Post-VEPTR and no folks, that's not plural

It's 9 days post-surgery. And we are home. And that is a wonderful thing. For those of you who want to know what the surgery experience is like, read this. For those who don't, don't read this post. It's not horrible or full of gore, but it's not particularly pleasant either.

This is what our week was like. Monday we arrived in Philly. We had to go to the hospital for a 3D chest CT scan. Basically the terms under which we were there having the CT Scan were: If there is no CT Scan, there is no surgery. And we cannot sedate him because Owen has centralized apnea and therefore must be put under general anesthesia and monitored. And my terms were: no general anesthesia period. He is having surgery in the morning and we aren't putting him under 2 times in 2 days. No. Their return terms: We aren't going to perform the CT Scan if he so much as moves or cries. And my return terms: Oh yes you are. So it was a tense situation. But a little help from benedryl (with permission of course) and Owen took a well-timed nap and we got the CT Scan done. I literally sweated through it, but the relied we felt when it was over was immense.

Monday night, we went to the hotel and played. We went out to dinner. We tried to show Owen a good time.

Tuesday morning at 4:30 am, we wake up and Owen is on to us. He can see that we are anxious and he is anxious too. We get to the hospital for 6am. We are called in at 6:30 and Owen is given some medicine to calm him. They should give the mommies that medicine. Owen was now fine, but we were scared. We met with the docs and the nurses. We went over everything with each one of them. And by 8am, they took Owen away.

We went to get coffee. And we met up with one of the moms I had been talking to whose son had VEPTRS placed the previous Tuesday. That kept us going. Meeting her and her son gave Nick and I such hope. It was one week later and they were both in the cafeteria, he was smiling, gave us a high-five and he was straight. It was amazing. We felt a little better.

Surgery took 7 hours total- 2 of which were positioning and prepping. At some point they came out and told us that due to O's extra tissue (facia- which is comparable to scar tissue) it was a very difficult surgery and they were only able to the complete the left side. He was under for along time at that point and to start working on the right which would have taken about as long would have been too dangerous. So we have to go back. I am disappointed that we have to go through it again, but of course, what's safest is the best. I just don't know how I am going to look Owen in the eye next time. Safe to say, I am not getting the mom of the year award from O. At least not while he and I cannot have an intelligent conversation about why we are doing this.

When we got up to the ICU, Owen was having a little trouble breathing. They thought they would have to intubate him again. They took some x-rays and he had some fluid in his lung. We waited and they decided to let him breathe with just the help of some oxygen and see if it would work itself out since he was saturating okay.

The first two days were hard. He was hooked up to 5 machines. He had a central IV line, an arterial IV line, an IV in his hand. He was on morphine round the clock. He had a catheter called an OnQ for pain near the incision site. He was on oxygen. He had a huge dressing on. He was pale and puffy and could barely cry due to the intubation. We watched his heartrate and his oxygen levels constantly. He wouldn't make eye contact with Nick or I. He couldn't poop. It was not nice. It was miserable. The hospital was amazing. Their ICU was incredible. Owen had a nurse to himself. He made a peep and she was in our room over him. I didn't even change a diaper because by the time I checked it, she was in there and it was done. I felt helpless and was thankful that someone knew how to take care of him. I couldn't hold him or move him. I just kissed his forehead even though he would not look at me.

On day 3 he was still retaining too much fluid. It was around his heart and lungs. They had to give him diuretics to help him. At one point, they took his oxygen out to see how he would do and he immediately desaturated, turned bluish and vomitted. It was still a touchy situation.

Day 4, he saw his brothers. He talked. Even smiled. Still a lot of pain.

Day 5, he smiled some more. He touched his toys. He talked a little more. Still pain. They were able to take his O2 out. We were moved to the surgical floor, no longer in need of ICU level care.

Day 6 he turned a corner. He kicked his legs, shook his head no, smiled, touched his toys. Laughed at Elmo. Played peek a boo.

Day 7, we were both so ready to go home that Owen was a star for the nurses and we were discharged. Thank the Lord above.

These last two days have been good. There is still some pain and now a cough, which usually happens after he is put under. We are taking measures to help it go before it turns into pneumonia.

We are post-VEPTR. And although we have to do it again, the fear of the unknown will be a thing of the past and we will know what to expect and how to deal with it. It will be no less hard, but we will get through it.

I have to go now, but I will write a post over the weekend about the pretty amazing people we have around us and all they did while we were away. We love you all and owe you a tribute!

Thank you for the prayers and support everyone. We wouldn't have made it through this without everyone being behind us.

Owen's splints

There were a couple of moms recently that were exchanging pictures of splints so that they could show their OT's what some people use. I realized that I have a box full of Owen's splints from about 3 months old. I got rid of earlier ones just because we had gotten new and I didn't realize it might help others to show them. So these are the ma many splints of O.



These are his hand splints. These were his third pair.



One of his knee spints.



This is also a knee splint. The odd C shaped side was to accomodate his cast at the time and also work the hips.



This is an elbow. These were really successful. Owen's elbows are in good shape!



Feet with bar for hips. Owen's feet are different because one is a clubbed foot and one a vertical tallus. They are not able to treat them both the same, so a traditional Ponsetti brace was not used. This baby was heavy metal. I kind of liked the industrial look!



This is O's whole body brace. This was for the scoliosis.



The big box of splints!

To cast or not to cast...

Prior to O's surgery, they had to take his cast off the clubbed foot. He has never been so full of joy. He spent the last week kicking, rubbing, and moving that foot. Everyone who saw O last week mentioned it. He was happy as a clam.

Yesterday, he had a cast put on. He was so so sad. Just sad. He cried and looked miserable and stared up at me with those big brown eyes. It broke my heart.

So I started to think. His feet will need another tenotomy. This time she will do it under anesthesia. She wants to correct the club foot at the same time she does the surgery for the vertical tallus, which is great because we only get anesthesia once. Why should he have to spend the next 4-5 months in a cast while we wait until after the VEPTRS to fix it? We shouldn't.

However, this means that Nick and I (and the therapists, nurses, friends and family) will all have to stretch that little foot, A LOT. I am talking about, if you touch him, you stretch him.

He is casted now and will have one more cast next Monday. Dr. F will let me know when I can soak that cast off. Thereafter, I will take pictures of his little foot to show all of you our progress over his free time.

Now that his spine is untethered and things are a bit more loose, we really have the opportunity now to correct his foot and maybe casting can be minimal this time around. If you saw how happy he was without a cast, you would know that the work will be worth it. He loves his knees! He loves to rub his feet together. He hates his cast.

I will keep you posted on how our home program goes.

The game changer

Owen is my game changer and my eye opener to how some people, including myself, live with children with special needs, or with ill children or even adults in similar situations for that matter. It changes everything. I once took for granted that all I had to worry about was whether I could pay my phone bill on time. I worried about all the "normal" things. Bills, work deadlines, keeping the house, so to speak. I thought I understood, being a mom and being a working mom, what stress was. I did not. My life was not stressful before. Even if I behaved as though it was because I had to work and juggle one child and deal with the house. I had no idea.

Now I worry about things like anesthesia. I worry about wheelchair access to our home. I worry about surgery and whether or not Owen will walk. I worry about his lungs. He has a runny nose right now with some congestion. If this moves into his chest, it could be a problem. I worry about medical bills and whether or not our insurance will cover it. I worry about medical appointments and how to fit them into my life as a working woman. I worry about making Owen gain weight.

And I worry about the normal things. The regular bills, work deadlines, if we have enough money for things. I worry about work and medical appointments. I worry about Caleb. I worry about Gavin. I just worry.

Part of that is my nature, the part that allowed me to worry about things like "keeping the house." The other part is now a real reality. I was reading my news feed on facebook. Every other post was from someone who I am now friends with because they have a special needs child with a condition similar to Owens. Between their updates there would be updates like "I can't decide what to have for lunch" or "FML, work sucks." I am not knocking those people. Work sucks and you don't know what to eat. Understandable situations. But now, what I read between those posts now are things about trach tubes, spine appointments, casts, and respiratory issues. And I realize that this was a game changer. Life went from 'I don't know what to cook for dinner' to casts, respiratory issues, and spine appointments. Not just for them, but for me too. I am one of them now. Owen is. We are as a family.

I am new to this. They have years under their belts. As I cried this week about Owen having to be put under and deal with all my fears regarding that and the "what if something goes wrong...", I realized that they have been through this a million times already. I felt sick the other day as we are discussing our upcoming surgeries and the order in which we will have them. We talk about Owens little body as if its a project or a puzzle to be done. I cried for Owen and all that he will go through. And their kids have already gone through it. The surgeries, the hospital stays, the recovery.

Life is different now. Seems so silly to have been such a worrier before. Seems like such a waste of time.

October Updates...

I figure I better update, before its November and I have lost sight of October. (See my previous entry). Anyway, so this month we have had our meeting with the nutritionist, a barium swallow test, a new dietitian (I will explain why we have a nutritionist and a dietitian shortly), a pre-anesthesia appointment, a meeting with the orthopedist and an upcoming pulmonology meeting.

Basically, the nutritionist and I met a couple of times and she suggested that my child is hungry and that I am not feeding him enough. I brought him to her office when he was hungry on purpose. I timed his feeding so that he would take his bottle in front of her so that she could observe his eating. I journaled his food and bottle intake for more than a week. I charted other Escobar kids weight gains from birth to 2. And stupid me, apparently. She took his hunger to mean that I was not feeding him enough, that I am clearly not giving him what he needs and explained that since he is so hungry he is expending energy being hungry which is burning calories. In addition, she explained that feeding tubes are easier and could not understand my resistance to such an idea. Where to begin with this woman. First of all, Owen is not hungry. I am not even going to explain how much he eats because I refuse to feel like I have to explain myself here. He eats, he is not hungry. End of story. She refused to listen to me about how he gets exercise from therapy, he cries the entire time and he has Escobar, which all could contribute to his lack of weight gain. She put my chart in a folder and gave me back my food journal. No other consideration was given to reason. The answer has to be that I don't feed him enough. When I suggested an increase in his formula to water ratio, she said that wasn't going to help. When I suggested duocal, a supplement that bumps up the calories, she said that wouldn't help. And when I explained to her my feelings on feeding tubes and why I did not think that was the best option, she said I seemed a little excitable. I smiled and left. We no longer have appointments with her. The last thing I need are doctors that are making me excited.

The only reasonable thing she did do was order a swallow test for Owen. As I suspected, Owen swallows fine. I may seem a bit "know it all" here, but honestly, Owen is my job right now. I take knowing his situation so seriously that I do know A LOT. I do not know it all. However, when you are unwilling to do the research, or even listen to what I see and do every day with this child, its clear, I know more than you and we will not be continuing our relationship.

In the meantime, Early Intervention cleared us for a dietitian. She came over to the house and you should just hear the things that Owen can eat. Butter or olive oil with every meal. Condensed milk, ice cream, heavy cream, avocado, whipped cream. He may have mashed potatoes with cream and butter. He has a diet from heaven! Seriously, its felt very unnatural to feed him this way and I asked her if I could potentially be setting him up for a heart attack later. She assured me that I wasn't and that babies need much more fat and our goal is to get them to double and triple their weight in the first year. So I relaxed and now Owen is smacking his lips at his rice cereal, chicken, and sweet potatoes topped with melted butter. And he was weighed yesterday, between his 6 month check up and now he has gained 13 ounces, so I am suspecting by next weeks pediatrician appointment, he will have gained a pound!

As for orthopedics, his foot is recurring and that's not good. She suspects its the tethered spine. A long time ago (June) when we had a full-body MRI for Owen, they said he has a borderline tether. In light of the way his foot keeps recurring, she is pretty sure its tethered and it will have to be released in order to continue to fix his feet and for them to remain corrected. This will also have to be done prior to the VEPTR surgery which they think will happen in December of next year. We will get confirmation of the spine at the MRI in Philly, at CHOP on 11/2.

And lastly, we had our pre-anesthesia appointment yesterday for the MRI. Owen has to go under general anesthesia for the MRI and because of the apnea, he will have to be intubated in the OR, they will bring him to the MRI. He will have the study. They will bring him back to the PICU and then we will stay overnight for observation. They have to watch the breathing because of the lungs. So another overnight in Philly. I hate that we have to be away from Gavin and Caleb, but better safe than sorry.

Ok, that's all I got for now. More updates to come!

Another week under our belt

I have to say, I am thrilled this week is over. We had lots of appointments and the surgery of course and I am so glad its the weekend. Owens healing so well from surgery. His cut is thin and looks great. Owens testicles are undescended (I am sure one day he will thank me for putting that on the Internet), so they surgically brought one down when they did the hernia as well, so those stitches look great and he seems to have no discomfort.

This week we also had our neurology appointment. I was afraid of this appointment. The pediatric ortho had mentioned that due the fact that Owens feet are asymmetrical, one bending up and one bending down and under, that there may be a problem with his spine. After meeting with the neurologist, I think she thinks they will find something as well. Owen has some dimpling at his joint contractures. Dimpling may indicate that there is a deformity in the spine. So we are going to have a full body MRI to see what is going on. The neurologist was very happy with the sensations in his feet and legs, the fact that he can feel is good. He has good reflexes and he has strength in his legs and feet, as well as in his arms and his grip. All of these things are good for his chances at mobility later in life. I cannot wait to have the MRI and just know what is going on in there. It will also tell us if his brain looks normal. I think his brain is normal because of the way he looks at me and follows me and because I just do. I can't explain how or why I think a 6 week old has a normal brain, but I do. I guess I will definitively know after the MRI.

We had a really good hearing appointment. Owen can hear out of both ears. His nerve is perfectly normal. He has some fluid or possibly a smaller space in his right ear that may be making things a little muffled for him, but she said a little help from the ENT and he will be able to hear us perfectly. It felt great to have a good result.

By Thursday, I felt like we were finally checking things off the long list of things to be corrected. Hernia- check, hearing- check, right testicle-check.

Friday we had OT, PT, Ortho and Pediatrician appointment. PT and OT were great. Owen may not love being stretched, but when he is done, he is long, straight, loose and feels completely different to hold. He bends. I try to do what she does at home, but I just do not acheive the same result. Maybe its the amount of pressure or placement of her hands or just knowing what you are feeling for. Needless to say, I try and hopefully, he is getting something out of it. As for his feet, both are attempting to revert back to what they were, however, we have been trusted to continue to stretch them and wait to cast again. We will have another round of casting, another tenotomy and more braces. Its an ongoing process. Owen hates having his feet stretched and he cries the whole time. As you can imagine, this is not motivation to do it for a million hours a day. I wish there was a way we could explain to him. Instead, it feels like we are just hurting him. I need to toughen up or get thicker skin. If I did not do it and one day he could not use his feet, he would probably ask me why I didn't do it. So we keep on pushing.

We were told we just got approval for our genetic testing for Escobar Syndrome. If any of you have googled Escobar, you may find that what you read is really terrible. There are things about progression and respiratory problems and death. I have met with our genetisist and asked him about these things. I am told, by him, that the progression usually refers to the scoliosis. Some kids with Escobar are born without scoliosis, so it progresses and can cause respiratory issues. Owen was already born with the scoliosis. His lungs are used to breathing like this. Not to say that it could not get worse, however at this time, we are not worried and neither is anyone else. Sometimes the internet is not a friend. The one thing I can say is that with respect to the symptoms that come with Escobar, Owen has the majority of them. I would imagine that we will be told that is what he has. The genetist thinks so and so does the neurologist. We shall find out soon enough.

Caleb is good. The reflux is better sometimes now that he is on the Prilosec. But most importantly in Caleb news... he started smiling! Not smiling when he has gas either, but actual look you in the eye, smile. He smiled at my mom first, but today, he looked at me and gave me a big smile. It was so damn cute. It made me so happy.

Gavin is good too. We got his kindergarten graduation outfit this weekend and he has been riding his bike like a madman. Aunt Beth is in town helping us, so he is making her play all different types of games with him and she is indulging him for now.

Next week we will make appointments for the MRI and the eye doc and we have thyroid testing, OT, PT, ortho and our early intervention PT evaluation.

Hope everyone has a great week!