March Medical Madness {Part 1}
March Madness is right. We had 16 doctor and therapy appointments this month. That is pure insanity. To top it off, we had to learn a new system of getting around. Jayson has been using his original infant seat since he was born. We bought one that goes up to 35 lbs and 34". Well, he was getting long and it was time we make the transition to the new car seat. We got a nice new convertible car seat that has six different reclining positions. It took me 25 minutes to figure out how to get Jayse inside of it, and it still didn't feel right. During our first appointment with our new system, he cried the whole time in the car because he didn't like his new seat. I struggled to get him out. I piled all of our crap on our stroller. As the nurse got his vitals his entire stroller tipped over backwards sending everything flying and pulling on his three cables. The stroller was too back heavy without the infant seat to balance it out. Wish I could have figured that out without having our oxygen tank, pulse ox, feeding bag, my purse, the diaper bag, and my soda all over the floor. The nurse was rude and did not offer to help. In fact, she acted irritated that I was late and then had the nerve to dump my crap everywhere. I cried. It's been a while since I cried due to frustration of getting Jayson around. I felt like a special needs newbie all over again. I felt embarrassed and angry. I wanted to grab my baby, pull out all of his cables, leave all my crap on the floor and run away. I got a lot of strange looks because not only did I look frazzled, but I now had mascara all over my face from crying. That first day was a day I wanted to forget. But at least I had been there before. The first couple of months I took Jayson out with all of his equipment by myself I cried every time. I eventually got the hang of it. I created a system, and could do it with my eyes closed. This was a transition and it would take time, but I would get it again. And I had plenty of doctors appointments this month to practice!!
(This was our initial routine for getting Jayson in the car and to doctor appointments. Please ignore the fact that I look hideous in this video. Looking fab is not one of my talents these days haha)
February 26, 2013
Jayson made it FIVE DAYS AND FIVE NIGHTS WITHOUT OXYGEN!!!!!!!!!!! I wasn't meaning to try this. He kept pulling his cannula off at night like he was saying, "I'm done with this mom!!!" Instead of fighting him and keeping him awake trying to get it on, I decided to wait until he was fast asleep and desatting to put it on. Well, that never happened. :) He is doing better than I ever imagined!!!!!
February 28, 2013
Jayson got to drink juice for the first time today!!!!!!!!!!!!!!!!!!!!! He absolutely loved it and blew me away!
March 1, 2013
I was so nervous for today. I feel like our special care pediatrician has been the only one who has consistently been on our side. She has always been helpful. She has always made miracles happen. What if today ends up being a disappointment? What if she is just like the rest? What if she can't help us? Or won't? I just wanted to feel like someone was taking me seriously, like someone really cared about Jayson, like someone agreed all of this chaos we have been through has been beyond ridiculous. I wanted to feel like someone was our advocate, and not just covering another doctor's butt. I wanted our doctor today to not be intimidated by our GI doc and the consequences of giving medical advice contrary to hers. I had high hopes for today.
I hardly slept last night due to my anxiety. I stayed up half of the
night getting my notes all in order as well as specific documentation of
who said what regarding this stupid feeding tube. I needed to do
everything in my power to ensure we would be heard and be able to come
up with a plan for Jayson. I also spent a couple of hours in prayer and in scripture study searching for guidance and clarity. Without fail, I got it. My gracious Father in Heaven never allows me to feel alone. In fact, I got some very strong guidance as to what needed to happen. I was guided to do more research regarding the type of tube our past doctor selected to use with Jayson and made a shocking discovery. I have evidence to believe that the hospital never ran out of the typical GJ tube, and instead our doctor made a selfish medical decision that put my son's health and life at risk. Many of our discussions flooded my mind and made me physically ill. It was so clear she had been deceptive to get herself ahead and that her medical counsel over the past few months was NOT made with Jayson's best interest in mind. She had a motive. And there will be consequences, but for now that is not important. Through my discovery and spiritual guidance I learned the reason for our confusion and this back and forth between radiology and GI. I got the impression it was to give Jayson more time to heal from his original tube placement and to give me the confidence to leave our doctor. She could not be trusted, and almost any other doctor would be a better option. I got the impression that it was not critical that I follow all of the guidance of the radiologists such as ensuring the tube change gets done in the OR, requesting a scope, etc. The most important thing was that I switch doctors. I found a sense of clarity and what I really wanted to have happen during this visit. I just hoped I could make this request in a way that does not make my disgust towards our GI doctor apparent. I needed to be professional, calm and reasonable.
As we arrived I quickly learned that our doctor made a special appointment for us. She does not typically meet with patients on Fridays. What a wonderful lady. We had a great experience with the nurses and got settled into our room. I got my notes all cued up on my ipad and was ready to tell our story. Our amazing doctor walked in and I immediately felt at ease. It's crazy how she always manages to make me feel better. Mike got to meet her for the first time, and I could tell he already trusted her. She sat down and listened. She asked clarifying questions. She didn't second guess me. She didn't make excuses. She didn't interrupt. She really and truly listened. I noticed there was not need for me to say all that I had prepared. She could read me. She knew what I was thinking, what we had been through, and what needed to be done. "So, I can see your trust in this doctor has been broken. Let's find you another GI doctor. Do you have one in mind?" That was it??? Really? I have tried soooo hard to get a new doctor and a solution to our tube problem and I have met numerous obstacles and resistance. I told her the name of someone I had in mind, simply because I heard this doctor talking with another patient's family and I liked her. She said, "I can refer you to her if you would like. Have you ever heard of this other doctor. He and I have a good relationship. I really like him and he is very direct and honest. I think you would like him and that he would be able to take good care of Jayson." That was all I needed. I could tell she meant it too. She really thought this man would take good care of Jayson. "He has a lot of experience, but also works well with other doctors. If he doesn't know what to do, he will find someone who will. And he doesn't work closely with your old doctor, so you wouldn't have to worry about that conflict." That sounded great. She said she would contact the new doctor directly, explain our story and situation, and get us into his soonest available appointment. Amazing. GI docs are typically booked 3 months out.
She didn't stop there. "What else?" she asked. I told her my desire to try and get Jayson to a G-tube, instead of a GJ. I told her my past GI doctor said it was impossible, that this process would take months. She kindly disagreed and said that it would be possible given Jayson does not have complicated GI issues. He has a tube due to aspiration. It does take time, but if I was willing to push Jayson's limit, we may be able to make it happen. She met with a team of medical professionals, and even made a few phone calls for support, to come up with a plan to wean Jayson from J feeds to G feeds in his tummy. I could not believe the help and support she was able to give me. She also examined Jayson, discussed his meds with us, and wrote us a script to get him some leg braces and additional physical therapy.
We walked out of that appointment feeling like a million kajiliion pounds were lifted off of us. I sat in our car and cried and cried. The fight was over. We had a plan. And Jayson was going to be okay.
March 7, 2013
Today was our first time in feeding therapy since autumn, and the first time since Jayson passed his swallow study!!! Jayson got to show his therapist how well he has been eating, how well he is starting to drink, and how much he loves food. In fact, Jayson at part of a fish stick for the first time in feeding therapy!!!! Jayse is ready for big boy foods!!!!!!!!
We also witnessed a miracle today. Before the Chiari decompression surgery, Jayson could NOT put weight on his legs. They would just collapse. It was almost as if he didn't know he had legs or how to use them. Since surgery we have been working on our therapy which includes standing with support. He has been getting stronger and stronger, but something clicked today. He figured out how to use and lock his legs. He stood for about a minute while holding onto the couch!!!!!!!!!!!!!!!!!!! I honestly didn't know that my sweet boy would EVER be able to do that. I was a bawling mess, of course. And like a good mom, I got this proud moment on camera!
Today marks the 2 month mark since his decompression surgery. I am amazed at the results and progress he has made. It's more than I dared to have hoped for. Take a look at some before and afters:
- before: apnea episodes nearly every night, had to shake him to get him to breathe. After: not a single central apnea episode
-
before: greatly regressed in his swallowing and didn't eat anything by
mouth for about 2 months. After: he's eating 12 ounces of stage 2&3 baby foods every day, puffs, crackers, baby snacks, etc.
-
before: Jayson was aspirating daily and especially during any feeds
with thick and thin liquids. After: he passed his swallowing test and is
now learning to drink thick and thin liquids
- before: j was on 3/4
liter of oxygen day and night, and would still desat frequently. After: j
has been off of oxygen for two weeks now with minimal desats
-
before: he had poor neck and easier control, couldn't sit up, couldn't
put weight on his legs, wouldn't reach for toys or respond to play.
After: he plays, rolls, sits up, holds his head up and travels around
the room all day. He reaches for toys and interacts with them. He can put
weight on his legs and stood independently for 1 second.
- he is
also babbling, saying momma and noms, happy all the time, has more
energy, tracking better with his eyes, is healthier, is more cognitively
aware and interactive, and has many less headaches.
This
procedure has been a blessing and we are amazed at the progress Jayson
has made in two short months. I am such a grateful and proud momma.
March 8, 2013
Today Jayson said his second word... Hi! Proud momma once again!
March 11, 2013
We met our new GI doc today. It went wonderfully. He walked in, shook my hand, and came over to the table to meet Jayson who had himself wrapped up in the doctor's paper. He was so prepared and our visit could not have gone smoother. He had talked to our special care pediatrician on the phone. He read Jayson's charts. We didn't waste any time going over the many things in his chart, like most other docs do. He just asked what I thought needed to be done. I told him I needed Jayson's tube changed out in the safest way possible. I told him it was a complicated tube and radiology has some concerns about the removal process. I told him that it is difficult to find anybody who has seen a tube like this before. He took a look and said, "Oh yeah, those are buggers. They use these a lot in Texas. That's where I worked for ten years before I came to Utah. I've dealt a lot with these. They're a little challenging to get out, but it is still an easy procedure. I have no reservations doing it. I could do it in the clinic actually, if that is what you wanted. But it's typically painful so we like to give them a little gas. We could probably schedule it for next week." I explained to him that I wanted it done under anesthesia. Jayson has to go through anesthesiology and not the sedation team due to his issues. He said, "Not a problem. We will have to coordinate that through Primary's, and it may take a couple of weeks, but no problem. Did you want a G or GJ tube?" I told him my hope of having a G tube instead of a GJ. He said, "Awesome. That's what I was hoping you would say. No problem. He's done with this GJ. He doesn't need it anymore, and soon he likely won't need any tube at all. Let's do it."
And that was basically it. He gave me a phone number to get him and his nurse directly, instead of having to go through the system. He told me his nurse would work on the scheduling, and I left with a huge smile on my face. Sometimes you know something is the right thing when it is simple, easy and just feels right. I walked out of that office feeling like things were starting to fall into place.
Our date for this procedure is April 9th at Primary Children's. We have heard all sorts of stories about this tube. It's complicated. It's difficult to remove. It can cause perforation. A couple of children have died in the process. I have spent months in anguish over the decision of when, how, and who should do this procedure. But now, I feel at peace. Sure, I will likely be purging on the bathroom floor the morning of surgery, but that's how it goes being a mom of a special needs kid. But I'm no longer losing sleep over it. It's in God's hands, and I think we've got the right people involved. And Jayson is and always has been a fighter. He's not gonna let a little feeding tube complication get him down. He will continue to amazing us all.
No comments:
Post a Comment