September 11, 2010 - 18 months old

Caden loves the slide......

Grandma and Grandpa Monroe with Caden at a local festival

1st Merry-go-round ride


Grandma and Grandpa Monroe

Caden is doing good. Still fighting a cold that seems to last forever, but all in all, he is good. A few weeks ago he got really sick and his oxygen sats dropped and stayed consistently in the low 70’s. After going to our pediatrician and them following up with Children’s Hospital they decided to put him on nebulizer steroids to help him breath (for his lungs) as well as a steroid (prednisolone –sp?) for his throat to open the airway. Breathing is really hard for him when he is sick especially because of the damaged vocal cord so this medication helps to reduce some of the inflammation thus making his little body not work so hard. It seems to help, and thankfully kept us from making another trip to CHW.

Caden has slowly adjusted to Daycare (after about 4 weeks). Goddard School has a great program, they keep the kids on a great routine, and have lots of fun and creative things for them to do. Usually when I pick him up after work it is their free time to play outside. I must say I was pretty sad and upset when I would peek out the window of his classroom to see him outside, by himself, not playing with any of the other kids and sitting or walking along the fence by himself. My heart just broke! I can finally say he has now “adjusted” and is now playing, giggling, and interacting with the others. Ahhhhh…….a sigh of relief. I have also noticed in the last few days when I drop him off he no longer cries. He walks right over to the other kids and toys and starts playing……oh what a difference a few weeks can make. The only thing I wish he did better now is EAT. I really thought he would learn to eat other foods by watching the other kids, but it’s just not the case so far. Almost everyday I look at his report sheet to read that he ate nothing for lunch, maybe the milk or the fruit but that is it. I get frustrated, but then I remember a lot of these HLHS kids are still on G-tubes and do have feeing issues so perhaps instead of being frustrated I should be thankful at least he does eat something.

We also are still taking him to speech therapy once a week. I really haven’t noticed too much of a difference he only says about 3 words Mamma, dada, and baby consistently. He is however signing a little (about 3 signs – more, cheese, and milk). Hopefully he will pick up more of our signs so it makes him less frustrated when he is trying to communicate. Thanks Tricia for giving me some sign language materials to use with him. We really appreciate it!

As for the rest of us, we are doing good. After fighting some sickness ourselves (David and I ) and myself having to go the ER and be admitted overnight for some shortness of breath, cramping, fever and pain that radiated down my right arm, we are doing fine. Baby seems to be doing great, growing, and now (beside a few weeks ago) my pregnancy has been uneventful (which is good).

My parents made the trip up over Labor Day Weekend to spend time with us and it was so great to hang out, go shopping, go to a local festival, and get some things done around the house. Thanks mom and dad for everything!

Love to you -
Melissa

June 11, 2010 - Collaterals or something else?

Hi. I wanted to write so that friends and family could stay updated. Although David understands this much more to explain but after he took yesterday off work he is playing catch-up back at work so I'll try to do my best.

We headed back up to Milwaukee, Wisconsin from Illinois to follow-up on what was discouraging oxygen saturation levels (76%) from a hypoplastic clinic appointment we had just two days ago on Monday. Hoping it was just a "bad" day and the saturations would be higher today. Unfortunately, not the case. Caden's oxygen saturations are still currently lower hovering around 76-78%. They used to be around 82-84% which was normal for Caden and his HLHS condition. Dr. Kovach and Dr. P.Frommelt ordered chest x-rays, and blood draws (oh..not so fun in conjunction with a missed nap!!!).

Some possible explanations for the lower sats were:

1) Collateral veins are forming (These extra veins can grow. It is the bloods way of finding a way to relieve the extra pressure in the circulatory system by creating its own pathway directly back to the heart). Since it is the "return" blood it is deoxygenated going directly back to the heart (bypassing the pulmanary artery which takes blood to the lungs to be oxegynated)this may "likely" be the reason for the lower sat levels. The intervention for this would mean a trip to the catherization lab for Caden where they would insert little metal coils which would act as plugs over the collaterals thus eliminating the new pathways created by the body and increasing the saturation levels again. This intervention will buy us time until Caden receives the Fontan operation.

2) There was a little spot on the chest x-ray they want to monitor. Although his chest x-ray looked better than one previously on record.

3) His paralyzed vocal cord from the Norwood operation (1st surgery) is causing Caden's stridor (noise during inhalation) possibly this is working his system to decrease his sats.

4) He is just starting to outgrow the "Glenn" heart procedure (2nd surgery).


Late last night Dr.Kovach called us to confirm his blood work and everything looked great so what does this mean? We wait. We are heading back in about a month to check sats again and see if anything else has changed. If it is indeed the collateral veins forming his sats will slowly continue to drop. After the sats get down below 74% interventions need to happen (which isn't that far away for Caden) otherwise your at risk for lesions forming on the brain which can cause brain damage. These collaterals (according to the cardiologists) can be common in HLHS kiddos post Glenn surgery because of pressures in the body (although not a good thing). We are aware too that these collaterals are a cause for some of the CHD kids to go into heart failure, or need an early Fontan (3rd heart surgery). We are not to this point, but are scared nonetheless. The good news is Caden looks great. He isn't blue, has a great pink tone to his skin/nails and is still eating great. He is just more fatigued and sleeps more.

David asked if we should get a pulse ox machine (like we had when we first came home to measure his O2 levels) but the cardiologist said we would drive ourselves nuts and become obsessesd over it so he told us just to wait till our next appointment to check the sats. David and I know if the sats go too low he will get gray/blue cast to his skin, lips and nails so we will use that as our basis for the time being.

So we wait......and pray that in a month the sats are higher so nothing has to be done!


Although it was a very long 3+ hour appointment with the other testing Caden did great and crashed once he hit his carseat. We headed over to the Ronald McDonald Home across the street to drop off more pop tabs (thanks again for all who save for us). We had 2 boxes and lots and lots of baggies of tabs. We of course then got a chance to talk with Marilyn (the house director)which is always great then headed back home.

I wish I could say Caden could catch a break.....but we have a regularly scheduled 15 mo. check-up today in Crystal Lake, IL (his pediatrician) for shots. Three doctors in this week alone.....poor little man! Tommorrow is a new day. Thanks for all your love, support and prayers. God is good.

Love,
Melissa

Feb 28, 2010 - Happy and Sad

Hi! I’ve got some happy and sad news. No, nothing is wrong with Caden. My good friend Dana who has been watching Caden while I’ve been back to work is moving to Arkansas. I’m soooo very sad not only to be losing a great friend, but because she is so good with Caden. Her husband Chris got a job promotion (Congrats Chris!!). As sad as I am, I am also very happy for their family for all the new beginnings in a much warmer state (and just when Dana was learning to use the snow blower - ha). I’m not sure she will ever know how grateful I am for her. I love you Dana!

When you are in the midst of making lots of decisions it is so hard to wrap your head around how everything is going to work out, but God always has a magical way of creating everything we need just at the right time for us. I just have to remember God’s time, not mine. That brings me my happy news. After almost a year on the market my townhome (that I had prior to getting married) finally got rented. What a huge financial burden that was lifted (at least for a year). My hopes obviously was to sell it, but given the economy and how long it had sat empty with no bites for buyers or renters I’m happy the right family came along to now call it there home. Thanks for all the prayers…once again they were answered!!

Now, more importantly, how is Caden. Well, Caden is doing FANTASTIC!!! It’s so great to type those words. He is eating great, sleeping great, is pulling himself up onto everything, loves trying to climb up the stairs, pulls all the pots and pans out of the cabinets, and loves to giggle. He has mastered saying Da-dah, still working on ma-ma. Although we are still unsure of his vocal cord damage from his first surgery, it sounds as though the vocal cord has healed because his voice is nice and loud 

Again, thanks for all your prayers and support. We are heading up to Milwaukee twice in March and we will be dropping off more pop-tabs. If you have any and are planning on seeing either David or myself we will gladly take them. The Ronald McDonald Home will always have a special place in our heart! Speaking of RMH…..if you would like to see a picture of Caden and I we are on their website just click on events and you will see us in the top corner.

www.rmhcmilwaukee.com

Love,
Melissa

May 30, 2009 - Scare.

A picture of Caden's chest X-ray. You can see the wire sutures that closed his chest back together along with other pacer wires which are placed in case Caden's heart rhythm becomes abnormal.

Caden Marshall 2 hours post surgery on 5-29-09
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It’s not even 3:00 pm and David and I feel like it’s midnight. We have just experienced what no parent should EVER have to see or go through. A code. Not once, but twice. Caden seemed to be doing fine this morning, the morphine that was used to take the edge off his pain was wearing off. Caden seemed a bit “goopy” sounding in his throat (so they deep suctioned him to get any goop out of his airway) and administered his regularaly scheduled dose of morphine. Within ten minutes we noticed his oxygen saturations sharply dropped to 50, then 40, then to 28. The normal rebound didn’t occur, then he quit breathing. His face and arms were blue. I pushed the code button on the wall and in swarmed 15 doctors within seconds. David and I sat speechless in the corner as we listened and watched what was the longest 8 minutes of our life. After another 20 minutes, Caden coded again. We know we are in a critical stage now, and there is a reason we are here in the ICU, but the fear of witnessing such an event is horrifying. Doctors believe his paralyzed vocal cord (which was injured in the Norwood surgery) along with his normal functioning vocal cord went into spasms immediately cutting off all air supply. We can't help but sit and stare at the monitors but we know God is in control and is watching over our son even in difficult times like these.

Love -

Melissa and David