Update on Beckett-Boo

So it has been awhile since I posted an update on Beckett. He is doing well, a couple ear infections but otherwise okay.

Since my last post about Beck, he had a sleep study done. That was AWFUL. There is no other word for it. They covered him from head to toe in 27 different monitors and sensors while he cried hysterically and then left the room so I could calm him down and put him to bed, where he was supposed to sleep soundly all night. That did not happen. At 6AM, the tech came in, switched on the lights and said "Well it was a successful study. He only woke up a couple times." I looked at him and said, "Really? I counted nine times." A!W!F!U!L!

Well we had to wait quite awhile for the sleep study results. But...the sleep study results were not what we were hoping for. We were hoping for obstructive apnea, adenoids, which is very common in children. It came back as central apnea, very uncommon. Central apnea is a neurological problem where the brain does not signal a person to breathe often enough. The child will have apneas, occurences where they don't breathe for more than ten seconds. It is found primarily in premature babies, abused children, and children with brain injuries/tumors. Scary stuff!!! Beckett had 14 central apneas the night of the sleep study, 47 hypopneas, and NO obstructive apneas. Our pediatrician's take on it was we will be on oxygen long term until the central apnea resolves itself or we come up with another course of action. She wanted to get our pulmonologist's take on all of it though. Well he told her although the sleep study indicated central apnea, he does not think that describes Beckett as well as obstructive apnea. So he wants to go through with the surgery for the ear tubes, adenoids, bronchoscopy and laryngoscopy. He is hopeful that the surgery will work and that Beck could be off O2 by the end of March.

This is good news but I am a little apprehensive. I don't know how you get a test result like central apnea and just discard it as oh that can't be. I guess that is why I pay experts and am not one myself. I am hopeful but am keeping it in the back of my mind that our doctor is still speculating to some degree. Surgery is January 15th. I am scared. I am also hopeful that this will be the beginning of an end to oxygen.

Route 66 Marathon

Well the last post I wrote was about Mike's running and so I feel like I should update and tell everyone that he did awesome. I so wish I could have gone but with Beck having just gotten out of the hospital and all it was better that I didn't. Mike said it was a fun run, which is what I would think if I ran as far as say....the mailbox, not 26.2 miles. But hey to each their own, right? Anyways he finished in 3 hours 46 minutes, almost a half hour quicker than the Denver marathon where he was so sick. He was beyond thrilled with how he did. And I am too. Great job Michael! I love you!

Denver Marathon

So my crazy husband decided that he wanted to run another marathon. After each of the last two, he has sworn to never do another one again. So you can imagine my shock when he said he wanted to run the Denver Marathon. I being the supportive wife that I am asked him if he was sure and reminded him that he had sworn to not do another marathon. He was insistent that he wanted to do another and signed up.He trained and trained for the marathon and felt ready for it, until a few days before. He came down with an awful illness. Supportive me told him it was okay to back out, no need to kill yourself. All those really supportive things. He again insisted on doing it.

Well he ran the marathon and did awesome! He was disappointed with his time but my goodness he ran 26.2 miles sick. I don't run 3 when I'm well. I am so proud of Mike. His new goal is to complete a marathon in each of the 50 states. He has three done: Washington, Ohio, and Colorado. He is running one in Tulsa, OK tomorrow. Good luck baby!

Pumpkin Run

At the beginning of October, Michael, Caiden and I ran the Pumpkin Run here in Colorado Springs. It was the first time I ever signed up and paid to run! Mike did the 10K. Caiden did the half mile and I did the 5K slowly, very slowly. I did run the whole thing and I finished it so that was good. I had fun but have not signed up for another by any means. I think it would be fun to do more of them but I would like to train more so I don't feel like such a slowpoke.

Mike of course finished his 10K amazingly quick and did really well. He enjoys the 10K distance a lot.

Caiden was adamant about his outfit that day. He had to wear running shorts, a long sleeve, and a visor because that's what runners wear. We gave Caiden the choice of running the quarter or the half mile. He wanted to do the half mile. He was the smallest, youngest and cutest kiddo there by far. He finished last but he finished first in his age group. As a prize for finishing he was able to go pick out a pumpkin from the pumpkin patch which was a huge thrill for him.

Update on Bex

So Sunday night, Beckett desatted to 73% but was stable with oxygen so the doctors decided we could go home with oxygen, a referral to an ENT, and more medications. It is amazing how many different things he is on. The pharmacist had me pretty worried when he expressed concern about how many different steroids he is on. I actually had to make up a schedule so I would know what are AM, PM, and as needed medicines.

So Tuesday morning, we saw the ENT. She was very nice and I liked her a lot. She immediately said Beckett needs tubes for his ears. While she does tubes, she wants to remove his adenoids. Mike and I were fully prepared for that. She thinks his adenoids are causing the ear infections, which trigger a fever, which in turn triggers the severe asthma attacks. The ear infections are the main reason for thinking the adenoids are the culprit but we are still not positive because generally the flag for inflamed adenoids is inflamed tonsils. Well Beck's tonsils are pretty small and not inflamed at all. So she is also going to do a bronchoscopy to check his windpipe for size and obstructions while he is out for the tubes and adenoids. We are going to do this in two to three weeks. We are still waiting for a date because she needs to reserve time at the bigger hospital with a PICU. She wants to do it there because the hospital she normally does surgery at does not have the anestheologist she thinks Beck needs nor a PICU. Scary to think she feels the need for the PICU.

Yesterday we saw Beck's pediatrician. She was glad to hear the plan from the ENT but she too was concerned that his tonsils are not inflamed and wants to make sure before we put him under for it. Another concern is that when taken out before two years old, the adenoids will grow back. So we could be doing this again in a couple years. Anyways, she has also ordered a sleep study which will confirm or deny the adenoid theory. We are trying to do this in the next week so we have plenty of time to make a decision about adenoids. Dr. Y seems to think if adenoids are the problem, we will still have to deal with the severe infantile asthma. If adenoids are not the problem, she is afraid we will be on oxygen long term. We are all hoping it is adenoids!!!!!

Sorry for the long post but I know a lot of people wanted to know what has been going on.

Oh no, he's asleep....

He just sounds like he is running a marathon. My little man continues to be breathing really loudly and quickly. I tried breathing 60 breaths in a minute and couldn't maintain it. I don't know how he does. At one point last night his rate was 80 breaths per minute. Crazy!!!! Anyways, last night was rough. I let the doctor know that Flonase keeps Beck wired at night and so we give it to him in the morning. Well that did not get relayed to the nurses who insisted it was ordered and he needed it last night. Well guess who was all smiles from 2AM-4:30AM? That's right, Beckett was! He wanted to play with the blinds, climb onto the window sills, jump on my little couch, and repeatedly put his fingers in my eyes while saying "Dyes." Fun times. Sidenote: I did talk to the doctor about not giving that med to him tonight. :) Bex slept in until 5:30AM, at which point he ripped his O2 out. He desatted to 76% at which I warned by the nurses that we probably would not be going home. Not the news I wanted at 5:30AM!!! Well the doctor came in later and confirmed that she would not send us home when he was that low. He needs to be in the high 80s off oxygen before she would entertain sending him home on oxygen. The day went by pretty smoothly otherwise. It was nice because as soon as I would get tired of being a circus act for Beck, a set of grandparents would show up. Yay for grandparents! So tonight the plan is to try and turn the oxygen completely off. For us to be able to go home tomorrow, he needs to stay above 85% while asleep. We will see. I am hopeful but not confident that he can maintain that. I will post results in the morning.

Happy thoughts

So I feel the need to post about something happier than Beck's saturation levels. Hmmmm.....what to write. Okay, I have one. Quite a few weeks ago, two of my best friends in the whole world, came to town. They both came with their husbands and kiddos. Their husbands are as crazy as mine and were here for the Great American Beer Fest. So we spent the first night at the Rockies/Cardinals game. Then the next morning we took all the kids to the Children's Museum in Denver where the kids all had a ball, running around and playing. We then went back to the hotel and got the guys ready to go. They headed out to the Beer Fest and all of us girls Jen, Alexis, Marci, myself and five kids headed to dinner. We ate at a little cafe where no one cared how loud the kids were, that the kids ate off of everyone else's plates but their own, or how much got dropped on the floor. It was so much fun! Then we walked back to the hotel, put all the kids to bed in one room (they were adjoining) and opened a bottle of wine in the other. We sat and talked and laughed so much and so hard. I had an amazing time with some of my favorite girls. There were more than a few frustrating things that happened that weekend but we will not mention a single one since this is my happy post.