MAY 16 THROUGH MAY 20.. MASON TAKES ONE STEP FORWARD AND TWO STEPS BACK

Mason continued to be well enough for me to carry him, on the 16th I was able to hold him for about an hour. He did start getting a little aggitated so we put him back down. They continued to increase his feeds and decrease his ventilator settings. It's kind of crazy how things could go from being stable to being critical.

The next morning when I called in for an update I wasn't really ready to hear that Mason was up to 100% his blood gases were going south and he needed to be placed on a high frequency ventilator...Here we were taking another 5 steps back. I remember asking God when this was going to end, for once in these 150 something days I was finally at my breaking point...How much more of this can we take, he gets better..he gets worse...I told God I couldn't do it anymore and that is something ill never forgive myself for even thinking, let alone screaming it out loud. I had been keeping composure for so long, trying to be strong...as strong as this little boy was being but I just was loosing all hope that I could one day raise my child. As soon as I went in that day I called his doctor to speak with him about the Trach. It was obviously something he needed and IMMEDIATELY! but would the surgeon go on with the procedure although Mason wasn't doing so well and on a high frequency?? I started writing down all the questions I had for the EENT.

His vent settings were going up, but why? later that day I found out it was not only an infection that was causing this but it was sepsis, an infection in the blood stream. We started realizing that Mason was worse off being in a hospital , he was being susceptible to all the nocosomial infections Hospitals carry. His poor immune system could hardly fight them. He was of course immediately started on antibiotics.

I met with the EENT and she told me she wouldn't be able to do anything until he was clear from infection but we did discuss maybe putting in Masons Gtube and possibly removing a hernia he had all at once just so that he didn't have to go through many different surgeries. She told me I had to get it cleared by his primary and by cardiology. I met with his doctors and they told me it was all up to Cardiology.

By the 18th Mason was actually getting better, his blood gases were starting to improve and his ventilator settings were going down too. I was starting to get a little more hopeful about actually going through with the surgery and finally getting over this pulmonary hypertension problem and finally get rid of being intubated. We scheduled the surgery for Friday May 28th. I frankly could not wait..This was the final step to finally being able to bring Mason home. Just 10 more days and we can finally move on..I couldn't wait.

I could tell he was starting to feel better because he was starting to become active again. He always spent a lot of time kicking his legs but when he didn't feel good he would sleep most of the day. On the 19th Mason was switched from a high frequency vent back to a regular vent and restarted on his PO medications. I felt horrible for doubting in God like that...I remember going to the chapel that night and really asking for forgiveness, he had once proven me wrong...Everything was falling into place again. And we were back on track....or so we thought.

MAY 1 TO MAY 15/ CHYLOTHORAX IS RESOLVED CHEST TUBES COME OFF AND I SPEND MY FIRST MOTHERS DAY WITH HIM

Mason continued to be on the road to recovery, I didn't know how it was possible really. My baby had just overcome not only a Chylothorax but a Pneumothorax which both together alone should have killed him. One of the nurses had told be a few days back that they had never had a baby survive a Chylo, that was when I pretty much lost hope. Although Mason would constantly get critically ill for some odd reason I was never too alarmed, I guess because he had overcome so much that I thought he was capable of anything. But this last time, when I saw all the drainage I just didn't think he'd survive. But here we were, once again on our way back to actually taking steps forward. They continued to lower Mason's respiratory settings which was always a good sign. He was still on a high frequency ventilator but was on much lower settings, low enough that they could possibly change him over to a conventional ventilator any day now.

On May 3rd they ordered an Echo just to make sure that his pulmonary hypertension was under control throughout all the mayhem he had been through the last 2 weeks. He still had one chest tube but it was practically not draining anything, maybe a cc an hour. I emailed Dr B to ask if he would do an Xray before removing that chest tube. He said said he would order it and come see Mason the following day.

The following day Dr B came in and took the second chest tube off. He also discontinued the Octreotide. This was a huge deal for us, I didn't know how to thank this doctor who had saved my babies life plenty of times before. He told me he would continue to monitor him. I couldn't hold Mason on a Osscilator (high frequency vent) because it was giving him too much pressure to move him, But I could hold him once he was switched over to the conventional. Little did I know that they were going to switch them over that night. Part of me felt a little hesitant, what if this was pushing him too much too fast. After all he had just gotten through a lot. But Doctors knew best and I always put my thrust in the team I picked out for Mason. His first blood gas which checked his respiratory status, was good. I was a bit relieved and very surprised that even after all of this Mason was requiring very minimal blood pressure support.

The days went by and Mason seemed to be on the right track, by May 10th which was my first Mothers day with my child, I was able to actually hold Mason I spent some time at a BBQ we had with my mom at home and at around 2 I headed to Millers. As soon as I got there me and Jenna started his feed and we prepared for me to hold him. I remember holding him for 2 hours straight, until my arms pretty much gave up. I loved cherishing moments like that with him, he fell sound asleep.

The next day Mason decided to extubate so they tried him on CPAP but he did not tolerate it so they re intubated him and we started discussing a trach. At this point we were pretty certain that Mason was going to need additional breathing help for a while, he had just endured too much damage with all those extubations that it was going to take a while for his lungs to recover and a trach was probably the best decision for him. The next day his dad came and visited with me and he got to hold Mason for probably the 3rd or 4th time in Masons life, Louis was afraid of carrying Mason so he hardly ever did, I was the one who would hold him and he would just watch. At this point I was working from 8-2 and then visiting Mason the rest of the day. It was much better than working 8-6 and then visiting Mason until 10 pm. Those days were very long and very draining. I would constantly argue with him and ask him why this was all put in my hands, Before Mason I had no medical experience everything I knew was because i was on top of his care. But I was literally the one in charge of making every life changing decision and it bothered me a lot. We were supposed to be a team and he was supposed to help with everything, not just be there. That day Louis held Mason for a while, the longest Louis had probably ever held him; it would also be the last.

I wanted to see what was next in Masons care plan so I arranged a meeting with his Doctors. We discussed how evidently Mason was not succeeding at extubating and that we needed to come up with a better solution. We discussed the Trach and agreed that i would go meet with the ENT (ears nose and throat). In the meanwhile they were increasing his feeds and lowering his vent settings.This was the first 2 weeks of May and we were not prepared for what was about to happen.