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.

March 15 to March 31/ MASON SUCCEEDS AT STAYING EXTUBATED

 On the Evening of March 14 I left my baby like this, intubated. He seemed a little agittated and was playing with his neobar a lot, I had a feeling he was going to extubate any day now. I tried calming him down and got a great picture of him (the picture that is now on his marker where he lays to rest) He looked so alive that day. The next morning I called in and to my surprise my boy had once again janked that tube out of his throat and was once again being tried on sipap. I was happy, this meant my boy would be happier without that tube and we were progressing towards getting out of here. Because now all we needed to leave was Mason to not be ventilator dependent and got his Gtube wich was an easy operation.

On the 15th me and Louis went to go see him. I was excited to hold him, I knew I would for sure be able to hold him because his primary was taking care of him that day. There wasnt a day where he was stable and she was there where she would not let me hold him. I did not only get to hold him but we bathe him and changed his ostomy bag. Jenna also talked to me about getting Mason into a big boy crib, I was so excited about this because it meant we would more than likely be able to dress him. I could not wait till the day where I can put some clothes on my baby boy. He had so much clothes at home but even if he was able to wear them none of them fit. He was still a tiny 5lb baby. I had to go out to Babies R us and get him some preemie clothing. I got him a few tiny onesies and some sheets for his new crib. We also went out and bought him a mobile so that he would have something to look at. This was a huge step for me and I could not wait.

you could tell Mason needed to be out of that incubator, he was getting so big. I can only imagine how bored he must of gotten of seeing the same picture of his mom and his dad. I couldnt wait until we could put him in a crib. I was having tons of fun being able to just pick him up when ever I wanted to. In the meanwhile, while they could find an extra crib for Masons room they improvided by keeping his incubator top open at all times so it was sort of like a crib.

Mason was doing so good ith his breathing that on the 18th they even tried him on nasal cannula again but that only lasted about 20 minutes, he was being given a lot of breathin treatments but maybe he just needed a little bit more time to get use to the breathing all on his own. His feeds were going great aswell, we had gone from feeding him over a period of 6 hours down to just 3 hours but he was now getting 20ml an hr that was 60ml together. This was the most he had ever been on, he was technically on "full feeds" his TPN was pretty much ready to be shut off and he was off lipids already. This meant he would start gaining weight at a much more rapid pace. On the 21st the March of dimes had scheduled our NICU to take pictures with the easter bunny, of course I was so excited to take any pictures of anything with my baby so me and my dad got up early that day (daddy had to work) and went up to the NICU to wait for the easter bunny. I made sure to dress Mason in green so he was matching for easter.

Since Mason was in Isolation you needed to gown up before entering his room, I kinda had a feeling this was going to be a problem when it came to taking the picture, we couldnt take him out and the rabbit wasnt going to gown up for the picture that didnt make sence so when it came to the actual picture we just had the photogropher come in and take a picture of him from the outside, I dont know if you can tell by the pictures but I was so upset at this I started crying. I got over it pretty quick as they tried to improvice as much as we could to get the bunny in the picture. It turned out in a very funny picture of Mason and the Easter bunny.

Mason continued to have good days, he was eating good and having faboulous blood gases which allowed the respiratory therapist to wean him on the sipap settings. On the morning of the 23rd when I called in Jenna picked up, she told me that she had gotten a crib for Mason aswell as a swing for him to lay in. I was so excited about this, not only is my baby going to be in a crib and I can pick him up when ever I want but I will be able to put him on a swing too!

This was the first time we ever got to dress Mason, it was preemie clothes and it was still a bit big on him. I loved being able to just take him out and dont let me start on the swing, I think it was because he wasnt compleatly laying down that he absolutely loved it. He loved it so much that his nurse left him the whole entire day, Im sure it was a big relief on his poor back that for the last 4 months had been sustaining him on his back. He looked so tiny on that swing but it was the cutest thing ever. We were having so much fun with all his progress and all the new things we were dealing with that we never thought that it could all go south within a few days. This was the longest Mason had ever lasted without being intubated it was a record braking 14 days that we had him on sipap and were able to just hold him. Little did we know that on the morning of the 28th when I walked in the NICU he would already be re-intubated and his doctors would already be talking about a possible surgery. I walked in to see them re intubating my baby and telling me that they had done a chest Xray and it had shown a possible tumor or "seroma" as they called it and that this was more than likely why Mason wasnt able to be discontinued from sipap. They called in Dr Bethencourt (his heart surgeon) to discuss what was going to be done about the seroma. They would more than likely have to cut him open to cut it out because it was obstructing his air way and that is why he was not able to compleatly breath on his own. Not only that but it was getting worse, so bad that they had to reintubate him. I went in to see my baby like this

It broke my heart to see my baby intubated again, knowing he would have to endure yet another surgery But we were not giving up we had been through way too much to let something like this bring us down, this was the last 2 weeks of March, Masons best days alive<3