Where to start. I guess I'll continue from where I left off last Friday, if I can remember it all.
Just as I finished blogging on Friday the phone rang. It was Dr. Harries calling back that Silas' sodium levels were actually as low as the first test said. She told us we needed to get to Children's as soon as possible. Fifteen minutes later we were out the door. We packed some stuff in case we were admitted.
Once we got there we found out that his potassium levels were too high along with his low sodium. They quickly started him on IV because high pot. levels can cause heart problems and low sodium can cause seizures and coma. They immediately told us this was absolutely for sure a birth defect and that the levels couldn't be caused by an infection or dehydration. They said he did have a UTI (bladder infection) but that had nothing to do with his low weight or Electrolyte levels.
Once we were admitted they gave us the probable diagnosis of Congenital Adrenal Hyper-Plasia. This would mean he wasn't producing the hormones his body needs for all the different functions. They gave him a drug to lower his potassium and insulin which is also supposed to help. Then they kept checking his blood to keep an eye on it.
So Roy and I spent our fifth anniversary sleeping side-by-side on a hospital chair cot which was so narrow we had to lie on our sides to squeeze between the armrests.
Saturday his potassium went too low from the drugs they gave him and they didn't think that made much sense but kept to their diagnose and discussed starting him on the steroids he would need for the rest of his life.
In the end they decided to wait for the hormone test results which were to come within the week. For "some reason" his levels stabilized without further treatment and never did go out of normal range again. The poor little guy had so much blood taken he looks like a pin cushion! By Sunday afternoon they were starting to doubt that he had CAHP and that was the best news! They now have changed it from impossible that it was an infection problem, to that being the diagnosis! Thanks God!
Silas was so good and so happy there that the nurses couldn't believe it!
When I was pregnant with Silas they saw by ultrasound that his one kidney was dilated (enlarged) and so they checked all that with dye tests and ultrasound. His left kidney and ureter are still dilated and so that could be why the bladder infection went to his kidneys and cause the kidneys to mess up his levels. In a couple months they are going to check it again and see if further treatment is necessary.
In the five days we were in the hospital he gained twice as much (11 oz.) as he had gained in the last six weeks! He started to look better and hasn't had a fever since Thursday. My parents said they hardly recognized him because he got his colour back and filled out alot! He will remain on antibiotics for a few months to ensure he doesn't get another infection. He got home around the time our flight was leaving for Holland. It's quite disappointing that we have to stay home but the health of our little guy is so much more important!
Thanks so much for all your prayers and we will keep you updated if anything changes.
Just as I finished blogging on Friday the phone rang. It was Dr. Harries calling back that Silas' sodium levels were actually as low as the first test said. She told us we needed to get to Children's as soon as possible. Fifteen minutes later we were out the door. We packed some stuff in case we were admitted.
Once we got there we found out that his potassium levels were too high along with his low sodium. They quickly started him on IV because high pot. levels can cause heart problems and low sodium can cause seizures and coma. They immediately told us this was absolutely for sure a birth defect and that the levels couldn't be caused by an infection or dehydration. They said he did have a UTI (bladder infection) but that had nothing to do with his low weight or Electrolyte levels.
Once we were admitted they gave us the probable diagnosis of Congenital Adrenal Hyper-Plasia. This would mean he wasn't producing the hormones his body needs for all the different functions. They gave him a drug to lower his potassium and insulin which is also supposed to help. Then they kept checking his blood to keep an eye on it.
So Roy and I spent our fifth anniversary sleeping side-by-side on a hospital chair cot which was so narrow we had to lie on our sides to squeeze between the armrests.
Saturday his potassium went too low from the drugs they gave him and they didn't think that made much sense but kept to their diagnose and discussed starting him on the steroids he would need for the rest of his life.
In the end they decided to wait for the hormone test results which were to come within the week. For "some reason" his levels stabilized without further treatment and never did go out of normal range again. The poor little guy had so much blood taken he looks like a pin cushion! By Sunday afternoon they were starting to doubt that he had CAHP and that was the best news! They now have changed it from impossible that it was an infection problem, to that being the diagnosis! Thanks God!
Silas was so good and so happy there that the nurses couldn't believe it!
When I was pregnant with Silas they saw by ultrasound that his one kidney was dilated (enlarged) and so they checked all that with dye tests and ultrasound. His left kidney and ureter are still dilated and so that could be why the bladder infection went to his kidneys and cause the kidneys to mess up his levels. In a couple months they are going to check it again and see if further treatment is necessary.
In the five days we were in the hospital he gained twice as much (11 oz.) as he had gained in the last six weeks! He started to look better and hasn't had a fever since Thursday. My parents said they hardly recognized him because he got his colour back and filled out alot! He will remain on antibiotics for a few months to ensure he doesn't get another infection. He got home around the time our flight was leaving for Holland. It's quite disappointing that we have to stay home but the health of our little guy is so much more important!
Thanks so much for all your prayers and we will keep you updated if anything changes.
So glad you were able to come home and that it wasn't a birth defect. Hope you still have a great Christmas even though you aren't able to go to Holland.
ReplyDeleteWat een opluchting dat jullie weer thuis zijn, wat is goed en genadig God voor ons allen.
ReplyDeleteHeel de gemeente van Naarden leeft en bid met ons en jullie mee.
Veel liefs en groetjes
pa en ma
postscriptum; 13-12 bellen wij:
Gelukkig is de kleine man weer thuis en gaat het beter met hem!
ReplyDeleteWe hopen dat het maar goed mag gaan met de kleine man en nog heel veel sterkte.
Geef silas maar een knuffel van ons!
Heel veel liefs Barry, Petula en de drie boefjes.
What a Mighty Good we serve, what a mighty God we serve! Reigning from above from His throne of love, What a Mighty God we serve.
ReplyDeletelove and hugs, auntie inge
Wow, what a boofie. Love the way his toes are curled in that last pic, so cute. Thanks for updating Steph, and definitely Praise God for this awesome outcome. We'll be keeping you guys in prayer in the coming months.
ReplyDeleteAAwww the first picture made me sad! IM so happy he's better!.... I fell in love with that boy when i was out a few weeks ago... I bet he was such a good boy in the hospital, bet he charmed all the ladies. :) Sorry you guys didnt make it to holland.... give the kids hugs for me:)
ReplyDeleteJess