Sunday, September 19, 2010

so tired!

Still healing. This past week has been tough. no two ways about it. The surgery took more out of Alex than we ever expected. He has slept more, cuddled more, cried more than we can remember. we are still dosing tylenol and motrin pretty much around the clock. We are almost a week out from surgery and have been now trying to let him sleep longer at night before waking him to give him his medicine but he's still letting us know he needs it. His voice is still hoarse and to hear him cry, cough and cry more because it still hurts him, its heart breaking. We try to explain that he WILL feel better, its just taking a bit longer. I hope he understands somehow. Up until lastnight, he was still on 4x the amount of oxygen then he was on prior to the surgery and we were worried that he was still having so much pain, not able to drink or eat much AND needing the extra oxygen. We coudln't help but wonder "is this normal?". We called ENT, they suggested we also talk to his pulmonary doctor and then they wanted to check him out at his pediatrician this weekend at on call.

The good news is that they don't think anything secondary is going on, his lungs are still clear even though he sounds sooooo congested and coughing a lot. They think he is still very inflamed from the surgery and thats why he's having more trouble with the oxygen, eating and drinking. It is sooooo not like our little man to fall asleep on us anywhere, let alone sitting outside on a blanket in the grass with his favorite "zoom, zooms" going by. He usually can ONLY fall asleep if he's flat on his back either in his crib (preferably) or in the car seat (reluctantly). He may eventually turn to his side or roll to his tummy but he always starts out flat on his back, never curled up with either of us. All week he has only been able to be awake a couple hours, sometimes less then before he's resting his head on our shoulder. Part of me LOVES, LOVES it because who can resist their baby curling up into you and you feel the weight of their body relax as they begin to snooze. That part is soooo sweet. The part knowing that he must be so tired and not feeling well to actually be doing that is the not so great part.

I was also concerned about constipation (the SB mommies will soooo get this) because it had been days since he has gone and unfortunately the extra sleepiness, not wanting to eat/drink, vomiting are also signs of shunt issues which can be exacerbated by what? yep constipation. The tubing from the shunt threads down to his belly so it happens sometime that if you're backed up, it can also clog the tubing to the shunt. Not always but it happens and has happened to babies of mamas I know so its running in the back of my mind. Ugh so ofcourse this is on my brain and probably will remain until he's really more back to his sweet sweet self.

They saw him this weekend and decided to put him on steroids (prednisone) for the next week to help with the inflammation and just after one dose, he already seems to be breathing easier, we were able to reduce his oxygen over night already. He's still sleeping a lot more than his normal but when he's awake, he has just a bit more pep. Oh to see a smile from him after days of not is an even more beautiful thing than usual. I swear its his way of telling us its all going to be okay. It almost feels like we have been back at the newborn stage where we are awake every hour, every couple of hours while he wakes, or the alarm beeps or just that instinct of needing to check that he's okay. Its been such a long long week in the way of "did we do the right thing?" "did this surgery do anything to help him?" "when is he going to feel better?" "Is this really JUST the recovery?" "what if something else is wrong and he's trying to tell us and we are not getting it?" ugh. I hate the worry train!! But then he looks at you with this all out grin and everything is right in the world again!!! (this definitely needs a pic here so will upload one later)!!

oh and the other part of our exhaustion? We've had to show our house 4 times in the last week as well and today was the open house. so no "I'm too tired to do the dishes right now", or " its okay if the laundry is piling up a little, or that the floors need to be swept", no "I can get to that later after we get a good night sleep." No we've had to keep it model ready no matter what. Its actually been good for us believe it or not. It feels amazing when your house is clean and organized and uncluttered. You really do look around and feel a little less stress, a little more relaxed because the space around you is less of that. really. Our house IS nice. Why didn't we live more like this before? Then the boys get up and then the trail of stuff starts all over again, and well we can just blame the mess on them ha,ha.

oh and stay tuned, tomorrow is a big, big day that we've been waiting for! Alex's mobile stander is coming!!!! I am so anxious to see what he thinks of it, how he does in it, praying he likes it!!!


Dill Family said...

I told you that we use veramyst daily for Jonathan right? I think it totally helps open up those stuffy little soft areas in his nose and throat. They say that the O2 and breathing devices irritate and inflame those areas anyway. Also, seriously get a cheapo warm mist humidifier. I think that would make him way more comfortable too. So sorry you are going through such a stressful time, I can just feel my adrenaline pumping up to "SB mommy watch" mode as I read what you are going through. Praying that everything will balance out and he will be feeling MUCH better soon!:)

Stephanie said...

Oh Holli, you guys are doing such an amazing job with your boys! I can just "hear" it in the way you type-all the love you have for them pouring out on the screen right before my eyes. I've been thinking about Alex all week and am so thankful for your updates. I can't imagine how difficult this week must have been, but it's great to hear that Alex is finally starting to come around! And just wait until that mobile stander gets there-he will really pep up then! He's going to be unstoppable! I can't wait to see pictures! Sending lots of love and hugs to you and your little guys! :)

Holli (and Mark) said...

thanks girls, your comments always lift me up!!! Its soooo nice to see how much people love our boys and we are so thankful for the extra prayers.
oh and I have to ask about using something in his nose, when I asked in the PICU they said nothing then because it would interfere with healing but maybe that period of time is over or almost? What is veramyst? I'll have to look it up. We did start running his humidifier a few days ago when someone else suggested so hoping thats helping him too. I'm hopeful though these prayers are already working, last night he definitely had a better night, less waking up and less oxygen required so I'm soooo hopeful he's finally turning the corner. thanks again for the love and suggestions--both are sooo appreciated!!

Joanna (and David) said...

Oh sweet momma I HOPE and PRAY he turns the corner soon too! I am just in awe of your strength to do all this but I understand too that momma-instinct that just kicks in because you HAVE to - it's your baby. I'm so sorry you have all the extra worries and fears that come with SB - it makes every odd behavior (sleepiness, no appetite, fussiness) that much more concerning - even when there is a good possibility it is not anything but recovery. Oh man oh man - hang in there. All of this has been SO exhausting I can't imagine. But just like you keep telling Alex it's gonna get better - I'm gonna keep telling you it's gonna get better and I pray it's soon! :) Sending you love and well-wishes.

Jill said...

I can't believe you're managing all that AND keeping your house clean!! OMG, I'm exhausted thinking about it. :( I'm glad you're at least getting to enjoy the snuggles in amongst all the worry and anxiety. Your description of it made me melt! I love snuggly kids, but yes, much nicer when it doesn't come with not feeling well. :( Lots of love for you guys! Hope your house sells soon and your angel is feeling better.

Gillion said...

are you getting better now? Pei Pa Koa ( ) is one of the few Chinese natural cough remedies that have been scientifically studied. it's something like herb plus honey, and it's sweet, thick and black in color. If you have a cough, look for it! It used to be one of my favourite natural cough remedies.

if your cough persists, seek professional help such as traditional Chinese medicine physicians - I have had very good experiences with them.

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