Home Again

In what has to be our fastest hospital trip yet, we were discharged yesterday morning, before noon! Caelen did great with the cath and in his recovery. We stayed the night Friday for observation and his numbers were great.

We still haven't talked to our cardiologist to get her read on the cath findings, and in all liklihood won't reach her till Tuesday. But overall, the consensus was that Caelen is doing great. Everyone we encountered from cardiology down to the nurses all said the same thing, He is a big boy! The recommendation is for GI to reduce Caelen's feeds, and we are hoping that they listen this time. We have been saying for quite a while now that Caelen has gotten too big, too fast, but GI is never willing to reduce his daily intake. He has gained 7 pounds in the almost 7 months that we have been home. Our hope is that now that so many involved in Caelen's care have expressed concern, we can lower his daily volume, and perhaps even reduce some of the diuretics. We are thinking that maybe Caelen's reliance on such a heavy diuretic load could be due in part to the large volume of feeds he is getting per day.

I also need to reach pulmonary on Tuesday and schedule a follow up. The cath Dr. found no single main reason why Caelen is still reliant upon his 02, but there can be multiple smaller reasons for the continued oxygen. In general though, everyone feels that Caelen will outgrow the oxygen dependency.

He did well last night at home and had a good day today. We think he may have picked up a little bug or cold while he was in the hospital, but it isn't affecting him too bad. Probably just another upper resp infection.

Thank you all again for your continued support, love and prayers. They worked and we got Caelen home healthy, and very quickly this time :)

Love,
Katye, Martin & Caelen

cath is over

caelen is out of his cath and everything went well. the dr did not find any reason for medical intervention.  meaning no collateral arteries to coil off. They did see that his lpa (left pulmonary artery) is still narrow but it didn't Need ballooning yet.

We haven't talked to our cardiologist yet, but from a numbers standpoint he looks like a good candidate for the next surgery. We still have to look at the whole picture, but we're hopeful for a more positive outcome.

I am updating from my phone which is proving to be difficult, so I'm going to add more details when we get home. Hopefully tomorrow. Thank you all again for your prayers.

Love,
Katye, martin , and caelen

so far so good.  the dr got femoral access and didnt have to go thru liver.  we got a late start, so it will be a little while before we find anything out.  they are just now starting their discovery.

Cath update

Hi again, I can't believe it's been 2 weeks since I updated.  Sorry about that.  There's been lots going on as we prepare for Caelen's cath on Friday morning.  It took us until the end of last week to confirm the cath date, then we learned last Friday night that Caelen needed blood work done prior to the cath.  So we did that Monday, which did not go well for either Caelen or me.  I left the blood draw in a hurry because I just wanted to cry after having to hold Caelen down while the blood was taken.  He was crying harder than I have ever seen him cry, and he turned all shades of purple.  It was quite scary actually, I am NOT looking forward to being admitted tomorrow afternoon and the hospital needing not only an IV, but more blood.  I may drink, a lot, prior to the admission. 

My Dad came up for a visit on Monday and we dropped him back off at the airport today.  It was a quick trip, but we were so excited to have him for the few days we did.  I think Dad was way more excited to see Caelen than me, but that's ok, after all, Caelen is the first grandchild ;)  Caelen liked his visit with Papa (as he is now named by Lily, Caelen's cousin), but was a little skiddish at first.  Papa has 2 decibel levels: loud and even louder.  But Caelen loved Papa's attention and funny faces. 

While Dad was here, he tried desperately to get Caelen to eat food.  He puts everything but food in his mouth, including soapy bath water. 

But we did try the baby food. 

Hence the soapy water.  Here's a few more fun shots from Dad's visit...

This last one is me trying to convince Caelen to put his feet down in his car and come towards me.  He did the opposite, of course, lol.
Martin's parents are coming up tomorrow, then my Mom is supposed to be visiting some time next week.  So I think Caelen will get lots of love and attention in the near future.

For now, we are just trying to get ready to check-in the hospital tomorrow.  The cath is scheduled for first case, somewhere @ 8:30.  We hope to be done by noon or somewhere shortly after that.  The results are instant and we'll have a much clearer picture of how Caelen's heart is doing and about how much longer we can wait until the 3rd surgery.  I'll do my best to update Friday from the hospital.  Caelen will be spending Friday night in the CICU for observation, and best case scenario, we could be discharged as early as Saturday.  I have a much better feeling going into this procedure than I previously did, so I am hopeful that this will be a quick trip.

Please keep Caelen in your prayers as we check-in tomorrow, and of course on Friday during the cath.  Thank you all for keeping us in your thoughts.

Love,
Katye, Martin & Caelen

Caelen gets a haircut

We were scheduled to go to Rolly Pollies today at noon, but Caelen took it upon himself to adjust our schedule.  We were actually going to be somewhere on time, then he threw up all over his clothes, forcing me to do a quick clean up, then try to head out the door again.  As I was coming back downstairs with another outfit, he removed his cannula from his face (it was taped) and was now crying.  So then I had to go back upstairs and get the adhesive remover.  Got that squared away, now it's time to get the cannula back on the quickly cleaned (but still kinda stinky) kid and get to class.  Now he doesn't want anything to do with the cannula going back on his face and proceeded to throw a fit, cry and change colors.  So, I gave up the notion that we were going to class today and instead we headed to pigtails and crew cuts, the children's hair salon here in town. 

All started well, he was laughing watching the other kids, he even liked sitting in the fire engine chair.  Did ok when the smock went on, and then the scissors came out.  I had removed his oxygen at this point b/c I didn't want the cannula to get accidentally cut, (it's not like I carry extra of those with me but maybe I should), and I wished that I could have put it back on at that very moment.  The waterworks started, he held his breath, tears and snot were running down his face, along with LOTS of hair.  I guess I didn't realize how much hair he had.  It's probably a little too short, but the stylist was trying to get the cut done as quickly as possible so we could calm him down.  He still looks cute, but I already miss his hair.  Here's the pics.

 

You can clearly see in this last picture how displeased he was with me, but he forgave me as soon as we got home.

We've had lots of firsts since my last post.  Last week he rolled over from his back to his stomach and got stuck.  Tears ensued.  He can now scoot in a circle and even scoot a few feet off his original position.  Just yesterday he stacked 5 rings on a toy all by himself and today he reached into a toy called "what's inside" and pulled the toys out.  This was a challenge for him b/c he couldn't figure out how to get his hand in the box and pull the toy out thru the small opening at the top.  His therapy sessions are going well and he is trying to make more noises.  I have a feeling that life is going to get a little more hectic very soon as he starts becoming more mobile and verbal. 

Our next cardiac cath is "tentatively" scheduled for February 18th.  We're just waiting on confirmation from the hospital.  It's a Friday and its also President's Day weekend.  So my fear is that we aren't going to be in the hospital for an overnight, rather we're gonna get stuck all darn weekend for "observation."  But I'll post an update once I know more details about the cath. 

Last but not least, here's a cute picture I took of Martin & Caelen on Saturday at Martin's new Ledo store in Millersville.  It's under construction, so excuse the mess, lol.

We hope everyone has a great week!  Love, Katye, Martin & Caelen