On the 24th of this month it will be eight years since Bryce had his feeding tube placed. He had been losing weight for 8 months by this time despite our constant (sometimes drastic) efforts to get in enough calories so that he would gain weight and avoid having to get the tube. I dreaded that day, but it did come and I soon learned what a blessing it would be having that tube. We were suddenly able to get all of his meds in without an issue. We were able to get him enough calories and decrease so much stress we had all been through the previous months. About six months later when he suddenly lost the ability to suck and swallow correctly we were so thankful we had a way to feed him. Then when I learned about and changed his feeds into a blended diet of real food, the miracles really began to show up. Having that tube placed was one of the toughest decisions at the time, but we have never regretted it and many times have been very thankful for it.
Because of our experience with Bryce and his feeding tube, I've always thought/said that if there ever came a time when Annalise needed a feeding tube it would be an easy decision. This month I have found out that when that decision suddenly became a reality it was not actually as easy as I thought it would be. The time has come and the decision to move forward with it has been a difficult one.
Annalise has dealt with dehydration issues for years. Her gastroenterologist has mentioned the possibility of a tube many times in the past, it's always been something in the back of our mind as a possibility in the future although we always hoped that day wouldn't come for her and have done what we could to delay it. Well, this year has been tough on her. With each illness that she has had, she has become dehydrated within hours which takes her medical needs to a whole new level as we work around the clock to balance everything out. It has gotten progressively worse throughout the year. The month before her last GI appointment she had two major crashes, each one wiped her out for almost a week. One was after a virus that spread through most of the family lasting about 2 days in everyone except Annalise. The other was without any illness, just not enough to eat/drink while in the care of a new provider.
She also fatigues very quickly when she eats and she doesn't get hungry very often, so eating becomes a big chore and challenge for her. We have tried lots of different things, but she struggles. She hasn't been able to eat meat or raw veggies...basically anything hard for a long time. She used to do smoothies/purees pretty well, but now only takes sips of them. She just can't seem to get enough good nutrition in and never enough fluids. She is always so physically tired.
So, when we met with Dr. McOmber and he said that he felt it was time to really consider a g-tube to supplement what she can eat, we decided to seriously consider it. I knew that time was coming close before he said anything. He said that we didn't have to do it right now, but that he is really concerned with how quickly and hard she has been crashing recently with any little bump in her health. He said that when she gets dehydrated and then so sick because of it the fear with her condition is that it can cause more neuro-muscular regression. The neurological issues she goes through during these "crashes" have definitely become more obvious as well over the past year. Bryce was with us at the appointment and Dr. McOmber pointed out how well Bryce has been doing since we began feeding him green love (smoothies) and real food through his tube. He actually told Annalise, "we need to get more green love into you!" I love that he has come so far around from the way he was when we began. It's awesome to see him now and remember what a challenge it was to get him and the nutritionist to accept the idea of feeding my boy real food. He didn't even mention formula through the tube for Annalise, just that I need to get more of what Bryce eats into her. 😄
So, why has this decision been tougher then I expected? Well for one, Dr. McOmber gave us the name of a surgeon and told us that the decision whether to get it placed now or wait a bit longer was really up to us. He told me that he wasn't saying that we HAD to place the tube as a medical emergency now, just that he feels it is something we need to seriously consider. So the ball was very much in my court and deciding what to do instead of being told what needs to be done was tough for me. I guess because I know what needs to happen but I really want another option.
The second thing is that Annalise really does not want a g-tube. She used to. She used to ask us all the time when she would be getting a tube like Bryce. She has grown up a little and unfortunately has a lot more anxiety regarding anything having to do with doctors. I get it. She has been through a lot. She has multiple reasons, but has made it very clear that she does not want to get or have a tube.
The third and really big reason this is so hard is because it's surgery! Yes, it's an easy procedure, but it is still surgery and that is always scary and filled with risks. But after a lot of talking, praying, and fasting John and I decided that the benefits outweigh the risks and we do feel that it is a necessary thing to do so we began moving forward with that decision. We debated whether it would be better to wait until after cold/flu season to get it placed, but the very real possibility of her getting seriously sick again before that helped us decide to go ahead and call the surgeon. I figured it would be a while before they could get us in anyway so we would have some time to process it all and help Annalise work through it.
I called and the surgeon was able to see us the following week. She began talking about how the tube is placed and Annalise said, "No thank you!" Ha ha! At least she was polite. At the end of the appointment the surgeon told me that someone would be calling me in a week or two to schedule the surgery. Today, only 3 days after meeting with the surgeon I got a call saying that the surgery had been scheduled for September 28th. Less then two weeks away! 😲 I was not expecting it to be so soon and that has sent me into a bit of a panic, but we continue to breathe and pray about it. Although shaky, it still feels that we are on the right path so we will continue moving forward unless something changes. Please keep our girl in your thoughts and prayers over the next couple of weeks. I have a feeling they may be a bit rough.
Because of our experience with Bryce and his feeding tube, I've always thought/said that if there ever came a time when Annalise needed a feeding tube it would be an easy decision. This month I have found out that when that decision suddenly became a reality it was not actually as easy as I thought it would be. The time has come and the decision to move forward with it has been a difficult one.
Annalise has dealt with dehydration issues for years. Her gastroenterologist has mentioned the possibility of a tube many times in the past, it's always been something in the back of our mind as a possibility in the future although we always hoped that day wouldn't come for her and have done what we could to delay it. Well, this year has been tough on her. With each illness that she has had, she has become dehydrated within hours which takes her medical needs to a whole new level as we work around the clock to balance everything out. It has gotten progressively worse throughout the year. The month before her last GI appointment she had two major crashes, each one wiped her out for almost a week. One was after a virus that spread through most of the family lasting about 2 days in everyone except Annalise. The other was without any illness, just not enough to eat/drink while in the care of a new provider.
She also fatigues very quickly when she eats and she doesn't get hungry very often, so eating becomes a big chore and challenge for her. We have tried lots of different things, but she struggles. She hasn't been able to eat meat or raw veggies...basically anything hard for a long time. She used to do smoothies/purees pretty well, but now only takes sips of them. She just can't seem to get enough good nutrition in and never enough fluids. She is always so physically tired.
So, when we met with Dr. McOmber and he said that he felt it was time to really consider a g-tube to supplement what she can eat, we decided to seriously consider it. I knew that time was coming close before he said anything. He said that we didn't have to do it right now, but that he is really concerned with how quickly and hard she has been crashing recently with any little bump in her health. He said that when she gets dehydrated and then so sick because of it the fear with her condition is that it can cause more neuro-muscular regression. The neurological issues she goes through during these "crashes" have definitely become more obvious as well over the past year. Bryce was with us at the appointment and Dr. McOmber pointed out how well Bryce has been doing since we began feeding him green love (smoothies) and real food through his tube. He actually told Annalise, "we need to get more green love into you!" I love that he has come so far around from the way he was when we began. It's awesome to see him now and remember what a challenge it was to get him and the nutritionist to accept the idea of feeding my boy real food. He didn't even mention formula through the tube for Annalise, just that I need to get more of what Bryce eats into her. 😄
So, why has this decision been tougher then I expected? Well for one, Dr. McOmber gave us the name of a surgeon and told us that the decision whether to get it placed now or wait a bit longer was really up to us. He told me that he wasn't saying that we HAD to place the tube as a medical emergency now, just that he feels it is something we need to seriously consider. So the ball was very much in my court and deciding what to do instead of being told what needs to be done was tough for me. I guess because I know what needs to happen but I really want another option.
The second thing is that Annalise really does not want a g-tube. She used to. She used to ask us all the time when she would be getting a tube like Bryce. She has grown up a little and unfortunately has a lot more anxiety regarding anything having to do with doctors. I get it. She has been through a lot. She has multiple reasons, but has made it very clear that she does not want to get or have a tube.
The third and really big reason this is so hard is because it's surgery! Yes, it's an easy procedure, but it is still surgery and that is always scary and filled with risks. But after a lot of talking, praying, and fasting John and I decided that the benefits outweigh the risks and we do feel that it is a necessary thing to do so we began moving forward with that decision. We debated whether it would be better to wait until after cold/flu season to get it placed, but the very real possibility of her getting seriously sick again before that helped us decide to go ahead and call the surgeon. I figured it would be a while before they could get us in anyway so we would have some time to process it all and help Annalise work through it.
I called and the surgeon was able to see us the following week. She began talking about how the tube is placed and Annalise said, "No thank you!" Ha ha! At least she was polite. At the end of the appointment the surgeon told me that someone would be calling me in a week or two to schedule the surgery. Today, only 3 days after meeting with the surgeon I got a call saying that the surgery had been scheduled for September 28th. Less then two weeks away! 😲 I was not expecting it to be so soon and that has sent me into a bit of a panic, but we continue to breathe and pray about it. Although shaky, it still feels that we are on the right path so we will continue moving forward unless something changes. Please keep our girl in your thoughts and prayers over the next couple of weeks. I have a feeling they may be a bit rough.
1 comment:
Tammy - I'm sorry to hear about your struggles. My thoughts and prayers are with you and your family during difficult times. As a survivor of cancer, I'm moved by your story. If you have a moment please drop me a line at virgilnci(@)gmail(dot)com. I'm hoping we can chat about potential ways to work together. Thanks for your time, and God bless. V
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