February 24, 2013

UPDATE (2/24/13)
The last two days have had both good news and bad news. I will begin with the bad news so we can end on a good note. For the past couple of days Beckett has been having trouble digesting all of his feeding. He was getting a feeding over an hour period and then would have two hours before his next feeding. Before each feeding, they check what is called a residual to see how much is undigested. Beckett has never had a problem until last Thursday. He had one feeding where he had a small amount of residual, but it only occurred that one time. Starting Friday night, he had a large residual before one feeding, and continued to do the same all through the night. He also vomited a significant amount after one of his feedings. So, Saturday morning they ran a bunch of tests. They checked his blood for signs of infection and did an x-ray of his abdomen. Everything came back normal, so they began giving him his feedings over two hours, thinking maybe he just needed a longer time to digest. Then last night he was still having an issue so they did an x-ray again just to make sure nothing had changed. They now expect to have some residual since the feeding is longer so they actually aren’t checking that at this point. However, both yesterday and today Beckett has also thrown up multiple times. He typically seems to look and act better afterwards, so we are glad he is getting it out, but wish it wasn’t happening at all. Side note, when he vomited on Friday night, we had just given him a bath and put on clean clothes for his Facetime debut at the benefit in Gaylord. He started making a face like he might throw up, so I quickly said something to the nurse. The second she put the cloth diaper under his chin, out it came. Quick draw McGraw saved the day. Nice catch Jaime!
Early last week my mom and I were talking about how unsettled Beckett has been. He doesn’t seem to sleep as well, arouses easily, sleeps for short periods of time, his resting heart rate has been higher, he was fussier than normal, and then to add the digestion problem. They thought this was possibly due to withdrawal, but he seems to be tolerating that well. As I mentioned in a previous post, I was having trouble with my milk supply so have been looking in to tricks that may help. One thing I was told was to drink hot tea. About a week and a half ago I began drinking tea all throughout the day, and even increased the size of cup and amount of bags on Thursday. After researching and praying, I have come to the conclusion that the large amount caffeine is affecting Beckett’s digestion as opposed to him not being able to tolerate feeds over an hour, since before he was having no problem. Now, I am not a doctor, and I have no scientific expertise to base this off of. However, I have a mother’s instinct and believe God has confirmed in my spirit to stop drinking tea at this point. I spoke with the doctor and a few nurses today and according to them it is a possibility. The only way to prove or disprove the theory is to stop drinking it, which I have done, so I pray we see a change, more specifically an increase in tolerance without vomiting, within a few days.
Today I came to the room and there was a sign on the door to speak with the nurse before entering and had pictures of a gown and gloves. Being a nurse I knew immediately Beckett was now in isolation, but what I didn’t know was why. When I asked the nurse she informed me Beckett has MRSA. For those of you who don’t know, MRSA is a bacteria that is resistant to a lot of antibiotics. It is easily acquired in hospitals and places of communal living. In the NICU they swab every baby’s nose weekly, and Beckett’s last week was negative. The swab that came back positive was from the wound at the top of his incision. This means Beckett’s infection is localized to that area and is not throughout his entire body. While it would obviously be better for him not to have it at all, it is good for now that it is contained in his wound. Beckett would be at greater risk should it enter his blood stream because of his shunt and his blood clots, as bacteria stick to these things and would be extremely difficult to get rid of. If it were to get in his blood it would become very serious. So, they are putting prescription antibiotic ointment on the wound, as well as his nostrils and butt per protocol. They also put in an IV and started him on at least a ten-day course of Vancomycin. They are treating it aggressively to knock it out quickly. Putting in the IV was quite the ordeal (wishing he still had that PICC), and Beckett was drenched in sweat, but thankfully the nurse was successful on the first try. The actual wound area is looking better and has had significant decrease in drainage. They are doing an ultrasound of the area in the morning to make sure there is not a pocket of fluid collection that would need to be drained. This would most likely require taking him to surgery and opening the area up to let the infection drain out. We pray that there is no abscess and that the procedure won’t be necessary. We also pray the antibiotics work effectively and the MRSA will not spread throughout his body.
Now for better news. They turned Beckett’s Vapotherm down to one liter yesterday morning and took him off it completely today. Unbelievable, and such a huge step for Beckett. He is now on a simple nasal cannula and has been doing great all day. He is so close to being off oxygen all together. If he continues to do well hopefully it will only be a few more days. I didn’t tell Jonathan, so when he walked in this afternoon it was a wonderful surprise for him. The respiratory therapist also helped me take some pictures when she was making the change since he didn’t have all that stuff on his face. It was amazing to see him with just his little feeding tube. It didn’t even look like the same baby. Still cute as ever though!
They will also most likely wean Beckett’s methadone tomorrow. They did have to give him a rescue dose of morphine on Friday night, but looking back I think it was more related to the caffeine than actual withdrawal. Hindsight is 20/20. But if he continues to do well he could be off methadone within about a week. More great steps forward.
Another really special thing happened today. My dad was sick when Beckett was first born, so while he came to the hospital the night of his birth, my dad did not hold him. After everything that transpired my dad has not yet had the opportunity to do so. Until today! My dad held his grandson for the first time. It was such a special moment for me to see my son in his arms, and it brought tears to my eyes. Beckett loved it and fell asleep so peacefully. I was so glad it was finally able to happen for both of them.
I have really struggled the last few days. I have been overwhelmed and sad for Beckett, and it has felt like nothing but bad news. I just can’t help but feel he can’t catch a break. But it hasn’t been all bad news. They keep telling us two steps forward one step back. I am holding on to all of the positive things that happened this weekend. Even in the midst of steps backwards, Beckett has continued to move forward in other areas. God continues to ask us “how much do you trust me?” That is so hard, and we continue to do the best we can. I think it is only natural to have weak moments. But, tomorrow is a new day!
I also wanted to say a quick thank you to all those who were involved in the benefits this weekend. That means everyone! Those who planned, attended, gave, spoke, organized, etc. Everyone! It is extremely overwhelming and genuinely humbling to be showered with so much love and support. We appreciate each and every one of you. Words cannot describe. So I leave you with thank you, and that will never express enough!
— with Jonathan Rupp at St. Vincent’s Womens Hospital.

2 thoughts on “February 24, 2013

  1. Ryan Hoverman says:

    Hi – I just heard about your story – my brother/I grew up with Jonathan in Archbold. My wife’s cousin had a son with a heart defect upon birth that is now 18 and doing awesome! They now volunteer with a group called the Children’s Heart Foundation – the group could be a resource if you want to connect with other families that have gone through this or even specific doctors doing research in the area. http://www.childrensheartfoundation.org

  2. Sharon Grandstaff says:

    You and Jonny are amazing parents So glad that Beckett is doing better. You don’t need to be a doctor, you’re a mother. Smart doctors will respect a mother’s instinct. It out rules doctors all the time. You are loved and supported by hundreds of people. I’m so glad the benefits went well and will serve your family well.

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