There is no place like home

Landon was discharged today and is sleeping on the sofa with mommy as I write this.

He is doing well obviously, but just because we are home doesn't mean all is back to normal.  We will be meticulously handling him due to the incision, cleaning the incision, adding meds to the daily process and helping Landon's body adjust to the new blood flow, which can take up to a month.  He can experience headaches due to the new flow as well.

No need to stress over the new challenges.  We have our little boy home again and mostly happy.  Praise God.

Gary

A Full Dance Card

Landon had a busy day today! It started with a really nice feed followed by a lot of vomit. Yeah, not fun at 8am- for him or me (Allison). He is fine- he just got upset by the "bubble gum" flavored motrin I had to give him and worked himself into a frenzy. Why with all the medical advancements they can't make medicine taste like breastmilk for infants is beyond me. Obviously my 4 month old has no reason to prefer bubble gum flavor because he has no idea what bubble gum is. Anyway- all that aside- he got mad and threw up his meal and the med. Then we had to take him down for an xray which is also not fun. Hard table, cold room, restraining him with his arms above his head- he's not a fan. Then we got back upstairs and had to give him 5 meds (including the motrin he disposed of).

He had an echo, which luckily he slept through most of, and then he got his central line IV removed- great end result but not a fun process. All this was before 2pm and he finally conked out and took a 2 hour nap.

Overall he is still doing well and it still projected to go home tomorrow. His feeds took a dip today because of all the craziness and his blood pressure is still high (which he's on meds for) and his heart rate is still low. As far as I can tell they are still not worried about the low heart rate but it seems to still come up in rounds every day. We haven't heard how the echo came back yet but if that looks good then I'm sure the low heart rate won't be an issue for discharge.

No one said this would be easy

Last night at 4 a.m. Landon woke up in a lot of pain.  They gave him some vicodin and unfortunately he basically skipped a feeding because of the discomfort.  His heart rate has remained low which is expected but still concerning.

Times like this can be sobering reality checks of how much pain he is in.  I just want to bear all his pain, but I know I can't.  I know this is an integral part of his life story, but doesn't mean I have to like going through this.  We just have to trust God has control of this.  Just wish he was old enough to cognitively have a relationship with Christ to lean on. 

Allison and I have been a terrific team of support.  The smiles have helped.  Thankfully he has eaten much better following this surgery as compared to the last.  There are few things more frustrating than knowing your child wants to eat but can't for a myriad of reasons.

He continues to do well but the pain management can be difficult to gauge since he has limited ways of telling us until it hits him hard.

Gary

Moved out of CICU

Sorry for the lack of updates today!

It was been a good day for Landon! His eating yesterday was kind of off and on, but today he has picked up a lot more and is almost to where he was before surgery. He still has times of fussiness which may be a pain thing, so there are still a few different meds they will give him for pain, but he also has period of activity and happiness. We even saw a few smiles today, especially for Papa and Mimi, my (Allison's) parents!

His blood count was low today so he got some red blood cells and his heart rate is still pretty low, but they did another EKG and I think it came back ok but I haven't heard for sure yet. He got one of his IVs out today and hopefully will get the other one, a "central line" out tomorrow. At that point he will just be on the monitors and oxygen. There was a lot of chaos with some other kiddos in CICU today so it delayed us getting out of there but we made it to the floor (CPCU) at about 5pm. We get a room up here with a door we can close and we can turn off the lights and stuff which is really nice. In CICU we were lucky enough to have a private room, but it still has a glass door/wall out to the unit so you can only get it so dark even though the door blocks out most of the sound.

He had some fun playing with his toys today (we brought a lot because we wanted him to have some fun things to distract him from all the un-fun things!) We brought his mobile from home too and set it up on his crib which he has been enjoying tonight.

We've heard that it's possible we could go home Monday (!!!) but more likely Tuesday if things go well over the weekend. We had been told originally that he would be here 7-10 days after surgery but when we got up here for pre-op we heard 5-7 days so that's what we are hoping for for!

Resting peacefully

Like Gary said Landon has been sleeping a lot, which is good. Hopefully it will help him recover quickly. He has been upset some when he wakes up, sometimes because he's hungry, sometimes he's in pain, sometimes it's a combination or we're not really sure which it is so we treat him like it's both. We were told he'd be more fussy after this surgery than the last one because since his body is getting used to the new flow, there will be more pressure in his head for a little while and it might give him headaches. He's on tylenol and basically a "strong ibuprofen" right now with the occasional morphine as needed.

In rounds this morning they said he will come down some on his oxygen (down to a 1/2 liter per minute, he was on 1/4 at home so almost back to "normal".) We'd be thrilled if he could come off of it completely before going home but we won't hold our breath on that. He will likely get his chest tubes out later today or tomorrow morning, at which point he'd probably be moved from the CICU to the CPCU (Cardiac progressive care unit) which is a step down unit.

When he wakes up and is hungry he gets upset pretty quick but usually calms down some once he eats. We haven't picked him up to hold him yet, not because we can't, but when he wakes up so hungry it's just not worth the extra time (and potential discomfort for him) it takes to get him out of his bed and into our arms with all the wires and stuff. I'm sure we'll hold him soon, but right now we're content to just sit him up on bed and let him eat and then go back to sleep. He got his catheter out this morning so that is one less thing that is uncomfortable.

One possibly concern is that his heart rate has been on the low side and has had times where it takes dips down into the 80s (normal heart rate for him is 110-160). Apparently this is not uncommon for after this surgery, but they did an EKG just a little while ago to make sure everything was ok and we haven't heard a result from that yet. We're glad he's just sleeping away most of the time and getting some good rest!

Time to eat

Landon is doing really well so far.  It seems as though they are weening him off everything that was sustaining his high saturations.  He is receiving 1 liter of oxygen now, which is about a 1/3 of what he was receiving immediately following the surgery.

He ate well last night.  A total of 345 ml over 4 feeds.  Not quite his normal and the milk he was eating was not fortified, but still doing great.  He only has enough energy right now to eat and then he mostly just falls asleep. 

At the 4:30 a.m. feed he was just chilling before it.  Just looking around and didn't seem to be in much pain.  Good to see traces of our normal boy coming back so soon.  Today he is scheduled to get the rest of the tubes (drainage tubing) and catheter out.  I think most of the IVs will remain, but incredible progress considering last time.

Thanks for your continued support.  Great to see him acting like himself already.

Gary

Breathing on his own!

They took out the breathing tube a little while ago after Landon aced his breathing test.   He's done very well so far and is on more oxygen than he was at home but will hopefully be weaned down over the next few days. We are going to grab some dinner and right now, so we left him sleeping but hopefully we'll be able to feed him in a few hours.

It is early and lots of stuff could still come up but he is doing very well so far which is a huge encouragement to us! Praise God for taking care of our baby and getting him safely through surgery!  Thank you so much for your prayers, support and facebook shoutouts today!  I feel like the day wasn't as agonizing as I anticipated, maybe because we were too tired to be very upset but probably more because we were covered in prayer and we felt it!

Seeing our brave little guy

We are back with Landon now and he seems to be doing well. He is showing some signs of waking up (eyes open for short periods of time, limbs moving some) and seems to be on a lot fewer meds than last time. They are already letting him do a trial of breathing on his own because especially with this surgery they want to get him off the respirator as soon as possible.

So it's possible he'll be off it this afternoon or evening which would be really encouraging since at his last surgery he was on the respirator for like 3 days. Once he's off of that he can be held and start eating again. We've heard that with this surgery they usually come off of all the stuff a lot faster.

He seems to be pretty comfortable although he's still pretty sedated since he's on morphine for now. He's grimaced and looked unhappy a little bit but for the most part he just looks like he's sleeping peacefully.

Out of surgery

Landon is out of surgery and back in the CICU now. We should be able to go back and see him in 30-45 minutes after they get him settled and stable. It sounds like all went well with surgery. His lungs were a little bit "junky' according to the surgeon so hopefully that doesn't delay him coming off the respirator and recovering. He had just a little bit of remnant from his sickness which we knew, but they thought it would be better to proceed with surgery.

The hope is that he'll come off the respirator sometime today (which would mean we can hold him)

Surgery Update

We have gotten a couple of surgery updates so far from the nurse. Surgery is going well- Landon went under the anesthesia just fine. They had a little bit of trouble getting a line in for anesthesia but that happened on both the BT Shunt and the Cath. Baby blood vessels are TINY!

The surgeon has taken out the BT Shunt and Landon is on the heart/lung machine (cardiopulmonary bypass) while they finish the Glenn. We were told yesterday that it is actually a relatively quick procedure (the 3 hour surgery time includes a lot of before and after the glen). We were told they overshot the pulmonary artery a little bit and had to put in a goretex patch (that's right, the stuff in your boots that makes them waterproof) . This is not a huge surprise to us, we knew there would be some patching and that synthetic material was a possibility. The goretex patch is something he should be able to keep the rest of his life.

So all in all, nothing "exciting" but we like that! Give me a boring NON Grey's Anatomy or House surgery any day!! Things are going well and it sounds like pretty routine for the most part. Thanks for your prayers! We'll try to post again once he's out of surgery or if there is anything significant before then.

Taken back

They took him back about 25 minutes ago. He had a good morning and was happy and smiley for a bit and then took a nap with mommy for a few minutes before they came and got him. We should be updated several times during surgery. Gary and I are eating some breakfast now and then will head back up to the waiting room.

We got him up several times early this morning to get in his last chances to eat fortified breastmilk (6 hours before surgery), regular breastmilk (4 hours) and pedialyte (2 hours).  Kissing him goodbye was hard but was over quick so we didn't have much time to linger on sending him back.  Surgery is estimated to be 3-3 1/2 hours.

Pre-Op Finished

We just finished the Pre-Op and are done for the day.  Everything went well and all of our questions were answered.  Landon did great, though the blood drawing portion was less than enjoyable.  Tomorrow we arrive at the hospital for check-in at 6:30 a.m. MT and surgery is scheduled for 8:00 a.m. MT.

Thanks for the prayers.  All we do now is enjoy him the rest of day and count the hours and minutes.

Gary

Details of pre-op and surgery

We'll head up to Denver in just a few hours and will spend a good part of the day at the hospital although Landon will not be admitted yet.

Here are the appointments we'll have tomorrow:

Landon will have:
- bloodwork done (ouchie)
- a chest x ray
- an appointment in the cardiac clinic for a check up

Gary and I will meet with:
- a nurse from the surgical team
- the anesthesiologist
- the surgeon

We'll stay at a hotel near the hospital tomorrow night so we can be close by for the day of surgery. The Ronald McDonald house is great, but you can't call to get a room until the day you need it so you don't know in advance if you'll be able to get in. After tomorrow night Gary and I may stay in a sleep room in the hospital while Landon is in the CICU (Cardiac Intensive Care Unit).

A lot of people have asked exactly what the surgery (called the Glenn operation) does. Since the right side of his heart is underdeveloped, this surgery will start the process of rerouting his blood so that it bypasses that underdeveloped side and eventually doesn't use it at all. In a normal heart the blood comes into the right atrium from the body to be oxygenated and then flows to the right ventricle where it is then pumped to the lungs for oxygen. This surgery will take the blood from the upper half of his body and has the vessel (Superior Vena Cava) flow directly to his lungs through the pulmonary artery instead of going through his heart. The Fontan surgery that he will have in a few years completes this process by rerouting the blood from the lower half of his body. They will also remove the shunt that they put in during the last surgery.

If that doesn't makes sense, this website provides a good explanation about the type of heart defect he has and the series of surgeries to repair it (this will be stage 2). Since this set of 3 surgeries has only been around for 25-30 years, whether they are a life-long solution is yet to be determined. It's possible that one day Landon will need a heart transplant but hopefully by then there will be even more knowledge and medical advancements to work to his advantage.

We will post at least once more today after pre op and likely several times on surgery day so check back for updates!

Landon Home and Surgery Scheduled

We were discharged from the hospital on Monday after Dr Brames, Landon's cardiologist, took a look at him and did another echo on him. We were sent home with a nebulizer to do treatments a few times a day and he is still on oxygen. Since we got home he has gotten a lot better and has picked up on his eating some, although he's not quite where we'd like for him to be.

We scheduled surgery today for next Thursday, Jan 26 with preop the day before. We'll have several appointments on Wednesday and he'll get to stay with us overnight before surgery. My (Allison's) mom got in today to help out now and until we get home from the hospital so hopefully we can get stuff taken care of before we head up to Denver.

Thanks for your prayers and your support!

Not home yet

So we are in the hospital with landonone more night. He does not have rsv or the flu, probably some time of minor bronchial infection.  Everything looks good with him exceot he's not eating very well and his cardiologist thought it would be best for him to be here to just make sure he doesn't get dehydrated. They are doing more regular negulizer treatments to see if that helps his eating. Hopefully we'll be able to go home later today as long as nothing gets worse and landon picks up some on his eating.

Back in the hospital

So we went home last night thinking surgery would still be february 9th. We got a call last night though that after the cardiologist that did the catheterization got a chance to talk to the surgeon and our local cardiologist, they felt it would be best to move surgery up to next week. It won't be scheduleled until Monday but it would likely be Tuesday, Thursday or Friday.

So that was yesterday. . .today has been a little bit hectic. Landon has been fussier than usual, not eating very well and started having a wet cough. We called dr brames, our cardiologist in the springs and have talked to him several times today. He finally decided it would be best to see Landon so we met him at the hospital and that's where we are now.  So far the xray and ekg have come back ok and they are testing him for the flu and rsv (respiratory virus). They also did a nebulizer treatment to help his breathing which has a definite rattle to it.  Dr B said they'll probably keep him here 24 hours just to keep a close eye on him.

If he does end up having something infectious (which seems the likely culprit now), they would probably push back surgery until he's better unless the need for surgery became imminent. 

Heading Home!

Man, that was quick!  after being in the hospital for a month last time, leaving within 12 hours feels almost criminal!  Everything went really well today. They did find narrowing in his shunt but put him on some oxygen instead of moving up the surgery date. So as long as he continues to do well on the oxygen, his surgery will be feb 9th.

We have a little tank in a shoulder bag to take him home and they'll bring some tanks to the house later today.  He met all of the qualificatins to be able to go home early of interacting, eating, and peeing. We are grateful to head home so quick but it has been a long day for all of us! We were trying to get him to eat his differeny food options as late as he could so his tummy would feel full longer. Formula 6 hours before, breastmilk 4 hours and pedialyte 2 hours.  Since we had to be there at 6am with th procedure at 8, this led to getting up sveral times overnight and a very tired family! (Including landon). Thanks again for your praying and support today. 

Sleeping Peacefully

We got to come see him a while ago and he has been eating (starting with pedialyte to see how his tummy would tolerate it) and hanging out and then fell asleep.

The doctor showed us that there is considerable narrowing in his shunt (it was put in at 3.5 mm and is measuring 2.2 mm in places now) - he actually showed us a few of the pictures they took which are really interesting. We're not sure yet if his surgery date will be moved up- there are rumors that the surgeon said he would leave it scheduled for Feb 9th but we haven't heard that from him yet. As long as he eats well (which he has done already) and oxygen saturation levels look good we will go home today. During the cath they tested him on oxygen and his flow looked better with it so we will probably take him home on oxygen until the next surgery. He is still on it now at a little higher flow than we'll use at home but he is still coming out of anesthesia so this is expected. Overall we're all doing well- just tired!

Almost Done!

I just got an update that they just have a few more pictures to take and then they will be done with the cath. Landon has done really well and they haven't done any interventions (ballooning, stints, etc) so that is good news. We'll have to wait and see if what they found will affect his current sugery date at all. We're still expecting to stay overnight but it's possible he could go home today- we'll wait and see what they say.

Farewell Kisses

They took him back just a few minutes ago after we had a chance to kiss him good luck. He's been very happy this morning and all the nurses are raving about how cute he is. We tend to agree! They are supposed to update us every hour and he is scheduled for 3 hours but could easily be longer or shorter than that. Now we just wait! Thanks for your prayers!

Happy Boy in Pre-Op!

We're checked in and Landon is chilling in pre-op right now and just playing with some toys (no monitors yet!) We should talk to the cardiologist soon and he's still scheduled to start at 8.

Catheterization moved up

Landon's sats (blood oxygen saturations) have taken a little bit of a dip this week so we went it to the cardiologist yesterday for an echo. His sats were a little better but the echo showed some narrowing in the shunt that they put in during the first surgery. This narrowing restricts some of the blood flow to the shunt and his lungs which has caused his sats to go down.

They recommended getting the cath done this week if possible and denver children's was able to schedule him for Friday at 8am. We have to check in at the hospital at 6am so we'll stay up in denver tonight so we can be close by. He will probably be in the hospital overnight on Friday and then we should be home on Saturday. If you want to find out more about what a catheterization is, you can do so here. We'll post a few updates over the next few days so stay tuned for details.

Quick Update - Surgery Scheduled for February 9th

Landon is going to have his catheterization (basically an internal x-ray) on January 16th (an unpleasant procedure I am told) and his pre-op will be February 8th and surgery on February 9th.  It is nice knowing this, but scary to think how soon we will be sweating bullets all over again.

We are hopeful there will be less complications after the surgery this time and that he will recover faster.  We take nothing for granted though.  There is a chance he could be on oxygen following this procedure or he could be doing better than he is now.  The human body is very unpredictable.  These surgeries are an  inexact science at best .  Not to fault the process or doctors, but the heart at this age is very small.

Pray that we can have peace in the lead time and through the whole process again.  It will be harder this time even if it is easier for Landon.  We have grown quite fond of the little guy to say the least!  More to come in a post detailing the procedure and what it will mean for Landon's anticipated progress following it.

Gary