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.

APRIL 1 TO APRIL 15/ MASON GOES BACK TO THE CARDIOLOGY OPERATING ROOM

After having such wonderful 2 weeks I was not surprised that we had just taken 5 steps back as this was typical and anticipated with Mason. I knew this and I took advantage of everyday I had him  nice and stable because I already knew things could change any day. Mason was now re intubated but was on low setting on the vent only 6 breaths per minute, he was still doing most of the work on his own but I did notice that his FIO2 was slowly increasing and this worried me. Every time Mason's oxygen had to go up without resolving it meant his pulmonary hypertension could get worse. He was really agitated I mean I'm sure he hated having that tube after having it off for 2 weeks I don't think anyone would appreciate that. His pain scores were going up and they were having to give him more rescue doses of his pain medications. On April 2nd I had a family conference with his doctors and the social workers t discuss what was going to happen. I met with his cardiologist who told me Dr. B wanted to do an exploratory Thorascope to see exactly what was obstructing his airway and depending on what how Mason did after the procedure we would re-evaluate Masons respiratory status, If not we would start discussing a Trach. I knew Dr. B would more than likely want to go ahead with the procedure soon, and once I spoke to him after the meeting he told me he would be going in the following day. I knew this was a surgery and every surgery had risks but I wasn't really too worried. I felt so horrible that my son had to endure yet another surgery but I had to be strong for my little man. The following morning Mason went in to have an exploratory thorascope to see what exactly was obstructing his airway. He made it out fine and only received a few boluses of blood pressure medication and he was back down to the NICU the following day. They once again placed a chest tube and began replacing with albumin what he was putting out, I hated seeing my baby all swollen and in pain, it just broke me down so bad.

Mason seemed to be recovering well from surgery, he was draining very little and Dr. B wasn't too concerned as long as we were replacing, by the 5th they had restarted his feeds. This was one thing I hated abut us taking steps back, we had already gotten to full feeds and we would have to start slow again but luckily not from the beginning they were starting at 10ml's over 3 hrs. This means he was getting about an oz every 3 hours which wasn't too bad. I had not been able to hold my baby since the 2nd when we had the family conference and before he was taken to the PICU for surgery and I was starting to get anxious. I knew I couldn't hold him while he had a chest tube, that would just be too painful. But he was waking up, although you can clearly tell he was in pain.

By the 7th Mason was getting worse, he began draining a lot of fluid from his chest tube, so much that they were not replacing it every 6 hrs but every 3 hrs. Once they talked to Dr B. He suggested to start Mason on a medication called Octreotide because he suspected Mason could have a Chylothorax since they sent the fluid he was draining to the lab and it came back with a high triglyceride level which meant it was coming from the thoracic duct. What most likely happened was that when he went in for the exploratory thorascope he probably punctured the thoracic duct which was now draining more than it should. I talked to Dr. B and he said that the octreotide would help close it without him having to go in but that this medication could take weeks to make a difference. He told me he would monitor him and in the worst scenario he would have to go in and do a thoracic duct ligation which meant yet another surgery.

By the 10th of April Mason went from draining about 40 to 50 cc's to about 200 cc's every 12 hours. They had already increased the chylothorax medication to the highest they could but it was not working, Mason was continuing to go downhill, On the 10th they placed him on a high frequency ventilator called an oscillator. This would help him breath as they wanted to keep him as comfortable as possible. We did not only have to worry about the chylo but also infections, he was susceptible to getting an ET infection a chest tube infection, a PICC or IV line infection. When his respiratory status went south we more than likely knew there was some sort of infection setting in so they immediately started him on antibiotics. The morning of the 13th Dr. B called me and told me he was going to take Mason up to the Cardiology unit to do the Thoracic ligation. I rushed to the hospital to see him before he went in yet again, this would be the 4th time they opened him up to see what was going on. Dr. B did the ligation and Mason returned with 2 chest tubes

When Mason came out of surgery he wasn't in a very stable condition, he was at 100% oxygen and his saturation's were not in the 90's where they wanted them so they started him on INO to help with his breathing as well as with the pulmonary hypertension. Because of all this Mason was diagnosed with Chronic Lung disease. This was a very tough time because he was already on ALL the support they could give him yet he would still desat requiring them to bag him manually. All this was very hard to take as I had never seen my baby in such a critical condition. This was when we had a nurse tell us that she would not keep her baby like this and would DC respiratory support. I was very angry at the fact that she "A NURSE" could give me such advice. The next day his primary was in and I discussed this with her and she was appalled since Mason was actually getting better, They had lowered his INO from 10 to 5 and his oxygen from 10% to 75% and his output was lowering. I was optimistic and was not going to give up on my baby just yet. Not even when they told me that NO baby had ever survived a chylothorax in their unit. This was the beginning of April, a very bad month for Mason.