Heart of Beckett

UPDATE (2/7/13)

Today has been a good day. Busy, but good. This morning Beckett had an ultrasound of his groin and legs from where his central line used to be. He had developed a clot but was already being treated with blood thinners due to the clot in his brain. Therefore, they have just been keeping an eye on it, making sure it isn’t occluding the vessel. So far it hasn’t been. This morning’s ultrasound showed it is looking slightly better, so that is good. They were also going to take his chest tube out this afternoon since he hasn’t had any recent drainage. The hematologist recommended waiting until tomorrow morning so that two doses of his Lovenox (blood thinner) could be held prior to the removal. However, this evening, the drainage around the insertion site had turned from brownish to greenish and the nurse just wasn’t happy with it. It definitely looked infected. She said she would have the doctor look at it. When we returned to the room after shift change, the chest tube was removed! What a huge step for Beckett! Not only is that one less tube he has, but it removes the site of possible infection, as well as moving him one step closer to starting feeding by mouth. Another note on feeding, Beckett has been doing so well with his feedings being in his stomach that they changed him from continuous feeds to feeding him a larger amount over three hours and then turning it off for one hour. This moves him closer to bolus feeds. So he is heading in the right direction. They also changed his PICC (IV) dressing. This is a sterile procedure, so they had him all covered in drapes. He was sweating so badly he broke out in a rash and all his tape and other dressings were sweating off. He really was a “hot mess”. Once they got him settled, he cooled off, the rash went away, and we were able to get all his “accessories” redressed. Daddy also came back tonight. After a very long day of classes, he gets to spend the next few days here with us. He is actually spending time holding his son as I type, a good thing for both of them! Beckett has also been pretty pale and very tired today. I had a feeling he might need some blood, and was going to ask what his latest labs were, but when the doctor came in, he said they were going to transfuse him. That whole “mother’s instinct” thing never ceases to amaze me. So he is getting blood, and he already seems more alert than he was earlier today. Beckett and I also had a very special treat this afternoon. Two very special nurses from the PICU came over to visit! So great to see them again. Boy do we miss everyone over there. They quickly became like family!

Also, I wanted to give a quick update on Henry. Big news! He is in remission!! Praise the Lord! He still has some chemo to do since his cancer is a very aggressive one, but what an answer to prayer. Also, he has been peeing, which means his kidneys are working again! His trach is healing, and he has been off the ventilator most of the day. Prayers are needed as he too is going through withdrawal from sedation medications and it is causing him not to sleep, along with other things. Also please pray that he is safe from infection as he basically has no immune system. The Wooten’s are a very dear family and they helped Jonny and I through some very dark days. We ask that you continue to remember them in your prayers. Thanks for caring for both our boys!

https://heartofbeckett.com/ — with Jonathan Rupp at St. Vincent Women’s Hospital.

UPDATE (2/6/13)

I feel as though the next week of updates could be a lot of the same. Nevertheless, it is our reality, and Beckett’s reality, so I will continue to share. Beckett spent a lot of the day crying, at least to me it felt like a lot of the day. He did sleep for a few hours this afternoon, but he continues to wake up periodically and cry inconsolably. I just sit next to his bed and hold his hand, put pressure on his arms (they say this is much better than stroking them) or rest my hand on his head. I also try to hold him when I can. He does take his pacifier at times, but even that doesn’t always work. Needless to say, it is emotionally exhausting, so I try to take advantage of that rule “Mom sleeps when the baby sleeps”. We will continue to work through this, and as I must continually remind myself, Beckett is not the first to go through this process and he too will come out on the other side.

So for the good news. This morning they put in a nasogastric tube to try feeding Beckett directly into his stomach. Previously he was being feed into his small intestine. They left his other tube in to make sure he would tolerate this transition before taking it out. He did not have any spit up the entire morning and afternoon, so this evening they pulled out his old feeding tube, and now he just has one small tube going into his stomach. This is a big step towards him being fed normally. During the trial however, since there were multiple tubes in his nose, his oxygen was a little less than normal for most of the day, so they kept increasing it little by little. Once they were able to take out the old tube he did seem to do a little better so we pray he adjusts again and is able to decrease his oxygen to where it was before. His chest tube drainage has also decreased significantly, so hopefully they will be able to remove it soon. Please pray for this also as the area around the insertion of the tube has been a little red. This morning they cultured it, and we pray for no infection. Overall, today Beckett made some huge steps and we celebrate God’s faithfulness. One last thing, today we had the wonderful surprise of Jonny coming down. I turned around to see him entering the room. It was wonderful to have him there for a few hours and good for him to be with his son. He did have to return home for class tomorrow, but what a special treat as I was not expecting him until tomorrow night or Friday. Yeah for surprises!

https://heartofbeckett.com/ — with Jonathan Rupp at St. Vincent’s Women’s Hospital.

UPDATE (2/5/13)

Beckett has had a good day, but a rougher evening. Beckett’s withdraw scores have consecutively been low so today pharmacy decreased how often he receives his methadone. While he still gets the same 24 hour total, he gets a dose every twelve hours now rather than every eight. So, tonight it appeared to hit him. While I was holding him this evening he would cry pretty hard every 15-20 minutes and it was very difficult to help him calm down. While he did calm down each time, it was very hard to watch. We have been extensively warned that this will be a trying time, but like with this entire experience, you don’t realize the difficulty until you do it. He was sweating all over, fidgeting and crying excessively. I have such a hard time leaving him while he is awake and no matter how much I rocked and tried to soothe him he just would not fall asleep. When he finally settled down for a while I put him back in bed, changed his diaper, and swaddled him. He was upset at first, but I think he just tired himself out because he fell asleep shortly after. I quickly made my getaway while he was comfortable. One positive is his vitals didn’t change too much while he was crying so hard. He was even able to keep his oxygen up. So please pray that he is able to make this transition quickly and painlessly, and pray for Jonathan and I as it is extremely difficult to watch our baby in agony.

To leave you on a good note. Both the cardiologist and the nurse practitioner that works with the surgeon came by today. They both said that from their perspective he is doing really well. So, from a heart standpoint Beckett looks great! The cardiologist continues to say they believe he will outgrow the issue with his fast heart rate. So, as there is always a possibility something else could come up, we are moving on to working through the withdrawal, feedings/growing, and coming down off the oxygen. All big tasks, but nothing Beckett can’t handle, as he has shown so many times already. He truly is such a sweet baby, and has been so much more alert and interactive the past few days, spending a lot more time awake. We enjoy the moments of just being able to be with him. Today was nothing beyond what was expected and we pray for many more days of the same. — with Jonathan Rupp at st Vincents womens hospital.

It’s amazing how something as simple as rocking my son to sleep can bring such joy to my heart. https://heartofbeckett.com/ — with Jonathan Rupp at St Vincent Womans Hospital.

UPDATE (2/3/13)

Better afternoon than morning. So, as Jonny mentioned in his post this morning Beckett was having a little trouble breathing when we first arrived. His oxygen was fine, but he looked as though he was working harder to breathe than he had been when the nurse first began her shift. They made multiple adjustments including, turning up the flow on his Vapotherm and putting his chest tube to suction. She also gave him a rescue dose of morphine. All of these things combined seemed to really help him, and before long he was resting comfortably. THe respiratory therapist put him on his tummy after his treatment to also help his lungs and he absolutely loved it. He slept that way for a few hours He was awake for a good amount today, completely wide eyed and looking around. He also seemed to really focus on the mobile once he saw it spinning above him. It was pretty cute just to see him stare at it. We also got to spend some time tonight just enjoying holding him, which I can never get enough of. Jonny makes fun of me every night because I have to say goodbye like five times before I can leave. It is still so strange to go at night and not take Beckett with us. One day soon. So, overall, Beckett had a good day, which we are extremely grateful for. We pray for good days to continue.

As you may know, Jonny’s mom has also been staying down here. She has said all along she was staying until Beckett was in the NICU, which now he is. So tonight she went home and will return on the weekends. She will be missed. Our families have been such a huge support and we couldn’t have done this without each and every one of them. The same is true for all the friends who have come alongside us during this time. The journey is far from over, and we are glad you are walking this path with us. — with Jonathan Rupp at St. Vincent Women’s Hospital.

UPDATE (1/31/13)

IT’S GRADUATION DAY! Beckett is moving to the NICU!!

UPDATE (1/30/13)

Beckett has had a pretty decent day. Much like last week there is talk of moving to the NICU, possibly as early as tomorrow afternoon. We have basically adopted a we will believe it when we see it attitude since plans change so quickly around here. They had switched one of his IV heart meds to oral yesterday, and it has been dropping his blood pressure about 30 minutes after he gets it. He has been recovering on his own, but they are watching to see if the dose needs to be changed. This may possibly keep us here for a few more days. Again, we wait. For the past couple of days the nurses have thought Beckett has been pretty sleepy, so today they both decreased his methadone dose and increased the interval at which he gets it. He has been more awake today, but that also led to what is likely more evidence of withdraw such as: increased crying without calming, diarrhea, sweating, etc. He is typically very relaxed when I hold him, but tonight he kept getting upset every so often. The nurse did end up having to give him a rescue dose of morphine to ease the pain, which is typical for acute withdrawal. He then settled down and fell right asleep. So it may need to be addressed in the morning and more changes made to help avoid him having this issue. The other main event today, Daddy had to go home. Jonathan starts classes again tomorrow so he went home for the next two days. Please be praying for peace while away, and that he is able to focus in class without worry of what is happening here. I can only imagine how difficult it is for him to be away as I refuse to leave the hospital at this point. Please continue to pray for Beckett’s restoration to complete health. He has come so far in his one month of life, but continues to have a long journey ahead. As always thanks for all the prayers and support for Beckett and us as well. God has truly blessed us with family and friends he knew we would need in this very situation. We will never be able to express our gratitude.

https://heartofbeckett.com/ — with Jonathan Rupp at Peyton Manning Children’s Hospital.