It's been forever since I've posted- we're plunking along.
Spencer is doing fairly well. His feeding tube was removed last March and after the initial hiccup, he's enjoying his ex-tubie status. He's slowly making progress in feeding himself.
He is getting awesome at using his walker. He walked about half a local mall and back the other day. Today he walked himself in to therapy for the first time rather than getting wheeled in.
He's enjoying being a big brother again. We had our third (and last child) in May. I can't wait until Nathaniel gets a bit bigger and can start interacting with Spencer. Right now Nate kind of just sleeps and eats and Spencer is fairly happy to ignore him.
Our long awaited heart surgery is early next month. For a while there we thought Spencer was going to have to have open heart surgery. His cardiologist has decided that he is pretty confident that he can close his ASD holes in the cath lab. Heart surgery scares me, but I'm ready for this to be over. We've had this surgery hanging over our heads for a long time.
Wednesday, June 24, 2015
Tuesday, April 8, 2014
Wishes
Today one of Spencer's teachers told me another parent said they felt that Spencer got special treatment because of his disability. They went on to say, "I wish my kid was disabled so they could get special treatment too."
No they don't. While I love Spencer and who is he, the worst part is everything he has to go through. Based on that, I would kill to make him typical. I don't dwell on it, but I often think of how he would be different if he didn't have Ohdo Syndrome. What would he say? What would he be eating? Would he know how to read yet? Would he want to play t-ball? How dirty would he get after playing outside? I don't get mopey or depressed about it, but how would our lives be different?
I think why it bothers me so much is because they don't know how hard it is to care for someone with special needs. They only see what's right in front of them, which seems like a happy kid. To get Spencer to the place he is at now has taken years. Years of therapy, nearly 30 surgeries, trial and error, research, worrying, and sleepless nights. They haven't had to hold their kid down so they don't hurt themselves until the pain meds kick in. They haven't had to feed their child every meal for 4 years. Their kid doesn't spend 5 hours a week in therapy. They don't have to drive three hours one way to make sure their child has good healthcare. They don't have to give their kid a bath first thing in the morning so they'll pee and not pee through their diaper at school, because that's how long it take Spencer's bladder to wake up most days. They don't have to deal with the wonderful world of orthotics- their kid can wear whatever shoes they want. They don't have to deal with sensory issues and dealing with the meltdown caused by something as simple as cutting his fingernails. They don't deal with the constant doctor appointments.
Most of all, they can say they wish their child was disabled.
No they don't. While I love Spencer and who is he, the worst part is everything he has to go through. Based on that, I would kill to make him typical. I don't dwell on it, but I often think of how he would be different if he didn't have Ohdo Syndrome. What would he say? What would he be eating? Would he know how to read yet? Would he want to play t-ball? How dirty would he get after playing outside? I don't get mopey or depressed about it, but how would our lives be different?
I think why it bothers me so much is because they don't know how hard it is to care for someone with special needs. They only see what's right in front of them, which seems like a happy kid. To get Spencer to the place he is at now has taken years. Years of therapy, nearly 30 surgeries, trial and error, research, worrying, and sleepless nights. They haven't had to hold their kid down so they don't hurt themselves until the pain meds kick in. They haven't had to feed their child every meal for 4 years. Their kid doesn't spend 5 hours a week in therapy. They don't have to drive three hours one way to make sure their child has good healthcare. They don't have to give their kid a bath first thing in the morning so they'll pee and not pee through their diaper at school, because that's how long it take Spencer's bladder to wake up most days. They don't have to deal with the wonderful world of orthotics- their kid can wear whatever shoes they want. They don't have to deal with sensory issues and dealing with the meltdown caused by something as simple as cutting his fingernails. They don't deal with the constant doctor appointments.
Most of all, they can say they wish their child was disabled.
Thursday, March 20, 2014
I need.
Just a quick update:
After a week of hell, we think Spencer's stoma is trying to close. Stomach acid had been leaking out from around the cath, and burning the skin, causing a hellish amount of pain. They took the cath out yesterday to try some jackass idea involving a colostomy bag. That didn't work and it took surgical a while to come up because of an emergency surgery. During this time, we had an open stoma pouring out gross. Anyhow, after telling them I wanted to transfer hospitals because of the insane amount of pain Spence is in, they decided to call Cincinnati for ideas. They were going to place another feeding tube to allow the skin to heal so we could go ahead and close the hole (which was the most logical plan yet). However, they brought a higher up doctor with them to do it. He decided he couldn't even get a cath in the stoma because it was trying to close! I talked to Jimmy tonight and he said drainage is better and the nurse said things are looking well. Hopefully this works. I need all of us to be under the same roof again. I need Spencer to be able to eat and to be off TPN. I need him out of pain, because seeing him in pain is the worst hell.
After a week of hell, we think Spencer's stoma is trying to close. Stomach acid had been leaking out from around the cath, and burning the skin, causing a hellish amount of pain. They took the cath out yesterday to try some jackass idea involving a colostomy bag. That didn't work and it took surgical a while to come up because of an emergency surgery. During this time, we had an open stoma pouring out gross. Anyhow, after telling them I wanted to transfer hospitals because of the insane amount of pain Spence is in, they decided to call Cincinnati for ideas. They were going to place another feeding tube to allow the skin to heal so we could go ahead and close the hole (which was the most logical plan yet). However, they brought a higher up doctor with them to do it. He decided he couldn't even get a cath in the stoma because it was trying to close! I talked to Jimmy tonight and he said drainage is better and the nurse said things are looking well. Hopefully this works. I need all of us to be under the same roof again. I need Spencer to be able to eat and to be off TPN. I need him out of pain, because seeing him in pain is the worst hell.
Thursday, March 13, 2014
Adventures in ex-tubie land...
Spencer had his feeding tube removed last Thursday, March 6th. His site didn't close by itself and by Saturday morning, the surrounding skin, no matter what we tried, was eaten up by stomach acid. His first pain episodes started that night. His site looked a bit better on Sunday morning, but he started spewing out stomach contents and acid that afternoon. By Monday, we were quite concerned and essentially living a nightmare because of multiple pain episodes. I almost took him to Cincinnati that night, but the GI doctor on call told me that he tried to find someone in surgical who could close his site and couldn't and if I could get him comfortable, to wait and call our regular GI and they will come up with a plan with surgical.
I called and talked to everyone Tuesday morning and told them about the constant pain he was in and that he couldn't keep anything in his stomach and dehydration (because he didn't want to eat and if he did it leaked out) and infection were a concern. Surgery called back and told me to that I could either try pressure dressing (mepilex) or go to our local ER and have them insert a foley catheter in to the stoma. Problem is, the surgery doc in our area is nearly incompetent and hadn't even heard of the AMT brand before we came to her. I told them we had tried every barrier cream and bandage we could and that their plan wasn't good enough and to tell the departments that we were on the way.
So we drove to Cincinnati and went to the ED (emergency department). GI wanted to do pressure dressing or insert another feeding tube. He was just leaking through dressings and we had been trying that all along. I didn't want a gtube placed because they would have had to dilate the stoma. We did agree that we needed to block the hole and he managed to get an 8 French foley in there and admitted him, in hopes surgical could do a fix in the morning.
Surgical came in to consult (at 1:30 in the morning), optimistic they could surgically repair him in the morning. Then came rounds, and they told us there was no way they could get surgical to fix it today (and had no idea why we were told that we potentially could), but they were going to schedule surgery for a later date. However, when we were getting ready for discharge, there was a followup appointment listed. I told the nurse that this wasn't acceptable and we weren't leaving until I knew there was a plan for surgery in place. They sent in GI, who told us they didn't know why surgical wasn't more helpful and would request someone to come in. Surgical sent in this douche bag hot shot resident with an ego from hell who came in looking at the clock and tapping his foot and told me that the surgical doctors from this morning shouldn't have told me that they were going to get surgery scheduled because that's not how things are done. He then told me that they typically don't close stomas unless they've been open for six months or more (bullshit). I told him to leave so he wasn't late for his meeting and called our surgery doctor's nurse, who honestly was the most helpful person during our entire stay. She said she had been on the phone regarding Spencer all morning and that she couldn't depend on any of the idiots to do anything right. She talked me down and told me that Dr Frisher has to see him per protocol next week before surgery is scheduled, but they schedule it while we are at the appointment. She asked who the douchy resident was because he was nuts. She said at most a few weeks. She did everything she could so that we wouldn't have to come back in, but alas the doc was out of town.
On the plus side, Spencer's pain is under control. Yes, he has a cath in his stomach for probably a couple of weeks, but there is a master plan to close this damn thing. I'm an emotional wreck because this is supposed to be a happy time and here we are dealing with this. I've gotten momma bear with far too many people and cried far too many tears (which I don't cry). When did medicine become bureaucratic and about protocol and egos? Anyhow, I'm drinking myself to sleep tonight and hopefully things will calm down for a while.
I called and talked to everyone Tuesday morning and told them about the constant pain he was in and that he couldn't keep anything in his stomach and dehydration (because he didn't want to eat and if he did it leaked out) and infection were a concern. Surgery called back and told me to that I could either try pressure dressing (mepilex) or go to our local ER and have them insert a foley catheter in to the stoma. Problem is, the surgery doc in our area is nearly incompetent and hadn't even heard of the AMT brand before we came to her. I told them we had tried every barrier cream and bandage we could and that their plan wasn't good enough and to tell the departments that we were on the way.
So we drove to Cincinnati and went to the ED (emergency department). GI wanted to do pressure dressing or insert another feeding tube. He was just leaking through dressings and we had been trying that all along. I didn't want a gtube placed because they would have had to dilate the stoma. We did agree that we needed to block the hole and he managed to get an 8 French foley in there and admitted him, in hopes surgical could do a fix in the morning.
Surgical came in to consult (at 1:30 in the morning), optimistic they could surgically repair him in the morning. Then came rounds, and they told us there was no way they could get surgical to fix it today (and had no idea why we were told that we potentially could), but they were going to schedule surgery for a later date. However, when we were getting ready for discharge, there was a followup appointment listed. I told the nurse that this wasn't acceptable and we weren't leaving until I knew there was a plan for surgery in place. They sent in GI, who told us they didn't know why surgical wasn't more helpful and would request someone to come in. Surgical sent in this douche bag hot shot resident with an ego from hell who came in looking at the clock and tapping his foot and told me that the surgical doctors from this morning shouldn't have told me that they were going to get surgery scheduled because that's not how things are done. He then told me that they typically don't close stomas unless they've been open for six months or more (bullshit). I told him to leave so he wasn't late for his meeting and called our surgery doctor's nurse, who honestly was the most helpful person during our entire stay. She said she had been on the phone regarding Spencer all morning and that she couldn't depend on any of the idiots to do anything right. She talked me down and told me that Dr Frisher has to see him per protocol next week before surgery is scheduled, but they schedule it while we are at the appointment. She asked who the douchy resident was because he was nuts. She said at most a few weeks. She did everything she could so that we wouldn't have to come back in, but alas the doc was out of town.
On the plus side, Spencer's pain is under control. Yes, he has a cath in his stomach for probably a couple of weeks, but there is a master plan to close this damn thing. I'm an emotional wreck because this is supposed to be a happy time and here we are dealing with this. I've gotten momma bear with far too many people and cried far too many tears (which I don't cry). When did medicine become bureaucratic and about protocol and egos? Anyhow, I'm drinking myself to sleep tonight and hopefully things will calm down for a while.
Wednesday, March 5, 2014
Graduate.
Before Spencer was born, I didn't know anything about feeding tubes. All of I knew was that old people or people in comas got them. I never imagined that not only would we have a child with a rare genetic syndrome, but he would also require a feeding tube.
After he was born, the main emphasis of his medical conditions was his inability to eat. I went looking for other people for support regarding his tube. We embraced his tube and the "tubie" culture. I became friends with many different people because many of us had a commonality, we had a child with a feeding tube. It didn't matter if they had Mitochondrial Disease or Down's Syndrome, we had a common bond.
As Spencer has learned to eat, we identify him less and less as a tubie. Instead of being his lifeline, it is now just a small reminder. However, we will always be a tubie family. We have gone through this crazy journey, as many others have, and it will always be a part of us.
Tomorrow, Spencer will have his feeding tube removed. He has some type of feeding tube since he was 1 day old. Today, he has had his gtube for 3 years, 10 months, and 12 days. Tomorrow will be day 1 of him living life as a "tubie graduate" and the beginning of his tube being a memory.
Saturday, February 1, 2014
Cardio
The big cardiology appointment is Tuesday. I'm nervous already. I try not to think about big appointments or surgery until the morning of. I can usually block it out of my mind until the doctor sits down or we walk down the hall to the OR. This time I can't. It's his heart. It keeps him alive. His broken heart has kept him alive for this long but we need to repair it. I want to know what the plan is on Tuesday. I don't want to have to do an internal echo or any of that. I want them to tell me that they're going to fix it, when and how, so I can prepare myself. I'm tired of putting it off, but part of me wants to run for the hills.
On the plus side, if there is one to heart surgery, we hopefully will find out if we can pull his tube from this appointment. I'm excited by the prospect of him being tubeless as soon as March. He wouldn't have a 4th "tubiversary."
On the plus side, if there is one to heart surgery, we hopefully will find out if we can pull his tube from this appointment. I'm excited by the prospect of him being tubeless as soon as March. He wouldn't have a 4th "tubiversary."
Tuesday, December 31, 2013
Quick end of the year review
The year started off in us (finally) moving in to our own house. It still is a work in progress, but it's home. We had a lot of fond memories of our past here. Jimmy kissed me for the first time in the kitchen, and I told me he loved me on the front steps. Our kids will grow up here and as a family we'll make a lot great memories of our own.
Quinn Avery was born in March, and is completely typical. She has a great personality and loves to be the center of attention. She's in the process of learning to crawl, and can do so successfully backwards. It took Spencer a long time, but he's finally gotten used to her and seems to enjoy a playmate.
Spencer has come a long way. He is learning to use his wheelchair independently and is still working on walking. He can use a walker, but doesn't like to. He cruises around furniture like crazy and is in everything. He hasn't had any surgery this year. Also, his biggest achievement is becoming independent from his feeding tube. It's looking like in 2014 he will become tube-free. He also started school, which he adores.
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