On Thursday we went to Antonio’s long awaited appointment with his GI specialist. I was having a hard day so Tim came home from work to take us. :) (Thank you all for praying for me over the last few days. I am feeling so much better and back to walking well and driving again. Just about back to normal. God is so good. )
When we got to the appointment the first thing they did was get a weight on Antonio. He is very hard to get an accurate weight on because he cannot stand on a scale and is too heavy for anyone to hold while on a scale. There is no place local that we have found to take him to and easily get a weight on him. The only places that have weighted him for us over the years is when he is in the hospital at Scottish Rite for a surgery/test or here seeing Dr.M. So they took him down to the scale and weighted him in his wheel chair on a roll on wheel chair scale. Then Tim and William got him out of his chair and lifted him onto an examination table and they weighted the wheel chair by itself. Then they subtracted the wheel chair alone weight from the weight of him in it. He weighed 120 pounds!!! Big guy. I can tell when trying to move him around by myself he has gotten heavy. I cannot lift or move him at all without the Solo lift.
Tim nor William can lift him alone at all anymore either. They have to move him together and still it is hard as Antonio’s body is so large, misshapen and stiff. They only lift him with out the Solo Lift if they have to. It is just to much strain on anyone's back.
After we got an accurate weight on him I sat with the nurse and went over what medications he is on. Last time we were there he was only on inhalers for his asthma and those he only needed when having flair-up or a cold. He has been put on a lot of medications over the last year trying to help him feel better with his asthma and stomach issues. These two things are related. As some of his lung issues are coming from him aspirating when he eats.
We love Dr. M. He is a really great GI doctor. I went thru many GI doctors when we first adopted Antonio as none would support me blending whole, healthy food and putting it in thru Antonio’s G-tube. All the GI doctors we went thru wanted us to pop open a can liquid nutrition to put into his tube and let him grow on that. I learned a long time ago by watching the g-tube fed kids that came thru our home and those of my friends I made from meeting them at the therapy place we went to. Caned nutrition is easy. Pop open the can and pour it in. Quick, easy, clean. But so concentrated it also is the absolute cause, many times, of reflux, vomiting and bowel dumping. It is so concentrated and strong. So full of sugar and fat that the body wants it out fast. Many children on it look pasty and just don’t do well. But parents are told of no other option.
When we adopted Antonio he was 6 and weighed 24 pounds. He was failure to thrive. The first thing I did was have him evaluated for a feeding tube. As after a few weeks of him living with us, I saw what a struggle it was for him to eat enough calories by mouth. He got his g-tube. We were prescribed a name brand, very widely used, liquid nutrition and right away he developed reflux and vomiting. Even though he had a nisson done at that time to prevent vomiting. He would retch with such force he would break thru the nisson. (I know, to much information) When we could keep the nutrition drink down his bowels would dump it. We went to many GI appointments and had his formula changed many times even using an expensive predigested one. He was on several stomach meds. None worked for him. So they just said, he is growing, basically deal with it.
I hated seeing him feeling sick all the time and it was very hard to bath him and clean him up so many times a day where ever we were. I prayed about it. God is so faithful. I knew healthy eating was very important and had the idea to get a super powerful blender and blend normal food that he would normally have been eating (blended with goats milk) and just put it in thru the g-tube. He never had refluxed before the g-tube and caned formula. So I blended a normal sized portion that he would have normally eaten and put it in thru his g-tube. (now here I must put in a disclaimer….do this at your own risk. As many children have many different tummy issues that I might have never dealt with so be careful and find a GOOD GI doctor and pray to God)
Antonio began to grow, felt well and did very well.
No more refluxing and tummy meds needed. No more dumping. But the GI doctors hated that I was doing it. They wanted a measurable caloric daily intake to report. I went thru many GI doctors. One even threatened to turn me in to DFCS if I didn’t go back to the formula way. Then I found Dr.M. and he said if it is working keep doing it. I could tell Dr.M didn’t really feel 100% comfortable with it, but let me. All he asked was for us to have more frequent visits so he could keep a closer watch on how Antonio did over time. He had me come more frequently for weigh ins and check ups and after a year said…ok…..Just keep going. See why we love him. Now days it is much more prevalent to see moms making either “home brews” or blending foods for their kids with feeding tubes. But back then it was not done much. Or at least I didn’t know of anyone doing it and the doctors surly didn’t know many either. Or I would not have been given such a hard time by so many GI doctors.
Over the years we worked with Antonio till he got strong enough to eat every meal by mouth.
We only used his feeding tube for liquids as during one of his shunt failures, at 8 years old, he lost his ability to protect his airway with thin liquids. So he built up his strength to eat all his meals orally by mouth. He has been eating all his meals by mouth for the last 9 years and got all his fluids thru his g-tube at night. (Like with an IV pump, just going in thru his g-tube.)
So... at this visit to see Dr.M we explained all that has been going on with Antonio over the last year or so. I explained how Antonio has been getting fatigued while eating and not protecting his air way and causing lung issues. That we first gave up supper and started blending and putting it in thru his feeding tube because he was so fatigued by dinner time to chew and swallow correctly. Then we had to do that for lunch and now he gets all his meals blended and put in thru his feeding tube. He only eats for pleasure by mouth a few bites of chips or cookie here or there. I explained the lung issues Antonio has been having. How he is on so many nebulizer breathing treatments every day now to keep his lungs clear and open. How disappointed and down I feel about working so hard all these years to help him be able to eat every meal by mouth and now it is gone.
The doctor looked and Tim and I and said…Any typical person who lives a long and normal life span…if they do not die of another cause will eventually die from them losing their ability to eat and protect their air way. Many people in nursing homes have feeding precautions because their muscles are losing the ability to act in split second coordination to eat and protect the airway. That kids with Antonio’s type of CP have advanced ageing in many areas. That it is the normal progression of things in children with his type and severity of CP for this to happen over time as they age.
This made me very sad. To know that Antonio has reached his peak and is regressing and that this is normal for his medical condition. But…I am so grateful to God for his feeding tube now more than ever. As I can still feed him very healthy food and protect his airway at the same time.
The other thing the doctor said was that Antonio is one of the largest, most muscular and healthiest kids that he sees with his type and degree of cerebral palsy. Look how heavy and strong he is.
Dr.M said that Antonio is one of the oldest kids he sees and has made it father and lived longer than most with his condition. This made me have very mixed feelings. So glad our wonderful, sweet much loved son is still here. But made me so much more aware of how hard we are going to have to work to keep him healthy. We work very hard to take care of him now and keep him clean and growing and happy. We have strict rules about people not coming into our home to visit if they even have a cold. As a simple cold, flu or respiratory virus can put not only Antonio but Elizabeth into the hospital and has many times in the past.
The other thing Dr.M said is that he thinks that Antonio is aspirating on his own saliva at night while in the laying down position and that is why he is having such breathing attacks in the night needing breathing treatments. So we are being referred to a pulmonologist (lung doctor) Where if indeed they feel the same way about it, they will either prescribe a medication to dry his secretions in the night or do a surgery to tie off his saliva glands. Sigh.
So that is basically how the visit went and what we heard. God is so good and faithful. He has blessed us with one of the most wonderful sons we could every have asked for.
Kind, loving, always praying, sweet, gentle, I could just go on and on.
I am grateful for every day he has been with us. He has been a blessing to us every moment. I feel much better after going and talking with his Dr. I have a better grasp of why this is going on and now can release the me trying to fix it. I give it all to God as I should have to begin with and I have decided I just want Antonio to be happy and comfortable every day for the rest of his life. We treasure him now even more than ever and are praying for wisdom as to how to best do his care as these new issues come up over time.
Proverbs 4:20-22 My son, attend to my words; incline thine ear unto my sayings. Let them not depart from thine eyes; keep them in the midst of thine heart. For they are life unto those that find them, and health to all their flesh.