Friday, October 06, 2006
He went to sleep super early (very unlike him and another sign that something might be off with his heart) at 5 p.m. and didn't wake up until midnight when I woke him up to meet his Auntie Kirstin. Plus he needed all of his meds, diaper change, etc. From 5 p.m. until midnight (when his nurse arrived), he brady'd pretty much non stop. It was absolutely crazy.
Who knows what in the world is going on? He is wearing the halter (heart monitor for 24 hours) so at least we will have a record of everything. I talked to cardiology several times today and they are discussing what to do. The odd change over the past day is that now his "awake" heart rate has decreased significantly too.
Now I am not telling you all of this to stress you out or worry you. (I'm doing enough of that for everyone, trust me!) I just want to keep everyone informed. And I am confident that whatever is going on with Maxwell, we will fix it. Remember, he isn't called Mighty Max for nothing! :)
Please keep us in your prayers...him for his health and me for my sanity! :) Thanks!
* Tomorrow we are supposed to get together with his CHARGE friends in Seattle. Hope we can still go and not be in the hospital instead!
Auntie Kirstin arrived last night so she came with us and helped a lot during our appointment. I have been a bit cranky and needy these past few days, so an extra set of hands this morning was great!
It was a very emotional appointment for Mommy as she had to explain everything from the past year to the doctor...divorce, moving, my early arrival, my special needs, the works.
As suspected, the doctor believes the shortness of breath is due to "caregiver fatigue". (Mommy was kind of hoping it was allergies or something so they could just give her some meds and fix the problem!)
Even though it probably is stress, the doctor wanted to make sure because of the severity of some of the episodes. So Mommy had to get an EKG just like I did yesterday! That was really funny to see her all wired up. Then she had to get a chest xray and blood work...again, just like me!!! It was all very surreal for Mom.
Anyway, the EKG came back normal but we don't have the other results yet. I must say that Mommy was a good patient, I have taught her very well! :)
Now I guess I should tell you about my heart issue (next post)....let's just say I am keeping my mommy on her toes, that's for sure!!!
While Mommy was on the phone this morning with all my doctors, I decided to cheer her up with some of my latest moves...
You know that saying, "I feel like I'm just hitting my head against a brick wall"? Well, I decided to try just that! For some reason, I love this corner and love to bang my head into the wall. Apparently I think I can knock it down? Mommy thinks it's quite funny!
Hey there gorgeous. I don't think the wall is going to budge, do you?
If only my head wasn't so heavy, I could really enjoy this creeping/crawling thing a lot more! (How impressive is Mr. Max on his knees??? YAY!!!)
Hey, whatcha writing about me Mommy? Are you telling everyone how I keep freaking you out with my weird heart rate? Sorry about that...
Oh geez...did I just read about how wonderful and amazing I am again?
Thursday, October 05, 2006
So finally after monitoring him closely and realizing it wasn't stopping any time soon, I paged the cardiologist and she was confused as well. First we thought I should take him to the ER. But since he has done this before and nothing came from it, she thought I could keep him at home and have our night nurse record everything in detail. Sure enough his bradys lasted all night long. This is definitely new for Max. And then right now he is doing it again during his nap...very, very different for him.
*Just got a phone call from the cardiologist and they want an EKG now (for any acute changes that need attention pronto) and a halter for the next 24 hours to monitor him overnight. On the phone right now making those arrangements...
I love playing with the tape measure! The doctors always give it to me to keep me occupied!
Hey there Mom!
Look at me, look at me! I'm so strong!
Welcome to my EEG adventure!
This test was much more comprehensive and intense than my EEG performed a few months ago in Bellingham. But nonetheless, I handled it all like a pro. Colleen, my technician, said I was one of the cutest, happiest and most well behaved kiddos that she had ever worked with! Yay for me! She also was very impressed with how happy I was...she said it was obvious that my mommy does a good job of treating me like a "typical" boy, not a sick baby. We thought that was an interesting observation!
As you know, the camera is a great distraction for me during tests so once again Mom was snapping away! Plus she thought I looked just too cute with my crazy head gear!
First the technician marks off all the different areas on my head for the electrolodes.
Then she attaches them with very sticky gel and cotton.
Look at all those wires!
Then she wraps my head in gauze to keep everything in place. (Notice I had to be swaddled too because I kept moving around!)
The technician teased me and Mommy that I should be a "mummy" for Halloween because I look so cute in gauze! :)
Too late Colleen, we already have my Halloween costume! And if I do say so myself, I am the cutest lil' baby puppy ever! (Wait until you see the photos...we had them taken last week at Picture People and I look ADORABLE!!!)
Hey Mommy, my turn with the camera! :)
Once we were ready for testing, Mom tried to calm him down by holding me. But that just gave me the opportunity to play with her face. Laying down with my book seemed to help a little bit. The test monitors your brain during various states of activity, sleep and the transition from one to the other. I never did get to the sleep part...despite their best efforts!
This was a funny part. The black box had a light in it and it would flash very quickly. For some people this will induce a seizure. I thought it was very funny! It reminded me of mommy and her camera.
Ok now this light is just starting to weird me out...what in the world is it doing?
Hey Mom, anything you can do about the paparazzi in this box? They are taking photos like crazy and it's a bit annoying.
All done! Time to remove the wires! This was quite a messy job and my hair was crazy with all that gel in it.
Wednesday, October 04, 2006
He sure keeps us all guessing. As I posted earlier, he was pretty miserable all morning. Finally after being off feeds for a very long time, he stopped vomiting and basically passed out. When I woke him up to take him to the doctor's, he was a much different baby. I even got a smile...and that was absolutely impossible this morning! So I was pretty encouraged.
AND when we weighed him, he actually had gained weight this past week. What??? How??? I was blown away actually. We have been behind on his feeds every day for the past two weeks because of the vomiting yet he still managed to pack on some pounds...or ounces that is! He now weighs NINETEEN pounds. Yay!
So that's the good news. The bad news is that no one really has an answer to our vomiting/failed Nissen dilemma.
I spent most of the day on the phone with the various specialities involved and there is no clear answer. Repeating the Nissen is not an easy procedure and can have more complications the second time around. We certainly don't like that word..."complications." There are various other options too, including giving him a GJ tube that feeds directly to his intenstines. However, keeping him on the pump 20 hours a day would be very, very, very difficult...I think impossible. He is getting quite mobile these days.
The other option is simply be patient and hope it stops eventually.
Who knows what the right answer is. I set up an appointment with his surgeon and we will discuss the various options. We might need to have an overnight stay soon (next week?) to do a 24 hour PH probe, which will show the amount of reflux over the course of a day.
Meanwhile we are just hoping to get through this current situation. Right now we have stopped all formula feeds and I am only giving tiny, tiny amounts of Pedialyte to keep him hydrated. If he does not tolerate that, we are going to admit him to the hospital so we can get an IV started. Hopefully it doesn't come to that.
This morning I was really worried because he appeared so lifeless and pale. But I am much more reassured after his turn around this afternoon. We even had speech therapy today and he participated a little. Ok, he wasn't in the best of moods but showing anger and frustration is speech too! Actually the therapist liked that he was telling me so clearly what he did and did not want. (He did the same in the doctor's office. I was holding him and talking with the doctor and Max was trying to pull his Gtube out. I tried several times to move his hand and tell him "no" and boy, he wasn NOT happy about that.)
Thanks for the emails of love and concern...very appreciated! Max is taking another little nap right now so I best use this time to do some laundry and clean his room. We made quite a mess this morning with all that vomiting.
After being up pretty much all night, he finally went to sleep this morning and I tried sneaking in a little milk. But sure enough, he vomited that up within minutes and was crying miserably. And again a few minutes later....and again...
I am exhausted but no point in laying down. My mind is racing about what we are going to do. I already made an emergency appointment with our PCP this morning and put out calls to pulmonary and surgery too. Each are going to arrive to work and get voice mails from a very stressed out and sad mommy!
Monday, October 02, 2006
It's about every other day that he vomits, and I am doing everything I can to prevent it. Just tonight everything was going great and we were right on track with the feeds. Then he wakes up from his nap and vomits like crazy. Very upsetting for both of us.
I am going to talk with pulmonary tomorrow and ask that we involve the surgery team again and get their thoughts. Something needs to happen. I know we don't want to put him through another surgery unless it is absolutely necessary, but this is also getting ridiculous.
We have a nurse tonight so I am thinking I will have her wake up Max at 2am and play with him. Then he and I will head to Seattle around 4:30 am and get there about an hour or so early. That way I can play with him and wear him out again, because I'm sure he will sleep on the way. If only he knew how to drive, this would be great. I could sleep and he could drive...perfect!!!
After the test, we have 5 hours until we meet with the neurologist to discuss the results. Not sure what we are going to do because Max will want to play, nap, etc. and I don't really want to hang around the hospital too much because of germ exposure. We'll figure something out. We might try and get the ultrasound for urology...hopefully they can fit us in.
I am trying to not get nervous about the EEG. My suspicion (I'm an eternal optimist about Max, I know!) is that everything will be ok, but he definitely has some strange head movements that are causing some concern. Each therapist and doctor has their own theory. Hopefully my gut is correct, but I am also hoping the neurologist can explain better exactly what is going on with my lil' guy.
All the other kiddos were trying yummy banana bread but Max tried pureed carrots and beef. Hmmm...he better learn how to eat soon so he can enjoy all the yummy stuff too!
After snack time, Maxwell showed everybody his new "creeping" (attempt at crawling on knees but with head down). They were very impressed! :)
I am so happy with our Birth to Three program in Bellingham. We are very fortunate to have such wonderful therapists and an active special needs community. :)
Sunday, October 01, 2006
Hey Mom, I'm unsnapped here. Can you help me out?
How much longer do you think the doctor will be?
You've gotta be kidding me.
Well then, I guess I'll just kick back and relax.
My camera seems to bring much joy to Maxwell, and it also serves as a great distraction for him during stressful times.
I used it during this week's blood draw and it helped tremendously!
Here's Max doing his new favorite face - Mr. Fish! So cute! With the camera out, he isn't even noticing that his foot is being warmed up to draw blood.
And of course, there were a few tears. But I'm telling you, this camera works magic! He only whimpered for a few minutes and then was over it!
What a trooper...already calming back down. You are one amazing lil' boy Mr. Maxwell!