Wednesday, June 6, 2012

baby maximus: hospital days

I never ever thought there would be a day when I am happy when my kid will eat chocolate, or canned syrupy peaches, or drink processed meal replacement.  How about when we cheer when he will eat ice cream?  Or when we are glad that he finds comfort in watching TV.  He needs calories and he needs comfort and things that I am usually kind of against are things that we are turning to.  

Hospital stay keeps getting longer and longer.  At first we thought a couple of weeks.  But when they went into surgery on his left hand, they found that he was burned past the fat and nerves all the way down to his tendons.  So they are trying to reconstruct the padding.  They will check that in a couple of weeks and then they can maybe graft it.  And we will do this whole process with his left hand and his left thigh.  So at least another two weeks after that.  

Maximus is not comfortable.  He rolls, he wriths, he kicks, he pulls.  Sometimes he sleeps and sometimes he just lays there.  Something I have never seen him do.  He never just lays there.  Today he was sleeping and his eyes opened so wide so suddenly and he yelled, "Mom!" and he seemed so scared.  His heart rate shot up to 189 (120 is normal for a kiddo his age).  The nurse rushed in and saw him just as he was settling down.  She said that burn patients often have nightmares of the accident.  Sadness.  

Here is Maximus in his bead head glory.  Trying his best to get comfortable.  
He is constantly trying to pull his cords off.  He only has one free foot and he knows how to use it.  
Karl has been sleeping here (or rather trying to get some sleep here) nights so he can go home and work during the day.  This is our set up.  Saggy, but sufficient, cot next to Maximus's hospital crib.  The staff here is so very nice and do their best to make us feel comfortable in our temporary home.  Though he will not have feeling in his left hand, and some places on his right, I do believe that he will get better.  So, until then, it is just endurance.  I can do that.  Not to brag, but it's one of my skills.  But not complaining is not one of my skills and if I have one petty complaint is that we have to walk out of the burn unit and kinda far to use the bathroom.  And I really really hate using the nurse call button to tell someone that I need to go potty.  I haven't had to ask permission since I was in grade school.  I have to time it so Maximus is happy or sleeping when I leave and then I almost always know that I am going to come back to a crying Maximus because he has some sort of mom detector that knows if I leave the room.  Hehe.  Maybe my timing skills will get better the longer we stay here.
He used to say or sign more, please, thank you, down, dad, book, juice, milk, drink, eat, cereal, cookie, cracker, shoes, mommy (he was calling me-maw for a while which I thought was so funny) , no, yes, uh-oh, and bird.  He was never a kid of many words but he was very expressive.  And now he says even less... no, mom (which means me or Karl), eh (which means anything), and uh-oh.  They said it will all come back.  It must be so frustrating for him to not even be able to point at what he wants.

It's getting better, though.  Karl said last night that Maximus was blowing kisses.  Which in his language is the universal sign.  It means goodbye, thank you, and good night.  

Once again, thank you for your kind words of support and love and for you prayers.  They are really helping Maximus, I just know it.  

Here is a video of our family not too long ago.  Maximus throwing little rocks the whole time, Samuel jumping from rock to rock like Spider Man, Karl relaxing by the rocks in the rive, and Eva standing on the rock getting ready to yell, "I'm king of the world!"  Carefree times.


Nicole Jensen said...

Oh, sweet baby :( I'm so sorry that you have to watch him suffer so. You're in my prayers.

Jenn Randall said...

Just wanted to add our love. We have been keeping ourselves updated on your blog. Our hearts are hurting for you. I know how much prayers can add strength and calm in a time of trial and chaos, so you are in ours. Hope your courage remains, as does his. It doesn't help while in it, but a tiny bit of experience tells me that kids do bounce back faster than we think they will. I hope that is true for him...seems like he's been a trooper all his life. Love and hugs to you guys!

Hyeyoung said...

Thinking about Baby Maximus and you and your sweet family. I can't even imagine what you and Karl are going through - but praying for some comfort for all of you.

Abbigail said...

He does not look comfortable at all! Being hooked up to all those tubes and drowsy on medication is literally the worst. Any word on how his skin grafts are healing?

Ryan can relate to Karl on overnights next to the hospital bed. No one gets good rest at a hospital. I am glad that you have been able to work it out that he is never alone. (other than the occasional bathroom trip)

We love max more than words can say. We like his parents pretty good too. Take care of yourselves, don't forget to eat and get sleep. Sounds silly, but I know it can happen.

Dominique said...

I found you through my friend, Natalie. Oh, my heart is with you and your sweet little boy. Hugs from a stranger. (ps: you write beautifully)

Sean, Em and Milo Volk said...

Thinking about and praying for all of you, and especially Maximus! We love you.

Anonymous said...

Seeing his pictures makes me want to just cuddle the guy!

Ginger said...

oh sweet boy, my loves and prayers and thoughts and everything I can muster is headed your way, wish I could help!

Adri said...

Awwwwhhh.... Sweet baby!


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