So I'm sitting at my computer and tears are running down my face. I'm on empty and I still have a hundred miles to go. Tripp has been super crabby the past couple of days and yesterday when I got home from work, I noticed one of his casts has slipped. This could be what the issue is, but with all of his other health problems, you just never know. I feel like I'm constantly over reacting, but then I'm guilt riddled if I don't do something. What if this is the time it's more serious and it's his shunt? What if he ends up back in NICU? So today I called in to work and spent the morning on the phone with various people and will spend the afternoon various clinics. I have to bring Tripp to his specialist in Minneapolis and then to Gillette's to get his casts redone. Meanwhile I feel like I'm a huge disappointment to my work for always having to call in. There always seems to be some medical emergency I need to tend to. I feel guilty because this is the second time I've had to cancel meeting a person to pick up something I bought from them. I don't feel like I can make any plans farther than an hour out otherwise I'm going to end up disappointing someone. Tripp is screaming his head off and Natalie is yelling for him to be quiet so I better go.

Computer, casts, and construction... Oh My!

My computer was out of commission for a few weeks while a friend of Kenny's looked at it to see why it was running so slow and kicking me off the internet for no apparent reason. Believe it or not, I had written a whole post about bringing Tripp home and adjusting to life out of the hospital. I thought I had posted it and everything when- surprise!- it wasn't here when I checked. It didn't save or anything, so I knew my computer was bugged. I'm glad to say that it is running wonderfully now and I'm so grateful to tech savvy friends!
Not only did I not have a computer, I don't have my computer room due to delayed construction on our house. Back in April, Kenny and I decided we needed to convert our deck into a four season sunroom. We found a company and contracted them to do the work. We were told they were backed up and wouldn't be able to start construction until the end of September, first week in October "at the very latest". Yeah. I can tell you how smooth that went. They finally started construction last week. The room we were using as the computer room is now Tripp's bedroom with my computer set on a card table and my desk in our dining room, next to the kitchen table. Things are crowded and cluttered at the moment, making getting back to normal with a newborn even harder.
We were discharged from the hospital October 9th at 9:30 at night. We had to wait until that late so Tripp could be circumcised before we left. After working with geriatric patients for my entire career, I knew that I would want my son circumcised. But after all he had been through, I did not want to cause him more trauma and pain. However, because of the spina bifida, there runs a (high) risk of having to catheritize to empty the bladder and not cause back flow into the kidneys. I was not aware of this as I 1. am not a male, 2. do not work with infants, and 3. did not have another son, but you can not pull the foreskin back on an infant. That would make cathing him a lot more difficult. So, we had to wait until a doctor came on that could do it and then they had to recheck him in an hour because he's a "bleeder". My poor little man. We didn't tell anyone that we were coming home that night because we wanted to surprise them but then we ended up getting out so late that we just went home and slept. It was kind of nice, though, to go home and just be. The only thing missing that first night was Natalie.
Since being home, Tripp has been doing great. We have had appointments 4 out of 5 week days since coming home. Tripp has had weekly head ultrasounds to check his shunt and overall progress and is doing so well that we have a few weeks off. From that doctor anyway. Tripp started getting casts put on his legs to begin to correct his club feet. We are doing the Ponseti Method which involves getting a new cast on each week, sometimes twice a week, for 8 weeks. The casts go up to his hips and are on both legs. It gently stretches them until they are back in normal position. After that, his achilles tendon will need to be surgically lengthened and another set of casts will be on for a full 3 weeks while it heals. Now, I say gently, but let me tell you that it still is very uncomfortable. It has been likened to getting braces tightened. Is it out right painful? No. But it does agitate and annoy him. As a parent, you put yourself in your kid's shoes. What would I like? How would I feel? I would HATE it. Not being able to bend my legs, itch them, or curl up...the thought makes me start to panic. That is where the devastation, anger, and depression comes from with all of his diagnosis. Putting myself in his onsies and knowing there is not one damn thing I can do to ease his trials. I am grateful that he's young enough that he won't remember all of this. Tripp also had to go to a pediatric eye doctor. With spina bifida, there is an increased risk of having crossed eyes and with hydrocephalus there is a higher risk of having extra pressure put on the optic nerve. He has to go back in three months because his optic nerve is not the right color. Apparently, that could be due to immaturity of the eye (normal newborn stuff) or a damaged optic nerve. Only time will tell.
I'm not sure if I'm missing something or not, but if I did, it will have to wait for another post. My babes need some cuddle time.

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My life- as a wife, mother, sister, caregiver, daughter, career woman- uncensored.


Liberal Catholic. Working mom. Chronic pain warrior. Opinionated introvert. I speak fluent sarcasm. I'm married with two kids- a girl and a boy. My son was born with Spina bifida, hydrocephalus, Arnold Chiari malformation, and bilateral club feet. I may blog about food, politics, religion, medical updates, or our life in general.

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