to six and later to eight liters. He seemed quite restless, so Leah eventually picked him up and his oxygen dropped even lower. The Doctor then came in and gave us the results of an x-ray they did this morning and said that his pleural effusion (fluid) around his lungs has gotten bigger. This then led to Leah basically saying that Beckett is not looking the greatest and really should probably be REintubated. Rather than just watch him struggle all day on VapoTherm and possibly just wear himself out…this is probably just what’s best for him. He needs to relax his breathing and fight off his infection (E.Coli), and then we can REextubate him. So, as mentioned about the fluid around his lungs, they have to take him off his blood thinner for a certain amount of time before they can “tap” his chest to drain that fluid. So that chest tube won’t happen until most likely sometime tomorrow. Where as Monday this was devastating, today is a different story. Though not ideal (at all), this was provoked by us and is really in Beckett’s best interest. Leah has a strange amount of peace about this, where as I am slightly discouraged once again. However, we really have complimented each other well throughout this journey. When I am weak, she has been strong and vice versa.

Thanks everyone (as always)…one step at a time.

— with Leah ‘Whiteley’ Rupp at St. Vincent’s Women’s Hospital.

Mar 08 2013
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Jonny

March 8, 2013

UPDATE (3/8/13)We came in the room to see a friendly/familiar face. One of his primary nurses was back again taking care of him. She was excited to tell us the tentative plan for the day. She said that Beckett will be getting his Spinal Tap today and possibly Extubated if his GAS score came back favorable. For me personally, I immediately began to guard and work to properly set my expectations.

As the day unfolded, I would receive texts from Leah on how he was doing because I set up camp in the hospital lobby once again to do my studies, pay bills, write emails, etc. etc. etc…

Leah eventually text me that they were going to do the Spinal Tap. I was texting with a friend today just how crazy these ‘lil’ (literally) operations are. I (and even Leah) cannot believe how they do IVs, Spinal Taps, HEART SURGERIES, etc on these little babies. But here we sit once again with our son’s health in the hands of another Doctor. After lunch we returned with the pleasing news that the Spinal Tap went very smoothly. We are still waiting, however, to hear the results of the Spinal Tap, but we are thrilled it went well.

So I went back down to my ‘office’ to once again receive notifications from Leah on how he’s doing. She eventually text me, ‘They are going to take the tube out.’ I believe my response was ‘What?!?!’. Turns out they let Leah stay in the room and she actually captured it on video…it was pretty cool to watch.

Soooo, here we sit. Leah is to my left journaling, and I’m pounding out this update with Beckett laying directly in front of me without that stupid tube down his throat (it’s obviously not really stupid….once again, a ‘necessary evil’). I have mixed emotions of relief and fear. We (probably you guys too) have been trained to expect bumps in the road. However, even though that is an ingrained emotion, I choose to believe and desire smooth sailing ahead (right?). All of me wants to protect my expectations from disappointment, but I choose to fully engage in the mindset of a full recovery that I know my God is fully capable of providing and blessing us with.

On a quick ‘Medical Update/Recap’ note:
– The results of Urine Culture came back negative…yay!
– His Spinal Tap went smooth, but we are still waiting on those results
– He is on Antibiotics for E.Coli for 10 days
– He got Extubated!!!!! (again)
– The Infectious Disease Nurse Practitioner said he’s looking better than she even thought he would.

And lastly, a huge thank you to the Gaylord, MI Bob Evans Fund Raiser. I haven’t heard the results of that yet, but I was told that the Bob Evans in Gaylord, MI was giving 15% of all their gross sales for their entire day to the Beckett Jude Rupp Benefit Fund. ….that’s just amazing! So again, thank you so much for doing, organizing, eating, tipping, and paying 😉 today! So cool!

1 Chronicles 16:11&12
“Look to The Lord & His strength; seek His face always, remember the wonders He has done!”

— with Leah ‘Whiteley’ Rupp a tSt. Vincent’s Women’s Hospital.

Mar 07 2013
4 Comments
Leah

March 7, 2013

UPDATE (3/7/2013)
Beckett has had a better day today. He continues to make progress towards recovery from this infection. The blood cultures they drew yesterday show he has E. coli. Now that they know the exact organism, they have put him on a more specific antibiotic. They appear optimistic that a course of antibiotics will be all he needs to kick this infection and get back on track with his recovery. They also have said today the problem with his right lung is a result of what appears to be pneumonia. His lung continues to open up and looks better today than yesterday.
When my mom and I entered the room this morning they said Beckett had developed a fever. They gave him Tylenol and put cold compresses on his head and within an hour it had returned to normal. He did not have a fever the rest of the day. He also had very loose stools, which is not normal for him. They sent them to the lab just to make sure he didn’t have a stomach virus, but we haven’t heard results of that yet. This was before they new about the E. coli, so they think the fever and diarrhea are a result of that.
It is part of the NICU protocol to do a spinal tap when a baby develops sepsis (infection in the blood), so Beckett will be having that done either tomorrow or Saturday. They are planning for tomorrow morning, but it depends on the level of his blood thinners, as it needs to be within a safe range.
Beckett still has his PICC line, which is such a blessing now that he has continuous fluids running. It is possible that it would need to get pulled soon should the risks outweigh the benefits with him having an infection. Also, they are no longer able to draw blood from it, so they are back to poking him for labs. We pray they are able to get it working again, as this happened on Sunday and there is a medication they can put in the line to help open it. We are not sure if they will try this again or just get blood by sticking him.
Beckett has been making progress in the right direction. So much so that they are talking extubation in the morning! Hallelujah! We want him back off the vent, and HE wants back off the vent. The respiratory therapist was joking with him tonight and put his fingers around the tube and said, “Now Beckett, this is how you do it”. While we do not encourage self-extubation, we can’t wait for him to have that tube out of his mouth!
One of the hardest things for me about Beckett needing to be re-intubated, was that he no longer had on clothes. I know this sounds silly, but I was so sad, especially when I came in on Tuesday and his feet were so cold. I just had to at least put on his little puppy slippers. Then yesterday he peed all over those, so I put on his monkey booties that go all the way up to his knees (Beckett has little chicken legs). I just felt like he would be more comfortable if he were at least allowed to have on clothes. I did not say anything, but rather tried to keep him covered with a blanket so he wouldn’t be cold. Then today his nurse pulled out an outfit and put it part of the way on (his arms were left out since he has IVs in both). This made me feel so much better. Thank you Kendall!
Tonight when we left he looked so comfortable while he slept. He is back to moving in the right direction and we are so grateful. God keeps showing us he is alongside us in this journey, all the while going before us to prepare the way for Beckett’s healing. We cling to his promises. My great Aunt Sarah always has the same answer when asked how she is doing. Her reply is always, “I’m pressing on”. By God’s grace we are PRESSING ON!

Psalm 91:15 & 16
“When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
With long life I will satisfy him
and show him my salvation.”

— with Jonathan Rupp at St. Vincent Women’s Hospital.

Mar 06 2013
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Leah

March 6, 2013

UPDATE (3/6/2013)
As Jonny said earlier, we walked in this morning to Beckett’s oxygen at 80%. The x-ray showed atelectasis in his entire right lung. The increased his breathing treatments to every four hours and started his chest percussion therapy again. After his first round of CPT this afternoon and having been on his left side for about an hour they were able to decrease his oxygen all the way down to 34. He was awake for quite some time this afternoon and evening, and was completely calm and just staring at his mobile. He would look at us and appeared content. He was so cooperative with everything they had to do today, barely crying and sleeping through most things. He had a busy afternoon filled with changing his PICC dressing, having an IV put in (which he just laid there and watched them without even pulling his arm away), heel sticks for blood draws, and more.
His hematocrit was low again today, so he had another transfusion, which is why he needed another IV. He was having residual through the night from his feedings, but that had improved by the early morning. His girth was increasing throughout the day, but his abdominal x-ray looked good. It appears to be fluid since it shifts with his position, but they are continuing to watch it. His girth had decreased by a centimeter and a half by the time I left this evening. They had given him an extra dose of IV Lasix following the blood transfusion to help with his diuresis. His billirubin has also come down so he no longer needs the HIDA scan.
The blood culture last night that showed bacteria growing required him to be on another antibiotic. In talking with the infectious disease doctor this morning, he said hopefully a few doses will kick this and Beckett will be back on his way to continued healing. While of course we would rather him not have an infection at all, it is better to have an explanation that can be treated rather than no explanation for the problem. Yesterday they were thinking it was Beckett’s heart that was not able to handle the demand now that he is growing. The were even talking about the possibility of needing to move his second surgery, which is supposed to take place this summer around six months of age, to three months of age. I talked with the nurse practitioner that works with the surgeon today, and she said Beckett is not on the surgery schedule for the next few weeks. While it is always a possibility we could have that discussion in a month or so, it does not look like we need to at this point. The echo from Monday shows Beckett’s right ventricular function is decreased a little from January but this is seen a lot as he has one side doing the work of two. This is also why Beckett has cardiomegaly (enlarged heart). They increased the dose of one of his medications tonight to help the heart work more efficiently until the next surgery when it won’t have to work as hard. So while of course I would rather him not have an infection, I am glad it appears Beckett had to go back on the ventilator as a result of that, rather than an issue with his heart.
Beckett’s repeat x-ray this evening showed the lower lobe of the right lung has reopened, but they rest of the lung still needs some work. Beckett slept through his CPT tonight, and you should see how they pound on his chest, (especially because he hates the other method which is actually gentle vibrating). How ironic is that? He even made his respiratory therapist laugh because as soon as she stopped he opened his eyes and looked at her as if to say, “why did you stop that?” But then he went right back to sleep and was sleeping soundly when I left. They had also decreased his rate on the ventilator multiple times today and were decreasing it to 25 when I was leaving because his blood gases have looked so good. The therapist said if he keeps this up he will be off the ventilator before she comes back next week. While that may not be the case due to his upcoming surgery for the g-tube, it is great to know he is progressing quickly in a positive direction after having been on these new antibiotics. Yesterday I had thought Beckett truly looked sick again, but today I felt he looked much better. He has fought through much rougher days, and while this is very serious for him, I know he will fight through this as well. So this morning Beckett was on 80% oxygen when I walked into the room, but tonight when left he was on 22% (room air is 21%). Praise the Lord for that.
My mom and mother-in-law are both here in Indy staying with me tonight, so I will be done so I can enjoy the slumber party. God is always with Beckett, and with us. We rest in his faithfulness.

— with Jonathan Rupp at St. Vincent Women’s Hospital.

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