Big Week

Our week can be divided into two parts: pre surgery and post surgery. Pre surgery was much more fun! We had a blast with the kids out of school for spring break! We hit Chuck E Cheese, had play dates with friends, went to see the baby animals at This is the Place park, and had lots of sibling play time!! Milo was really coming out of his shell! He was smiling like CRAZY! He'd look me right in the eyes and give me a big smile. Seriously, it's the best feeling in the world!! He started giggling when his daddy would tickle him, he was eating his baby food really well, he was babbling, and we were having such fun!

 

The second half of our week was, well, not nearly as much fun. We found out on Wednesday afternoon that the cardiologist and ENT could both do Milo's surgery on Friday. So Friday morning we went in for surgery to have tubes put in his ears and his adenoids out. They were also doubling up and having his echo cardiogram done at the same time. We couldn't feed him Friday morning, which was torture for all of us! I'm the one that feeds him 95% of the time, so I couldn't hold him or he'd scream. He tolerated Quin playing with him, and soon enough he went back with the anesthesiologist. We are extremely lucky to live 10 minutes away from an excellent children's hospital! We felt very calm that Milo was in good hands and went to wait in the waiting room. After about 45 minutes, the ENT came out to tell us that he was done with his part. He said everything went well. Milo'd adenoids were huge and it should be a relief for him to have them out. He also said there was tons of fluid in both ears as well as lots of wax. He was confident that the tubes will help Milo as well! The only complication was when the anesthesiologist was trying to put the breathing tube in. He said he tried the size that is generally used for kids Milo's height and weight, but it was too large. I guess they tried two or three times with different sizes before they could get the tube in. As a consequence, they scoped his airway to make sure there were no blockages. His airway looks good, thankfully, but is extremely small. The only solution, we were told, is to wait for Milo to get bigger.

The cutest little guy in a hospital gown you'll ever see!

After another little wait while his echo cardiogram was performed, we were paged to come back to the recovery area. Milo was not a happy camper. He was crying inconsolably and his oxygen levels were low. We rocked and patted and sang until he FINALLY fell asleep. One of us would hold Milo, and the other had to chase his face around with an oxygen mask. He wouldn't keep it on, so we have to just blow it by his face. After Milo had finally calmed down, the nurse could see just how labored Milo's breathing was. The recovery nurse let us know after about an hour that we wouldn't be going home any time soon. She was quite concerned with his breathing and called the anesthesiologist. He ordered an Albuterol breathing treatment, which we started immediately. It worked only moderately well. It calmed his breathing slightly, but it was still very labored. They transferred us to a different recovery area where we had our own little room. We were doing our best to keep Milo sleeping and comfortable. When he would wake, he would scream inconsolably again and his oxygen levels would plummet. He was given an Epinephrine breathing treatment, which also only worked moderately well. We continued to rock Milo and blow oxygen in his face. As the day went on, his O2 levels only got worse. He was only maintaining about an 85% level with tons of oxygen blowing in his face. Nobody could figure out exactly what was going on, but it was suspected his airway was irritated by the breathing tubes being put in several times. He was given a steroid in his IV to try to combat the airway swelling, and the ENT called in a pulmonologist, who came right up to see Milo. The pulmonologist came in and was quite alarmed. He was extremely concerned with how labored Milo's breathing was and how low is oxygen levels were. After a few minutes of observation, Milo immediately and drastically turned around. He woke up and smiled and, for the first time since he was taken back for surgery, wasn't crying! His breathing slowed and his oxygen levels shot up to 97%. It was so immediate we were all shocked! The pulmonologist said we will still have a long road ahead of us in treating Milo, because he has some serious breathing issues. In the mean time, though, he was out of immediate danger! We were all relieved! Plans were made to transfer us to the intensive care unit for overnight observation.

I love Milo's growing Buddha tummy!

A few hours went by, and Milo continued to do well. A different anesthesiologist came to check on him and said he was looking much better! He took the oxygen away and Milo was able to maintain mid 80's all on his own! He said he didn't think Milo needed to go to intensive care, but could instead stay in the recovery room where we would still have constant supervision. We were happy about this decision!

It was a long, long night. Milo's oxygen needed close monitoring, plus he received a steroid dose every 6 hours, had his vitals checked every 3 hours, and received Tylenol or Ibuprofen every three hours. He was absolutely exhausted, but could never fall into a deep sleep. Finally in the morning, we checked his oxygen again. He was fine on room air while he was awake, but he needed a little boost while he slept. We were eventually sent home, and home health brought some oxygen and a monitor. So far he's perfect while awake, but we turn it on during naps and bedtime. His oxygen dips into the high to mid 80's while asleep. Another complicating factor is that Milo now has an awful cold. He has mucus dripping from his nose and down his throat. This does NOT help the breathing issue! Thankfully the first night home (Saturday night) he slept amazingly well. We were all zombies after no sleep the night before and I'm not sure I could have made it through if he'd have had a rough night! Last night was a different story, unfortunately. Lots of sleep crying. He was hard to calm down, and we're all exhausted again. Such is the life of a family with a baby! I think he's feeling okay from surgery, but the cold isn't treating him very well. Poor guy! We're really hoping he gets better quickly!

We haven't heard from cardiology yet. Apparently the report has not been written up. I'm assuming everything's okay, though, or else I'm sure they wouldn't have let us go home!

Since surgery and being sick, Milo has gone back into his little shell. You can tell he doesn't feel well, and he deals with it by shutting down. He's fascinated by his hands again and makes little eye contact. We haven't seen a smile, save the one he gave us when the steroid first worked. I hate watching him disappear! I'm praying like crazy that the cold will get better and he'll come out of hiding again! I miss him!! This whole hospital ordeal has made me extremely sad to think of all he has gone through all on his own. Who would rock him in the night when he cried? Who held him when he woke from heart surgery? Who has wiped his little face as his nose drips? It breaks my heart! We're doing all we can to prove to this sweet little guy that we're here for him and we're not going away! Hopefully someday his mind will come out of its cocoon and stay with us, sick or not!