YOU GUYS ROCK!!!! I will never be able to express how deeply we appreciate your support during this particularly tough time! We will be evermore grateful, more than you'll ever know <3
So, as some of you know, Tyler had to go back to Seattle Children's Hospital last Wednesday. She was trying so hard to be well and think well, and honestly, fake well. Fake well is where we get into really big trouble. This is where Tyler is so sick of sick that she ignores sick and pushes herself, and fakes well so she can go to school, see her friends and feel normal. Okay, so, for all of you who have ever faked sick to stay home, it's the same premise. Fake well to LEAVE home and be well as opposed to fake sick and stay home. Who would have ever imagined? Not me, as a kiddo, there were days that I faked really sick, because I just needed a "down" day. She fakes well to have an "up" day. Never in my wildest imagination.
One thing I have realized this past week: every day is a new day. No, not cliche "new day", I mean, really, every day is new. New challenges, new experiences, new symptoms. I think or expect one thing, and end up with something entirely different. I've stopped updating people, even those closest to us, while we are in the hospital. One moment everything is terrible, grim outlook. Then there are a myriad of changes, up downs, and critical decisions, and in this case an <almost> miracle. Often time we think everything is fine and it is awful, sometimes it seems horrible and it's easily adjusted (notice that I did not say fixed).
So, I am going to abbreviate as best I can here to save you tedious details and drama. We went to SC because for a week Tyler was unable to tolerate the feeds. Then she was having trouble with anything coming out downstairs which is odd with the amount of input and the nature of Crohn's Disease and Ulcerative Colitis. She got to the point where she had lost 5 lbs in less than a week, anything we put in upstairs came out, and nothing came out either way downstairs. There have been several times we've feared complete obstruction or blockage, and been lucky. This time, she knew she was blocked. It was evident to her docs as well.
Physically, within her intestines, the worst area has so much scarred tissue that the intestine is permanently narrowed, and is a continuous concern for obstruction. So, fast forward. Our doctor comes to us and says we have two options, and he doesn't like either one. So, we discussed them and decided on the option we thought would be best. For us, this meant, (hopefully) much less time in the hospital if it worked. Also, less radiation from the get go. I will not bore you with the amount of radiation one is exposed to in each scan; that's for another day. So, we picked the right option (sheer luck)!
Four machines on one pole, four bags, meds, iv fluids and the ever fabulous go lightly, doubled up for max benefit/hopefully quicker answers. This is the first noticeable benefit of the feeding tube, she didn't have to drink all of it. It went in through her tube. Good thing, she couldn't even sip water!!! So, going into procedure, doctor was realistic. Surgery has been put on the proverbial table. At this point, whatever it takes for healing and relief. Somehow I've developed a hospital-numb that keeps me from hoping for too much or fearing the very worst. As I said, it changes constantly, minute to minute, so after four years, I guess I've learned to try to not think one way or the other. It's exhausting. I just focus on the info I have, the info they give and more than anything what Tyler is saying and feeling.
So much for long story short! This really is the abbreviated version!
So, when they gave her the anesthesia this time it was administered differently than all of the other times. Normally she knows what to expect, or they tell her. Not sure why, but they did not tell either of us that this would be painful. So, when she went under, she was in severe pain and very distressed. It was horrifying and unsettling to see, but for her, it was awful, frightening and painful.
So, when they were all done, her doc was thrilled, giddy. He said the nurses were making fun of him for taking so many pictures. Everything looked amazing, her GI doc was shocked, because every time they go in, it's worse than the time before. This time, he said, if a colon and GI tract could be gorgeous, hers was! !!!!!!!!!!!!!! This is the first positive & improvement that we have had in over four years! A. Ma. Zing. The blockage was the elemental formula, not physical! Wahoo! That's so huge!!!
When she came out, her heart rate was very low and they were very concerned. We still didn't have a plan, or know what we were going to do yet. Friday night we had a huge scare, her heart rate went crazy, up down and all over the board. She felt strange, and her throat and chest were tight. This was what happened when she had anaphylaxis in the past. Panic button, called for nurse, doctors came. Benedryl and monitoring, all was okay. Just really scary. What happened was she had a pain attack. We got to see what it looked like on the heart monitor and see what her body did as recorded by the machines. My labor pains had nothing on that! (Did I mention I had her naturally with no meds? Yes, her pain is that wicked.)
There was no talk of going home. : ( They also put in a new feeding tube while she was under, so it looked like we were going to stay on it.
Saturday around noon, her GI doc came in and we came up with a plan. Add in a few new meds, including Methotrexate. This time, we plan to have no side effects. Methotrexate is a chemotherapy agent. Last time, it was a higher dose, and we injected it subcutaneously weekly. The side effects were worse than the disease. Again, we are reassured that this dose is smaller and it is oral, so she shouldn't experience the side effects. *fingers crossed*
So, it took several hours, but we got new meds, they TOOK OUT HER FEEDING TUBE, and we got to go home!!!! She'll be on a crazy strict diet, The Specific Carbohydrate Diet, which we've done before and it was so difficult. This time, I've already been there once before with the crazy preparation & cooking, and compared to the tube, it's not bad at all!
Unbelievable! The doctor was shocked and thrilled! So, we know that when things get bad and she gets really sick, the feeding tube works. Does it suck? Hell yes. But, it works, and it's not the tube. First thing in over four years!
After we went over her new treatment plan, our doctor asked Tyler if she had any questions. The girl who doesn't give hugs without a fight and who doesn't cry in front of any one said, "Yes. I want a hug." And she cried softly as she told him that he did for her in four months what her other doctor wasn't able to do for her in four years.
<3
So, as some of you know, Tyler had to go back to Seattle Children's Hospital last Wednesday. She was trying so hard to be well and think well, and honestly, fake well. Fake well is where we get into really big trouble. This is where Tyler is so sick of sick that she ignores sick and pushes herself, and fakes well so she can go to school, see her friends and feel normal. Okay, so, for all of you who have ever faked sick to stay home, it's the same premise. Fake well to LEAVE home and be well as opposed to fake sick and stay home. Who would have ever imagined? Not me, as a kiddo, there were days that I faked really sick, because I just needed a "down" day. She fakes well to have an "up" day. Never in my wildest imagination.
One thing I have realized this past week: every day is a new day. No, not cliche "new day", I mean, really, every day is new. New challenges, new experiences, new symptoms. I think or expect one thing, and end up with something entirely different. I've stopped updating people, even those closest to us, while we are in the hospital. One moment everything is terrible, grim outlook. Then there are a myriad of changes, up downs, and critical decisions, and in this case an <almost> miracle. Often time we think everything is fine and it is awful, sometimes it seems horrible and it's easily adjusted (notice that I did not say fixed).
So, I am going to abbreviate as best I can here to save you tedious details and drama. We went to SC because for a week Tyler was unable to tolerate the feeds. Then she was having trouble with anything coming out downstairs which is odd with the amount of input and the nature of Crohn's Disease and Ulcerative Colitis. She got to the point where she had lost 5 lbs in less than a week, anything we put in upstairs came out, and nothing came out either way downstairs. There have been several times we've feared complete obstruction or blockage, and been lucky. This time, she knew she was blocked. It was evident to her docs as well.
Physically, within her intestines, the worst area has so much scarred tissue that the intestine is permanently narrowed, and is a continuous concern for obstruction. So, fast forward. Our doctor comes to us and says we have two options, and he doesn't like either one. So, we discussed them and decided on the option we thought would be best. For us, this meant, (hopefully) much less time in the hospital if it worked. Also, less radiation from the get go. I will not bore you with the amount of radiation one is exposed to in each scan; that's for another day. So, we picked the right option (sheer luck)!
Four machines on one pole, four bags, meds, iv fluids and the ever fabulous go lightly, doubled up for max benefit/hopefully quicker answers. This is the first noticeable benefit of the feeding tube, she didn't have to drink all of it. It went in through her tube. Good thing, she couldn't even sip water!!! So, going into procedure, doctor was realistic. Surgery has been put on the proverbial table. At this point, whatever it takes for healing and relief. Somehow I've developed a hospital-numb that keeps me from hoping for too much or fearing the very worst. As I said, it changes constantly, minute to minute, so after four years, I guess I've learned to try to not think one way or the other. It's exhausting. I just focus on the info I have, the info they give and more than anything what Tyler is saying and feeling.
So much for long story short! This really is the abbreviated version!
So, when they gave her the anesthesia this time it was administered differently than all of the other times. Normally she knows what to expect, or they tell her. Not sure why, but they did not tell either of us that this would be painful. So, when she went under, she was in severe pain and very distressed. It was horrifying and unsettling to see, but for her, it was awful, frightening and painful.
So, when they were all done, her doc was thrilled, giddy. He said the nurses were making fun of him for taking so many pictures. Everything looked amazing, her GI doc was shocked, because every time they go in, it's worse than the time before. This time, he said, if a colon and GI tract could be gorgeous, hers was! !!!!!!!!!!!!!! This is the first positive & improvement that we have had in over four years! A. Ma. Zing. The blockage was the elemental formula, not physical! Wahoo! That's so huge!!!
When she came out, her heart rate was very low and they were very concerned. We still didn't have a plan, or know what we were going to do yet. Friday night we had a huge scare, her heart rate went crazy, up down and all over the board. She felt strange, and her throat and chest were tight. This was what happened when she had anaphylaxis in the past. Panic button, called for nurse, doctors came. Benedryl and monitoring, all was okay. Just really scary. What happened was she had a pain attack. We got to see what it looked like on the heart monitor and see what her body did as recorded by the machines. My labor pains had nothing on that! (Did I mention I had her naturally with no meds? Yes, her pain is that wicked.)
There was no talk of going home. : ( They also put in a new feeding tube while she was under, so it looked like we were going to stay on it.
Saturday around noon, her GI doc came in and we came up with a plan. Add in a few new meds, including Methotrexate. This time, we plan to have no side effects. Methotrexate is a chemotherapy agent. Last time, it was a higher dose, and we injected it subcutaneously weekly. The side effects were worse than the disease. Again, we are reassured that this dose is smaller and it is oral, so she shouldn't experience the side effects. *fingers crossed*
So, it took several hours, but we got new meds, they TOOK OUT HER FEEDING TUBE, and we got to go home!!!! She'll be on a crazy strict diet, The Specific Carbohydrate Diet, which we've done before and it was so difficult. This time, I've already been there once before with the crazy preparation & cooking, and compared to the tube, it's not bad at all!
Unbelievable! The doctor was shocked and thrilled! So, we know that when things get bad and she gets really sick, the feeding tube works. Does it suck? Hell yes. But, it works, and it's not the tube. First thing in over four years!
After we went over her new treatment plan, our doctor asked Tyler if she had any questions. The girl who doesn't give hugs without a fight and who doesn't cry in front of any one said, "Yes. I want a hug." And she cried softly as she told him that he did for her in four months what her other doctor wasn't able to do for her in four years.
<3
