Pain

When Greg and I are busy, we do well. However the middle of the nights seem to get to us. Sleep is still not our friend. Last night I lay awake at 3am, tears pouring down my cheeks, just wanting to love on Ethan. These are selfish, yet justifiable feelings. I want him here for me. But he would be suffering if he were still here. I am just grateful the Lord answered my prayer. I offered to do WHATEVER it took if Ethan was meant to stay in this life and recieve a transplant. I then said that if his life were to be continual pain and suffering that I was at peace with him leaving this mortality. I simply asked not to have to make the decision! I asked if the second scenario was to be Ethan's, that he pass quickly and peacefully so that I would know it was Thy will. My chest burned during this prayer. I was scared. . . Which scenario was the Lord answering?
Less than 48 hours later I learned. Greg had just left for the night. Ethan was having a wonderful day. Something physical started causing him to have issues. He began retaining CO2 shortly after midnight. As they were adjusting his ventilator settings, his heart went into an arrythmia and he was soon gone. They worked on him for a few minutes as his heart rate was dropping. But our request was not to put him through a long full code if something like this were to arise. He had been through too much already, and he would not recieve a transplant if he had neuro damage. The doctor said a full, long code would not have made a difference. He made his quick, peaceful exit. A prayer was distinctly answered that night. And as my heart aches for Ethan, I have to remind myself of the tender mercies of the Lord, and be grateful he is no longer suffering. Now Greg and I must learn a new normal, a new way of going on in life. It is not easy. But time will heal.
Thanks for the continued love and support-
Heidi
PS: I will have the funeral pics soon and post them!

Ethan's Day

Although surreal, it was a wonderful day. We felt honored that so many loved ones came to share in this sacred occasion with us. I will write and post more soon.

Love-

Heidi

Funeral Plans

We have decided to hold a funeral service for Ethan the Brave. It will be Thursday, August 27th @ 10am. There will be a viewing beginning at 9am. It will be located at 7752 E. McDowell Rd, Mesa, AZ 85207. It is located on McDowell Rd, approximately 1 mile east of Power Rd.

Thank you so much for sharing his journey with us. We have read and re-read all of your kind comments. They make us feel so appreciative to know our son has touched the lives of many.

*We will be setting up a fund tomorrow in Ethan's name for those of you who have asked to be able to donate for Ethan, and the fight of congenital heart disease, in lieu of flowers.

Ethan's Has Returned Home

It is with great sorrow that I must announce that Ethan Greg Skidmore, aka: my hero, passed awayed at 1 am on August 21st. Ethan had a wonderful day and had made good progress. Daddy gave him his signature goodnight kiss at 11:30 pm. He was well and peaceful. Unfortunately after midnight his battered heart decided it could not go on. He is no longer suffering. We can't wait to be with him again, and we know we will. For now we have so much gratitude for his journey. We are better because of Ethan. He is the ultimate blessing along with our other 3 beautiful children. We are also grateful for the gospel of Jesus Christ and it teachings, especially at this time.
Thank you for ALL of your LOVE and SUPPORT-
Greg and Heidi

Spoke too soon

So I posted that Tuesday was uneventful. And it was, but by 1am Wednesday things had changed. They had increased his nisiritide for a second time and he wasn't having it. He vasodialted (blood was hanging out in his arms and legs more) thus his glenn circulation wasn't getting good enough blood flow. They did a blood gas and could tell he was in distress even though he wasn't showing it. He was just lethargic and not responding to their ususal torture tactics. They turned off the nisiritide and he began to turn around.

Greg and I both slept at home last night. Greg had left Ethan around 10pm and said he looked good (that was before they increased his med). So at 3am my phone rang. I flew up to answer it. And yes, I can't go to bed at my own home with out having my cell and home phone right next to me. It was a better conversation that it could have been. . . but it still started with "Heidi, this is Dr. Underwood. About 1am. . ." and she proceeds to tell the story. We talked for quite a while. She insisted I didn't need to come. I thought it would be better if I tried to get some more sleep and come in after I got my kids off. I was wrong. I couldn't sleep and I was anxious to get my kids off. And when I got here he was clinically fine, but still looked crappy. Plus they had to sedate him to do another new art line. So as you can guess. . . I had a breakdown.

The docs and nurses rallied around and apologized and said don't give up on Ethan (same pep talk my wonderful husband gives me when I am losing it) . He has been slowly but surely progresssing. They said that last nights event was completely their fault. They shouldn't have increased the nesiritide that much. They knew it could cause that effect. They said it was not a significant setback and he was looking really good (not). However, within a few hours he did start looking better and by this evening he was looking great. I sat and played with him and he interacted with me so well.

Ethan was grabbing at things, chewing on his thumb (he will for sure have his 2 bottom teeth before Friday), and back to giving dirty looks to the nurses every time they assess him and push on him. That's my boy! He is known for the dirty looks he gives them. He continues to show so much expression through those beautiful slate blue eyes of his. I love this little boy, I just have such a hard time watching him struggle. I can handle all the swelling and issues in the world if he is just interacting and acting "himself".
Love-
Heidi

6 Months Old!

Today there was not much action. That is a good thing for Ethan. Grandma was with him and then Dad! There is not much to report. He did get his new (larger sized) trache put in. So no more snoring and baby noises coming from Ethan. This is a good thing though. His air leak was so bad that his ventilator was ALWAYS alarming if his head wasn't in the best position. Even Ethan was getting irritated with the noise. The only real change is they decided to go up on his nesiritde drip to maximize heart & kidney function (aka make him pee more). He is peeing really well, but he needs an extra kick in the diaper. At the rate he is going he will still be puffy at his first birthday. . . Which reminds me. . . Happy 6 Months Old to Ethan!!! (hope the next 6 months go more in your favor son).
I had a good day playing mom at home. And even got out in the evening thx to some friends who came and took over for a few hours.
Thanks for the continued love and prayers-
Heidi

Monday

It was another good day for Ethan. Although he looks grumpy in this photo, he is not. He has been very comfortable and content today. I LOVED holding him, it has been 2 weeks ya know! His vital signs were very good today and he even looks a wee bit skinnier! Definately moving in the right direction. His fevers have been up and down though. . . Oh how I wish they would just go away! I am REALLY trying to get a better attitude and take it day by day. My husband is so much better at those things than me. Greg gave the kiddos back to school blessings Sunday morning and he gave me a blessing of comfort since I have been a wreck lately. I am very grateful for him and his quiet, confident faith. I am also very greatful for Ethan's progress. I am learning to love babysteps.

A Good Day

Ethan's vital signs were very good today. He is peeing well. And Daddy was able to hold him!

Waiting Game

As you can see Mickey and Goofy came by. Nothing to new to report otherwise. Ethan is still a sumo; slowly but surely peeing more. He has been on the carvedilol for 2 days now. They say it will take a good week on his new meds to be fully effective. They did an echo Friday afternoon to evaluate his heart. Not much has changed. His heart rate has slowed, so they were hoping the right ventricle would have more time to fill up. But it doesn't seem to be any different. Time will tell. Unfortunately the left ventricle is still collapsing in on the right ventricle. His fever has been low or absent the last two days which has been nice. I wish I had more exciting news to post. But the waiting game continues. In the mean time we are just loving him up as best we can with him being attached to too much stuff!
Love-
Heidi
PS: Its a good thing Mickey came by again. . . Last time he did Dad was in the dog house for not taking a picture!

Great Night

Ethan had a great night despite starting it off with a really high fever. He got off Dopamine and has now had one dose of carvedilol. He was peeing soooo good they had to stop his bumex drip! And he was negative last night which helped him weigh in a little lighter! Sweet. A lot of this progress is probably due to a new med they satrted yesterday called nesiritide. It helps adults with heart failure and kidney/peeing issues. They only use it in infants when they have to. It was started since it seemed to be taking so long to get off the dopamine. They wanted to try and help break the cycle. Looks like it worked. It bridged the gap to getting him on the carvedilol. Now I sit holding my breath waiting for the new drugs to work miracles! (except I have to wait from home for a day or two because I have a head cold/sore throat, yuk)

Unfortunately Ethan's initial antibody blood work (PRA)came back at 100%. That means is blood had a bad reaction to all the blood it was tested against. This means he has a high chance of rejecting a heart if he were to get a heart transplant. Yet, we kind of expected it to be high. It is common with heart babies who have had a lot of surgery and blood transfusions and there is a medical protocal to try and reduce it IF we needed too. Go Ethan. . . let the new meds work little buddy!

My "Little" Sumo

Ethan got his trache yesterday. It went well. It is nice to see his face, even though it is a sumo wrestler face. They already lowered his sedation a little hoping it will increase his blood pressures. . . then they can wean the dopamine a little. So far the theory is working, except he is a bit uncomfortable. They think they have not been able to wean the dopamine because his sedation and withdrawl meds have kept him too comfy and kept his blood pressure too low. I hope we can make headway on the dopamine. I was starting to feel discouraged. I really want to get him on the carvedilol (heart failure med) to see if it will help.

And even though I hate that he is a bit uncomfortable, he looks better on less sedation. He keeps looking at Greg or I, or his nurse, and telling us a sob story (babbling)! You can even hear him a little because the doctor put in a trache that is too small and air gets past the trache to his vocal chords. The docs on the unit are going to make the ENT come back and put in a bigger size. But for now we love the air leak!

We have had a range of emotions as we have begun to research our options (if it comes to transplant). We feel so bad that Ethan has been through soooo much already and yet we are back at the drawing board. They have begun running a few tests just in case it comes to transplant, they want to have everything ready to send out. The final item will just be another cath. But we are still hopeful the heart failure meds will break the cycle and we can put off transplant for awhile and get him home. We never thought we would hear the T word this early, however all HLHS babies will eventually have to have a transplant because eventually the "half a heart" gets worn out from doing ALL the work! So its not a completely new concept to us.

A wonderful nurse practitioner on the unit came in last week and told us she had a dream with Ethan in it. She said she has been doing this 15 years and has dreamed about procedures and mishaps, but never specifically about one of her patients. She said Ethan came to her in her dream and said he was going to get better. Of course I bawled like a baby! That it what I want as a mother. But my first question to her was, "Did he mention if it was going to be before or after transplant?"

He is a major fighter. But then there is a part of me that is more guarded, and as Greg calls pesimistic. I prefer to call it being a realist! I don't want to put him through anymore, and I wonder if all of this is worth it. We have decided to do as they have told us, and take it day by day. All I know is that it is nice having his sedation lowered. He is acting more like a baby. I do feel slightly guilty that I am getting joy from watching him suffer a little. I just love that he is looking to me for help, giving the pouty lip, and babbling. So cute.

No News

It has been a quiet weekend. A lot of Ethan's numbers have been good. The big hold up right now is his blood pressure being on the low side. Hopefully we will be able to get off the dopamine soon. He is still the size of house, but comfy. Comfy is all that matters! Right now we are taking it day by day. The only for sure plan is to trache him this week. They don't want to do too much, so they won't go to cardiac cath this week (unless we have to). Taking it slow and hoping his heart recovers. Just grateful his kidneys have. Now I just wish they could up his diuretics to make him less puffy. . . But they don't want to push it too soon.
LOL-
Heidi
PS: We are grateful to our dedicated nurses who love and cherish Ethan. We have been able to spend a lot of time with our other kiddos this weekend. Thanks!

Ethan the Brave

Someone who follows Ethan's blog came across this picture in a Friend Magazine. I absolutely love it!

Looking better

Ethan is doing well today. His kidney function numbers are back into a nice range and he is peeing a little better. He is still too puffy for my liking, but expected w/ the kidney situation. His signs of infection seem to be down and his fever has stayed below 101 for the last two days (but as I write this it seems to be climbing a little)! Ethan's BNP (heart failure test) has been hanging around 3,000. That is still too high, but better than 13,000. We still have not started the second heart med. The first criteria to start it has been met: kidneys look better. But he is still on dopamine. We have to get him off that before we start the carvedilol. So digoxin is the only heart med on board right now.

Many have commented that they are lost by my last few posts. Most of those are my carepage followers. Carepages has not been sending out email alerts for all of my updates. If you are lost on the blog, or the carepage, you need to read a previous post titled "Details (TMI)". That talks about where we stand with his heart failure situation and explains more about why he keeps going down hill every time we think he is getting better.

Much love-
Heidi

Bizarre

So Ethan is what one cardiologist likes to refer to as the most bizarre hypoplast left he has ever come across. And they wish they could find one similar to him in research, because then they would know what to do! Hmmmm- that makes me feel better:) I know what he means though. It was just funny to hear.

What we do know is we need to start some heart meds and get his right ventricle to be able to relax and open up more when it is filling with blood. So we are backing off on some of his lung meds and starting the heart meds: Digoxin and Carvedilol. Hopefully this cocktail will make his heart and BNP happy. We are going to tweak his antibiotics a little as well. Once we get his heart meds working and in a therapeutic range, then they will bring back the lung meds and diuretics and hopefully be able to find a happy balance. If we can find a happy balance then they want to do the heart cath on him. Dr. Cleveland said maybe we can even get him well enough to go home and thrive for awhile before we do the cath. He wants to get him in a good place so that when we do the cath we know if what we are doing is enough. If it isn't, then we can evaluate what the next step needs to be. More meds, a procedure, or transplant. But that is weeks out.

For now the focus is to get over infection, start heart meds, get kidneys recovered, and trache him. As mentioned they are also going to trache him (maybe next week). It will be much easier to manage him medically and get his lungs healthy. It will also be easier to hold him and do therapy with him so he can strenthen. Especially if we can't find that right balance for him soon and he ends up staying in the hospital for awhile. I have already asked the staff. . . they are not okay with me setting up a bouncy house outside his room for his first birthday party. . . so I said "then we better be home by then"!

Puffy

Ethan is doing very well right now. I wanted to post a picture I took of him last Saturday. He looks so good! When he gets so puffy it is nice to peak at pictures of what he really looks like. Well, his sats are in the 80's. They were last night too. However, this morning he had a bad reaction to a breathing mist they gave him through the ventilator (combined w/ low blood pressure) and his sats dropped into the 60's for awhile. Oh, how I hate the many days we have had looking at 60's! He did well in the OR. They got his central line in the first try (w/ a cut down of course) and were able to remove his old broviac. The broviac has to actually be cut out.

He is very puffy today. They took away the bumex (his heavy diuretic of choice) to give his kidneys a rest, so of course he is not peeing that great. The docs actually want him puffy right now. Something to do with the new heart meds they are going to start him on as soon as his kidney function looks better. His levels are slowly moving in the right direction. It was pretty cute, our nurse gave him a mohawk today. Combined with his new puffy physique, he looked quite like a little bruiser.

The best part of today is that he has been comfortable and sleeping. He is only on precedex and versed. Normally he is also on a ton of fentanyl to help sedate him. So far they have not had to give it too him. It is nice to see him resting and comfy. Alexa also spent the day with me at the hospital. So I guess that makes two things that were the best part of today! It was fun to be one on one and play games with her. She is such a fun girl.

It has been a good, but hard day today. The word has spread through the floor of Ethan's issues. They all love him around here so much. Many have given a hug or given me that sympathy look. And of course, every time I get that look tears fill my eyes. I long for Ethan to be comfortable, at home, enjoying life. I hope that is in the plan for him since no one has brought me the magic wand I have been requesting!

Good Night

Ethan had a good night. His heart rate is alot lower and he slept well. His fever was over 105 last night but is normal this morning. Tender mercies. I will update later. He is going to the OR to get new central lines today.
Love-
Heidi

Details (TMI)

Sometimes I forget I have a medical background when I post. I apologize, but I was not in the mood to go into details earlier. And after many calls of concern and love I would like to clarify that heart failure does NOT mean Ethan is at the end of his journey. It is just another (major) bump in the road. Ethan seems to be pretty stable now. His kidney function is not great and he has another infection. He did not tolerate the heavy hitter diuretics this time. So we need to give him a week before he goes to cardiac catheterization. Let his kidneys recover and get the infection over with. In the cath they inject dye that can harm the kidneys if they are already in a fragile state. So we won't rush to cath unless we need to. The cath will give us the direct pressures in his heart and lungs and tell us what is going on in there.

The current theory/worry is his left ventricle. As you know he does not have a left ventricular chamber, however, unlike most HLHS baby his left side is a big huge mass of muscle. They describe it like a tumor sitting there. Ethan's right ventricle is what does all the work. It is functioning well. The only problem is it appears to not be able to fill up with enough blood before it contracts to push the blood out. They think the blob of a left ventricle is getting in the way and not allowing it to relax and fill as much as it should.

I could go on for an hour explaining things. But most of it is still theoretical. One thing is for sure. He requires ABSURD amounts of diuretics to keep his heart and lungs functioning right. That means he has to be vascularly dry (or dehydrated)or his heart can't tolerate the new passive glenn flow. When he gets too much blood volume it appears his heart's blood flow backs up into his lungs. Causing his lungs to be wet! Since his thoracic surgery he has still battled wet lungs inside. If this theory proves to be true, then his right ventricle is under stress causing his BNP levels to rise. (By the way his BNP is 13,000 today). High BNP in your body tells your kidneys the heart is in trouble. The kidneys slow/shut down as a defense mechanism to protect the heart. Thus a vicious cylce of trying to keep Ethan vascularly dry so his heart can function properly. Because when his kidneys sense this hormone, they slow down and retain fluid. (I hope you can all understand this.)

Heart failure can be fixed with medications, procedures, and/or surgery much of the time. Sometimes it cannot, and a heart transplant is needed. We won't know more until after the cardiac cath. Once his infection looks better they are also going to trache him. It is much easier to put the ventilator on his trache every time his lungs get wet or sick than it is to intubate him. When he is intubated he is uncomfortable and has to be sedated and restrained, doesn't move around and only becomes more succeptable to infection. With the trach he is alert, moving, and can be playing when he has to be on the ventilator. So it won't be as hard on his body when he has setbacks. As mentioned weeks ago his lungs are also diseased at this point. Meaning they are consolidated from prolonged irritation. So it is going to take a long time of keeping him balanced to let his lungs heal.

The hardest part today has been the talks with our surgeon and one of our cardiologist. There are some medications we can try to trick his body from thinking it is in heart failure. Thus his kidneys will stop being so reactive and complicating his fluid balance. Those may totally help, or may only buy time. But if the true problem is the left ventricle mass, then they told us to prepare to decide if we are willing to try for a heart transplant. But right now we have to get his lungs healthier so he could even be considered for one (if it comes to that). The next couple of weeks will tell. One thing is for sure. The acute phase of this journey just got a lot longer. We appreciate all of your support and sacrifices on behalf of our family.

Much love-
Greg and Heidi
PS: Sorry if this is too much, but I know loving and curious minds want to know!

Heart Failure

Something appears to be compressing Ethan's right (and only) ventricle. He is not in a good place. When he gets more stable they want to go in and do another heart catheterization. His ventricle is pumping as well as it can, but cannot fill properly. They hope to find the cause. Hopefully it is something that can be fixed. And hopefully it doesn't require another open heart procedure.
I'll post more later.

Intubated

Ethan did not do well last night and was intubated at 7am this morning. I will update more after I talk to the docs when they get out of the conference.
Love-
Heidi

The Good, The Bad, & The Worried

The good news is Ethan's last blood gas was good. So we hope it stays there. Looks like he has avoided being intubated (for now). Other good news is that he had an echo today and his heart function looked good. Greg and I were glad to hear that, however we are sick to our stomachs over some other test results. They did a BNP to day. It detects a chemical your heart muscle produces when it is stressed and having heart failure. Under 100 is a good reading. Ethan's BNP was over 7,000. The doctors are a very confused by this. With that high of a number his echo should show signs of heart failure. And it doesn't. The good news is they can usually correct heart failure with meds. But it still has us worried to death. They will check it again tomorrow now that they have him on a med that should help it. The other bad new is he is still uncomfortable and having fevers between 102 and 104.8 degrees! Ugh! The roller coaster continues.

Tomorrow Ethan will be on of the main topics at their Tuesday morning conference. ALL OF THE DOCS and surgeons affiliated with this unit attend, put their heads together, and try to form a plan for their complicated patients. Lets just say Ethan has been the topic in way too many of these conferences!

Love-
Heidi

Hanging in

Back on high flow, breathing much easier. Blood gas still isn't that pretty but they feel it is not from respiratory anymore, more like they need to correct his electrolytes to rid the build up of bi carb in his blood. They are doing that now. He has been extremely fussy all morning and has had a temp of nearly 105. I will update later.
Love-
Heidi

Struggles

Ethan is struggling today. He started peeing less yesterday and it only got worse today. Plus his fevers have been high and his white blood cell count is up. He was not exchanging his oxygen and carbon dioxide well enough and was laboring very hard to breathe, so they put him on CPAP. That is the annoying head contraption that shoots air up his nose in an annoying rythm. It is probably due to his lungs being wet now that he is retaining fluid and not peeing. And as always, he hates it. So they have had to restrain him.

This all started when they tried weaning his diuretics from a constant IV drip to doses given 3 times a day. Apparently his kidneys did not like the change. He is back on all the big guns via IV again. We just pray he will not have to get reintubated tonight or tomorrow. I don't know if Greg's and my heart can take that. His little body is so fragile and weeks of unknown fevers is not helping!

Thanks for all the love and prayers-
Heidi

Unique

Ethan is doing well except his fevers seem to be back! He had one a day after the 24 hour period of not having one. But since midnight he has had one 3 times so far. He looks so good. I just want everything to be better so we can come home. He is also continuing to struggle with coughing/clearing his throat. But it is getting better everyday. I just sit there all day doing little coughs for him. You know when you hear somebody that needs to cough you can't help but cough for them.

I was looking at Ethan today and his beautiful eyes and eyelashes and I couldn't help but think, "Who does this kid look like?" He definately has some recongnizable feautres, but he doesn't look like my other babies! He is unique in more ways than one.