Climbing Back On The Blogging Train, Part 2

Picking up the story. Last I left you, we had seen the cardiologist. The week prior to seeing cardiology was NOT fun. We have added some new mechanical members to our family, and along with that, all the ins and outs and breakdowns that come with them. Oh, and the beeping, lots and lots of beeping. Mostly when you are asleep. This is the oximeter, or pulseox:

It tells us what his oxygen levels are, and what his heart rate is. This particular machine is where we found out that Little Man not only desats, (oxygen goes too low) when he is asleep, he also desats as soon as he lays down. He can not keep his oxygen levels above 92% when he is prone. AND add to all that he is also having heart rates that are below 50 every night. The pulmonologist (sleep/lung doc) said we needed to wake him up every time his heart rate drops below 50. We, mostly my sweet Bald Man did that. Blearily, sleep deprived, tried at least. After we saw the Cardio and found out Little Man's heart was fine, I called the Pulmo and said if it was really important to Little Man's health that his heart rate not drop below 50, they really needed to get us nursing and have someone trained and, most of all, AWAKE, be there to shake the boy when he needed it. No nurse, so we set the alarm to go off at below 40 instead. It hasn't ever gone off at that level yet.

When the pulmo said we needed to start Little Man on oxygen, she shook her head, we shook in our shoes. Between the autism and his behavior problems, we all had our doubts over whether or not our boy would be able to tolerate the oxygen delivery system. A CPAP was out of the question. With all my heart, I believe what happened next to be nothing less than a miracle. We asked for prayers and prayed fervently as we watched the tanks and the oxygen concentrator brought into our home.

(The IV pole is for his feeding pump, which he still uses every day, for fluids and sometimes for food when he isn't eating.)

Little Man can not have the windows down in the car, because he HATES wind in his face. Remember The Swine Flu Debacle of '09? The one where Little Man would NOT wear his oxygen and even hated the blow by? Yeah, well, we remembered it really well. Enough to be afraid of what was ahead of us in terms of getting him used to wearing an oxygen cannula at night. It was very anti-climatic and I mean that in the best way possible. This child, who can't bear to have anything blowing in his face, accepted the oxygen cannula without a blink or a fuss. CREAK, CRASH! That is both his parents falling over in shock, surprise and ultimately, gratitude. Miracles happen.

goofy kid, he couldn't smile while his eyes were open. This is our new normal and he just accepts it. Who knew? If you are scratching your head in wonderment, so is EVERYONE else who knows him! Between the oxygen therapy and the increase in one of his meds, Little Man began to sleep better, much to our relief and sanity.

We have seen the cardiologist, check, everything is fine with his heart. Do they know why he is having bradycardia every night? Nope. Um, maybe it is his VNS he had implanted for his seizures is causing it the cardiologist wondered... So off to Neurology we go. They said it was unlikely, but possible. The only way to know was to turn it off. Oh yeah, I guess I forgot to mention Little Man had started having grand mal seizures at night again. The first since we had the VNS implanted years ago. Turning the VNS off isn't a great idea unless he is inpatient.

So now we had a referral to see the Ear, Nose and Throat doc, (ENT). What I am most afraid of is that they will want to take out his tonsils and adenoids and we will go through all that, operation, and recovery, (with an older kid, ACK!) only to find it didn't help a bit. So, off we went to the ENT and they said.... wait for it..... um, we need to take out his tonsils and adenoids. When I expressed my concerns to the ENT, he said, I had a valid point. And with "syndromey" kids, they have a much lower success rate. I loved that he made up that word, "syndromey" and that he admitted it might not work. He also said that it the least dangerous thing to do, with the greatest chance of helping Little Man, even if it doesn't "fix" the sleep apnea. It will not be a day surgery for our boy, because he is complicated and already having problems breathing, I was informed that we will be being admitted to the PICU. Gut punch. On one hand, I am glad they are going to monitor him closely, but the other hand, my mommy hand, wants to break down and cry for the step up in medical complexity.

So October 5th is the day. I am dreading it. I wish it were much sooner so we could just get it over with. I am not really scared about the surgery, but I am terrified of the recovery. All I can say about it, I am glad he has a g-tube, so he can and will be hydrated, medicated and fed without him having to swallow anything. They will also be doing some more tests with his VNS to see if it is causing the problems and scoping his mouth and throat to check on things. ,

Let me end with every thing else going on, we are enjoying life! Little Man's school and behavior program continue to rock and he is doing really well! In his new school he is a star student and beloved by teachers and students alike. GRATITUDE!

We continue to feel blessed, with our beautiful grand children, with our home, our marriage, our friends and our family. Bumps, and anxiety, but abundantly blessed with so many things!