Heart of Beckett

UPDATE (5/7/13)
Let’s start with yesterday. Beckett spent most of the day needing to be held. He did have a little time where he was content in his bouncy seat, but other than that he was either unhappy or held. Thankfully there are plenty of people around who love him and are willing to take a turn. They decided not to make any changes yesterday as he had had a difficult weekend. He did have PT, and when she tried to make him do tummy time, he let her know he was not going to have any part of that. He had started the morning on 49% oxygen but had worked up to 62% throughout the day. It is just so taxing when I sit and watch as he climbs higher and higher so quickly and then takes days to come back down again.
Yesterday my mom and I did have the privilege to have lunch with some very special friends form St. Vincent’s. It was such a gift to be able to go downtown and just be away from the hospital with friends and family. I was also really glad they were able to see Beckett and he was happy when they visited. He has gotten so big since they last saw him, and it is always fun to see people’s reactions to how much he has changed.
So yesterday was yet another day of spending quality time with my son in my arms, and having my mom there for the majority of the day. I am so grateful for her and for the break from constant holding and rocking. After all, I am human and my arms get tired. Plus we do crosswords and it almost always ends in hysterics, which is needed under the circumstances.
When you look at the big picture, yesterday was a decent day. Today however, was much more difficult. Beckett needed to have a new PICC line put in for two reasons. One, the line he had was old; he’s had it since February. Two, with the frequent blood draws they wanted a second lumen so they don’t have to poke him as much. I am on board with that! Since the septic workup from Sunday has come back negative so far, they felt comfortable going ahead with the procedure today. They were hoping to be able to insert a wire into the existing PICC, pull the old one out, and then thread a new one over the wire. This would allow Beckett to not be poked for a whole new one. So this morning we got him all ready and headed down to interventional radiology. The trip did not go so well. Beckett screamed and cried the entire way, and I could not get him to calm down. In fact, his mouth filled with so much saliva from crying that he was having a hard time breathing around it. He was sweating profusely and his color was draining from his body. Once down there I was going to pick him up to calm him, but I had to go to another room to sign consent. While I was sitting in the room, a nurse rushed out and said “they need help in 6”, the room I knew Beckett was in. Of course now my mind is going to all kinds of horrible places. Eventually an x-ray tech came in to ask me a few questions and I just had to ask if Beckett was ok. He said he was all right and that the nurse was holding him. He told me it was just taking a little while to calm him down. They let me back in the room and Beckett was sleeping on the nurse’s shoulder. He looked so limp, and he was completely flushed and pale. He looked pretty bad to be honest. They had turned up the flow on his VapoTherm to help him recover and his oxygen saturation was within range. They called the Nurse Practitioner down to determine what the next step should be. It was clear Beckett was not going to lie calmly on the table during the procedure, so they decided to give him some Ativan. They called upstairs and a nurse ran it down. When they went to give it, his scalp IV was no longer working. Ok, give it in the PICC line. Well then that didn’t flush very well, but they were able to get it in. Then they realized they could not do the procedure like planned because it would require disconnecting his IV drips for a period of time and that was not an option. That meant putting in a whole new one. So then I had to leave and sign consent for that. When I came back all of Beckett’s pumps were beeping and they couldn’t get them to run right. That meant they weren’t sure if his PICC was even working or if he was getting his IV drips. So they had to start a new IV. The nurse practitioner put an IV in his scalp, and thankfully got it on the first try. But, of course this made him really mad and the crying and sweating began all over again. He was so angry and looked pretty horrible. I was finally able to calm him with a combination of patting his butt and holding in his pacifier. They said it was a good sign that he had enough energy to suck on his paci. I couldn’t hold it in any longer and I began crying. The nurse realized I was struggling and asked if I felt we should continue (she had already informed me they were being very conservative with him and wouldn’t do anything they thought would be unsafe). I decided we had already gone through all this trouble, and I didn’t want to put him through it again so just do it while we are already here. The nurse agreed and then prayed with Beckett and me. It came time for me to leave, so I went upstairs to take care of a few things. As I headed back downstairs to wait, I was rounding a corner when I heard a baby crying. I instantly knew that was Beckett’s cry and turned back around. Sure enough they were heading through the NICU doors. They were almost running, and I could see the Nurse Practitioner was carrying him in her arms. They said he had done great through the procedure (respiratory therapy had patted his butt the entire time) and it had only taken about 15 minutes. It was not until they transported him that he became angry again. When I got into the room I could see his limp body hanging in her arms. Then they realized his scalp IV was bleeding. It was all over his head and down his face into his ear. He had sweat it out. They didn’t need the IV any more, thank God it had lasted for when they did, but all his drips were running through it. It was then a rush to hang all new fluids and run them through the new PICC line. Thankfully multiple nurses helped out and it got taken care of rather quickly. They had let me hold him as soon as they got back in the room, and he was asleep instantly. I was so grateful just to have him back in my arms. I held him for a few hours and seemed to be recovering nicely. They had to turn his oxygen up to 70% but his saturations were gradually getting higher and higher in his acceptable range. I was finally able to lay him in the bed and go have lunch at 4pm. I also had the privilege of trying to explain this to Jonny as he is back home in Upland, never an easy thing to do.
When I came back to the room I spent some time tidying up since it looked like a bomb had gone off. It was quite comical how much of a mess we had made. Then around five Beckett woke up with a little cry and then calmed right down. He looked so much better and spent over an hour laying in bed, playing with his toys and sucking on his pointer finger, which is his new favorite thing to do. After almost an hour and a half he just closed his eyes and gently fell asleep. I have not seen him do that in over a week. Then again this evening he woke up pretty content and played while we did his care and gave him a bath. Then I rocked him to sleep. When I put him back in bed to leave, he woke up but was perfectly happy just playing with his hands. It was like a completely different baby from 10 hours earlier. I could not have been more grateful. As I was leaving she had also worked him down to 60% on his oxygen. So he was making progress. Today was definitely draining, but the evening was almost back to normal Beckett behavior that we haven’t seen for quite some time. It was such an encouragement after how much he struggled this morning. I cannot believe how brave he is, nor how he continues to have such strong will to live. Don’t get me wrong, I am extremely grateful that he is a little fighter; I am simply amazed at his strength. I pray he continues to have it in spades.
Jonny and I read the devotional from Jesus Calling every morning, and today’s was all about trust and not giving into fear. It could not have been more fitting, and as I waited for Beckett to get out of the procedure I kept reading it over and over. This day went exactly as God had planned, and he will bring even more good out of it. He continues to be in control, and to show his sovereignty over our journey. To His name be all glory and honor and praise!

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

UPDATE (5/6/13)

So it is almost midnight and I am just getting home from the hospital. Therefore, I will simply say, overall, Beckett has had a decent day. Still going through withdrawals and crying and angry more than usual, but on a whole, a little better. I will fill you in on all the details tomorrow.
— with Jonathan Rupp at Riley Hospital for Children at IU Health.

UPDATE (5/1/13)
May. My, that is hard to believe. We never would have thought we would still be in the hospital, but that is the reality we find ourselves in, and honestly, I don’t see it coming to an end any time soon. Who knows, maybe God will surprise us. Despite being ready to have Beckett out of the hospital, our attitudes have not changed in that we only want him to come home when we know he is ready. Some days just seem to wear on you more than others. Today has been one of those days. While overall it has not been too bad of a day, the few little things have added up, and I am simply worn out.
This morning Beckett threw up part of his 5am feeding and unfortunately, it had at least part of his methadone in it. From what I was told, he was pretty angry after that, and understandably so. He did fall asleep for a few hours, most likely from exhaustion, and was able to make it to his 11am methadone dose without any additional help. His oxygen support did have to go up though during his “fit”. The nurse had been slowly weaning it down before I got there, but once I arrived it stayed in the same place for most of the day. His saturation monitor kept dinging most of the day, and this evening his support had to get bumped up again. Each time he would wake up throughout the day he would be crying and angry. This evening I gave Beckett his bath and rocked him to sleep immediately after. He was sleeping so peacefully and his vitals looked great. I gently tried to move him to the crib, and of course he woke up. He does not transition well when he is withdrawing. Important side note, they weaned his Fentanyl again this morning. It took me a long time to get him to calm back down after waking him, and he was so restless in my arms. Eventually his nurse came in and said she would hold him so I could go home and get some sleep. Before I left his oxygen had to be bumped up again. So as I left he was sitting at 50%. Just last night he was on 32%. I have explained my concerns to multiple people about weaning the Fentanyl without increasing his methadone, but they are telling me the wean is appropriate. It is just hard to accept when I have seen how bad his withdrawals can be, even to the point of ending up on a ventilator. So I do my best to keep voicing my concerns while also trusting their expertise. We keep praying for this to be as smooth as possible, and ultimately that Beckett tolerates the weans and can quickly be off the Fentanyl all together.
So I spent most of the day rocking and consoling, which sounds like a nice gig, except for the fact that it is so much harder to enjoy holding him when I am concerned about him not settling down and his heart and therefore oxygen being under stress. I should also say he did have a few times of play, where he was happy and smiling. At one point he even laid in his crib for about 40 minutes just playing with his hands and staring at his mobile (he has a new mobile from his nurses that visited Sunday, and he loves it!).
In the grand scheme of things, today was not a bad day. In fact, the nurse thought he did well with the wean. It just seems harder when I know Beckett is not himself. So we pray tomorrow is a better day and that Beckett is able to adjust to the changes. We all want him off his pain meds, but it is truly a long, slow and difficult process.
We did have a special visitor today. My grandma was able to come today with my mom. She has not been able to see Beckett since the day after his initial surgery. It was so good for me to see her, but also for her to see Beckett. She was able to spend time holding him, and I was so happy for that. I am truly grateful for each step of this journey, and all the blessings along the way. Each day is a gift. Even days like today that seem so long and hard. He is priceless, and I wouldn’t have this any other way. May. Yes it’s May, and it is clear God still has things for Jonny and I, our families, and countless other people to learn, so we keep fighting on. And we take it one day at a time.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

UPDATE (4/30/13)
Today was pretty uneventful. Only a few minor adjustments and lots of snuggle time. Beckett’s Fentanyl was supposed to be weaned today, but due to his difficult evening yesterday they decided to hold off one more day. As of today, all Beckett’s routine meds are now back to oral. However, the cardiologist thought his x-ray from yesterday looked a little wet, so they did give him a one-time dose of IV Lasix. Now, once we get him off the Fentanyl and Milrinone, he will no longer have any IV drips or meds. What a glorious day that will be, and it is coming soon.
Today Beckett and I were able to cuddle a lot. He also had snuggle time with my mom, and his nurse. He just loves to be held. He played in his bouncy and we even spent time sitting him up like a big boy. We are working on his neck strength so he can hold his head up, and he does better every day. He also got to have OT today, so she worked on stretches with him too.
Around lunchtime today I was holding Beckett and his oxygen saturation gradually began dropping lower and lower. She kept bumping up his support but he wasn’t really pulling up into his normal range. He had started on 36% oxygen and had gotten up to 48%. The nurse eventually decided to move the pulse ox and placed it on his hand. It was picking up at 81. Within minutes she was able to turn him all the way down to 32%, and he has been there the rest of the day. Everyone has been saying how good he looks today. We pray he continues to gain strength everyday, each day looking a little better than the last.
Here at Riley, they are supposed to give baths every day, and they do it on the day shift. Beckett’s routine for the past few months has been to have his bath at night right before bedtime. So today I asked it I could do it with his nighttime hands on, and they said that was totally fine. He behaved so well and only cried when I had to get under his chin roll. He laid there so calmly, looking around as I scrubbed him. He got clean clothes and his hair brushed. Once we had him all ready for bed, I rocked him tightly, and he fell asleep almost instantly. It makes it so much easier to leave at night knowing he is fresh and clean and fast asleep.
Overall today was a pretty good day. There were a few times when Beckett woke up angry, but he was typically easily consoled, and he always stops if someone picks him up of course. We like days like today. Days where it seems as though we are doing the normal baby things despite the situation we are in. We long for many more of the same.
I also just want to ask for prayer for the family Jonny mentioned yesterday in his post that was being transferred with their baby from Fort Wayne. Sadly, he passed away this morning, and doctors still were unsure of exactly what was wrong with him. We ask you remember them as they are going through an extremely difficult time of grieving.
As always, thank you for sharing this journey with us.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

UPDATE (4/24/13)

Praise the Lord for hope. Praise the Lord for renewed hope. Today’s care conference went much better than the last. I was nervous all day for what I might hear, but was pleasantly surprised by how positive the meeting was. While they cannot guarantee things will happen how we want them to, they do believe, as do I, that Beckett will be just fine. The main thing is for him to be able to come off the Milrinone drip, which they are planning to attempt tomorrow. After the events of last Friday, they have weaned him slower this time and amped up the oral medication that will be replacing it. They believe this should do just the trick. Other main points from the meeting include: they do think he could still be a candidate for the next stage of surgery, there are still more options before we would need to put him on the transplant list, he needs to get bigger (so they increased his calories today), overall he is currently pretty stable and they think he is looking really good, and finally, if everything were to go smoothly, we could possibly go home in a few weeks. While we have decided not to hold our breath for that, nor are we telling Beckett they even said it, it is still nice to hear we are currently heading in that direction. There are still things we need to accomplish such as getting off the oxygen, weaning off the Fentanyl and then the Methadone, switching his meds from IV to oral, etc. But, at the current moment, things are looking good.

It truly seems as though Beckett is feeling better because he has been awake and playing so much more the past few days. He was even so happy today when my mom was playing with him the nurse said it sounds like he is laughing, which it definitely did. It was the cutest thing. They also keep saying how amazing it is that for being as sick as he has been, he still is developmentally right on track. That is so encouraging to hear, especially after they expected him to have some degree of deficit following his arrest right after the initial surgery. God is working miracles in this boy’s life.

So today was a wonderful day. They made very minimal changes in order to give him a day of rest before the Milrinone wean tomorrow. We continue to pray this time is a success and Beckett’s heart can withstand the work with only oral medication. I truly believe God will give him strength, and I am watching and waiting for healing. As the next few days will be very critical, we ask specifically for prayer that Beckett can successfully wean off the Milrinone. We can deal with everything else later. We rest in the trust that God will give Beckett exactly what he needs each day, and one day at time.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

UPDATE (4/17/13)

What another great day! Beckett slept peacefully literally almost the entire day. He was awake for about an hour during lunchtime, and then for about another hour this evening. He was so happy when he was awake. He smiles so big and talks to us. Boy does he have a lot of stories to tell. This evening my mom was here while he was awake, so he was able to show off how he reaches and plays with the toys hanging over his bed. He does really well for not having had a lot of true playtime the last three and a half months. Everyone talks about his attentiveness and social skills. They say he makes great eye contact and loves to interact with people. Even the neonatologist had to spend some time playing with him today after her assessment. It is so great to know he is a happy baby despite all he has been through.

On to the logistics. The big news of the day is Beckett’s billirubin came way down today and they were able to pull out his drain. We pray this problem does not creep up again down the road. This morning when the doctors were in his room, they said his Vapotherm was barely in his nose and he was doing just fine, so they turned his flow down to 3 liters. He has been doing great with that. They are continuing to wean his Milrinone which he has been tolerating, and it will be turned off completely tomorrow morning. They also have an echo scheduled for the morning once he is off it altogether, as well as started him on a small dose of Captopril, which will help with his heart function. His last IV med was switched to oral today, so after his antibiotics in the morning he will no longer need the IV in his scalp. I cannot wait for that to come out, which I am actually surprised it has lasted this long. They also plan to begin weaning his fentanyl again tomorrow. So, lots of changes, but all in the right direction. I have told Jonathan for a long time that eventually the drastic set backs will have to stop and Beckett will have to make continual progress. I am praying that he has turned that corner and it is only up from here.

We had some special visitors today. One was a nurse that sat ECMO back when Beckett was first put on. She could not believe how big he is, nor can I half the time. The other was a family we met here whose son also has HLHS. It was so good to see them, especially since it’s not as convenient for them to visit anymore. It is always nice to have people come see how we are doing, or sit and chat, like yesterday, when my lifelong best friend sat with me for hours. It helps to have some positive distraction every now and then.

Each day I get to help a little more with Beckett’s care. Obviously there are things I’m not allowed to do, but each day it feels like I get to be more and more of a mommy, taking care of my baby like normal. It feels so good to be able to do this for him, as well as help me get comfortable with what life at home will be like. I love that I get to be here all day to watch over him and care for him. He truly is such a special boy and is going to do big things in this world. I can’t wait. It is such an honor to be able to watch God’s plan unfold, and he is not done with Beckett yet. We are all privileged to watch him work, and I pray our eyes are open to his power being displayed before us. Thank you Jesus for choosing to use my son to do such a mighty work in this world.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.