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.
Thursday, March 20, 2014
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.
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