A Caidenism, One of My Favorites So Far

Crazy Kid

So we were driving home from dinner the other night and this conversation transpired between Mike and Caiden. I have no idea what the conversation before and after this was but it doesn't really matter at this point.



Caiden: "Daddy, I am going to put girl jewelry on you."


Daddy: "Okay Caiden."


Caiden: "Then Daddy, I am going to put girl hair on you."


Daddy: "Uh huh Caiden."


Caiden: "Then Daddy you are going to have to sit down to pee."

I honestly have no idea where he comes up with this stuff. I do know that Caiden comes by his sense of humor honestly. His Daddy can take comments like these because they are things his Daddy can come up with on a minute by minute basis.

We Aren't Aspiring to Aspirate

Sounds like some catchy tune, huh? Well this last Monday, Beck was scheduled for a video swallow study so Mike took him. Because of the baby I couldn't go. I feel like I really missed out because Mike said it was really cool. He said Beckett did awesome taking all the different foods and fluids. They laced the foods and liquids with barium and then did a video xray of him swallowing each. He did okay with swallowing foods and could do so safely. Fluids on the other hand, not so much. Beck aspirated on anything thinner than honey. Beckett was diagnosed with Dysphagia and Aspiration of fluids into the respiratory tract. This means that when he drinks fluids thinner than honey, a small amount enters his lungs with each swallow. For Beckett this is a neurological problem that he must "grow" out of. A valve in his esophagus is not timed correctly and doesn't close efficiently. So for now, all drinks for Beckett have to be thickened to what is called "Honey Thick." This includes water, milk, juice, and soups. The thickeners look gross but work really well and at this point Beck hasn't complained other than it was hard to suck through the regular nipples on his bottles. We just had to buy new ones specially made for thicker liquids. We aren't sure how long this thickening will last. I have been told at least 6 months but most likely much longer, probably a couple years. It is frustrating. Things could be so much worse (needing feeding tubes would be an alternative) but it is still hard to deal with everything on a day to day basis. He's such a trooper and that ease the frustration.

Owie!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A little over a week ago, I was making dinner when Caid walked in and calmly said, "Mommy, I have an owie." I looked over at him as blood was pouring down in between his eyes and down his nose. He had run into the corner of where two walls meet and got a pretty good cut on his forehead. We debated taking him in for stitches but didn't and now it looks fine. It has healed nicely although not shocking but Caid still insists on wearing a Band-Aid on it. He says he needs to protect it so his friends don't touch it. Who knows?

Surgery

Beckett's surgery went way better than expected! We are so thankful! His original date was Jan.15th but his ENT had a family emergency and rescheduled for the 23rd. We went in on Saturday and were admitted to a room. They took us to the Surgery department from there. Mike went into the OR with Beck to see him go under. I from the waiting area heard Beck scream and then not 15 seconds later, Mike walked out. I, of course was wondering what happened but Mike said they put the mask on him as he screamed and Beck went to dreamland. We waited in the waiting room for what seemed like a long time but it was really just over an hour. I think I checked the progress screens at least 50 times in that hour. Then Dr. P came in and said everything went well. She put in the ear tubes, took out the adenoids (which she said were good size), and did the bronch/laryngoscopy. She did not find any cysts or obstructions but did say that it was ANGRY in there, pretty red and inflamed. That is a sign of aspiration or reflux. She is choosing to go with reflux. So she put him on medicine for that.

We got to go back to the PACU where my baby boy was waiting very impatiently. We walked up just as they were giving him morphine and a bottle of sugar water. He was so funny on the morphine. Talk about looped!!! Anyways, his O2 sats were great right after the surgery but we were told that was just because the bronchoscopy opened everything up. We had to wait awhile but were finally taken up to PICU.

Dr. P put us up there thinking respiratory wise, Beck was going to be in bad shape. He really wasn't at all. They took the IV out right away and Beck ate, slept and played all afternoon. He would stand at the sliding glass doors to his room and say Hi and Bye to all who would look his way. Oxygen-wise, his sats eventually decreased to his normal and overnight even lower than his normal. We did have to up his O2 but that was not a big deal. We were still discharged Sunday morning. Beckett and Doggy both with their canulas

We are not really sure what to expect now. Beckett's O2 sats are dipping fairly low when he pulls his canula out. His pediatrician thinks that given Beck's track record, it will be awhile before his sats get normal if they are going to. If we see progress during the days we can test him at night and the final test will be to do another sleep study to see if the central apnea resolved. If we do not see any drastic changes, we could be looking at a tonsillectomy next, a swallow study and who knows what else. We are hopeful that we have some new information so that we can better understand what is going on in our little boy.

That's my little man!

Exciting News Round the Beagley House

Most everybody heard because news like this spreads like wildfire but........we are having another baby. Beckett is going to be a big brother. Everyone always asks the same questions, so to try and answer them all here it goes.

1: Always the first question: Was this planned? No, it wasn't. It was to a complete shock to us!

2: Are you okay with it? Yyyyyyeeeeesss. We are thrilled. I am a little uneasy with the prospect of three kiddos but excited all the same.

3: Are you hoping for a girl? I would love to have a girl. I won't lie. But my boys are so much fun and if I am blessed with another boy, I'm just fine with that.

4: How many kids do you want? I always wanted three. Mike wanted two but was negotiable for a third. Which leads right into question 5......

5: Are you done after this? I think so.

6: When are you due? August 3rd

7: Are you going to find out what you are having? We are. We want to know.

8: Are you crazy for taking yet ANOTHER newborn to a Beagley reunion? Without a doubt.

So there you go. The honest answers to everyone's questions. If you have anything else to ask, ask. I'll answer it.

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.