Saturday, February 11, 2006
So last night Eliz and a few friends were over to scrapbook (my new obsession since it has everything to do with celebrating each and every moment of Max's life!!!) and literally Eliz and I were up and down the stairs every single minute taking turns checking on Max. His heart rate was dropping low and would stay there...but as soon as I would start to get worried, it would bounce back up.
Could this be a heart issue? I don't think so. You don't want to be paranoid, but you also don't want to miss something...so of course I will err on the side of being paranoid. Better to be safe than sorry. I am calling Max's cardiologist first thing on Monday. Thought about doing it last night, but then I decided to hold him instead and "jostle" him around a bit. That worked and when he returned to sleep, the heart was acting a little more normal.
This episode reminded me of a time after Max's initial Gtube surgery and his recovery wasn't going that well. His ICU nurse, a wonderful woman from New Zealand, was flicking Max on the side of his head to snap him out of his bradycardia (low heart rate episode). And she would say in her great accent, "C'mon Maxwell, wake up. C'mon Maxwell." I don't know why but that moment will always stay in my head. The combination of her strong New Zealand accent, her flicking my 'lil baby's head, then doctors coming in...quite a memory. I was tempted last night to do the infamous flicking but I chose the more motherly, gentle approach of picking him up and kissing him all over!
Oh sweet Max, you keep me on my toes, don't you???
He has been relatively happy and calm the past few months (post heart surgery!), but he has taken that up a few notches this week. He is over the top happy and active..a little on the crazy side to be honest! It's so hysterical. He is smiling A LOT (which is absolutely adorable, incredible, amazing, and awesome!!!), blowing bubbles and making noises, and kicking like a wild man. Sometimes he even smiles when I give him his inhalers (which he used to hate and fuss incredibly) and yesterday he literally pushed it away with intense strength. I think he thought we were playing a game!
Compared to a "healthy/normal" baby, his personality is probably not much different...but you have to understand that for so long, Max didn't have the strength to interact with the world. So to see him smile and show interest is soooo incredible. He truly is "with" us now and it's delightful, absolutely delightful.
Of course with all the meds he is on (and some recent order changes), my first thought about this new "activity level" was hmmm...something went wrong with his meds. But this new happy go lucky "wild child" has been this way for days so perhaps he is just blossoming more and more! And he definitely is feeling much better and getting over that nasty bug. (Yay, another escape from a hospital stay...you're awesome Max!!!)
It's so funny to watch him! Just a few days ago, he was sleeping off and on throughout the day. He would zonk out after a few hours, sleep for an hour...and that was his routine. But that's definitely all changed! The past fast days he is up pretty much all day and always ready to go! Last night Eliz was over when I gave him his bath and he was amazed at all his kicking. He was splashing us like crazy, he was going so nuts!
Ok, just to prove me wrong about being so "happy", Max is getting a lil' fussy as I write this. I am pumping and posting...he is playing and I think getting bored without me right by his side. I keep trying to explain logic to him that I can only do so much at one time! (Quite difficult to hold him and pump simultaneously...I have tried but inevitably he kicks the bottles and milk spills. Not fun when you are trying to preserve every last drop!!!)
Unfortunately, logic doesn't seem to work at this age...it sure would help though! This morning his GTube was having some issues (not excited about that since it has only been a few days since he got it!) and so I was having to keep him still while I reinflated the balloon that keeps the GTube in place. And he was moving around like crazy and I kept begging"Max, please just be still for one minute for Mommy!!!" That seemed to make him smile even more! :) Crazy Maxwell!
I best run...I think lil' Max actually does want to catch a few ZZZ's and he needs some Mommy loving to do that. Will write more later!
Thursday, February 09, 2006
Wednesday, February 08, 2006
It is quite difficult though to comfort a crying, sick baby and listen to a doctor explain the care and changing of a Gtube!!! Here we are talking about how to literally pull out the Gtube (yes I must do that myself...eeks!) and replace it, how to check the balloon that holds it in there, etc. and I can barely pay attention because I am trying to help Maxwell cough effectively and comfort him too. (I really feel like I should be granted a nursing degree after all of this is said and done!!! Mary, can't you work on that?)
It would definitely be helpful to have someone else with us, but at the same time, I'm trying to be as "independent" as possible because this is our life for many years! And slowly but surely, we are getting the hang of it! :)
Then we went and visited the staff throughout the hospital and wow, what a greeting! First we went to the floor and everyone was SO happy to see him! We dropped off some Valentine's for some of our favorites...Max is a very thoughtful lil' boy!!! We had arranged to meet with one of our favorite RTs from the ICU, and when we did, word spread like crazy..."Max is here, Max is here!" There were doctors, nurses, volunteers, chaplains...everyone was soooo happy to see him doing so well! It was awesome! And I learned that many of them read the blog daily...thank you to everyone at Children's. YOU ARE WONDERFUL! We hope to return the favor with our guild!
Monday, February 06, 2006
Mom loves this photo! I look deep in thought, but nope I'm asleep!
Ruthie, I really, really love my duckie blankie - thank you!!! :)
Mom kept me on a wedge and on my side when I slept this week to help with my congestion. Mom couldn't stop staring at me all night...my nurse even was teasing her about it! I must say I do look mighty cute all snuggled up!
Notice my "perfect" t-shirt. How appropriate! This was my first day of PT, and I wanted to look super cute! Mission accomplished!
This is the view from our house...isn't it amazing? We might get a lot of rain, but we sure do get beautiful sunsets too! Can't wait to spend more time outdoors!
Fortunately he has the strength for a good and effective cough, but his narrowed airways and lung issues cannot withstand much congestion. He has been so congested that often he will vomit after a major coughing spell. Not a problem for a healthy kiddo, but we are not sure yet of Max's swallowing capability. (Remember, he is fed only through his Gtube directly into his stomach.) Most CHARGErs have swallowing issues...and that is worsened when you breathe as fast as Maxwell does. So when he vomits or expels anything, you have to act fast and remove everything from this mouth before he attempts to swallow and aspirates into his lungs.
What is funny though about the spit up is how excited I was when he did it the first time. I was cleaning him up and then changing my shirt when I realized, wow, that's a first! That might sound odd to a parent of a healthy child, but see with Max having the Nissen (surgery to prevent reflux - part of stomach is wrapped around the esophagus), vomiting is not a natural occurence. So I had never had Max spit up on my shoulder before...I was pretty emotional about it! :) I know other CHARGE parents know exactly what I am talking about!!!
Unfortunately, his congestion has caused his oxygen needs to triple this week, which is not great...but he hasn't surpassed the "danger" limit. He is needing to be suctioned quite frequently, which both of us absolutely despise, but his nose is so small that it has to remain as open as possible.
So despite all of this, Mighty Max is still holding his own. Quite a trooper he is! This week I have been talking with the doctors nearly every day to provide updates and change any medications and so far, once again Max has avoided another stay in the hospital! We are hoping the addition of a steroid treatment will help his lungs recover more quickly.
We have a follow up with his PCP tomorrow, and then on Tuesday we head to Children's for an appointment with surgery regarding his Gtube. Max is finally ready for the big boy version, which is great. Supposedly they are easier to maintain and deal with...I know the current one is about to be pulled out any day by our mighty man. He keeps tugging at it!
Tonight should be interesting and hopefully fairly calm. We don't have a nurse, so I will be keeping busy to stay awake. Good time to catch up on my blog entries, laundry, scrapbooking, etc. We have a nurse almost every night, so it's not too bad to have the occasional all nighter. Can't complain! The nurses have been a big help...and I am keeping my fingers crossed that insurance doesn't cancel that any time soon!
That's all for now...time to post some photos!
Sunday, February 05, 2006
The blog has been such an incredibly helpful tool to update my friends and family on everything going on with my sweet baby and our life together....the good, the bad and the ugly. It has allowed me to simply write a few words down and not spend hours on the phone repeating the same story over and over again. And on days when my "cup overfloweth," the blog has even been a good tool for me to vent to my "support group" about other issues (the divorce, challenges of being a single mom, struggles with health insurance, etc.) impacting Maxwell. Thank you everyone for your AMAZING love and encouragement through all of this...not sure what I would have done without all of you! (I have actually had several other special needs parents start blogs now because they felt it was such an effective and therapeutic tool!)
As this blog becomes more personal, I have considered making it a private site so that only family and friends could have access. However, every day I receive emails from complete strangers who send their love and support and say they have been reading the blog daily for months now. Little did I realize when I started this blog that it would be included in so much television and newspaper coverage here in WA and back home in WV...so many people have joined the Max "fan club." Just yesterday I received two more encouraging cards from anonymous people...and this week we were sent two anonymous homemade angels!
As a single mom, this encouragement from everyone has been truly amazing and helped me get through many difficult days...I would miss the support of this loving global community! :)
Hmmm....haven't decided what to do! :) Thanks again to everyone for everything!