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1/27/2015

Well this is a blog I didn't think I would be writing at this point (and it's long, sorry), but Andrew is looking so much better now...because he is so much better now! Cardiology and the transplant coordinator wanted to stop by and talk to me today about Andrew's mystery echo he had 2 days ago that we couldn't get anyone to tell us about.

Andrew's heart has significantly improved...meaning improved so much that they are moving him to status 7 on the transplant list, meaning he is currently temporarily inactive. They said they don't know why or how, but his heart is in better shape now then it was when they discharged us after surgery in December. They also said that his heart was functioning in two different rhythms in different parts then, and now it's synchronized and functioning all together (one rhythm). He has regained almost full motion in his right side (just a little slow on the hand grasping, but he's doing it and getting stronger every day since his stroke...5 days ago!!) Five days ago they didn't know if and when he would regain that strength back...

They didn't have many answers for why it's dramatically changed now, but God had different plans for Andrew…That's the only explanation. Medically, there isn't one. They're stumped. It was so poor before that he said it was doing nothing on it's own, no squeezing, and had no room to get worse. He just smiled and said this is very good for Andrew because a transplant for him is very high risk at this time and we want to keep his own heart as long as we can, get him HOME, and get him stronger! Yes, HOME!! What seemed so distant before, is now possibly in the next few weeks!! God is good, and only God could give our sweet Andrew this miracle! He is not being set off radar, just status changed on the transplant list and if needed he would go right back on to critical and right back where he was with the time he waited already.

His guess today was the common cold and tummy virus really hit his heart and that's all he could come up with. They've not seen it where they bounce back so quickly like that often, if ever before. Today I have to report that he absolutely melted my heart and I probably had the biggest smile on my face but he was happily playing and smiling at me and his nurses. He was talking to us again and sticking out his tongue. My sweet Andrew was back, limb strength and all.

I walked away crying and felt God's love so deep in my heart that it was almost overwhelming. Saturday night after I watched seizure episode after seizure type episode I begged God to take them from my son. It was crushing my heart. I never know what God has laid out in the future for us… I do know that His will, will always be done either way regardless. No matter what I want in this lifetime. So I continued in fervent prayer and I know that so many others have covered my sweet boy in prayer too. I just wasn’t ready for the outlook we were facing…

2 days later he had the new echo done....2 days after that here I sit writing that they can't figure out how his heart improved so quickly and so much....but I know that it's because we still serve a merciful and loving God. His heart is not healed 100%, but it is healed enough that it will buy him some time until transplant or his next major surgery. It is healed enough that we can possibly be going home under one roof again in a few weeks with all of our children and this nightmare be a thing of the past for a while.

Andrew is not out in the clear right now. He will always stay "listed" and the notes for "Severe heart failure" for all of this are there, so he would be closely monitored if they get him off the milrinone and doing well enough to go home. Even then he would be monitored closely at home. The plan for now is to get him up to full feeds and tolerating those this week and Monday regrouping and seeing where he's at and then hopefully trying to wean milrinone to off and him maintaining this level of function to get home. If he cannot tolerate it then he would go right back on the active critical status and continue waiting because he would be listed as medication dependent to live. Either way we still have a very long journey ahead of us, and transplant somewhere in his future. It's just hopefully being deferred a little while longer. Andrew had 2 major surgeries in one in December and needs the time to gain strength and size back. His stroke he's had would also make it very high risk to experience a worse stroke on bypass in surgery if he got his heart this soon too. Blessings all around, and can't thank you all enough for your prayers. God can still step in if He has another plan in life for you, no matter what anyone else says. I’m thankful it wasn’t my son’s time yet…

Psalm 73:26

26 My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.

Andrew's verse ♡

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Andrew Had A Stroke :(

1/22/2015

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Andrew has been followed by Neurology in the CICU for several days now. He wore an EEG for 48 hours with no abnormal brainwaves. They gave him the all clear to move to stepdown yesterday. Once in his room he stayed fairly aggitated like he had been for a while now. The previous 3 days were a nightmare. he had been having episodes where he would stare off and apnea spells. he would hold his breath for a good 5-7 seconds then start irratic breathing after each episode. He was rushed to CICU and monitored closely and they weren't seeing any episodes. I went in and stood over him the next day and noticed the breathing spells again, but no stare this time. I brought it to their attention and all doctors laid eyes on him and saw it and called the neurologists in.

Once they got in they could see the screen by his bedside and it wasn't showing any abnormal activity. They ruled out seizures and took him off the EEG and got him moved over after a swallow study.

I woke up this morning, 22nd, and his nurse was doing her usual assessment at shift change and I stood by his bed and she noticed he wasn't moving his right leg or arm at all. My heart dropped. :( I had a weird feeling all night and stood over his bed praying over him off and on all night. Now I really knew something wasn't right. He was kicking like crazy with the left leg and swinging that left arm, but nothing on the other side. The nurse kept picking up his leg and arm and they kept flopping right back down. I just wanted to cry, because my poor baby boy has been through enough, and at this point...we have too! I just want to take it all away from him. Breaks my momma heart. :(

He was rushed down to CT and they took his second scan in the past few days and this time a small clot showed up in the left side of his brain.

In morning rounds they dropped the dreaded word on me and it hit like a ton of bricks..."stroke". I'm thinking, hasn't he been through enough already?! Of course nothing an upset mind and momma could fix, so I have looked for positives in his day today. For instance, his face doesn't seem to be affected. He was slowly starting to make movements with his right arm, and I have never been more excited in my life to see my sweet baby's arm move. I literally cried!

He will now see neurology, hematology, physical, occupational, and speech therapies, cardiology, and transplant team here. Whew! We will have PT and OT 5 days a week and hopefully get his right side stronger again. Just another set back, but he has proven at what a fighter he is!

He was also officially listed on the transplant list (UNOS) yesterday, so the nerve racking count down is on.

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Transplant

1/15/2015

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We have always had in the back of our minds that Andrew would need a transplant one day when he gets older...just no idea it would be so soon in his little life. In ways we were relieved because he only had a single ventricle and we knew it definitely wouldn't last forever...but once they sit down and start explaining all the risks and the rejection stage post transplant...it's a little scary. I let my mommy mode kick in and panicked of course, but I'm sure once all this fresh new information settles I will start to settle out again and God will always go before us as always. I know he has Andrew a match somewhere and the perfect one. We did find out he was AB blood type meaning he can accept almost any blood type from a heart. They have to get blood type, tissue type, location of child, amount of time child has waited, status of urgency, and size of child and a few other things will factor if it's a good heart and a good match for Andrew.

Wait time is unknown. It could be days, weeks, months. It has to be in a 1600 mile radius and 4 hour travel time window from CHOA. Once they get the call and Dr. Kanter evaluates and sees if he thinks it's a good match then he will have the surgical team (which he is a part of) fly out to wherever the heart is and remove it (fully disconnect it from the body) and bring it here, where Andrew will be prepped and waiting in the OR for transplant. He will go on tons of medications and anti-rejection meds immediately and will always have a very low and supressed immune system, so that his body will not try to reject the foreign organ.

There are risks such as rejection, sudden death, death on the surgery table from the heart rejecting immediately (less than 2% chance that will happen), and risks and side effects from the medications he will be put on which can also damage the liver and kidneys. Another risk is developing a type of cancer from the lymphnodes sending huge amounts of antibodies out in the body that doesn't need those and obviously infections that could potentially be fatal because he will have such a low immune system.

There are POSITIVES!! Unlike HLHS, Andrew will be able to experience for the first time in his life a fully healthy beating heart. He will feel good,he will have good oxygen levels at a normal 100%. He will also after his first year to five years have absolutely ZERO medical restrictions, so he can run, play, play sports, gym class etc. like any other normal child.

He absolutely CANNOT miss a dose of his medications and he will be on those for the rest of his life. If he misses a dose of his anti-rejection medicines then his body could start attacking the new heart immediately. He could be on anywhere from 8-15 medications post transplant and up to the first year. Eventually he will get down to maybe 4 or less, but for life.

This WILL NOT be Andrew's only heart transplant, hence the serious need for donations as quickly as possible before his first transplant and that this is a for life medical condition. He will outlive the life of his heart by age 15-18 and require a new heart as long as the new heart stays on track and at their average expectancy. He will be in the hospital way more than he is now and constantly having blood draws, biopsies, heart cath etc. to make sure his medicine levels are therapeutic and not damaging any of his other organs, but also high enough to do their job of suppressing his immune system.

Donations- The transplant social worker informed us that this is a very expensive surgery(ies), and medications are ridiculously expensive, and life long. Issues with insurance changes and drops are high concern for the transplant team and being able to continue clinic visits, treatment and potential transplants in the future etc. For Andrew all of his visits will be held in Atlanta. We do not have the option of a Dalton clinic anymore, so traveling expenses are going to get outrageous. The bigger worry is when they turn 18 and are no longer on insurance like they were growing up. We are going to actively list him on a foundations site called COTA where the transplant social worker said to raise absolutely as much money as possible before his transplant, and those organizations to help cover all these daunting costs and they will match what we raise. As transplants etc. are very expensive and lifelong then no set amount is there. He said the more the better, but after transplant they will no longer match that amount. He offered suggestions such as fundraisers, reaching out to the newspapers and news, and starting something like we have with the youcaring fundraiser site. Since we don't have a time frame before transplant is received, we are trying to move as quickly as possible to make sure Andrew will be covered financially, we will be here in Atlanta for some time.

There are several restrictions for Andrew, especially in the first year such as no pets, no dogs, no cats, no birds. Bird cages, litter boxes, dog wastes, etc. is something he cannot be around at all, nor sick animals. If anyone pets one of these animals they have to wash their hands before they touch him. He can't be out in public or crowded places. He will never be able to rake leaves, dig around in the garden, or cut grass etc. or have a bonfire, or any type of construction or remodeling cannot be done around him (also lifelong risks). All of these things can potentially house fungal infectious diseases and mold and bacterias and get into his lungs and kill him from his body's immune system being so low.

Everyone will have to: (lifelong risks)
*wash hands before touching him
*after gardening or touching plants and animals wash hands
*during flu season he cannot go out much at all
*avoid all cigarette smoke because the toxins in those can get in his lungs and make him very sick
*If any of us get sick we have to wear a mask and properly disinfect everything that could be or become contaminated
* His water has to be boiled or bottle water used
*no hot tubs
*no well water
*cuts or scrapes have to be cleaned and disinfected, especially fresh and salt water wounds immediately
*no raw, or unpasteurized foods and meats
no cold cuts, meat spreads, or smoked seafoods
We also have to avoid significant mosquito bites etc.
*His bottle and food cannot be prepared in a place where I am preparing a dinner where raw meats and uncleaned veggies etc. have been.

His labs and tests are being done now and we should have results back tomorrow for the transplant team evaluation and then they will regroup, discuss if this is best, get our consent and have him actively listed. After he is listed he will continue to receive care here until the match is found and transplant completed. Getting him to the transplant is main concern as his heart could get worse and require added medications to function and if that doesn't work he will be placed on ECMO. ECMO is life support that will pump his heart for him. After long periods of time on ECMO, or even shorter durations there is chances of severe bleeding, stroke, and loss of limbs on this machine and death. There is an 18% chance that he wont make it to transplant, but we know God already has everything in order for our son's new heart. We are believing!

This wait and new heart journey is going to be very stressful to say the least, but we are so overwhelmed by so many prayers and the words of encouragement we are receiving from everyone. After the transplant we will be kept around a while here in the transplant wing at the Ronald McDonald house to follow very closely with medication levels and to be sure the new heart isn't going to be rejected since we live so far away. Our families are working out bringing our daughters up on weekends to visit and trying to maintain as "normal" as possible of a life for them at home until we all return under one roof together.Thank you for all the prayers and support.<3

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How Andrew got so sick...

1/15/2015

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We have not really had the chance to update since our last blog back in September. LOTS of hospitalizations and procedures and his second open heart surgery in there. Flu season has been rough on our little buddy. He's had two emergency caths for narrowing of the aorta and then a stint in his shunt that was narrowing and rhinovirus. We came back December 8, 2014 for his second open heart procedure, the Glenn. We were finally discharged December 20th and life flighted back here January 9th. This hospital stay has changed our lives completely because what we thought was just the common tummy bug brought us into where we are. God's blessing in disguise.

January 8th, at our daughters 6th birthday party we saw that Andrew has started throwing up a lot more and started running a fever (101.2) Of course we called Sibley Heart Center and notified of more than two vomiting episodes and fever over 100.5. Since our youngest had a tummy bug they thought there was no need to come in and to call and update the next day, or go in to the pediatrician if it got worse. The next morning I woke up to Andrew crying constantly, modeled and labored breathing, and grey all over. His heart rate was 199+ and he was losing more fluids then I could keep in him. I ran him on enfalyte all night versus formula and held his lasix due to fluid loss. Little did I know this really maintained his little body enough to barely get him med flighted in and to CHOA. Shortly after arriving his body started shutting down on him because his heart was giving out. He was in severe heart failure and his kidney and liver was starting to shut down on him. He was intubated because he couldn't maintain oxygen levels and we waited several hours with a grim outlook that night upon arrival. Our little buddy pulled through and is now "stable" but has a very sick heart. There was so much damage to his heart that he is being evaluated and actively listed for transplant once the transplant team regroups in the next day or two. They told us his echo looked very bad from before and that there wasn't much room for his heart to get much worse. It was very enlarged and the muscle and tissues had grown to be really weak. His heart defect was the culprit. Him getting so sick was God getting our son here for doctors to realize his heart was giving out.

After running many tests they also found out he had rhinovirus, e Coli in his lungs, he was septic, and severely dehydrated with no reserves left. God performed a miracle and left Andrew here with us to tell his story and show that God still hears our prayers. He is almost over the illnesses we came in with almost a week ago. They said his lungs actually looked really really good in his x-ray this morning.