Henry has been sleeping much less than he used to, however he was just given a dose of benedryl/reglan... he couldn't help himself. :)
The belly is actually much smaller when compared to a few weeks ago, some day it will be gone completely and you'll all think I was just making it up.. The rolled up blanket with coband on it, is the tube for oxygen "blow-by" 
Really only likes to have his blanket it his face, but if he moves too far away from his oxygen tube the alarms sound and mom shoves it back in his face again. At least the drugs help him sleep heavily enough he doesn't care anymore.Well we began round two yesterday morning, and today Henry is feeling awful to say the least. His nausea is back a bit worse than last time, and much more grouchy with mom. It's awkward to hold him right now because he's hooked up to so many things, and attached to sat monitors and oxygen again, I think many times Henry feels more comfortable just laid out in his bed.
This evening we moved rooms...so we have our own room again! YEAH. So much more convenient and private. Although the window isn't very big, I'm grateful to have a room of our own again.
Our nurse decided to check Henry's oxygen levels this afternoon and decided he was too low, and in need of blow-by again. I'm not sure why but the monitor alarms drive me mad... my blood pressure spikes and I'm ready to start breaking stuff and tearing things out of the wall. Scary I know, not sure why it happens, but I've started practicing my numbers again.. 1..2..3..4..and if that doesn't work I have to try breathing slowly. A bit dramatic I'm sure, but it makes life a bit more stressful and nights a bit more sleepless. The resident on call said that when we have fevers, high fevers like Henry is having, we tend to need more oxygen. Since Henry's lungs aren't the strongest, due to his rather large belly, he needs it even more. I guess the only thing that calms me down when everything starts alarming is thinking to myself that Henry really needs it.
On the plus side, Henry is definitely more active and way more interested in playing than laying in bed sleeping. A friend down the hall has a walker for her little girl that she found at WalMart so I'm thinking about hitching a ride or having someone pick it up for me so Henry can start practicing and exercising.
I HATE alarms as well. That is why I never went into peds. You are brave. I think you need one of those stress squishy balls of some sort. Good luck. We pray for you & Henry & that the aggresive chemo continues to work magic. May the Lord bless you in all things. If you have a chance, you should read ch. 31 from Joseph Smith RS book. It is all about Liberity Jail. We had the lesson today & I thought about you. I pray the Lord holds & comforts you at this time of need. Love you lots & Happy Mother's Day:):):)
ReplyDeletehi sunshine, I want you to know how much we love and pray for you guys. Please let us know if there is ANYTHING and i mean ANYTHING at all you need. Please don't hesitate to ask. I feel so helpless here and I would love to help. I love you so much you are the greatest/strongest mother ever and I look up to you in so many ways. Happy Mothers Day Lisa We love you!
ReplyDeleteYesterday as I explained my frustrations to Joel, about being seperated from my family, and continually waiting for Henry to heal, it's hard not having an end in sight.. I guess life would be a lot easier if we could always see the end of our experiences...He reminded me of the early members of the church who left wife and kids to serve missions, and my sister reminded me about the liberty Jail experience too. I'm so blessed to have a solid foundation of friends and family to strengthen me when I am down and weak. I love you all so much and couldn't do this without your help. I know the Lord is using you as instruments in his hands to uplift me in my trials. Thank you so much!!! I pray for you all every night!!! Much Love!
ReplyDeleteOh girl, you deserve to have a hard day or two. I think the hardest thing for a mommy is to see her little ones sick. We would trade places with them in a minuet. One of the things the Lord reminded me of during my hard days was how many people loved us and were praying always for us. It amazed me to see the hundreds of people whose lives were touched for good because of our trial. People I didn't even know that were friends of friends praying for us, of all faiths. Jewell joked once that that was the reason she was going through this so she could help bring all faiths together. I actually got a glimpse of what people mean when they say they are thankful for a trial. I get comfort when I remember the Atonement and know the Lord knows just what we are going through because hes been there. He loves you, we all love you, you may feel alone in that room but you are in all our hearts and thoughts. Hang on, love you
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