The last few days have been touch and go. Today we called the surgical clinic because things were worsening quickly. Dr. Aiken happened to be the Dr. on call and wanted to see Malachi right away. I told the children to get socks and shoes and we were off. Sam met us there. Malachi has enterocolitis. His little colon is being attacked by nasty bacteria that cause all sorts of yuck, including inflamation. An inflamed colon does not want to give up stool. And so, our little trooper's gut is now a cesspool that it is quickly trying to spread nastiness everywhere in his body and bring him down. He's miserable, just pain miserable. It's not enough that his belly hurts and he has enough gas stored up to power a rocket to the the moon and back, he's throwing up and holding onto insane amounts of the most awful stool you ever did come across.
It's something we have known we would likely deal with at some point, if not several times a year, for the first few years of his life. It's a miracle that we haven't had to deal with it yet. Now it's bangin' on our door and we've got to let it in to get it out.
The treatment is specifically targeted anti-biotics, and irrigations. Yep folks you heard it here first, we are back at it and let me tell you something, it's pretty vile this go around. We are talking ghastly amounts of dark brown liquid (you could even call it black, that's how dark) and the smell. Let me just tell you I don't care how many port-a-potties you may have visited in your life, I don't even care if you were involved in rescue missions for Hurricane Katrina (I can say that because Sam was!) you aint smelled nothin' like what's comin' out of our little boys bottom. Nothin'! The saddest part is that it hurts him and there is blood. I am not sure anything could ever prepare you for having to do a procedure on your baby that includes him screaming because what you are doing is hurting, not to mention drawing blood.
The sutures that connect his colon to his rectum are not even two weeks old, there is still healing going on. The dilatations irritate the site, hence the bleeding. After that we have to insert a tube so we can inject 112 mls of saline into his colon to cleanse it and wash the stool out. It's nothing new to us. We were doing it every 4 hours for him up until his last surgery. The difference now is that he is sick with enterocolitis and he has a healing suture site. It's no fun to do things to your baby while he screams and looks at you like 'what are you doing?! Help me!' and you can't do a thing about it but just keep on going. It's awful.
What are dilatations, you ask? We get to stick a cylindrically shaped piece of hard plastic into our baby's bottom. Why? I read this strange thing a while back about a pigeon pooping on someone's head. The author quite comically explained that it wasn't the poor pigeons fault because birds don't have a sphincter muscle. I thought to myself 'what a strange and unrefined thing to blog about' (I was laughing whilst thinking these high and mighty thoughts so I must not be all that refined myself). I wonder what I would think if I happened upon my own blog.
... Anyway...
Malachi has an extremely hyperactive sphincter muscle. Another tally mark in the ever so growing column of things that Malachi excels in. So while the pigeons get to relieve themselves whenever and wherever, we get to insert hard plastic cylindrical things called dilators to try and help our little one overcome his spastic sphincter. The fun never ends around here folks. Never.
Here's the deal. There is no cure for Hirschsprung's Disease. There is this miraculous operation that allows them to cut out the colon with no ganglion cells, pull it down and make a new pathway for it to run through, and then pull it through and suture it to the rectum. As amazing as this surgery is, it's not a cure. Malachi will live with Hirschsprung's for the rest of his life. And so will we.
So far Malachi has created his own category. He is not in the bad group or the good group, he is in Malachi's group, as Dr. Aiken affectionately refers to it. He is beyond the bad group, I tell you he excels in every way. In his most recent operation there was great care taken to biopsy more than usual and at every possible angel in order to ensure that the very best section of his colon was found. Normally it's not rocket science, normally it's bad here and then good there; cut, pull down, pull through, suture up, close, and were done.
Malachi has proven to be a tricky case in every way. Dr. Aiken is making every effort to get him to the best place possible. We feel so good about his operation and can already see improvements as far as the functionality of his colon. That being said, there are many aspects to this disease and you never know which ones will be an issue until they smack you in the face. We have been smacked around quite a bit, but we are resilient, and let's not forget Malachi who has been smacked around most in this ordeal! For all that he's been through he really is such a sweet and charming little one. He has a long road ahead and we'll be right there with him, every inch of it.
Interestingly enough, there is a procedure to help with his sphincter spasm. We aren't the only parents having to perform this sort of torturous act on innocent little ones. Would you like to know what it is? First there is a Rectal Exam Under Anesthesia (REUA) where they aggressively dilate the sphincter, next they inject Botox into the sphincter muscle. Theoretically our little boy wakes up with a poop shoot to match that of a pigeon and presto we are diaper changing machines. Botox for the bum, who knew. Now you do!
The theoretical aspect comes in that it doesn't work for everyone. They have done many amazing scientific test including measuring rectal pressure before and after and there doesn't seem to be any rhyme or reason as to why it works for some and not for others. Malachi has had this procedure once before and it did help some, but that was before his new operation with the supreme section of colon verses the average joe section of colon. We are hopeful.
Even if it helps, the effects only last for about 5-6 weeks. Malachi doesn't like being NPO. He also does miserably at coming out of anesthesia. We don't particularly like the idea of him going under every few weeks either. We shall see what is best for Malachi. Right now that is making sure he gets what the needs when he needs it and that changes by the minute.
This minute he's sleeping comfortably. There was a great exodus of disgusting matter with his first irrigation and hints of normal baby poop with his second. Things can only get better from here.
2 comments:
If prayers were pennies, you guys would be millionaires by now. Poor Malachi. Poor mom and dad and family. I'm sorry, I wish there was more that I could do other than offer up prayers - but I will keep them coming! I am having Doug put your names at the Detroit temple too each week when he works.
I, like Angie, feel so badly for all of you. I wish there was more that I could do besides offering prayers. Roger and I won't give up....we'll continue to pray, and next week we'll put his name in the Chicago temple. No one has any idea how horrible this is but you and Sam. Our prayer is that Malachi heals now quickly, and that he can start to live just like little bablies are supposed to.
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