Working back toward normal

The last week and a half has been wonderful, challenging and scary depending on the moment. We came home from the hospital last weekend and were thrilled to be home, but having Torsten away from doctors and nurses was also a little overwhelming. We were and have been closely watching his incision, keeping track of his bladder and bowel function, keeping a notebook with the times he's been given any of the 5 medications he's on and were taking his temperature every couple of hours.

For the most part, Torsten has done great. He's been such a trooper and has not cried much, but instead has mostly picked up his normal activities where he left off. However, we started noticing a low-grade and lingering fever early last week, which wouldn't usually be concerning, but was strange since we've had Torsten on fever-reducing pain relievers around the clock. Around the same time, his incision started looking a little rough. It has re-opened slightly a couple of times at night, but has closed and dried back up by morning. We've been in very close contact with the neurosurgeon's office and have been given the guidelines for when to go to the ER, which we will avoid if at all possible. We're just being extra cautious until Thursday, when we return to the surgeon's office for a check-up.

For now, we've stopped giving Torsten sponge baths, since they seem to severely irritate his incision and hurt him more than they're worth. He'll be getting a good wipe-down every night, but nothing more. We've also stopped trying to cut back on his pain meds for the moment and are keeping him on ibuprofen and tylenol during the day and hydrocodone at night. Torsten was in a lot of pain two nights ago - we couldn't lay him on his back and had a hard time finding a way to get him comfortable. It was terrible to see him so upset and hurting so badly, so we're not going to push him quite yet.

All things considered though, Torsten is truly doing fantastic. He's such a happy baby that we have to remind ourselves that he had fairly major surgery less than two weeks ago. We're looking so forward to him being completely healed and putting this whole ordeal behind us. We know it's coming soon and are very ready! Thanks again to everyone for your amazing love and support!

Torsten's new wheels - he LOVES them!

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!

Cleared for takeoff!

Since coming home from the hospital, Ryan and I have been closely watching Torsten and trying to isolate any triggers for his episodes. We've noticed that they seem to happen more often when his legs are moving. He does a "happy dance" both when he's eating and playing, which is when he seems to have the most episodes/spasms. Ryan held his legs while Torsten was eating and that seemed to both slow down the frequency and lessen the severity of them. We now believe there is a chance that this could be nerve related and possibly linked to Torsten's spinal issue after all. We left a message for his neurosurgeon on Thursday morning to discuss everything that's happened in the past week and are still waiting to hear back from her. It's been our experience that her assistant isn't the best at relaying messages, so our pediatrician will start texting and calling the surgeon directly if we haven't heard back by Monday. :) We love his pediatrician.

Even though Torsten is still having the episodes, they have slowed back down and are not nearly as severe as they were earlier in the week. We're still working to figure out what's going on, but are glad that he seems to be going in the right direction and that we've ruled out the most dangerous possibilities.

On another positive note, we just got the final clear from the pediatrician last night for Torsten to travel. He and I have been planning to fly to Illinois to visit my family next week, but weren't sure we would be able to make it. We're looking so forward to seeing everyone and are starting to pack up the warmest baby clothes our little southern boy has.

Even though it's been a long week, we've been so amazed at the strength, bravery and positive attitude of our son as well as the outpouring of love and support from our friends and family. Thank you all again!

We're all ready for Illinois!

We're home!

We just got home from Children's and are thrilled to be here! Although we wanted to stay until they figured out what exactly is behind Torsten's episodes, they've ruled out the most dangerous options, so there wasn't much of a reason to stay another night.

The results of the EEG from yesterday were normal, so we only had blood work and an MRI done today. We did not have to do the spinal tap, which we were thrilled about. We're still waiting on the results of the blood work, but in general, all tests came back normal.

Before leaving the hospital, we were told several things:

• Not finding anything significant on the major tests is good news since it rules out full seizures, epilepsy, etc.
• He may continue to have the episodes, and if they get worse, we are to go back to the hospital immediately.
• The doctors are concerned about the rapid growth of Torsten's head + the overall size compared to the rest of his tiny body. They will continue to monitor this.
• We will continue to see a neurologist to monitor his progress and will also see Torsten's pediatrician in parallel.
• It could take months or sometimes longer to diagnose such issues. Sometimes the only way to figure it out is to watch him develop with age.

Since getting home, we've had several episodes, but nothing worse than what we've been seeing, so we're just trying not to worry. 

For today, we are just very happy to be home. We may all finally be able to sleep longer than a few minutes at a time! And now it's time to disinfect everything that was dragged through the ER/hospital...

Thanks so much for all of the sweet calls, texts and emails. We're again blown away by all of the love from our friends and family!

Lots of love to you all,

Ryan, Tasha & Torsten

Spasms

It's been a long couple of days. For the past week or two, Torsten has been having little spasms. Because they were minor and very rare in the beginning (1-3/day), we didn't worry and passed it off as gas or some other small form of discomfort. However, over the past few days, they have picked up in frequency and have gotten drastically worse (by the end of yesterday, he'd had >50). I texted Torsten's pediatrician early yesterday afternoon to tell her what was going on and to ask for her to call me when she had a second. She told me that she was out of town, but wanted him seen immediately by another doctor in her office.

We went into the pediatrician's office later in the afternoon and had him checked out. Luckily, I had recorded a couple of time periods at home to catch a video of what was happening. After showing this to the doctor, she said that she wanted us to immediately check in at Children's. She tried to get us directly admitted, but was told that with possible seizures, the risk is too great and we'd need to come through the ER. To make a long story short, we sat in the ER from 7pm-2am, when we were finally transferred to a regular room. We were all exhausted and got a little sleep here and there when we weren't being woken up by nurses taking vitals and checking in.

Today has been full of doctors, nurses, specialists and testing. We met with a group of neurologists early this morning to discuss the next steps. They told us that we would need to have a battery of tests done to try to diagnose the problem. These include urine and blood work, an EEG, MRI, sono and spinal tap. We knocked out the urine, part of the blood work (they need to take too much for one day + his veins weren't cooperating), the EEG and the sono all today. We don't have any results back, but should hear from the neurology team later tonight. They have told us that if the EEG results are good, we may not need the spinal tap, which would be wonderful. One less invasive test...

We're sorry that we haven't called everyone to tell you what's happening. This all happened very quickly and we've been running from one test to another all day. Torsten has still been having the spasms most of the day and they seem to have increased a bit later this afternoon. We're confident that the doctors here will figure out what's going on and that we'll hopefully be home in the next day or two. We'll post updates as they become available.

Lots of love to all of you from myself, Ryan and our little warrior!

Fully connected, but still smiling! He liked when the nurse started washing his head to get the stickies off. :)

Genetically inclined to be a baldy

We went to see the geneticist today. He is a very sweet, scholarly, bearded grandpa-like man that asks a lot of questions. The very good news is that he didn't immediately conclude that there are any links between all of the issues we've seen with Torsten. Which is great because the immediate links that he could recognize would not be good news for us. We were hoping that these issues were purely coincidental, unrelated to each other and not a sign of more surprises to come. So far it looks like we're getting our wish.

Surprisingly though, he wants to do more research on Torsten's baldness. He believes there is a possibility that it's more than just hereditary baby baldness. He also believes that quite a few of the issues or oddities that we've experienced are likely related to the tethered cord and that they could begin to solve themselves after his surgery next month. We hope that he's right and are already looking forward to having the surgery over so we can move forward.

After discussing everything about Torsten's life so far, he told us that he'll do some research and will write up all of his findings and get them to us and to the pediatrician asap. We'll look forward to reading his report, but don't believe there will be anything shocking or terribly negative in it.

In other news, we have a very fussy (screaming) baby on our hands at the moment. I randomly checked yesterday to see if it felt like he would be getting any teeth soon and one had just started poking through. Poor kiddo. Our happy baby has been (at least part of the time) hijacked by a crying, teething grump. But we're stocked up on infant Tylenol, Ibuprofen, Baby Orajel, frozen washcloths, carrots and waffles and plenty of wine (for our sanity), so we'll hope this tooth makes its full appearance sooner than later!

All patched up

Torsten slept for 2 days after his eye surgery. Then he stayed awake for 2 days and 2 nights. Since he was barely sleeping at all, we talked to a nurse at his pediatrician's office, the surgeon and the anesthesiologist. They all said to get checked out by the pediatrician since he'd had such a difficult time waking up from anesthesia and also just to make sure that nothing was seriously wrong. After seeing the pediatrician last night, we were told that Torsten is healthy, but is still hanging on to some of the effects of the anesthesia. She said that things should start to get better and to be patient. She was right - last night was a little better and we did get a little sleep.We're hoping that we'll get a little more tonight.

We also had a follow-up appointment with the surgeon this morning. He was thrilled with Torsten's progress and thinks that his eyes look great. We discussed the fact that his left eye is not tracking exactly with the right and were told that Torsten will need to wear a patch over his good eye for an hour each day for the next six weeks. We thought that Torsten would hate the patch, but he didn't seem to mind and handled it great. We'll see how long that lasts!

We have an appointment with the geneticist on Feb. 11th, then testing with the urologist later in the month. Other than that, we'll just be enjoying every day with our little guy until our next round of appointments and his surgery in March. Again, thank you all for the sweet messages and for your care and concern.Torsten is doing great and appreciates all of you!

Our adorable little pirate