Philip's Journey |
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We went to the GI doc on Thursday the 14th. He said he thinks things are moving (no xray was done) and wants to keep Philip on Miralax indefinitely to avoid this happening again. Another mother told me Miralax thins mucus too, which supposedly was the problem all along. This week his breathing has gotten a little harder. Nothing scary, just noticeable. We will be adding Pulmozyme if it does not get better by the end of the week. His nose also started running again and now there is blood in the mucus. So, we are adding saline spray again and lining his nostril with a thin layer of Vaseline. Needless to say, he is not too excited about all of these things. Tonight though, he did sit in my lap and let me do his Tobi nebs without a fight. I did not have to hold his arms down or anything!
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Over the weekend, we started Philip on Prednisone for a few days to help with the cough. We are currently nebulizing Tobi- not fun! , and on Monday added Albuterol puffer to help open the airways. His voice is all but gone due to the Tobi. On Sunday, Philip started vomiting. We are not sure if it is because of the cough, the mucus, or a blockage getting worse. We go back to the gi doc tomorrow :-)
Today we went back to the GI specialist. We had another xray done. The medication stopped working after we came down on the dose. So, we start the miralax up full dose three times a day tomorrow. I called the cf doc today to inform him Philip's cough is getting worse. Turns out, the culture they did last week showed an unidentified gram negative bacteria. The doctor said some gram negative bacteria include MRSA and cepacia! Cepacia is the one call that you never want to get. We will start Tobi tomorrow and that will run for the next four weeks. I do not know how we will get through the time we have to wait for results. Please pray for Philip.
Today we went to a pediatric GI specialist. They repeated xrays. The Dr said there was still a lot of stool and gas, so the Miralax was not working. I already knew that, but that's okay. They decided to do double the dose to 17g and continue 3x a day for three days and then twice a day (all assuming he has diarrhea). His nutritionist was actually at this clinic today and she thinks after he gets cleaned out, we will do a 3 day fecal elastase test (which is what I have been wanting all along). That will give us a much better idea of exactly how well his pancreas is functioning and how much enzymes he needs. I called clinic today and they said so far only staph is showing up on his last culture, so fingers crossed, it will stay that way!
Yesterday I talked to our CF doctor. He spoke to a pediatric GI specialist and explained our entire situation. His suggestion is to stop the enzymes for a day or so. We are continuing the Lactulose. Hopefully, this will cause the diarrhea. I asked if he could possibly be pancreatic sufficient since this is something I have wondered all along. Even though his elastase test says he is not, there is a chance he could be. We will see. So far, all day with no enzymes....he is happy as he could be, no stomach cramps....no diarrhea.
We are going into week 3 of laxatives with still no diarrhea. Yesterday he was even slightly constipated. His doctor is out of town and I never even got a return call from the other one. Extremely frustrated with him. Atleast Philip is happy and still feeling well. His tummy was kind of distended tonight, but he seemed to not even notice. Hopefully we can get through the weekend and talk to his regular cf doc on Monday. Tomorrow morning the whole family is off to get flu shots. SO nice to not have to be in a panic to get them like last year when there was a shortage!
We got to the CF clinic at 9am. After conning the intern and the doctor out of their stethoscopes (they do make excellent toys, you know), the first procedure ordered was radiographs. The xray tech knows us now. They did one abdominal rad and Philip stretched out flat on his back without moving an inch. Such a good baby! Back to the clinic we go. X-rays look good. Baby is just full of stool. Liver and spleen are fine (this is where the concern was).
Just before we went to x-ray, the nurse placed a collection bag over his penis to catch urine. I have never seen one of these! Handy little thing though. We finally did get urine by the way. Next on our list of things to do is blood draws. The nurse gave us EMLA cream again. Thank goodness. This stuff is gold. We went to the Children's Hospital across the street and we actually got a phlebotomist that was good this time. She got it on the first stick and Philip never even flinched. No tears this time at all!!! He did not seem to feel anything. We were running the bloodwork to check his liver enzymes, but also because he has been urinating ridiculously copious amounts of urine for the last month. Tonight Philip's pulmonologist called. (Quick service!). The blood and urine results were all within normal limits. We got a prescription for lactulose. We are to do this once a day until watery diarrhea is developed and then Miralax for one week after. He wants a complete system flush! Hopefully this will help with the distension. The dr. thinks that what may be going on is basically faulty plumbing. He believes mucus may be building up in Philip's intestines. This makes a narrow, sludgy passage for bowel movements. Even though he appeared to be having normal BMs, he probably was not. This may have been caused by all of the messing around with his enzymes trying to figure out what he does and does not need. We are now fairly sure that Philip can maintain on a half of the lowest enzyme manufactured. Any more and he gets constipated. So, hopefully we can stop the cycle before anything damaging happens. The next week should be fun.... Well, this is day 5 of Miralax. No system flushing going on here. He is just as normal and regular as can be. What??? His pulmonologist suggested someone read him a book about CF sometime. Haha. This is nuts. I mean, we are happy he is not dealing with the typical CF crap, but this is insane. He has been on a double dose for the last 3 days. His CF dr is going to contact some GI specialists and get some input. He is still acting fine, but we have not been able to figure out why his abdomen has been distended at random points throughout the day. Maybe we will get some answers tomorrow, but I suspect this may turn into a radiographic study...
Friday night we got home and Philip's stomach was very distended. You could see the veins in his cranial abdomen and his belly button had become an "outie". I called Dr. Schmidt to see what we should do. Philip was not in pain and acted as if nothing was wrong! He told us to take a look at him in the morning (since he has not been constipated at all). If it still looks this way, we are to take him to the ER at MCV for radiographs. He is concerned this could be a liver issue and the portal vein may be backing up (causing the veins to be more prominent), which can also cause an enlarged spleen.
Saturday morning he woke up looking a little better. Still poochy, but not tight. Dr. Schmidt sayd for us to start Miralax and cause some diarrhea for the next couple of days to flush out his system. This is Day 2 and no diarrhea! Tomorrow we will double the dose. FUN! Philip has been doing fabulous. He has not been sick since we got his Vest and has not had any issues with reflux vomiting. We noticed on days where he sleeps later and his Zantac schedule gets out of whack he seems to still do fine. So, after talking to his doc, we are cutting the Zantac down to (2ml) twice a day. Hopefully this will work and maybe he will outgrow the reflux!
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AuthorCatherine Hopkins Archives
August 2013
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