Excellent Follow-up Appointment

Landon's follow up today went well.  Xray was a battle as always and he was pretty upset for this one, but the xray is much better than last week's!  It's much more clear which shows the fluid starting to dissipate.

 

His saturations have been really good lately too (93 or so on room air and 96 or so on oxygen) so the Dr said we can take him off oxygen during the day although we'll still put him on it at night.  It will make his playtime much more fun though!  No more distance restrictions or tripping over the cord.

 

We are sticking to the low fat diet for a few more weeks and expect he will be taken off of that at his next appt (Dec 30) as long as the xray then still looks good.  So we'll have to make sure to have a Thanksgiving/Christmas meal on New Years Day as long as we get the go ahead.  He also had one dose of one of his twice a day meds (enalopril) removed so we are slowly starting to come off the medicine.

 

Great report and he did really good (aside from the xray) but this time was minimal bothering since no labs/ekg/echo. 

 

The PLE test still has not come back (it is taking forever) but Dr B said he would be shocked if that's positive considering how well Landon is doing.  The other stool sample test we did for a bowel infection came back negative. 

 

He's making great strides (literally and figuratively!) and we are so glad to see where he is now as compared to a week ago. 

Good Followup Appt

Landon was upset quite a bit yesterday and it had us concerned that it might be a sign that fluid was accumulating again but when we took his oxygen saturations last night they were normal so we weren't sure what news we would get at Landon's followup appointment today.

His appointment was with his primary cardiologist here in the Springs.  It was a rough morning with him because we were rushing to try to get out the door on time (not to mention the fact that it was below zero outside when we left the house).  He also had xrays, bloodwork and an echocardiagram in addition to all the waiting time so it was a rough few hours for  our poor little guy.  We got a good report though - his xrays are about the same as when he was discharged which isn't what we had hoped for but at least it's not any worse.  His labs and echo looked good so we are happy with that news.  We didn't make any changes to his meds, low fat diet or oxygen based on the visit today.  We'll go back for another followup in a week.  Hopefully xrays will show some improvement by then and we can start to wean some medication or oxygen or go back to a normal diet. 

We are so grateful to be home and today Landon seemed to be in a little bit better mood than yesterday once we got home.  His cardiologist said it would probably take a few weeks before he gets back to his normal self in terms of feeling safe again and not being so anxious about constantly being poked and prodded.  We're hoping he will feel more emotionally secure a little bit each day and are very happy with the progress he has already made. 

Discharge attempt #2

Got discharged this afternoon and just got home. Here are a few pics of Landon on the way out of the hospital. We have a follow up appointment on Thursday. Will post more details later.

We are glad to be home!!

No change = good news?

Xray continues to show very little change today and since the existing fluid does not seem to be bothering Landon or affecting his vitals, they may send us home today with a follow up and xray in just a few days.

The medical team still needs to discuss with the surgical team and Landons primary cardiologist so we will see if they all agree that discharge is the best decision right now.

Not Much Change

Landon got to sleep in a little bit this morning which was nice.  Gary went to work today but his mom will be here the rest of this week so I'm glad to still have some help with him gone.  The xray today again didn't seem to show a significant difference but his lung's were expanded on yesterday's xray and contracted on today's so that can make a big difference in comparing the two.  As many as xrays as I have seen, they still seem very subjective to me.  Those and echos are something I don't think I'll master interpreting. 

Anyway, so they decided to increase Landon's dosage of his diuretic medication to help him pee off some of that extra fluid but that's the only step they are taking now.  They were also planning to talk to the surgical team and Landon's primary cardiologist in Colorado Springs today but I haven't heard any feedback on that yet.  His IV was removed since it was not working very well which is bittersweet because at least he has his right hand and arm back but if they decide he needs any other IV medication he'll have to get another one.  We're praying that he doesn't.

He decided a nap wasn't going to happen today so we did a lot of walking around this afternoon and it was a relief to give him a little bit longer leash and not have to hover over him.  I still have to follow him with the oxygen tank but since he has the IV out I don't have to worry about him falling and landing on his hands and messing that up.  And having the chest tube out makes that a lot easier too.  He doesn't spend much time in bed during the days anymore! He spends a lot of time in the wagon in his room and out on walks or wagon rides. 

So it still sounds like it will be at least a few more days before we can go home.  I think they wanted to see how this increased lasix dose might help the fluid dissipate and see he ends up.  So tomorrow's xray will be a big one but it feels like that every day.  Continued prayers for improved xrays are what we need right now!

Good News from X-Ray

The morning started at 6:15 when we were all woken up to Landon having to get blood drawn from his finger for labwork.  Not a fun thing to wake up to, especially for Landon! 

Landon's xray this morning was about the same as yesterday which we are told is a good thing.  It means that at least the accumulation isn't increasing so there is no need for a chest tube right now.  Hopepfully over the next few days his body will reabsorb some of that fluid so his xray will get more and more clear each day.  If this happens we could go home in the next few days.  If it stays the same it sounds like it would still be likely we could go home this week as long as Landon doesn't have any symptoms that indicate it is causing problems and the surgical team is ok with it. 

He hasn't been eating very well since his procedures this last week but he's also still on a 10g of fat per day diet so it's not like he gets to eat whatever he wants.  I'm sure the repeat meals are only so appealing after 2 weeks.  He's always been a pretty good eater but I can't blame him for not being super excited about food with so many bland options.  He also has the IV in his right hand so it's more difficult for him to feed himself.  We hear that the IV is probably on it's way out since it's not being used (which is causing it to dry up even though it's flushed about every 4 hours) so hopefully he won't need another one after this one comes out. 

We're not counting on leaving any particular day just yet, just hoping Landon continues to make progress in the right direction so we could maybe go home this week.

If you've been following the blog since surgery, you may remember me talking about meeting Kaden's parents (I mis-spelled his name with a "C" before) and asking for prayers for him.  I got a chance to talk to his mom this morning and he's doing very well! He has a long way to go but considering he wasn't given much of a chance after his surgery he has done great.  They are on the same floor we are and might even get to go home this week!  Praise God for sustaining this tiny baby (born at 34 weeks with a heart defect!) and giving him the strength he needs each day!

Landon's an all star

Gary here.  Has Landon been grouchy and irritable?  Yes, but I'd say he has handled all of this like a champ.  Let's just review all he has been through to this point. 

We started this journey November 4th and tomorrow the calendar turns to December.

Nearly 20 trips to get x-rays, which he hates and I don't blame him. 

About 8-10 doses of medicine everyday. 

5 or 6 IVs (I've lost count).  Many failed IV sites too that have left cuts and bruises.

Pokes and prodding every 4 hours at a minimum, even while he sleeps.  Blood pressure readings aren't fun for toddlers.

5 chest tubes.  Excruciating, yet he was basically running today with the chest tube in.  Running better when it came out for sure.

The large incision on his chest, which is looking great by the way.

The very annoying and irritating oxygen tube shoved up his nose.

A total of six procedures where he has been under sedation over the last three and a half weeks.

He is on a low fat diet so he can't eat many of the things he loves, including his milk.

There have been so many times where he has asked to be held and I couldn't hold him the way he wanted because of the chest tubes.  Frustrating for all of us.

I cherished today with no chest tube.  I tried to hold him as much as possible knowing that freedom could be stripped tomorrow.  I think my shoulder hurts from all the holding.  The second x-ray today he didn't cry at all.  A huge blessing and break. 

Landon is a hero.  A fighter.  A winner.  Brilliant.  You should hear him speak.  See him do puzzles on our tablet.  A charmer with his personality.

Praise God for his spirit and the testimony that is being written.  An incredible story he will forget since he's so young but which will always be a part of who he is.  So very proud.  One day at a time.