We're out of here!

After a bit of a bumpy morning, Torsten seems to be doing great. He woke up every 3-4 hours all night hungry and with pain, but after a new dose of pain medication would kick in, he'd be back out for a while. He woke up this morning and nursed normally, but then seemed like he was still hungry/thirsty. We gave him some yogurt and water, which seemed to help at the time. However, he was fussy, didn't have any wet diapers and refused to eat for the next 5-6 hours. He eventually ate a little bit, but his diaper is still dry, so we're going to keep a close eye on both issues.

We also finally got the clear to hold him! After not picking him up for ~30 hours, I was dying for a little squeeze! We had a long family hug on the couch, but then realized that it's still more comfortable for Torsten to be laying flat. He's back in the crib sleeping now, but just to know that we can hold him when we want or need to is a huge relief. 

Since all of his vitals look fine, they were able to disconnect all of the monitors from our little guy. They also removed the IV from the top of his head, so he's looking much more like a baby and less like a mummy. :)

In general, the nursing staff here has been mostly hands-off. I'm not saying that this is a bad thing. If anything, it has prepared us for all that we will be doing once we leave. However, since we are doing everything for Torsten at the moment anyway, we decided that we could just as easily be doing it from home. We met with the neurosurgeon on duty a little while ago and requested to go home. He said that he thinks this is fine and is now working on our discharge for later this afternoon. We're going home!

So we've just learned how to care for his incision, we're getting plenty of pain meds, are keeping an eye on his eating and diapers and are getting our little guy out of here! I still can't say that any of this has been easy, but we've had a lot of time to prepare, other parents that have been through this supporting us and great friends, family and doctors caring for Torsten every step of the way.

I'll try to post another update over the next few days to let everyone know how Torsten is doing from home, but for now, we're just waiting for our walking papers, then are headed home! Lots of love to you all!

Tasha, Ryan & Torsten

Just after having the mummy wrap removed + first time being held in 2 days!

On the bright side

It's been a long day for Mr. Torsten. All of the anticipation and anxiety leading up to this day have been pretty miserable, but on a very positive note, we're on the bright side of the ordeal - the surgery is over. The big event that we've been stressing about for the past few months is actually over!

Even though we're past the main event, it seems like we have a way to go before we're back to normal. Torsten has had problems with pain throughout the day. We had his meds adjusted a few hours ago by the neurosurgeon on duty - they doubled the amount of hydrocodone that he's taking and increased the frequency. Things seem to be going better now and he was actually able to fall asleep a few minutes ago. The doctor also said to let the nurse know if he gets really worked up again and they can give him something to relax. The goal right now seems to just be to keep him calm, comfortable and still. Any stress or kicking around could damage his incision, which would be a huge setback. The hardest part of keeping this goal is not being able to hold him. He's getting upset about it and it's heartbreaking to have him reach out while crying and not be able to just sweep him up. Tomorrow is a new day and we're hoping we get the all clear to hold and snuggle him again. :)

We're thinking that this will probably be a long night. Our "in-room double bed" turns out to be a single and our munchkin has been reminding us fairly regularly that he needs pain medicine. However, the neurosurgeon should be coming by in the morning, and if everything looks okay with his back and his bladder, there's a chance that we could go home. From what we've heard from other parents that have been through this, the surgery is just the beginning and we should settle in for weeks of fairly intense rehabbing at home. We're hoping for a quick recovery, but are prepared to do whatever is needed.

Overall, it's been an amazing day. We may be spending our Friday night in the hospital, but our son's spinal cord is fixed, he doesn't seem to be in pain at the moment, we are watching March Madness from our room and the three of us are together. We have so much to be happy about and thankful for, including our amazing friends and family!

When the meds kicked in

When the meds REALLY kicked in

Recovering

With Ryan and Torsten asleep, I'm finally able grab a seat and jot down a little about our morning. It started early - Torsten and I were up at 3:30am for his last meal and both of us stayed up until we left the house at 5:45. We checked in around 6:00 and were taking care of physical checks and answering questions until they took him back around 8am. The neurosurgeon told us that the surgery itself would take 1-1.5 hours, but that we would be separated from him for 3-4 hours. She finished with the surgery and came out to talk to us a little after 10:00. She told us that everything had gone as expected and there were no problems except that they had to put his IV in his head after trying multiple times everywhere else.

We were called back to see Torsten in recovery around 11:30. He was slow to wake up, but cried a little more once he heard our voices. Not long after, we were transferred to our room on the Neurology floor, where Torsten started waking up a bit more. He hasn't opened his eyes much, but was very fussy and seemed to be in pain. They had already given him stronger drugs during the surgery, so all that they were able to give him up here was a large dose of ibuprofen. Luckily, after about 30 minutes, it seemed to kick in and he was able to fall asleep. He's been in a fairly deep sleep since, which is great. I'm hoping that he'll stay asleep as much as possible today, since he has to lay flat and I can't imagine how I can enforce that on an 8 month old.

My dad is planning to come to Dallas to visit us a little later, but other than that, we have no plans and are not planning to leave Torsten's bedside. They have him on a large soft foam pad, so hopefully that will help keep him still and comfortable. We haven't seen much yet, but it looks like the incision on his back is about 2 inches long. The surgeon was able to put in dissolving stitches, so hopefully that will make it a little easier to care for. 

Right now, Torsten is sleeping like an angel. Hopefully he can keep this up, sleep through the worst of it and we can get home sooner than later.

We've gotten so many messages today and appreciate every single one. Thanks so much to all of you for the love and support.

Love,

Tasha, Ryan and Torsten

Our sleeping angel/mummy

Prepping for the big week

Torsten and I had a great time visiting family and friends in Illinois, but were also glad to get home. He is a great traveler and was an angel on the flights both ways. It was great to get to spend so much time with Grandma & Grandpa Marquis and Torsten and I wish they lived closer. We both got spoiled for 9 days!

Torsten is still having episodes/spasms, but they continue to get less severe and more infrequent. At this point, we're just watching him for changes - the episodes picking back up, changing or getting worse. Overall, things have gotten much better, so we're trying not to worry!

We had Torsten's pre-surgery urology appointment at Children's on Friday. They did a sono/ultrasound and ran urodynamics, then we met with the urologist. The sonogram was easy and Torsten did great. Unfortunately, urodynamics are not quite as simple. They had to put in a catheter, fill his bladder and take x-rays throughout the process. Luckily we were able to stay with him the entire time. While Ryan and I were getting equipped with the x-ray covers, Torsten pulled out the first catheter. The second catheter didn't go in as easily as the first, but after a few tears from both mom and T, we were able to get through the test. Torsten was in some pain and had some bloody diapers throughout the night, but as we already know, he's super resilient and had recovered by the next morning.

The urologist did not see any obvious issues present at the moment. However, we will have to repeat the same tests after surgery, in about three months to check for any changes. He also told us that we will not know for sure if there are problems until we try to potty train Torsten. Then he warned us that, because Torsten is a boy and could have problems with potty training regardless, we may not even get to training for several more years. I'm now wondering what I'll be thinking of cloth diapers when I'm still washing them 4 years from now...

We're now gearing up for the big week ahead. We have eye surgery follow-up with the ophthalmologist and 9 month checkup + shots with the pediatrician on Monday, pre-op at Children's on Thursday and finally Torsten's tethered spinal cord release surgery on Friday. Many of the details are still uncertain, as they can vary greatly from one baby to the next. We will be in the hospital a minimum of 1 night, but hopefully not more than 1 week. We'll try to update the blog as often as possible once everything starts moving.

Thanks again for all of the sweet messages and for your care and concern. We'd be lost without the support of our great friends and family!

Torsten sitting alone - finally!