As much as we love being home.. it is emotionally difficult to have postponed the surgery. It is hard to imagine being 1 or 2 days Post op right now. It is not like we feel relief by being home.. (although Lucas seems much more relaxed) but instead it is just drawing out the worry. But, we are just trying to enjoy the next week because we will be there all too soon.

Lucas is doing better it seems. He still had a fever yesterday and was feeling "icky" as he puts it. Today, he seems to be doing better. With the amount of energy he has, you would never believe he needs major heart surgery in a few weeks. He is amazing.

It is also so scary to us that we were so close to sending our ill child into heart surgery.  Literally, four people had looked in his ears over the week when trying to assess his fever...and saw nothing.. granted they aren't usually the type of doctors to look in ears, but nonetheless. That is scary. It was the 5th doctor, a pediatrician who said his eardrum was pussy and really infected. Also, one of the post cath nurses accidentally documented his 102.1 fever as only a 101.2 fever.. doesn't seem like that big of a deal but it is because they aren't concerned about a 101 fever post cath,....all that considered...we almost missed a major ear infection that had he gone through the Fontan, chest opening, anesthesia, intubation, etc...in addition to fighting an infection could have been detrimental.

It also makes me have faith though, because on Wed night Peter and I were just praying and hoping that Lucas show us some sort of sign if his body wasn't ready for the surgery, because he literally was not complaining of any pain anywhere...the fever had been his only symptom. They were even going to take him if he just had a low grade fever on Thursday (again just thinking it was post cath) but (thankfully) it was over 101 in the pre-op area.. thank goodness. I say that only because Lucas usually doesn't run fevers in the morning when he is sick, but he indeed showed us that day that he wasn't quite ready.

We have about a week and a half at home. Again, lives in limbo, but thats ok. Just hoping that he heels completely. They think that he is not necessarily getting new infections each time, but because of his drainage issues his body never fully gets rid of the previous infection. So, we are on really strong antibiotics (again) and hopefully we can kick this thing.

Homeward

Headed home. Lucas was febrile again this morning. His CRP was really high indicating an inflammatory response to something. Normal is less than 1, Lucas was over 10.

The verdict is another ear infection. Unbelievable. Thankful to have caught it before surgery, but so sad to have to delay his surgery! On MORE antibiotics. I think this is his fifth course in about two months. Need Those tubes, but they're trying to wait till after his surgery:/

A lot of emotions right now. We are currently back on the schedule for April 13.

So, today we got the call that Lucas' case has been bumped to tomorrow. Sort of what we thought was going to happen but given what happened after the cath, we really wanted to wait until Friday to see what is going on and let him recover


The problem: Lucas did great last night, slept wonderfully and cute as a button. Ate a GREAT dinner last night also. When he woke up this morning he was chipper and back to himself..until about 8am when he started climbing. It was low 99's but we went ahead and gave him some Motrin. He was wonderful all day. We went to Half Moon Bay had a great family day, building sand castles, throwing sticks in the water, blowing bubbles, and relaxing. Wonderful! On the way home, Lucas' ears (aka his personal thermometer) started turning red. Finally by about 5ish his fever was a little over 101. Of course, this happened all after five.. how convenient. But after many phone calls..

The Plan:
1.) show up at the regular time of 6am

2.) don't give him any Motrin all night
3.) He will be assessed by anesthesia, cardiac team, etc..(and by us of course) to determine if there is a source of the fever or if we are still dealing with post cath fever.
4.) draw labs
5.) if labs look good and no source of fever identified...will go to surgery in the am.
6.) if not, if they think he is starting some virus we will head home to our sweet abode and reschedule for a few weeks.

The only thing is if there are no openings within 30 days we will have to re-do the cath. Lord help us. This is not an easy decision, and these are not decisions to be taken lightly.

Peter and I know that we want Lucas at top notch before going into surgery. We know that the Fontan is no easy recovery as the blood flow is completely re-routed and it is a different anatomy to get used to.

By the way, I am forever grateful for my calm, sensible husband because I am a hot mess right now. I am trying to not let Lucas see my fear and anxiety, but is is not easy. This is really hard for a family to go through and Peter is our rock right now that's for sure!!

Please pray for us and keep us and the doctors in your thoughts/prayers. We really have no idea what is going to happen tomorrow at 6am, but we do know that Lucas is strong, and we trust the team here at Stanford to make the right decisions.

 Love Love Love!

 Our brave strong boy!!!

 Lucas' number one fan.

 My world

 The sweetest little man, you can see the band-aid on his neck from one of the cath entry sites.

Looking at boats with daddy.

We love you more than life Lucas Peter, whatever the decision is tomorrow, we know it will be what is best for you and we will do whatever we need to to get you through this hurdle safely and healthily. 

What a long day....that actually started at 1215 am with Lucas falling out of bed. We heard a loud thump and look over to see his feet up in mid air and his head on the ground. He is used to sleeping with his bed against a wall with a guard rail on the other side. Well, the beds here aren't against a wall, and there are no guard rails..so we did what we could, but apparently it didn't work. He is a wild sleeper. We could never really get him back to sleep after that. He was so squirmy and could not settle. I think he finally fell back to sleep at 430am ish only to be awoken at six to head to the hospital.

We headed in, he did wonderful in the pre op area and they gave him a whopping dose of versed which had him so silly. He was just laughing. They let one of us go into the cath room with him until he was asleep. I am so grateful they let me do that because I felt better about telling him stories while he fell asleep. He said he remembers my funny hat. It is so hard to see your son on the table like that. I have been holding pretty strong, but that was hard. He is my little boy and the thought of all that he is going through right now is hard on both Peter and I.. as I am sure it is anyone who's child goes into surgery.

The procedure went well. They were very pleased with all of his numbers, he did not have to be intubated. I am honestly surprised after how sedated he was from just the versed. The did have to close up one collateral vessel. Collaterals are common in single ventricle kiddos. The body develops them in areas of high pressure in order to get blood supply around the area of pressure. So, they had to coil it off. We knew about this collateral before time because it was so big our cardiologist saw it several months ago on just a simple echo. So, I think the cath doctor said they put 8 coils in to occlude it. She made it sound like no biggie, but to me it sounds like a ton. The coils are made of some nickle product...he is now bionic:)

He was recovering so well after. Peter went back with him at first while Claire and I had lunch together, because we couldn't have Claire back there. He slept for a long time (remember all that versed) and then when he woke up he was pretty pleasant and in good spirits. I am learning things as I go along here on this journey. I requested a dose of Zofran prior to being taken back to the PACU so we could hopefully ward off the horrible nausea that he has had every time before with anesthesia. So, maybe that is why he wanted to drink and eat right away. He was perky and happy, then a few hours later came the sudden fever.

It seemed to happen over just about 30 mins. He went from happy and eating to lethargic, heavy/rapid breathing/and very sleepy (but remember the last nights sleep he had) So, they gave him a dose of Motrin and we covered him in cool towels and he zonked for a long while. He really needed to rest. He is so chatty with everyone, sometimes he just needs to close his eyes and relax.

So, the thoughts behind the fever were either he is getting an infection of some sort, his body was mounting a reaction to one of the coils, or he developed some sort of pneumonia. But, the chest x-ray was perfect. I asked about his labs and he had no white count, no neutrophil shift, even his inflammatory markers were fine. We requested them to look in his ears.. just to be safe, given our recent bout with ear infections. The doctor said his ears look good (thank goodness) but his throat is a little red. It could be just from being over tired and receiving so much medication, but we are going to keep watching it. If he does start to develop an illness the surgery will have to be postponed. :(So, we were sent back to the RMH to monitor him and keep him calm and see how he recovers. Still unsure exactly what the fever was all about.

No, the fever is not normal, but they didn't make it seem like it was super abnormal either after the coil placement. So, we will see how he does tonight. Really praying he gets a restful nights sleep and continues to improve tomorrow.

Recovering

Lucas is doing ok, he was doing phenomenal; eating and feeling much better, but he just spiked a 102 fever. Waiting to get another chest X-ray. They don't know if it could be a reaction to the dye or he is coming down with something:( he's napping now. Poor bubba needs to rest, we'll be here for at least another few hours to watch him and see what's going on.

Cath

Lucas is out of his Cath. All the numbers look good and he is recovering, well get to see him soon.

Pre Op Day

We arrived in Palo Alto last night. It feels like we were just here, even though it has been a few years. Walking into the hospital today brought back a myriad of emotions from all of his past hospitalizations. It was comforting to see some of the same staff working and roaming the halls.

Today was day one of trying to juggle both kids while attempting to have a smooth day at the hospital. Claire is pretty easy going, but she IS only one. And she does want to stretch her little wings, which is a bit difficult when you are trying to run through talking with the anesthesia team, cath team, etc. We worked it out though..with the help of lots of snacks. Although, her nap(s) were sacrificed, and she only got in about 10 mins of sleep all day. Poor thing. Hopefully we'll have a bit better luck getting her "back in a routine" tomorrow. Or as much of a routine as you can living out of suitcases and the car.

Lucas was a very brave boy. He was such a sweet heart to all of the nurses, doctors, and other staff. He just kept telling them all how he really wants a "fire truck birthday party." He was VERY happy when we arrived last night and the Palo Alto fire department just happened to be serving dinner to the families. He loved perusing the truck and all of the fire gadgets.

I am not sure if it is traveling, the upcoming surgery, the cool "hotel" as he calls it, or finally getting out of our house after being cooped up for several weeks, but he is majorly amped up. It has taken a very long time to get him to bed the last couple nights and he runs and runs all day long. This kid has so much energy and his sats were only 82 this am. Love his tenacity! He is going to do great.

Tomorrow is the cath. Bright and early we check in. Should take a few hours to get it done and then he has to lay flat for 4-5 hours.. hence the reason we are proud new ipad owners. Lots of movies and games to keep this little guy occupied.

I will update as I can. Praying for good results.. and a better day juggling two kidlets.

Housing

We found out yesterday that we got into the Ronald McDonald House. Thank goodness, because we unsure where exactly we'd be staying until we got that news. So, that is definitely what we were praying for because we need to have access to a kitchen and such so we can feed Claire. And, it is a great place to stay.

We have had several people who have messaged, emailed, texted, etc. me to see where we are staying because they want to send Lucas a care package. Seriously, we are already overwhelmed by the number of people who reach out to Lucas and our family. Thank you, Lucas is definitely one loved little boy.

So, for all of you who have asked...I just called to confirm that Lucas can receive packages and mail at the Ronald McDonald House. Just make sure you put "Lucas Rietkerk" as the addressee.

The address is:
520 Sand Hill Road
Palo Alto, CA 94304

We are so thankful for all of our support. Lucas couldn't be in better spirits right now! We love our little guy, and know he is going to do great.

Getting Ready

We are slowly...dragging our feet....procrastinating....in denial....getting ready. As if you could ever really be ready for your son to have major heart surgery. But, we are keeping our chins up to the best of our abilities. It is so hard to prepare for your child to undergo something of this nature. We haven't fully talked to him about all of the details regarding the surgery, but he does know it is coming next week. He has stated very specifically who he wants to visit him.. ha. He just spouts off every person he knows. No pressure :)

I guess we have been focusing a bit too much on the presents.. (although I really have barely mentioned it other than to tell him that his sister really wants to get him a present for the hospital).. because he is VERY excited about getting presents. LOL. Seriously, yesterday he said..."mommy maybe you should have surgery too soon so you can get some presents too:" Oh dear, what have I done.

He is so happy and running around these past few weeks, it is a tough pill to swallow that is for sure, but I just have to think about how far we have come.

Here he is 2 days post-op from his first surgery, the BT shunt. My little love bug.

And here he is today. Full of life, love, and A LOT of spunk. He keeps us VERY busy. I just realized that I don't have many pictures of him in the last few weeks....and literally that is because he doesn't sit still long enough for me to take any.

We have a lot on our minds. I have never felt this unproductive and literally I think it is because my mind does not stop, we leave in just a few days and have so much to do. Luckily, my parents are going to come for a day this weekend to pick up our dog and watch the kids so we can pack and clean..seriously.. so thankful for our family.

Doctors visits.

So, I thought keeping the kids out of day care and us on 'lock down' would HOPEFULLY keep the kids well. That was not the case unfortunately. On Tuesday morning Lucas casually mentioned that his left ear hurt again, and by lunch time he was literally screaming in pain. I am so thankful he can express himself so well. I went and bought my own personal otoscope.. just happened to be on sale at walgreens..and from what I could see from our new fancy plastic otoscope sure enough his left ear was really swollen and red.

I took him in on Wed and sure enough he has another ear infection. It is obvious he has a drainage issue in his ears. He hasn't even been sick or congested at all, but still gets these infections. It had only been 10 days since the last time he was on antibiotic. He was put on Augmentin (eww) this time and we are praying for this not to set us back on his surgery date, should be ok. Our pediatrician pretty much said that he needs tubes, this is his last chance..any more infections and we head to an ENT.  I am fine with whatever he needs, I don't want him to have any long term hearing problems or constant popping in his ears (like his daddy has from numerous childhood ear infections). One of my brothers had Eustachian tubes for several years so apparently ear drainage problems run on both sides...So, if he needs them he needs them. But, I hope we don't have to cross that bridge for a while if ever...Other than the GI affects of this really strong antibiotic Lucas seems to be handling everything ok. We'll see how it goes.

Claire also had her 12 month check up. She is getting huge. 26lbs (97%) and 30inches (75%) and her head is 75 % also. She is doing great and we hope once she continues walking more and more...or maybe running... she will thin out a bit. Time will tell. She is obviously not a picky eater. She loves any and all vegetables and fruit...she even likes mushrooms. The only food she seems to be disgusted by is eggs.. and Lucas isn't a fan either..so I am not surprised.

Currently surgery is scheduled for March 30 with a cath date of March 27. I will be so happy when we are all home safe, healthy, and sound. The anticipation is a lot to deal with.

Claire is One

Our little Claire Bear turned one yesterday. I know it is cliche, but time is flying. This past year has flown by faster than any other. I can remember my labor and delivery like it was yesterday. Maybe because it was nearly a three day long process, it was simply unforgettable :). We could not imagine our life without Claire, it is really honestly hard to remember what life was like before her. Her smile lights up a room, and she is such a happy little gal. She is a great sport about dealing with her rough and tumble brother. She lights up our lives! 

 This past weekend we had a small lunch party for her at our house. We wanted to do more but we are just having to be careful of the number of people we are exposed to because of the looming surgery. So we kept is quaint, but it was sweet. We enjoyed celebrating. We had a pink party, I tried to make all of the food have some sort of pink to it. We had smoked salmon with paprika colored cream cheese and prosciutto and cheese for appetizers. Then we had tri-tip, ribs, broccoli salad with craisins, strawberries, red grapes, and bread...oh yea and amazing raspberry sherbert punch. I debated on dying the butter for the bread pink but I thought that might be a little odd.  I made strawberry cupcakes from scratch. I am proud of myself for that one, because I am usually a cake from a box kind of girl. Anyways we had a wonderful time..and I think Claire did too. 

Claire loves all of her new clothes and toys.

Testing out her new Olivia book...yep it's a keeper!

Love bug.

Grandma and Grandpa Rietkerk got her a new swing, of course Lucas had to try it out to make sure it was "safe" first, before Claire was able to use it.

I think she loves it!

Not quite sure what to think about people singing to her.

Mmmmm..

Really loving the strawberry cupcake.

Milk please...

Happy 1st Birthday sweet girl.

To say she is a blessing is an understatement. She is exactly perfect for our family in every way. She is mellow, happy, and hilarious. Her and I have a least one belly laugh together a day.  We are so thankful for Claire for all that she is!