Well of course, NOTHING ever goes our damn way. Every time Max falls asleep his oxygen saturation drops into the mid to upper 80's and supposedly into the 70's at one point. So, the doctors are thinking that the finding of the new hernia is the culprit. They have stopped the peritoneal dialysis to see if he does it overnight, which I am pretty confident he will since he has been doing it all day while not on dialysis. It looks like we won't be getting discharged tomorrow morning like originally planned if this does happen.
They are also wanting him to see a pulmonologist and I am petrified of what he's going to say. My absolute BIGGEST fear that I live with in the back of my head every day is that he is outgrowing his lungs. It's times like this that make that fear come alive and haunt me until the problem is resolved. I just can't even stand to think about it.
There is discussion between Max's surgeons, urologist and nephrologist that they will probably be going in to fix the hernia so that it can start the healing process. I have heard that it will be months before they will be able to restart PD after the repair for the sake of it breaking through the stitches into his pleural cavity.
The positive thing is that we know he can tolerate PD. The bad thing is that we can't use it as a secondary dialysis until the hernia repair heals completely. So now we are on pins and needles that his hemo cath stays working.
I don't know what else to say besides that I am so freaking tired of this crap happening to him. I am emotionally and physically drained and don't know how much more I can take. I haven't slept in 3 days and there's no point in going home to sleep because I wouldn't be able to tolerate not knowing what's going on here. I wish we could fast forward to five years from now and have all of this behind us. Although I am starting to think that this will NEVER be behind us. I feel like we're being punished for something but will never know what it is. It's one thing after another. Will he ever be able to live his life without being hooked up to tubes and wires or have to be in and out of the hospital or count down the days to his next surgery? Will we have to celebrate his first birthday in the freaking hospital? How do you plan such a huge celebration that is 2 months away when you don't know what the heck is going to happen within the next 24 hours?
Thanks for letting me vent. I'll be better as soon as we get some more information tomorrow. I get like this every time we get more bad news. I then have to sit on it for a day and I think about the positives and then I get better. The one positive that we got out of this is that they found the hernia. We also wonder if he has been desating for awhile now and just never knew it. So that's another positive. We're so thankful that they found these things before it got REALLY bad, but so mad that they keep finding more things wrong with him. We also know that, so far, all of the findings are fixable, but at what point will he say enough is enough? We know that he is such a fighter and won't stop without a fight, but it's so hard to see your baby go through such horrible things. He is so much stronger than his mommy and daddy, that's for sure.
Please keep him in your prayers. Have a good week everyone.
9 comments:
i wish i had words that could bring you the strength and comfort that you need right now. you are doing an incredible job, max is doing an incredible job. just hang in there + know that max is in my prayers. hugs...
{{hugs}}
Keep fightin' Max, we're pulling for you buddy.
I've read all your previous posts and know you are all stronger than you know you are. Hang in there and remember yesterday is gone, tomorrow is a mystery that's why they call today the present...because it is a gift. May God give you strength...we are all praying for you. You are not alone.
Dear Beth and Tim
I have been following the blog since day one. I can't even imagine what it is like to be going through this. All I can do is pass on advice that was given me when my firstborn, at age 2, had to have heart surgery. His situation is not even comparable to yours, but none the less, I look back and wonder how the heck I got through it as I was only 23 years old at the time. Fortunately, my then 2 year old son is now a healthy 33 year old! I expressed the same feelings to the cardiologist as you are expressing.....what am I being punished for, what did I do wrong, what did I do to deserve this. The cardiologist assured me that I did nothing to cause this, that it was a fluke, and to please don't let this keep us from having more children. Maybe it was in the manner he said those words to me, but it stuck, and I felt the weight lifting. I put it all on God's shoulders, and the wonderful cardioligist at Children's. Do yourself a favor and please don't punish yourself by feeling guilty about Max's condition. It's not anyone's fault. It happens, for whatever reason, we will never know. It certainly tests your strength, and that is what I pray for...that you and Tim and all the extended family remain strong through all of this, and I also pray for a speedy and positive outcome. Judy W.
to my favorite daughter and my favorite son-in-law.....
Beth, you had a quote pusblihsed way back when Max was first born .. something to the effect "you gotta be strong for your child." Both of you are strong and will continue to be so. Max is testing you and probaby smiling while he's doing it.
Love ya....dad
Keep looking for those positives. You and Tim are amazing parents, and you both exemplify what parenting is all about-love, sacrifice, courage, and so much more. Max is so lucky to have been born to such giving and faith-filled parents. Continued prayers are coming your way.
Love, Kristina, Cory, and Anna
((HUGS))
I wish there was something more that I could do or say.
Maybe he is just getting all of his troubles out of the way so he will be the most perfect teenager in the world. Always home by curfew, doesn't date until 30 years old :), and always be Mamas boy.
(HUGS)
Denise
This probably won't be very popular with my co-Catholic friends, but I think that Max was created the moment the sperm hit the egg. Somehow, in the fetal development process, Max developed this abnormality, which fortunately was detected before it cost him any chance of life.
Your skilled surgeons and specialists have put Max in the very best position to survive this thing, albeit one day and one crisis at a time. I sincerely doubt that our God would intentionally inflict such a "punishment" on anyone. I do believe that something simply went wrong in the fetal development process, much like a deformation etc..
I believe that even God would admire your resolution in seeing this challenge through, and will reward you for your efforts in sustaining the life of one of his creatures.
Blaming yourself only compounds things, and adds another layer of stress to an already stressful situation.
The sun will be back up tomorrow morning and another day/challenge will be in the books. Follow the lead of your doctor who wants nothing more than to receive your son's high school graduation notice.
Max is oblivious to what is happening around him, other than an awful lot of folks love him and care about him.
Keep the faith!!!
DS - Individual Opinion
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