This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
Apologies in advance: this is a long one. It includes both a CaringBridge post from my sister and a blog post from me, both written on May 4 (which we now celebrate as my youngest nephew’s birthday!).
Samantha got out today! Okay, ‘out’ is a relative term in that she got to go to an infant music class with mom and dad on their floor in the hospital, which she slept all the way through. But we are glad for the opportunities that are placed before her and the health and healing taking place that allow her to be ‘out’ and enjoy this. She also got a mobile and bouncy seat today (they belong to the hospital) and she LOVES the mobile. She laid and watched it for an hour today and is very peaceful when watching it.
Some concerns that Stephanie and Travis have right now is the beeping of the monitors. Beeping can happen for a lot of different reasons, but they visited with the medical team on Samantha’s case about it and with the head immunology doctor. The immunology doctor was concerned that this isn’t passed by, just in case it could be indicating something more that is going on or still going on in Samantha’s body. She ordered some more tests and labs. Samantha is on the schedule for another EEG and MRI – when these will happen will depend, as they did before, on the schedule and the traumas coming in that may push the time back. But hopefully the tests that they have already run and the EEG and MRI will all give good news/results. We continue to pray that the infection has gotten under control, especially as far as the ventriculitis is concerned.
Finally, and this is more long term from now, they are talking about moving Samantha to another facility. Health Bridge Children’s Hospital is a physical therapy/rehabilitaiton hospital for children in Houston. When she would go would all depend on how she is doing and how these upcoming tests look. It would be very exciting for her to be healthy enough to get away from the hospital, especially since the longer she is there the higher the chance is that she could catch something else, but at the same time, a step down can also be scary too.
Stephanie and Travis were also given a lot of information today about all the services there are available to them to help Samantha grow and deveop. She may do some things slower or in a different way, but only time will tell. We are so happy that she is getting all the PT and OT that she needs right now to give her the best start to fight back against this horrible bacteria.
Thank you so much for your prayers!!!!!!
Blog post (original can be found here):
Today was a pretty good day. We got to hang out with some other babies for what they called Wiggle Wednesdays – it’s a baby/toddler music time they do here on Wednesdays. Samantha slept through the whole thing but it was neat for us to see the interaction and learn a few things. Then in the afternoon Nana and Papa (my parents) stopped by to spend some time with us before leaving to go back to Nebraska tomorrow. They’ve been here since late Good Friday (April 22). While they were here, they actually bought a house. Dad is retiring in July so they are moving down here to be near all of us. I guess my wish of having some stability finally came true – family is moving into the area and our daughter will have specialized medical needs that will keep us here for the long haul.
I’m anxious about tomorrow – another EEG, another MRI. The EEG has never been a particularly scary test other than it told us she is having seizures, but the last time she had one it was rather traumatic for both her and me. She was pretty shaken up by the ride down to the lab, and also by the process of hooking her up to the machine. So while they ran the 45 minute test, she cried almost the whole time, interspaced with moments where Travis putting his hand on her helped her to fall asleep. Then she’d wake up and cry again. I decided that when she goes for this test again I’m going to stay upstairs. Travis keeps reminding me that I’m the mommy, it’s ok if I fall apart when I see her in pain or scared. He’s our rock, like I said before, and somehow he can calm her down. He can’t always get me to calm down in the same moment, but he usually can after it’s over.
The MRI has me terrified. I’m so nervous that it will show more damage than we saw a week ago. I’m trying to remind myself that we’ve seen so much improvement in her, but I also know that things could have progressed depending on how much of this infection is under control at this point.
Speaking of improvements, they talked to us today about moving her to a long-term care facility for the remainder of her antibiotic treatment. We know she needs a minimum of 4-6 weeks of IV antibiotics, and because she is so little, it needs to be done in an in-patient setting. That doesn’t necessarily mean a hospital. There’s a place like that exclusively for kids called Health Bridge that she will probably go to. They said it could be as early as Friday, but knowing what has to happen for her to get released from the hospital, we’re both doubting it will be before next week. There are a few issues that have come up in the last couple of days that are being looked into – her heart rate has done some wacky things a few times, so that’s the reason for the new EEG to check and see if she’s got seizure activity still happening. It may require an adjustment to her medication levels. We’re also a little concerned about some things with her urine, so they collected some today and the culture takes 48 hours. The third thing is that she is breathing pretty rapidly when she sleeps. All of these things could be nothing, or they could be something. We’ve certainly learned from this whole process that anything is possible.
Because of the culture being a 48 hour thing, and knowing that it could take them two days to even do the MRI (trauma one hospital so that means ER patients get first priority, then outpatients, then the ones who are hospitalized like Samantha), we know that she won’t be released before the weekend. Health Bridge doesn’t usually take new patients over the weekend, so we are looking at minimum of being here still until Monday. So much of our lives lately have revolved around hospitalization that it doesn’t really phase me anymore – at least being here doesn’t.
Assuming that the monitor doesn’t go crazy beeping with her heart rate or respiration jumping up tonight, we should get a bit more sleep. Because Samantha has to be sedated for the MRI, she can’t have anything by mouth after 2am. So we won’t need to get up for feedings in the middle of the night tonight. Maybe I will actually wake up for the first round of doctors stopping in tomorrow morning! I slept through it the last two days, only nominally aware that different people were coming in to check Samantha or share information with us. Sorry for leaving that to you honey!
Ok, back to this being a good day. A family life specialist came in to talk to us today and encourage us to both play with her in productive ways and also to take breaks when we can. Then they ordered a bouncy seat for the room (haven’t used it yet with her) and a mobile. She LOVES the mobile. This afternoon she spent over an hour mesmerized by it – it has a motor that keeps it turning and it plays music. And it lights up. I saw joy light up her face in ways I haven’t seen in a long time. Most of the time she just stared at it, not looking particularly happy but obviously quite interested. But I did catch a couple of smiles. We did some leg stretches that PT taught us, some tummy time, AND Travis and I had a bit of time out of the room for lunch and dinner. I had a hard time and had to leave the room when they collected her urine sample (it involves a catheter which made her scream). But all in all this was a pretty good day. We have started to figure out some things in terms of what resources are available to us for Samantha, and I have to say that I’m quite thankful we live in this area with all of the medical services.
I know a lot of folks have been asking how they can help, especially people at our church. We will share what kinds of help we might need once we move to the new facility and know better what help we will need there. As far as current needs while we are still at the hospital, the biggest thing now that my parents have left is company. If anyone has time to come down to Houston to hang out with us at the medical center, we’d love it, particularly if you want to share a meal with us. It gets expensive to eat in the hospital cafeteria every day, a few times a day. And I’m sure my sister would love to have someone to drive her down here from time to time as well. I would especially love some company on Sunday since Travis is going home overnight Saturday to preach Sunday morning. I will be on my own here probably until mid-to-late Sunday afternoon.
As always, your prayers are appreciated. I’ve had so many long-distance friends express that they wish they could be here just to give us hugs. Believe me, those hugs and prayers are felt. I wish I could see all of you too. It’s so wonderful having friends throughout the country but it would be nice if instantaneous travel was possible. Heck, then I could go home to throw a load of laundry in the washer and come right back to her bedside while it ran!
I’m a bit tired tonight, so I’m going to sign off and try to relax for a while. Samantha is enjoying her mobile again after a diaper change that made her mad (thanks Daddy for taking care of that!) and we’re watching an NCIS rerun on USA. Hopefully we’ll head to bed after her 9pm feeding.
Next post coming tomorrow.