Baby boy and Primary Children's continued.

Ok. I with my last post, I had just left off with our little man opening his eyes for the first time after surgery. What a splendid and exhilarating feeling that was!! I wish I could say that by this time we knew he would be ok. We sadly did not. The doctors were fairly certain the tumor was nothing special, however their pathologist team. Yeah- team. Could not figure out what it was. So all we could do was wait for them and give all our attention to our sweet little baby.

I got to hold him! For the first time after his surgery! It was amazing!!! 

After his surgery they were hopeful that he would be able to begin to breath on his own. So that afternoon after his surgery. Monday, they extubated him. At this time, he started to vagel. Essentially this means that he would involuntarily stop breathing for whatever reason. The nurses and doctors felt he would vagel because of the pain he was feeling. Our oxygen level is supposed to sit 90-100. He was vagelling a few times every hour for a while and his sats would drop to the 20s. It was horrifying. Like someone who was drowning, his lips turned purple, his fingers and toes turned purple and his skin began to look splotchy.

Our nurse. Whom I am infinitely grateful to, was a little high strung. Which at times was great, because she was so attentive to baby As needs. She literally had a chair and a little table and sat almost right by his bed her entire 12 hour shift. It was great. (Also, because he was such a high risk patient, he was her only patient) And at the time, I was so grateful that when she saw him vagelling, she grabbed the oxygen mask and started pumping air into him. The only problem with this, which we discovered later with another fiasco, is that if your airway is closed- where does the air go?

Into his stomach.

So he was vagelling over and over and she would grab the mask and pump air into him. We had no idea this was a problem.

Around 6:00 that night a child next to us coded. So they had several nurses run over to assist (ours included), the respiratory team, as well as several doctors. It just so happened that at this very time our little A vagelled again and dropped quickly to the 20s. He didn't recover. I stood there listening to the alarm go off and no one came over. I watched his sats. They were in the teens now. Daddy M and I were stressing out! A few seconds later I kind of nudged Daddy M over to the collection of healthcare workers assisting the other patient and he told them that our baby boy wasn't breathing.

A handful of them ran over to our room and began trying to raise his oxygen level. He wasn't recovering. We had the attention of the respiratory team now. They decided right then to reintubate him. Which means that about 8 people were rushing around our baby.

He lay there like a ragdoll. I've only seen one other dead baby in my life--which I am convinced is the worst thing in the world to see-- and now my baby looked dead. His arms hung limply at his side as well as his little feet while they held him up and re-positioned him. They injected more medication in him to make him fall asleep and then they shoved the tube back down his throat. I realized after watching for a minute, that I couldn't do it. I had to hide. I walked to an empty section next to our curtain and cried. M, came over and hugged me and that's where we stayed until they were almost done.

A doctor at one point came over to us and explained what was going on. She was very empathetic to what was happening to our baby and how it was affecting us. I want to say this is a rarity for doctors, but I didn't really feel that way at the Primary's. Even though- I did feel like there were a lot of big egos walking around. Most were still very kind.

Once they finished and everyone left. We were able to settle down again. This lasted about two hours before the nurse noticed that something was off with his breathing. The respiratory therapist came over, and ordered a stat x-ray of his chest. Turns out part of his lung was collapsed. They called only a few people in this time and tried to inflate the collapsed section by moving the tube he was intubated with. Apparently if you place them too far down, they collapse lungs. Wonderful. Just wonderful.

After this episode, they told us we could be in the PICU a while longer. I was actually relieved. Going anywhere else with the trouble he was having, terrified me to no end.

Oh- also, they relieved all the air in his belly with yet another tube that they stick down into his stomach and the air basically leaves his abdomen through that tube. So his tummy was no longer bulging and causing pain to his incision. Over the next few days, they would use this tube several times to remove fluid buildup and excess air where it wasn't supposed to be.

I still hadn't slept yet. I think this made it 3, nearly 4 days now. 72-96 hours.

That night, after all the excitement we were exposed to, began to calm down nicely for us. We watched a little Duck Dynasty for the first time in our lives and found something we could laugh with. It was refreshing.

And that night, after Daddy M went to our sleep room and I pumped. I finally fell asleep.

A little more about baby boy after his surgery

ok, wow. It's been forever since the last time I posted. In my defense, I've had a lot going on. I didn't even finish my story of what happened to A. I'm not entirely sure where I left off, yes.... I could go back and actually check, but I don't want to. I think it was before he had his surgery.

We waited all day that Sunday for Monday to come. He was intubated by this time I believe. His pain was so severe that they went from a dose of morphine. To a morphine drip. To Dilaudid. Which is the good stuff people. It hits quick and lasts long. The downside to such an awesome drug is that it depresses your breathing. His body was so relaxed, it decided it no longer needed to breath. Hence the need to be intubated and attached to a machine that did his breathing for him. Daddy M managed to get a nap in on Sunday. And we had some visitors. I do think I wrote about that. I still hadn't slept. That night, after our visitors had left, I stayed by my baby's side. The hospital has this policy where you can sign up to get a sleep room, and depending on the severity of your child and how far away you live, they'll allot you a room. We got a room every night we were there....

It was a sweet sweet blessing.

Daddy M was able to use the room the first few nights. I couldn't peel myself away from As side. I wish I could trust the nurses enough to leave my baby. No.... that's not true, I trusted the nurses. I didn't know at this time what was going to happen to my little baby. I didn't know if these were going to be the last days I spent with him and I NEEDED to spend every second with him. They brought in a chair that turned into a bed earlier that day- the one McKay got to nap in. I planned to use that for sleep. Sunday night though, I was up most of the night. I think I slept for 2 hours maybe. I'm glad Daddy M was able to sleep the whole night, we needed it. He was just sane enough to get the sleep. That morning at 7am they kicked me out so they could give report. It's for the privacy of the other patients in the rooms next to us. So at that time, because I had no choice, I left my baby.

Daddy M and I would usually eat breakfast around this time and shower. We had wonderful family members bring us things so we could be less disgusting while staying at the hospital.

Monday we waited for an opening for surgery. He wasn't a scheduled procedure, so we just had to wait for a surgery to drop off the list and then he would be put in that place. We had three visitors on Monday. I cannot remember when they came or if they all came together, but when A finally went into surgery. It was around 10 or 11 am. I do know that Daddy M's parents were both there as well as his grandpa. They were kind enough to sit in the waiting room with us.

Dr. Meyer let us go back with him to say goodbye before his surgery. (Love her by the way! She was amazing!) We got to meet the anesthesiologist who would be in charge of A's breathing while in surgery, and obviously keeping him under during the procedure. Then that was it. Daddy M and I kissed him goodbye and we left our little boy in the hands of complete strangers. Depending on their education and their skill to safely remove his tumor and bring him back to us. This part doesn't really sound all that scary on paper, but it was terrifying. This was the moment when they would go in a see what was inside him. This was the moment when he could, for whatever reason, die on the table. This was the moment that could have been my very last moment with my baby alive. I didn't want to let go. I wanted to hold him and hug him and cling to him forever. But all I could do with all the tubes attached to him, was kiss his perfect little forehead and let him go.

Still hadn't really slept people. Going on 3 days now I think? 72 hours? So I was severely overly emotional.

Daddy M and I went and showered while he was in surgery. Had breakfast and came back to the waiting room with Daddy M's parents and grandpa (GGPA) to wait. It's kind of a depressing room. Not intentionally, but you sit in there with a handful of other people and you know they are all waiting in there to hear news about their children as well. That's the luck of being in a pediatric hospital.

His surgery lasted only a few hours. We decided at the time, that this was a good thing. Short surgery meant not so many complications. (Which is retrospect, was true.) Dr. Meyers came out with the doctor who assisted her and began to explain what they found.

Little sidebar- we asked them in the ER several days ago, if this tumor could be related to his undescended testicle. They said absolutely not. There's no way. The testicle missing was on the wrong side of the body from the tumor. So, as Dr. Meyer takes him back, she casually says to us, "while we're in there, we'll see if we can find his missing testi as well." We were grateful, but didn't think much of it beyond that.

Back to Dr. Meyers. She explained what they found.

A massive tumor attached only by a stalk of the vas deferens. So, yes, this tumor had completely encased his testi. It had grown so large that it had flopped over to the other side of his body. It was sitting on his iliac artery? I believe that's right. This thing, this awful tumor was almost completely dead inside him. It had not only flopped over, but it had twisted. A blood supply was getting in, but not getting out. (Which was why he needed a blood transfusion before surgery. He was extremely pale.) This torsion may have also been what caused his tumor to get as big as it did as fast as it did.

They sewed him up, his incision almost went from hip to hip. I'd compare it to the size of a c-section scar on a 6-week-old. Just above his belly button. They also gave him a broviac line. Or a picc line is probably the more familiar term for some of you.

Basically it's a catheter that is placed under the skin that gives a direct line to the artery just above his heart. This would allow for more direct access for treatments if needed.

It would allow for chemotherapy treatments if he had cancer. No one really said this directly to us. They mostly said things along the line of, "We don't really know what this is yet, but we want to be extra safe and save the time of having to insert a broviac later if he does actually need it."

As they gave us this news, that they got it out. The whole thing. I felt such a wave of relief. I was so happy and so grateful. A was recovering, he survived surgery! We still couldn't see him though. That kind of stank. To celebrate, we all went downstairs to the cafeteria and had lunch. I know, I know, we party hard!

A nurse came down to the cafeteria and told us he was back in his room. Poor baby did not look good. His face was so swollen, he still couldn't breath on his own and he still had tubes, IVs, and monitors attached to him all over the place. But he was out of surgery! It was gone. He wasn't out of the woods just yet, he needed to wake up and needed to start breathing on his own.

For now though, we took our victories one step at a time. Like him opening his eyes for the first time after surgery and looking right at his Daddy.

Only a few things can compare to how beautiful that felt. To see those wonderful little eyes again.