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.

APRIL 16 TO APRIL 30/ MASON GOES DOWNHILL, GETS BABTIZED AND WE ARE ASKED TO TAKE HIM OFF LIFE SUPPORT

Mason continued to be unstable, he was NPO which meant he was not doing well at all, I hated these times. Not only was he dealing with those 2 chest tubes draining but he got a very bad infection. The infection started out in his urine but they started suspecting that his PICC line was infected. Without his PICC there was no way they could administer medication, we basically could not have an infected PICC it could be very dangerous as putting a new one in was not easy with Mason. His respiratory status was improving a bit but he was still draining about 290cc's, he was draining so much that they had to change the pediatric suction tubes to adult ones since they were replacing then very frequently. I did not understand why this was happening, I was confused did Dr. B not go in there to close the duct that was leaking all this fluid? I was so worried that I had to contact Dr.B myself. I went out of my way to email him I did not think I would get a response I emailed him on the 16th, 2 days went by and on the 19th I got a response back. He had a way of just calming me down, he didn't know just how much I trusted him. He always knew what to say, This was the response I got which made perfect sense. As you can see below Mason was very swollen.

Although I had heard from Dr. B I asked my social worker Jennifer who was always so great at helping me plan meetings with Masons doctors if she could schedule a meeting. I knew we were dealing with the chylothorax but this was something we might be dealing with for weeks. I wanted to start addressing Masons other problems. She actually managed to get me a meeting with Dr Strout, the head chief of the NICU. Yea he has a high position but had this Dr been following my babies care? We discussed some things with his cardiologist about discontinuing the INO and starting him back on Viagra. The only reason why Mason was on INO (Inhaled Nitric Oxide) was because he was NPO and Viagra was a PO medication. Once we could restart Mason on PO meds he could come off the INO. He agreed that as long as no residual was coming out of his repogle that they could try it. That's when this Dr gave me his opinion, he told me something I will never ever forget. He told me that I needed to start re-evaluating what I wanted to do for Masons life, and that there was going to be a time where they were not "Doing things for Mason, But just doing thing to Mason" and that I should consider taking him off life support. I was so offended, did this Dr not know how hard my baby had been fighting the last 4 months? Did he not know everything he had endured to that day? Did he not know that Mason had proved all the Miller Children's Dr's wrong? They have always questioned Mason and he has always proved them wrong..Why should I give up now cause some Dr that happens to run the NICU tells me too? I politely declined and the meeting ended. I stated my feelings to Masons primary as well to my social worker. I decided that day that I was going to stay with Mason, So I told the social worker to get me a family room....I was not leaving. 

Mason was draining less which kept me so optimistic, Although everyone even his primary had hinted that maybe I should consider my options I did not want to give up. I had no right to just end his life because I felt he wasn't going to make it. When Mason decided he wanted to give up he would do so on his own, meanwhile I was going to continue to fight along with him...I kept in close touch with Dr.B, he was the only one who seemed positive and on our side, but then again Dr. B was a heart and thoracic surgeon and Mason had other issues he wasn't really aware of. The draining was minimizing, it still had not stopped but it was decreasing. I continued to be optimistic until on the 22nd we found out he had an infection, not only a gram zero bacteria infection but a PICC line, this was bad news as Mason only had a few IV's and required a lot of medication. He was beginning to decline so bad they started him on Epi, debutamin,dopamin and soluf cortef all to help with his blood pressure. He was not only on all the medication they could give him for blood pressure support he was reaching the max on his respiratory support as well. I had been staying with my husband in a family room in the NICU and I was checking in frequently, I had a real bad feeling. On the 23rd Mason was really critical, so critical that I called for a priest to baptize him in case anything happened. With no one allowed but my parents we went ahead and baptized him and asked them to be the God parents, All I wanted was for Mason to get Gods blessing in case anything happened.

I talked to one of the doctors and he wasn't too sure Mason could survive this infection but that they were  trying the strongest antibiotics. We continued to stay in the NICUcc's that was way to much for any baby. Those days were very awkward, nurses started giving me the vibe that I was doing something bad by keeping my baby alive like this. Many nurses would tell me they felt sad to take care of my son? really? well because your sad I'm not going to let my son just die if I didn't know myself that he could maybe get over this and recover. I made that very CLEAR to his doctors as well as his primary. Jenna was a blessing from above, if we were going to continue fighting so was she, she contributed in every goal Mason met. We began to discuss a plan and we agreed that Mason needed a more stable central line. On the 27th I arranged another meeting to discuss the plan. Dr. B was at the conference which made me feel a lot better. We agreed that Dr. B would place a Jugular line on Mason to be able to get medications to him more effectively and quicker in case of emergency. We also agreed on Dr. B having to go yet again in to try and fix the chylothorax(the draining).On the 26th I went and got a tattoo, I just wanted to do it in his honor, I wanted to have him on me forever.

On the 27th Dr B placed a jugular line and immediately started octreotide (the medication to close the chylothorax) I was confident that by him getting it directly into his jugular it would make a better effect, Maybe I just wanted to reassure myself. I was doing countless of research and read that although it took some time this medication did work. Mason was draining so much that I was desperate for a solution, even if it meant him having to go into surgery again....I just knew we had to overcome this, we had come so far.  The following day Mason drained 122cc's in 12 hours from both chest tubes, he was draining less and less...Was this a miracle? was he really getting better? or were the tubes just getting clogged(because they had gotten clogged in the past) I didn't get my hopes up, there was no way he could go from draining 300cc's to hardly nothing overnight. I began to worry so I emailed Dr. B

Once again, it was like this Dr was telling me everything I wanted to hear. He even agreed to order an Xray to check because I told him my concern about them being clogged. We had agreed on surgery the 29th if things were still bad but the 29th came and surgery got postponed. I couldn't believe it, we were actually getting over this.

 Yes, we were on our way, It was a miracle and I happen to think that it had a lot to do with him getting babtized, he did not only get over Klebsiella a bacteria that should have killed him but his chylo was resolving. I felt beyond blessed. On April 30th one of the chest tubes came out....It was a great day, I was so proud, my baby was surviving after they pretty much assured me he was going to die. This was the 2nd half of April and we had just witnessed a miracle.