Stephen's Journey: No Sleep

Thursday, July 14, 2011

No Sleep

Sorry I haven't updated since we got home from the hospital last week. It's been an extremely long week of no sleep, lots of crying and wondering why all of a sudden Stephen is so upset. My best guess, and the nephrologist's too is that maybe Stephen's teething. You can't feel any teeth yet, but yesterday he had a low grade fever, some diarrhea, and had been going to town on every paci he can get his hands on. So I'm giving him a little bit of Tylenol twice a day (can't give him much because of his liver issues), but even that isn't working. Neither are the plethora of teething toys a I bought or the cold washcloths. Its so bad that not even the swing is getting him to sleep at night. Any thoughts/suggestions would be much appreciated!!! Thankfully we see the pediatrician today too. I'm hoping she'll have an idea of what we can do too.

We also had a snafu on Sunday night when Stephen's cycler (his dialysis machine) died. Thankfully they didn't want us to do manual dialysis, which would have meant we would have had to drain and fill him every hour throughout the night, but instead, let us skip one night. I thought it would great because if Stephen didn't sleep, I could just bring him into bed with us and snuggle, but alas, that didn't work either.

Luckily the weather is beautiful today so we walked down to Shirlington (our local spot with cafes, bars, restaurants, shops, theaters, and the grocery store.... I love our neighborhood!) for coffee and breakfast and Stephen is having a great time sitting in his stroller playing. And the little French store was having a sale for Bastille Day, so we got a new little monkey blankie which he seems to really love. Right now he's got his elephant wabanub and his monkey blankie shoved in his face :) If only he could talk and then I could just bribe him to sleep!!! Or I guess better yet, tell Mommy what hurts.

6 comments:

ciaraJuly 14, 2011 at 12:47 PM
Hang in there Linds! Teeting can be a nightmare - and i have no wisdom to offer. I am sure you both are exhausted! At least you are having a nice day and enjoying the fresh air. P.S. use diaper cream if you don't use it all the time already. Vivienne tends to get a diaper rash when teeth start to come in.
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rashmi p.July 14, 2011 at 1:57 PM
Is he allowed to have Motrin? Tylenol never helped my kids when they were teething.. only Motrin did. Not sure why. And also freezing a wash cloth and letting them chew on that. xo
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AnonymousJuly 14, 2011 at 11:19 PM
Hi,
Sorry to hear that Superman is not a happy camper right now. The Dr. is probably right--It's his teeth. Never having any kids, I really can't offer you any advice. I do remeber the woman next door using some sort of numbing gel on her little guys gums but I don't know if that sort of thing would be good for Stephen. I think my Mother used some Jack Daniels on me thus starting me on my long love of the epic blend:) I realize JD would be a no-no for Stephen but perhaps a bit with a few ice cubes would help his Mommy relax before bedtime and get some needed rest:)
Thoughts and prayers coming your way...
Love,
Aunt LuAnn
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KBestJuly 15, 2011 at 7:34 AM
There is a soft toy that you can wet and put in the freezer for him to then gnaw on...it didn't work that great with my boys but the reviews for it were excellent and it may just be what Stephen needs. You could probably find it at one of the baby boutique stores (sorry I don't have the name). Also try the pacifier in the freezer...good luck!
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AnonymousJuly 15, 2011 at 10:21 AM
I can completely relate to your teething issues! The only thing that worked for us was the Hyland's Teething Gel (all natural) - I was very skeptical but it calmed our son down immediately after we rubbed it on his gums! It can bought at most CVS/Walgreen's, etc. Best of luck and I hope Stephen gets relief soon :)

http://www.hylands.com/products/teethinggel.php
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AnonymousJuly 21, 2011 at 3:51 PM
Try Hurricane Gel. You can buy it at the pharmacy without a Rx. Good Luck!
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!