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.

An Encouraging Day

The pulled the chest tube today around noon and sent Landon down for another xray right after (which he didn't mind at all since he was on some strong pain meds).  After that the day improved.  Landon did a lot of walking around when we went on our normal wagon ride around the hospital where we saw the new Christmas tree! It held his attention for about 5 seconds before he said "ball machine?" He also took a 4 hour nap which was much needed after last night. 

 

We got him a much needed bath (which he hates in the hospital since all we can really do is a sponge bath but he always feels better afterwards) and did lots of wagon rides around the unit with daddy.  We are hoping and praying that the xray tomorrow shows improvement over today's and we can continue to move forward without the chest tube.

 

 

Daddy and Landon playing puzzles on the tablet after bathtime (we gave him a few minutes of a break from oxygen after bathtime).  I swear he was happy, just focused.

 

 

The beautiful Christmas tree they just put up in the lobby of the hospital

Bad News/ Good News

Sorry for the delay in posting!  Here's on update on the last few days:

The rest of Thanksgiving was a little bit rough.  Landon got his new IV before we moved up to the CPCU but it took 3 tries and a long time to get it, which is never fun.  So we were all pretty much spent the rest of the afternoon.  They put everything but battle armor around it though to make sure we can keep it for as long as possible so hopefully it will stay good for a while.   They also gave him some albumin and immunglobulin by IV so that took several hours to run and we couldn't really go anywhere.

We had a nice dinner for Thanksgiving that was prepared by a church for the Ronald McDonald house.  It was a bit non-traditional since we were trading out to eat in the hospital lounge so somone could stay with Landon but it hit the spot.  I'm determined to make a nice Thanksgiving-esque meal once we get home and Landon is no longer on a low-fat diet.  It might not happen until Christmas but we'll make it happen!

Pretty much since Thursday afternoon Landon's chest drainage has slowed almost to a complete hault.  Yesterday his chest xray showed that fluid was accumulating so it seemed there was fluid that wasn't draining through his chest tube for some reason.  It is particularly important that it drains at this point because if there is fluid in his chest then it prevents the pleuorodesis from really doing its job of adhering the lining of the lung to the chest wall.  They tried a few things yesterday to try to get the fluid moving and pull out any blockages that may be in the tube but they were not effective. 

Yesterday was pretty frustrating for us and both Gary and I were feeling defeated.  Having been here for almost 2 weeks since being readmitted it felt like we're back at square one.  Landon has been more irritable and while we still see his "normal" self some he has a very short fuse right now with the medical staff.  We knew that last night would be a tough night for him to sleep very well since the fluid accumulation can be uncomfortable.  We were given the option of giving him some Ativan (an anti anxiety med) just to help him relax and sleep well so we decided to try it and unfortunately it had the opposite effect of making him wide awake.  So after getting it at 8pm he was up until 1130 which was frustrating for us.  He slept in a little bit today and had an xray a little bit later so at least he wasn't up super early. 
_______________________________________________________________________

Update:

We just had rounds and found out that his xray today actually looks better than yesterday's.  Since his chest tube is still draining almost nothing and is pretty worthless at this point, they are going to pull it out but wait on putting in a new one.  Hopefully his xray tomorrow looks better than today's which would be a sign that his body is reaborbin the fluid and that the fluid that is being produced is either going down in quantity or at least not accumulating in the chest.

This is great news since this morning we were planning on him probably having to get a new chest tube again.  We will still have to wait and see though how things go tomorrow before we can think about going home anytime soon.  Even if the xray looks good tomorrow they will keep him a few more days to make sure he doesn't reaccumulate.

Please pray that his body will reabsorb the fluid and that Landon would continue to take steps in the right direction.

Much to be thankful for

Landon did great overnight - they weaned off his IV drips completely and continued to mostly sleep and wake up intermittently until about 3:30am and then was up!  At that point he had slept for a LONG time and he was off the drugs that were keeping him so tired so we weren't surprised.  He watched some movies and was very much back to his normal self this morning.  We feared today would be another day of pain for him so we are grateful to see our happy little boy especially when he's only on Tylenol now for pain.

They pulled the IV out of his hand last night since it dried up and this morning the other one he had in his foot came out.  I think it wasn't taped down well enough or something which is a bummer because he had only that that one a few days.  We had hoped we could put off getting another one and see if he needs it because he's off his IV meds but they decided in rounds that they want to give him a few things by IV so he will have to get another one shortly.  He really is starting to run out of places to try so we are praying they can get it quick!  Once they get the IV started, we will move back up to the CPCU.  He had an xray this morning (a portable one so he didn't have to go downstairs for it - it's still not fun but not the kind he really hates) and his surgeon said it looked normal for post-pleurodesis so we take that as good news. His fluid drainage is really down which is mostly good but we don't want it to dry up too quickly or it could mean the chest tube isn't working. 

A church is providing meals for the families in the Ronald McDonald house and is even going to deliver some to the hospital so we will get a nice meal without even having to leave.  We have so much to be grateful for on Thanksgiving but we also want to rememeber that the Bible says to "give thanks in all circumstances".  We should pause and be grateful for the ways we have been blessed each and every day.  It is not our preference to be in the hospital today but we are thankful there are many doctors and nurses here to willingly care for Landon when they would probably rather be home with their families as well.  Landon is right where he needs to be and for that we are very thankful. 

Sleeping it Off

Landon is still sleeping quite a bit - he will occassionally wake up and say a few words or be upset for a few minutes but he has mostly been sleeping since we got back here several hours ago.  He is still on some strong drugs for pain relief and to help relax him and those will be slowly weaned overnight as he allows. 

He spit out his airway support just a few minutes after my last post (which was fine) and he's been doing good without it.  He's been drinking some water and a few sips of juice but we're not ready to move on from that quite yet.  We will be trying to walk the fine line of getting him to not be so "drug sleepy" and still keeping him in as little pain as possible. 

He's done great today but we certainly hate seeing him uncomortable or in pain.  I try not to dwell on the pokes and prods he's endured but he has a lot of bruises and scabs now from IVs (and many attemps), chest tubes, central line, etc.  and even as some of them fade it is little reminders of the champ he has been.  It will be such a blessing once we can hug him and pick him up without having to worry about IVs or his chest tube.

Please pray that as he becomes more awake he will be comfortable. 

Procedure compete

The procedure is done and we are with Landon. He is sleeping and has a support in his airway since he is on some heavy pain meds right now. The rest of the day will be about pain management. We won't know how effective it was for at least a few days  hopefully by the weekend we'll see a little bit of a difference as far as the fluid goes.

He has a new chest tube which is draining well and once they pull the airway support we hope he will be able to start drinking some clear liquids and hopefully move on to solids later tonight or tomorrow . We will be in the cardiac icu overnight and as long as his pain needs to be aggressively managed.

Moving forward with pleurodesis

Landon had very little output overnight but his xray this morning did show fluid again so they are performing the pleurodesis right now and also giving him a new chest tube that will drain better.

Please pray that this would be effective in eliminating the fluid accumulation in his chest and that his pain would be managed well today since it can be very uncomfortable from what we've heard. He will be on some iv pain meds so we hope that will help him be comfortable.

Next Step

We talked to the surgeon late yesterday afternoon after I posted and he said we would watch the fluid today and move forward with pleurodesis, the next step of treatment of the pleural effusion, tomorrow.  It is a procedure (again, under anesthesia) in which they put a chemical in the chest cavity for a period of time and then drain it out.  It essentially irritates the outside of the lung and causes it to adhere to the chest cavity to eliminate the space in which the fluid can build up.  Since the fluid cannot accumulate in the chest cavity, it is reabsorbed by the rest of the body.

Landon's fluid was still significant last night and this morning but since this afternoon it slowed to almost a complete hault.  We have seen several clots come through the chest tube over the last several days so we don't know if it is a clot that is preventing drainage, kinks in the tiny chest tube, or if it really could be clearing up.  His drainage overnight tonight and xray in the morning will tell us a lot.  Our assumption is that if he has minimal overnight drainage and the xray tomorrow looks clear, then we might hold off on the pleurodesis.  But if their is either a lot of drainage overnight OR a chest xray that shows fluid building up, we will likely move forward with it late tomorrow morning and also have a new chest tube put in place that will drain better while he is under anesthesia. 

We would love if the fluid just went away on it's own and no other interventions were required.  Please pray for clarity in how to move forward in the morning. 

Cath Complete

They completed the Cath around 12:30 and we went back to see Landon shortly after.  He was upset and somewhat out of it for a while, which we have learned is normal for his post-anesthesia self but it's still not very pleasant.  After a little while of recovering in the pre/post unit on the 3rd floor they sent him back up to his room on the 9th floor. 

He napped for a little bit and woke up and wanted to watch "balloon movie" (Up) so we are relaxing and watching that for now while he eats a snack (his first food of the day).  He had to lay flat for 4 hours after the Cath and luckily we are almost done with that so hopefully we can get him up soon and let him go explore a little bit.

The Cath itself went well - everything heart function wise looks good.  They did say he threw up andd aspirated a little bit but not enough that they felt it was a concern.  We will continue to watch him closely but if it was going to be a problem we think he would have started showing signs by now.  He had a few collateral vessels that they put tiny coils in to help cut them off and keep them from getting any bigger but the doctor who did the Cath did not necessarily think that was a major cause of the fluid.  So in the long term, the Cath provided very good news about Landon's heart function but as far as the fluid goes, it doesn't sound like it provided a quick solution.  As far as we know we will have to continue to wait and hope it subsides.  There is one other treatment option that we know of but we will see how things go for a few days before moving forward with that.  Again, we know that time will eventually solve the problem, it's just a matter of how much time.

Thanks again for your prayers today.  Despite the fact that it is not the quick solution we hoped for it is still good news for Landon's long-term health.

Cath Update

Landon had a decent morning (he was up and happy at 5:15 for some reason so it started early!) and is still in Cath.  His xray this morning showed a moderate amount of fluid around his right lung but it seemed like he had a decent amount of drainage this morning before his Cath so we hope it will continue to drain as it should. 

So he's been back there for 3 hours now and we're not sure how long it will be.  They are going to coil some collateral (extra) vessels but did not feel that ballooning any vessels was necessary based on the size of his pulmonary arteries.  It took a while for them to get the lines in him, so it's taking a little longer than we planned on, but that's nothing new.

One more day of calm

We had somewhat of a quiet day again today, which was great considering tomorrow will definitely be crazy with xray early in the morning and Cath at 9am.

We made it to the playroom this morning, watched some movies and had our typical ball machine/fish tank tour in the late afternoon.  The output from Landon's drainage tube has been significantly higher the last day or two so we are hopeful that during Cath tomorrow they can find and treat the cause(s) of the fluid.  Whether or not the Cath is an effective method of managing the continued perfusion, we are assured that with time it will eventually go back to normal, it's just a matter of how much time (for some post-fontan patients it takes weeks). 

Please pray for the Cath at 9am and that it will provide the insight the doctors need to effectively treat Landon and hopefully get him home soon.

More of the same. . .

The past few days with Landon have been a little more mellow and it's been nice to see him more comfortable instead of anxious all the time.  He's because much less skeptical of the doctors and nurses and will even willingly get his blood pressure taken if he can hold mommy or daddy's hand.  We've learned a lot of what he will and won't allow and what just makes him more comfortable (ie Gary holding the stethoscope to put it on his chest while the dr listens) and continue to explore the hospital a few times a day to get him out of the room and let him see some of the fun things. 

He had an xray yesterday which looked good and got a "day off" from xray today.  The drainage from his chest tube has not slowed to where we need it to so it looks like they will move forward with Cardiac Cath on Monday.  If it dropped down to where they could remove the chest tube we could maybe avoid the cath but he is putting out 3-4 times that amount so we don't anticipate this will be an option. 

In the Cath, they will get a better look at the inner workings of his heart than they can on an echocardiagram and can possibly do a few procedures that could help with the fluid that keeps building up.  The surgery created a whole new blood flow for his body which he is still getting used to but there could be some changes from the last time they did the Cath 3 weeks ago like extra vessels that have formed or narrowing of vessels that the surgery was performed on.  After Cath we'll have to wait a few days to see how his body responds and if the fluid slows. If it does we'll have the chest tube removed and hopefully go home a few days later if he doesn't reaccumulate fluid, but if not we'll have to move on to the next step of what they can do. 

The good news is that the fluid that is building up in his lungs continues to drain but we need it to slow down a lot more before we can take another step towards going home.

We are not thrilled to still be in the hospital but relieved that Landon has gotten a little more used to this routine and environment which lowers the daily stress for all of us.  Gary and I are still staying in Landon's room at night and Gary's mom is still at the Ronald McDonald house.  Luckily this means comfortable accommodations for all of us at a low (or free) cost. 

Thank you for your continued prayers.  We are still in "wait and see" mode as far as when the drainage will slow down and hope that the cath will provide some clarity in terms of information and possibly treatment.

A Breather of a Day

Today was a little bit of a break for Landon from tests and discomforts.  He didn't have an xray this morning which was nice and there weren't any other "tests" ordered for him today so we got to have a lazy morning in his room.  It was amazing for Gary and I to both have eaten breakfast and showered by 9am!  Landon also did a great job today of not being so freaked out during getting his blood pressure taken (which happens 6 times a day) and his being more calm helps the results not be artificially high.  They were even going to up his medication for blood pressure and with the better pressures today they decided not to. 

Not much news when it comes ot his medical status since not much has changed.  Right now there is a catheterization scheduled for Monday and we hope to talk to the surgeon tomorrow about his reasons for wanting to move forward with that.  We trust his decision but want to make sure we're on the same page, especially since Landon has gone under anesthesia so many times in the last few weeks.  We are continuing with the low fat diet and he's still doing well with that which is great.  He still loves going to see the ball machine, the "good" fish tank with Nemo and Dory, and sitting in the window at night to watch for airplanes.  We didn't make it to the play room today but I'm sure we'll be there tomorrow!

We are eager to get home but understand that this is a marthon and not a sprint and want to make sure we don't take Landon home only to bring him back again a few days later.  Thank you so much for your diligent prayers and encouraging words.  They are so appreciated and often come to us right when we need them.  Please continue to pray that Landon would be comforted and that we would have the strength to perservere.  We have been blesesed to have an excellent team of doctors and nurses who patiently answer each question and attend to each request.  This makes all the difference and assures us that we are all on the same team - Team Landon!

No Countdown Yet

Yesterday and today have definitely had their challenges but things seem to be going ok overall.  The drainage from the chest tube has slowed down some but not enough where they would consider removing it yet. 

Some of the tests they did on the fluid right after they put in the chest tube came back borderline for chylous - meaning it contains lymphatic fluid rich in fat that is normally absorbed by the intestines.  This is a complication that happens occassionally and is treated by a low fat diet so they have put Landon on that for now to see if it affects the amount of fluid output.  If it seems to help dramatically he'll proably be on this diet for 6+ weeks.  The limit is 10 grams of fat per day which is a very small amount (I ate a bag of sun chips for lunch with that amount).  This means we have to plan each meal and snack very carefully and it's a challenge to make sure he gets filling foods and a variety of nutrients while sticking to this limit.  Landon has done very well with it so far and luckily has not asked for some of his favorite foods the last few days (french fries, pizza, donuts).  He has a mild milk allergy as well which provides an additional challenge since skim milk and fat free yogurt would be good sources of low-fat calories and protein. 

Our understanding of the next steps are to watch what the fluid output does over the next few days and see if it starts to drop off, continue the low fat diet, and hope for good xrays.  The last few days the xrays have been good though so it is a good sign that his body is draining the excess fluid it produces.  The surgeon has also mentioned wanting to do another cardiac catheterization possibly tomorrow or Monday but we need to discuss that with him a little bit more before we move forward with it to determine what is leading him to want to do that. 

Overall Landon has continued to be a champ and even after major meltdowns (as in - MAJOR)bounces back to his happy self.  He is still wary of the doctors and nurses (we have heard one too many times how "developmentally appropriate" this is) but has gotten a little bit better with a few things.  The xrays have still not been fun but haven't been quite as bad the last few days.  Just this morning he had labs drawn (a finger prick followed by lots of squeezing) and xrays before he had even had breakfast so the mornings are usually not easy.

Right now we don't have a proposed discharge date on the calendar - our expectation is that it wouldn't be before early next week since they'll want to be extra conservative when pulling the chest tube this time.  There are a lot of variables and possible next steps so we're just taking it one day at a time.  Luckily things like the playroom and going down to see the ball machine in the lobby provide welcome breaks for all of us in days that can be difficult. 

Two Steps Back

We had a followup appointment in Denver today where Landon's xray showed a significant amount of pleural effusion (fluid around the lungs) on one side.  It was enough that they decided to readmit Landon to the hospital and put in a chest tube to help drain the fluid.  We were bummed to have to be readmitted but not totally shocked.  Landon has not been sleeping very well the last few nights and has been very agitated at home the last few days so we were afraid there may be something like that going on. 

It was a little bit of a rough afternoon since right when they decided to put in the chest tube, we had to put Landon on npo (no food or drink) immediately until the procedure was done which was from about 2:30 until 9pm.  They had a tough time getting an IV in him and after 4 or 5 failed attempts opted for getting an anesthetic in him with a shot and got the IV done after he was under.  Everything went as planned and with some "expediting" of the drainage a lot of fluid has already drained out so we are hoping that will help Landon sleep a little bit more comfortably tonight.  It's a different type of chest tube than he had in surgery and will hopefully not be as uncomfortable.  He was already excited about the playroom when we mentioned it to him today so we hope to be up and about quite a bit tomorrow to help encourage his body to get rid of the fluid.  We are in CICU since he had the procedure for putting in the chest tube tonight and plan to move up to CPCU in the morning. 

Unfortunately we came totally unprepared to be readmitted so Gary went home late tonight to get some of our stuff.  Gary's mom, Connie just got in town yesterday a few hours after my mom left so they have traded places for the time being and we are so grateful to have their help while in the hospital.  When we talked to the doctor yesterday he said the minimum amount of time before we could go home would be 3 days or so but that could vary greatly based on how the fluid drains and if there continues to be more. 

Like I said we are bummed to be back in the hospital but glad to know what the issue is and hopeful that Landon will be able to go home again soon!  This is a fairly common issue for post-Fontan kids so it's not too much of a surprise to anyone and we are grateful there is a set treatment plan in place.

Packing up and heading home

Xray looked good this morning so we got the go ahead to head home! Packing up now and we just have to meet with the oxygen guy and go over discharge papers before we can go.

Yay!!!

Post Op Day 8 - Rumor Has It. . .

Landon woke up a few times last night, we think from some pain but we got some pain meds in him and got him settled down and luckily he slept in a little bit this morning.  They have switched him to "as needed" pain meds now, which we are ok with since the chest tubes are out and there should be less pain and discomfort to manage.  We'll still stay on top of his pain meds while he's awake but hopefully it will be a good thing that he doesn't have to be woken up to take them over night since they aren't "scheduled". 

We have taken him on several wagon rides around the unit since we got up to CPCU but yesterday after chest tubes came out - we did lots of getting out of bed! We walked up to the nurse's station to say hi to everyone, played on the floor in our room for a little bit with Landon's cars, sat on the window ledge in the room and spotted airplanes and after dinner we ventured out to the activity room on our floor. They have all kinds of toys, crafts, movies and fun things for the kids to do. It's amazing to see them just be kids in there and kind of forget about everything else for a little while. Landon had a blast and was walking all over the place to see all the different toys! We are still a little wary of letting him walk without one of us holding his hand or standing right over him because he's still a little wobbly and we want to make sure he doesn't fall in a way that is painful or dangerous. But he is walking around and bending over and everything so he's already bouncing back quite a bit physically.  We went back to the activity rooom this morning and I have a feeling we'll be there again later today!

Chest xrays this morning were tough as usual (getting tougher by the day it seems) but the good news is that his xray looked pretty clear.  This is HUGE news since his chest tubes are out and there isn't much fluid building up that needs to come out.  During rounds they decided to bring him down to a little bit more of a "normal" dose of his diuretic and see how he tolerates it in his xray tomorrow.  If that xray also comes back clear, we will probably go home tomorrow (!!).  We do not take that "IF" lightly though, so although we'll be ready if they give us the go ahead, we won't be surprised if they keep him over the weekend.  Home or not, it's great to see Landon back in action and getting back to his old self more each day. 

So Rumor Has It that we might be going home tomorrow!  We'll keep you posted. . .

Post Op Day 7 - Chest tubes out and a few pics

After the unavoidable chest x ray this morning Landon went down to the 3rd floor to get his chest tubes removed (YAY!).  They used a small amount of anesthesia to knock him  out but not enough that he needed the respirator.  They also put in an IV while he was out - they don't need it for anything right now but better for him to get it while he's out instead of while he's awake just in case it is needed later.  We aren't thrilled about it but knowing what a tough stick he can be, it's the lesser of two evils.

We asked the surgeon about the test that came back "iffy" yesterday and he's not concerned about it right now and it definitely wasn't a reason to postpone removing chest tubes.  His x rays looked good this morning so that was a good final check to make sure we were good to go.  With anesthesia he wasn't allowed to eat anything several hours before or drink anything a few hours before so he was hungry and thirsty by the time we got down there.

 So with his chest tubes out our next step is to continue to monitor his chest xrays closely to make sure he doesn't have any additional fluid that needs to be addressed.  It is a possibility they could have to put the chest tubes back in (as I'm sure it always is) so we will hope and pray the we can manage the fluid with medication and moving around a lot to help his body reabsorb any additional fluid.  The next few days will be very telling in whether we will be able to move forward (and go home!) or have to step back a little bit.  We're excited that going home could be soon but not counting down the days just yet since we know how quickly things can change.  

With his chest tubes out it will be much easier to get him in and out of bed so we can hold him a little bit more and get him up to walk some more. 

Sitting up tuesday

Playing with trucks Tuesday (moving so fast it's a blurry pic - signs that he's getting back to his old self).

Sitting with Daddy Wednesday after getting chest tubes out (gauze where the 3 tubes once were)

Post Op Day 6 - Rounding the Corner

Today has been a little bit easier for Landon - still had an xray this morning but the rest of the day has been a little bit quieter.  We tried to get him up to walk a little bit this morning and he took a few more steps than last night but still did not like being forced to stand up.  We got him out of bed again after dinner to walk again and he is getting better each time. 

He still had his fare share of upset moments today and apparently during a thrashing session he kinked the IV in his arm and rendered it useless (and very bloody) so they had to take it out.  Which is pretty impressive since they had it taped to an arm board and covered and everything so he couldn't see it.  They are planning on pulling his chest tubes in the morning which they will sedate him for so if they need to put in another IV they can do it  then.  They ran a few tests on the fluid draining from his chest and one came back great and the other came back iffy so they will run the results by the surgery team before they pull the chest tubes tomorrow morning. 

He finally got a bath this morning - the first one he's had since surgery.  With all the stickies and sweating he's had over the last week he was definitely grubby and is looking much better.  And medicine has gotten much better over the last few days.  He still does not like it but is not throwing quite as much of a fit over them, which is nice because some of them are several times a day. 

Like I said, today had its difficult moments but we also saw a lot more of Landon's personality.  He willingly sat up for a while (before we kind of had to force him to sit up and he wasn't happy about it) and played with some trucks in bed for a while and was just a little bit happier and belly laughing at times.  It seems like each day for the last few days we've gotten a little bit longer stretches of time of him being in a good mood which is a lot of fun.  He's even learning new things so we are glad to see that he does not appear to be affected by surgery from a cognitive or developmental perspective at this point.  Today he learned to say "excuse me" after he burps and even did it once unprompted.

We are hoping after getting chest tubes out tomorrow he will be even happier and more comfortable - it will certainly make him more mobile.  Please pray that the iffy results on the fluid turn out to not be a concern and we can move forward with getting the chest tubes out.  Getting those out would be huge to getting out of the hospital and back home to our normal routine very soon. 

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Gary here.  Just a quick note from my perspective.

The emotional roller coaster is taxing, but God seems to provide the glimmers we need to make it through each day. Words can't describe how hard some of this has been, but words also fail to describe the joy we have for getting our little boy back and through this.  His saturations are already a lot higher on room air. 

We are so excited to see the positive impact this will have on Landon's energy and activities.  There have been times in the past where I stopped and noticed how tired he would get doing some simple tasks.  It was God's way of showing me how necessary this surgery was despite how well Landon was doing. 

Thanks for your prayers.  We still need them.  To throw a sports analogy out there,  we're in the 4th quarter, but we can't stop until the clock reads zero so we can go home.

Post Op Day 5

I just realized that we wrote the post op day 4 post last night but never published it so you're getting 2 days worth of updates at once.  Sorry about that!

Today was a tough one (truly, they all are) just because there was a lot that got thrown at Landon and we can tell he's tired of it.  He got another great night of sleep last night (slept until 7:40 this morning!) and had a nice quiet early morning eating breakfast and watching "Up".  But then we had his 9am meds (which there are several of), rounds with the doctors and X-rays which he still hates.  If he was just getting a regular chest xray they could bring the machine to our room but they want to get a 2-view xray so we have to take him down to radiology for that and he's figured out when we are going to do that. 

When we got back, we let him sit in the wagon for a little bit but then had to take his least favorite med (which he totally flipped out about today) and get an IV (which he also understandably flipped out about).  They said they needed to do some labs in rounds and that it would be best to just go ahead and put in an IV with that same poke just so they have the access in case they need it.  It was pretty excruciating to get thim through that but since he got the IV in his arm it hasn't seemed to bother him too much.  And they got it in the 1st poke too which is ALWAYS a plus!  Poor guy already has several bruises where they tried and failed to stick him with an IV while he was under for surgery.

Then he got lunch followed by an echo.  He had spent so much energy fighting us all morning with xrays, meds and the IV that by the time the echo came around he didn't fight it - he just let them do their thing and watched a movie.  He took a nice long well-deserved nap after that.  They decided in rounds this morning to put him back on oxygen to help dialate his pulmonary arteries and hopefully prevent more fluid backing up in the plural space (some doctor is going to correct me on this I just know it) where they are trying to drain the fluid now with the chest tubes.  So they put the oxygen on him tonight and he was going crazy with it at first but seems to have quite fighting with it for now. We heard that the xray from this morning was about the same as yesterday (meaning he still has some fluid to get rid of through the chest tubes) and he haven't heard anything yet about the echo. 

There was also concern of a possible air leak in the chest tubes today but since they were inconclusive in discerning whether one exists they decided to just watch it for now.  There are always concerns with the chest tubes (too much output, not enough output, color of output, air in the tubes have all come up at various times in the last few days but none of them have been escalated as of yet) so we are anxious for him to get them out!  Still no solid word on when that will happen though.

They've been encouraging us to get him up walking the last few days - it's hard though since he has been so miserable and had some many unpleasant things going on to force him to do another thing he will clearly hate in the few minutes of happy time he has during the day.  We took him on a wagon ride around the unit tonight though and got him out of the wagon to stand up for just a minute.  His legs were really wobbly and he only took a couple of steps on his own but it's a start!  His eating continues to improve but is still not back to normal so I'm sure his low calorie intake has something to do with his weakness and also not standing up for almost a week.

It's hard to pick him up and move him around at this point because we can't pick him up under his armpits, he has the IV in his left arm now, and he has the 2 chest tubes so we have to be very cautious of all of that.  Plus he's 29 pounds so he's heavy even when we can pick him up normally and he's too big to try to pick up like a little baby !

I guess I knew this in my mind before this all began but each day that goes by gets tougher for Gary and I  - to have to watch him in so much pain and discomfort and to have a boy who loves being friendly to everyone be skeptical of everyone who comes in the room including the maintenance guy and the housekeepers.  Someone ordered today to put him on pain meds "as needed" instead of on a schedule and I got them to change that back so he still gets motrin/tylenol round the clock without us having to ask for it- it was a near Mama Bear moment. No parent likes to watch their child be uncomfortable and obviously this is no exception.  We still enjoy that window of time each day when he is watching a movie or something and is just chatting up a storm and back to his normal self for a little while.  We look forward to that being the rule again instead of the exception. 

Thanks for your continued prayers - we know there are several armies of people praying for Landon and we are so thankful for your thoughts, prayers and kind words.  They remind us that this time is a few frames in the movie of Landon's life.

Post Op Day 4

As Gary said earlier Landon slept much better last night which was a welcome break for all of us.  Unfortunately he was woken this morning to a finger poke for labs followed by going downstairs for xrays which he doesn't like at all.  We let him stay in the wagon to eat breakfast and then took him on a ride around the unit just to get out of the room for a few minutes.  Before we left for our little walk he kept saying "no pictures!" because that's what we told him xrays are.  Add another thing to the list of stuff he hates in the hospital.  Who can blame him?

Other than that the day was still emotional for him - medicines are still a challenge and he is wary of anyone coming in the room or touching him so he gets hyped up pretty quickly when unpleasant things are happening.  He took a good nap this afternoon though and his eating is improving little by little.  It sounds like there is some more drainage that needs to happen with his chest tubes so he'll probably have those at least a few more days according to the surgeon and doctors.  He continues to make progress in the right direction even if the steps are tiny some days. 

There was a while this afternoon where he was a little more himself and it was fun to hear him chat away about what he was eating, what was on the tv, etc.  Saying things like "elmo funny" or "elmo ride bicycle" are reminders that our funloving little boy is still in there.  The days are tough but we are glad to say that his surgery is behind us and as he moves forward in healing, we don't have another procedure looming ahead.  It's hard to say if he will ever need another surgery but if he does we hope it's a looong way down the road!

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Gary here.  I think the hardest part of this for me is when he asks to be held.  I want to scoop him up in my arms and fling him in the air like I do all the time.  This afternoon he woke up EXTREMELY upset from his nap.  He kept asking to be held and I'll could really do was hover over him and hug him on his bed because of the chest tubes.  Basically, cutting to the chase with our prayer requests now, pray for the drainage to finish and he can get the tubes out.  He also has an echo likely tomorrow, so pray that everything looks good on that too.

Last night

Landon has slept a lot tonight and is still sleeping and much more peacefully.  Hopefully this is what he needs for his body to kick out the last bit of fluid so we can get the chest tubes out.  A much needed break for Allison and I too.  There were a fair share of frustrating moments yesterday, but I'm hopeful from here on out every day will be a little better than the last.

Post Op Day 3 - Pressing On

Last night was another tough one - Landon seemed to sleep a little more restfully (not as much jumping awake) which was good but he still woke up quite a bit.  With assessments every 4 hours, pain medications often due in between assessments, and his own discomfort he woke up every hour or two.  We ended up not giving the melatonin because with all of the other medications we had to give and his level of anger we decided to skip it.  We're hoping as he gets more food in his belly he'll get more comfortable and sleep more soundly. 

His eating and drinking has been pretty poor still so we are are offering him anything and everything to get him to eat (rice krispy treats for lunch?  no problem!) but when he says no to cookies and french fries it is clear that nothing sounds good to him.  We did get him some pizza for dinner (and took off the cheese) and avocado and he finally ate a little bit of that so we were very encouraged to see him finally start to show some interest in eating even small amounts.

He managed to pull/kick out the IV in his foot early this morning so as of right now he has no IV access.  Which is great for his comfort but not so great if they need to draw blood or give him a medicine by IV.  We are hoping that they don't need to put in a line for any reason before he gets discharged but if they have to draw blood they might go ahead and put one in just in case.  His white blood cell count was high at the last labs they drew which at this point is a 1 time thing so they'll check it tomorrow and see if it's still high to see if they need to treat more agressively for some type of infection.  He's still on the antibiotic for whatever was happening in his lungs the day of surgery but that's not a major concern at the moment. 

He is still having a lot of drainage from his chest tubes and his xray today showed that there is some fluid that still needs to come out on one side so he'll have to have the chest tubes at least one more day.  He still shows a lot of discomfort but he seemed to be more comfortable than he was yesterday since getting out the IV in his neck.  Giving him medicine has become a real challenge.  He takes his few meds at home every day with no complaints but being in the hospital has changed that so when we have to give him 5 or 6 oral medications at one time, it is very difficult to get him to cooperate.  Sometimes he even works himself up so much that he throws up the medication and then we have to dose it again.  Little rewards have not been effective so far in getting him to comply so medicine time is tough for all of us right now.     

All in all he's taking baby steps to being more comfortable and eating better.  We're all tired from last night and the exhaustion of today so hoping for a more restful night than the last few and for tomorrow to be another step in the right direction. 

Post Op Day 2 - Movin' on Up!

The last 24 hours or so have been good medically, but challenging for Landon.  Yesterday after I posted, he threw up most of what he had been drinking all day so that was less than ideal, although not a major setback.  He seemed to feel a lot better after he threw up at least.  Last night he did not sleep well at all.  He woke several more times than the night before and just didn't want to sleep.  We're not sure if he got his days and nights mixed up since he rested a lot yesterday or if he's gotten anxious about the constant medicine and unpleasant things he's had to endure.  He also still has chest tubes in which are very uncomfortable so that in might be enough to keep him from getting comfortable enough to sleep.  Regardless of the cause, it was a tough night for all of us since we were up with him quite a bit.  Then after he woke up this morning and ate and drank a little bit he threw up again.  Both times were after taking oxycodone which needs more on the stomach than he's had so far I guess. 

Today he still didn't rest much but took several short naps here or there.  He kept starting to fall asleep and then jerking awake.  Again, not sure if it's anxiety or discomfort or what but we're going to give him some melatonin tonight to help him sleep.  He's become very wary of anyone who comes in the room and gets pretty upset at the slightest assessment (understandably so). 

Despite his discomfort and lack of sleeping and eating, he's doing very well on the medical side of things so today they moved him up to the Cardiac Progressive Care Unit (CPCU - aka "the floor").  This is a huge step in the right direction and somewhat of a suprise that it happened so quickly!  This is where we will be until he's discharged and it's just quieter and more private than ICU and hopefully will allow him (and us) to rest better.  So far in the last 2 days he's gotten out he's arterial line, an IV in his neck, one of his 3 chest tubes, his oxygen (huge YAY on this one - he hated it so hopefully he won't need it back before we leave), his temporary pacing wires, and his Foley Catheter.  His still has 2 chest tubes (which we hope to get out tomorrow) and an IV in his foot which will probably stay in up until we leave and of course his leads which may be annoying but aren't really painful.  They took a look at his incision today and it looks great (really, it does!)- no concerns there right now. 

So we're only post op day 2 - there is a lot of ground to cover - Landon needs to be eating and drinking well and have some nice clear xrays and I'm sure several other milestones I'm not even aware of right now before we can go home.  He's taken it about as well as you could expect for a 2 year old who's been through what he has in the last few days.  It's amazing to see little glimpses of his personality come through the downtrodden little guy we've seen over the last few days.  Just hearing his voice and hearing him say little typical phrases is encouraging and reminds us of our energetic happy little boy who will hopefully very soon be back to himself! 

A hospital is about the last place you can be all "woe is me" about yourself or your loved one because it's very unlikely you have it the worst out of everyone in the whole place.  There have been a LOT of newborns in the CICU in the last few days and it makes me choke up just seeing them and remember the roller coaster that each day brought when Landon was so little.  Each "setback" at that age is extremely serious and we are so grateful for all that God has brought Landon through over the last 2 years.  I briefly met a couple today in the CICU whose little boy is only 2 days old and was born at 34 weeks.  He's quite literally fighting for his life and according to them things were looking pretty bleak.  Please say a prayer for Caden and his family that God would heal him and speak through his life.  As far as I know he is scheduled to have surgery on Monday but I'm not sure the details of his medical condition.

We are also so grateful to be in a hospital that has both an ICU and a stepdown unit dedicated to heart kids.  Treating kids is often very different than treating adults and to have an army of doctors and nurses who understand so much about Landon's diagnosis and how to treat him is a huge blessing.  They are so specialized in what they do and are excellent at it.  Today and yesterday were hard, but we were blessed to have one of our favorite nurses from 2 years ago care for Landon yesterday and another phenomal nurse today.  If this post sounds a little bit bipolar it's because that's how I'm feeling.  I am so proud and amazed at how quickly Landon has progressed and so happy to have him one step closer to home.  At the same time it's been heart wrenching to see him in pain and discomfort and confusion that we can't always do something about.  We trust that God will give us the strength for each day and so we have to trust he will do the same thing for Landon.

Thanks again for your prayers - sorry the posts are much less frequent (and much longer) than surgery day but we will try to continue to post at least daily to keep everyone updated on Landon's progress.

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This is Gary here.  Allison has said just about everything that I could say, but I did want to add one thing.  Thank you so much for your prayers for Landon, but also thank you for the prayers for our family as a whole.  I feel like this time much more than the other two times Allison and I have been on the same page on just about everything in terms of Landon's treatment and our communication has been good.  We are still making tough choices everyday, especially when it comes to his pain management, so it has been critical for us to be in sync.  Thank you.  It's not of our own doing for sure.

Post op day 1 - slow and steady

Last night went well but was about what you would expect for the night after sugery.  Gary and I stayed in his room and he woke up every few hours, usually upset for a little while and then we would coax him back to sleep or get him some pain meds to help him sleep.  So we had several sleep interruptions but were able to get enough to keep us going today.  Overall it went very well considering where he is in the recovery process.

Today has been a lot of the same - lots of sleep but not usually long stretches.  He's had an hour here and there but usually startles awake after a while and is confused at first.  We've gotten him to sit up a few times which helps him cough and clear up his lungs but coughing is not very much fun for him so it's a blessing and a curse.  It's good for him to cough up some of that crud since his lungs need to get cleared up.  Todayis a day for a little bit extra in the pain med department but we're trying to move away from stuff that will make him groggy. He's had some  soy milk and juice to drink but hasn't been in the mood to eat which is normal.  We'll hope for more interest in eating tomorrow if not later today.  

This is the point that I personally have been dreading in all of this - the recovery that is painful and uncomfortable to him but that we can't fix or give him an explanation for that he will understand.  He's been upset quite a bit but we've done our best to soothe  him and reassure that that we are there.  We are hoping that each day will get easier from here.  And honestly today hasn't been as bad as I feared. He's been quite the trooper and even though he clearly can't understand what's happening, he's done very well and from a medical standpoint is doing great.  He got his arterial line out which is good and they removed his foley catheter so we are hoping that some of these baby steps foward will make him a little bit more comfortable.  He has a little bit of a fever off and on which is normal at this point and he is on antibiotics to help clear up the bacteria in his lungs.  He has sounded much better today though, like some of that is  breaking up. 

One highlight of the day was him being able to move from his bed to sit with Gary for a little while during which my dad "Papa" held the tablet so he could watch some of "cars". That was good but the moving back and forth is tough on him.  This is the beginning of the long recovery road and where we hope the determination of a willful 2 year old will be extremely beneficial.

Breathing Tube Out

Landon continues to do well and he reached the big milestone we were hoping for - he ditched his breathing tube ( the fancy medical term is "extubated")!  Yay! He got it out a few hours ago and has responded well to being off it. Removing it was no fun and since then he has been somewhat fussy since he seems to be coming out of the "haze" of anesthesia.  So his being upset comes more from confusion and irrationality than pain (from what we've been told).  They are staying on top of his pain meds and have already pulled off a few which he seems to be tolerating well.

We moved him around a little while ago and got him repositioned to be a little  more comfortable and I told him he was getting a "big boy pillow" even though he was still out of it.  Then, he woke up a little bit and we gave him some juice and kept saying something but we weren't sure what. Then we realized he was saying "big boy pillow".  Anything "big boy" is a huge deal to him since he moved to his big boy bed at home so it's funny that stuck with him long enough that it was the first thing he said to us.  It's nice to hear his voice again even though we just heard it this morning and even though it was just those few words.  Landon is sleeping again now off and on and we are hoping he will rest well tonight since the breathing tube won't be agitating him. Every time we offer him fluids he wants to gulp them down like crazy but we have been trying to ration them to make sure his stomach will tolerate them OK. He's been drinking fluids for a few hours though and no issues though so hopefully in the morning he can move up from clear liquids.

It has been a textbook day in a great way!  We pray it will continue to stay that way and that his recovery will progress just as it should. Thanks for enduring the million updates today and for your prayers!  We know we have all been prayed for because the day has just gone so smoothly.  More updates tomorrow!

Post Op

We are with Landon now, we got to come back about two hours ago.  He's doing well, still pretty zonked out but will blink open his eyes for a second every once in a while.  They want to pull him off the respirator soon but are not ready to quite yet because there has been some "junk" in his lungs (which is to be expected following surgery but also a little bit worse from his sickness).  They also found a little bit of bacteria when they cultured the junk so they will treat him with an antibiotic to help him get rid of that.  So that's not great news but at least they can do something about it. 

All of his vitals look good-SATs are around 90 which is pretty much the highest he's ever been!  We'll wait for a few days to see where they stabilize at.  He's breathing "over" the ventilator meaning he's initiating most of the breaths on his own.  So we hope to be off of it by the end of the day but we'll just see how things go. That will be the biggest step forward he'll take today. 

It's funny that with all the stuff coming in and out of him my first thought is "he looks good".  I guess I always expect him to look completely unrecognizable.  Needless to say there will not be pictures of him until further down the recovery road.

Finishing Up

The surgery itself is complete. Landon is off the heart-lung machine (was on it about 2 1/2 hours) and they will be closing him up shortly.  Everything went well as far as we know and they have done an echocardiagram to check his heart function and the new Fontan circulation which looks good. We expect to speak with the surgeon in an hour or so and will get a better idea of how everything went from his perspective.  Then we will hopefully see Landon between 2:30 and 3 after they take him back and get him settled in the CICU (Cardiac Intensive Care Unit).  He will of course be out still and will look very different than the last time we saw him so we will have to prepare for that.

No hiccups or surprises that we know of up to this point which is a huge praise. Thank you for your prayers!

Surgery Underway

Just got an update from Esther and she said they are just getting underway pretty much. It took a while for them to get through the scar tissue and the actual "Fontan"part will start in about half an hour.  Originally we had heard about 4 hours for surgery but right now (3 hours in) we have 2 1/2 to 3 hours left.  And probably at least another hour after that until we can go see him. So we have a long way ahead of us but it sounds like everything has gone ok so far so that is good news!

The time goes by slowly but as long as Landon is doing ok then we're ok.

Not much to report

We've heard from the nurse twice who has come to update us but not much news really.  First update was that they had all of his lines in for anesthesia (which is good news because the last 2 surgeries that had trouble getting lines in - doesn't sound like that was much of an issue this time).  The 2nd thing we heard was that they were starting on opening him up which will take a while because he's got scar tissue from previous surgeries.  That's all we know so far.

We'll try to keep the prayer requests on the side of the page updated throughout today and the next few weeks so they are current.

The Waiting Begins

Everything went as scheduled this morning and despite being woken up at 5:25 to drink some clear liquids as quick as we could get him to since we had to cut him off at 5:30am, Landon was bright eyed and bushy tailed!

We actually had 30 minutes less waiting time than from the cath since we only had to be here an hour and a half before surgery time instead of 2 hours for cath which was kind of nice.  Less time for Landon to pick up on the strangeness of the situation and less time for us to get anxious.  Plus they took him back on time instead of an hour late like the other day which made things a little bit easier.  He has gotten pretty comfortable with the stethoscope and will even hold it in place over his heart while the doctor or nurse listens.  The blood pressure cuff, however, is his sworn enemy so that should make things interesting over the next few days.

We talked to the normal round of people and let Landon watch some movies.  They gave him versed both today and Monday (a sedative) to help him calm down and go to sleep easy and both days it made him pretty loopy which was kind of funny.  He thought our "disguises" were funny again as we dressed to go back to the OR with him.  He went to sleep fine and we kissed him and left him in the capable hands of the CVOR doctors and nurses.

Now, we sit, wait and pray.  We expect to get updates about every hour or so so we'll keep posting as we get those.  Thank you for your continued prayers!

Fun day at the hospital

Since we decided to stay in Denver in between cath and surgery even though Landon didn't have any appointments today, we thought it would be nice to have some "fun" time at the hospital.  We pulled Landon all over the hospital in the wagon, rode the elevator to all 4 floors in the atrium to see the fun things at each one, played with toys and read books at the hospital library and had snack in front of the ball machine.  Landon loved sitting in front of it and watching it and saying hi to all of the other kids who came up to see it.  

After naptime at the hotel we watched part of a few movies and had chick fil a for dinner, a nice treat for his last pre surgery meal!  Tomorrow will look very different but it was fun to let Landon have a day to play before surgery.  We hope he'll remember the hospital as a fun place too when all is said and done.

Landon and daddy at the ball machine

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Reading books in the library

Looking down at lobby from the 4th floor

Out of the hospital

Landon was a little bit cranky when we went back to see him at about 4. He was clearly still drugged and not able to make much sense except to whine and be upset. He was like that for a while and they have him some pain medication which calmed him down and let him sleep while Gary held him.

The next few hours he woke up really thirsty and then fell back asleep a few times. Even when they discharged us and things were going pretty well he was still pretty out of it. We are just staying at the hotel across the street so it was a quick trip in the car and he's been snacking on some fruit and crackers at the hotel.

He's getting back to himself which is nice. It's weird to see him so loopy and out of it!  All in all everything went well today and he is getting to be back to himself. He is coughing a little more than usual but that's normal with anesthesia. We'll just have to make sure it gets better tomorrow.

Thanks again for your thoughts and prayers today!

Cath Complete and Go-Ahead for surgery

We just talked to the doctor who did the catheterization and also the surgeon to give the consent for surgery.

The cath looked good, pressures are as they should be and no collateral "vessels" that they had to deal with.  Overall very good news - it went pretty quickly! According to the monitor in the waiting room he is back in his room but no one has come to get us yet so they may not be ready for us.  If he's sleeping we'll let him sleep for a while before we go back.

The results came back for the viral culture and no viruses came up which is good news for surgery.  So we got a chance to talk to the surgeon about what they will do on Wednesday and ask questions and we are moving forward as planned. So surgery is scheduled for 7:30am with a 6am check in to the hospital.  It will be an early morning for all of  us!

Will post another update after we get to see him.

Cath Day

Well, things are going as scheduled today.  Despite the fact that he can't seem to kick this runny nose and mild cough, the doctors don't feel that would be a hinderance today or a major risk for him.  Cath was scheduled for 12pm so he had to go all morning without any food and only clear liquids until 10am (nothing after that).  We were kind of dreading this because being 2 he can't understand why he can't eat.  He did suprisingly well with this though.  We kept him well supplied with apple juice this morning and he only asked to eat once because of all the distractions we supplied and unusual things going on.

He had to get an xray when we got to the hospital as part of pre-op stuff which he did not love. He was a little cranky here and there throughout the morning as he had to get blood pressure taken, nose swabbed (they want to get a viral culture before surgery on Wednesday), and probably 7-8 people wanting to listen to his heart and lungs but was overall friendly and agreeable.

He went back around 1pm (a little later than we expected) and we got to go with him at least until he was "brain asleep".  He was still moving some but it's just a reaction to the anesthesia and not any indicator he was still awake.  

I told Gary he must be really confused, being in this weird place in a weird bed and we let him watch as movies at he wanted today and Gary and I dressed up in the funny blue suits to go back with him.  Despite the odd circumstances though He did very well.  Depending on what they do during the cath (there could be "extra" vessels that have developed in his heart that they would essentially block up) it could take 45 minutes- 3 hours. Afterwards he'll have to lie flat for 2-4 hours also so we probably won't go back until he starts to wake up from anesthesia. The longer he sleeps during that mandatory lay flat time the better and we don't want to do anything to wake him up as long as he's sleeping peacfully.  

It's unlikely he'll be admitted after the Cath but it's possible.  Either way, we are planning to stay up here tonight and tomorrow night since surgery is early on Wednesday.  The plan is to move forward with surgery but we'll see what the results of the viral culture end up being and how he responds to the anesthesia today.  Then we'll see what the anesthesiologist and surgeon think.   They said today would be a good "trial run" to make sure he will tolerate surgery well. 

2:19pm We just got an update that things are going well so far and that he is doing good.  It sounds like they will be done soon but they still have to do an echocardiagram and draw pre-op labs.  These things will be much easier with him being asleep than him being awake.

We'll post more as we hear more later.  

Gary and I in our disguises". Landon thought they were funny.

Daddy and Landon in his special shirt

Playing with cars while waiting on xray

Summer 2013 Pictures

We are way behind on posting pics from the summer and Landon's birthday!  I kept having techincal issues with Blogger and gave up but it seems like this time the pics are loading.  Here are some from our summer vacation to North Carolina.  We stayed in the mountains for a week with my (Allison's) immediate family at the end of July and then I went back to Raleigh with Landon for a few days to see some more family.  Birthday photos and new family pics to come soon!

 

 

At Lake Junaluska

 

 

We went to see the train - Landon loved it!!

 

Had a great time catching up with Tess and Kyle and their family!

 

Celebrating Mom's birthday 

 

Landon and Grandmama

 

Fun at Pullen Park!

 

Mommy, can I have all of the donuts?

 

Already Mr. Tech Saavy

 

Tickles with Aunt Jenny