We are in hospital again :( We've been here since Saturday. Matthew has been having issues with vomiting again. They started last week, and progressively got worse. He was even vomiting with pedialyte. So by Saturday, the GI specialists felt like it was time for him to be admitted (we were in phone consultation with them daily.) Once here at the hospital, it was decided that we should try to "rest his gut" for a day or two. Sunday was a quiet day, with IV fluids running, and only small amounts of retching.
Monday was a flurry of activity. We had so many doctors and specialists in to see Matthew. We are trying to determine why he is vomiting. Many times before he vomits, he is coughing violently. Is he coughing due to reflux? Or is it respiratory? Or is it dysmotility? (the inability of his food to move from point A to point B) Is it a combination of the above? At the same time this is happening, Matthew's body also decided to quit allowing his bladder to empty, so we are cathing him. He also is having a hard time having a bowel movement. It's not a constipation issue, it's an appropriate consistancy, it just won't come out. So he is being complicated. Thank goodness (so far) his seizures have not flared up.
So yesterday, he got a chest x-ray (due to the coughing, and "junky" sounding lungs); and a CT scan of his brain to check shunt function, and a modified upper GI, to make sure his feeding tube was emptying in the proper place in his intestines. All of these tests came back fine; other than some atelectisis of his lungs, which we see frequently.
Neurosurgery is consulting to make sure his spinal cord has not re-tethered. They say this is pretty impossible with the type of tethered cord he had, but they also said that Matthew doesn't always follow the rules. They also say that the nerves that control the bladder and bowel that were affected from the cord tethering can take up to a year to straighten itself out. And during that year bowel and bladder function can ebb and flow {great...not what I wanted to hear}
Urology is consulting due to the neurogenic bladder. They would like a kidney ultrasound to make sure his kidneys are not being affected by the urine holding (when we cath him he can have upwards of 8-11 ounces in his bladder,which is alot..so we want to make sure we are doing exactly what his kidneys need, especially since his kidneys are a bit abnormal)
GI is trying to figure out why he is vomiting, and they are handling his feeding strengths and rates. The plan yesterday was if he didn't tolerate his feedings, they would stop his feedings in his feeding tube and he would go on TPN (nutrition in his IV) for 5-7 days and we could have been looking at a longer stay. So far we are avoiding the TPN
Pulmonology came in today per my request, because a lot of the vomiting seems to be a result of coughing, and mucous production. Does he have allergies? Is he aspirating? Why all the mucous and where the heck is it coming from because it's not coming out his nose, and he doesn't have pneumonia.
Those are the basics in a nutshell. Although I may have left out a few things since during this posting, I have been interuppted three times with different medical personel visiting. It's a busy place, this little room of ours.
We are going to do a MRI either today or tomorrow to check his spinal cord, and a kidney ultrasound today. Nothing else that I know of is scheduled. I will sneak in a nap and hopefully some quiet time with Matthew.
11 comments:
Poor little guy. I sure hope you find some answers to his vomiting and get to go home soon. But yeah for no increase in seizures. I pray it stays that way.
Oh and I like your new header, I didn't notice it until I was leaving a comment and at the top it said "Just the 6 of us". I had to go back and make sure I was on the right blog, LOL!
Oh dear. Poor Matthew. I will keep you in my thoughts and be checking here and on Facebook for updates.
We love your family!
I feel completely humbled. I thought I was busy, but not like this. Wow, that is a lot. Waiting for answers takes some major level of patience. You, my friend, must be the most patient person I know. (did that get you laughing?)
Love you all so very much!
Oh poor guy :( I hope he recovers quickly!! I'll keep him and all of you in my prayers!
Wow! That is A LOT to deal with. Praying you get some answers and that they can get this under control for Matthew for good. So thankful that the seizures have been under control at least. Keep us updated. And I'm glad you are enjoying your chicken salad :) Hang in there, Mama!
Sending thoughts and prayers y'alls way!
Jill, I am amazed on what you and family do on a day to day basis. My prayers are with you and your family!
Sounds like you have the "NASA" team at work for Matthew. I continue to be a prayer warrior for all of you. Blessings be upon all of you.
I'm sorry Matthew is going through a bumpy patch. Mucous is might be the bane of my existence, why must their little bodies make so much of it?? I hope between all the specialists, one of them can figure something out how to get his GI moving in a downward fashion again. On the up side, I'm encouraged that you said in all of this, his seizures aren't acting up. That's awesome!
Praying for you Jill & for Matthew.
praying for you all
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