Friday, July 31, 2009

Quiet Progression

Today continues to be another good day. They are continuing to wean his medications and high flow down. He is still very sleepy and has a very high heart rate, but everthing else is great! We continue to hold our breath as each day passes with no significant setbacks.
Thanks for your love and support-
Greg & Heidi

Thursday, July 30, 2009

Pictures of the Week






Sorry, just had to post a few pictures. My older two kiddos are in Texas visiting their cousins. They were so excited, they got to fly there and everything! Thanks Lance and Aimee.

The other ones are of Cannon's day at the hospital. He loved being with Ethan and playing doctor. However, he was getting a little to confident by the end of the day and getting into things he shouldn't! But come on, what 3 year old would not try to have a hay day with all the stuff in Ethan's room!

Ethan is continuing to have good days. He is still quite sleepy. But he needs it. Physical therapy started coming in and working with him today. It was fun but overwhelming at the same time. He is so weak, but it will get better. The doctor today said "Everyday I just keep peeking in his room expecting to see problems. . . and they are not happening. I think he is REALLY getting better." Obviously that tells you how sick and fragile he WAS. Ethan has come so far. But it also reminds me how sick and fragile he IS. I express my gratitude everyday for his progress and pray that it will continue. I am all too well aware that with Ethan we can never let our guard down.

Love-
Heidi

Wednesday, July 29, 2009

Good Day at the Hospital

Today was the perfect day to let Cannon hang out with me ALL day at the hospital! It was perfect because Ethan SLEPT ALL DAY (and all last night too)! Thus I could play games and hang out with him the whole time. It seems the worst of Ethan's withdrawls are over. He sleeps and just wakes up for his assessments or when we move him. He looks around (looks stoned) gives a half smile and goes back to sleep. Seems those high doses of methadone and ativan are working.

The other beautiful thing is that at the exact time he finally started relaxing and sleeping, his FEVER went away. Whoohoo! So, we cannot help but think that this whole time it has been a withdrawl fever. It makes sense, because the fever came on a few days after he was reintubated through the nose. And as mentioned before, once his ET tube was out of his mouth he was soooo much happier, took his paci, and could self soothe. So with in a 36 hour period his Fentanyl was cut from 10mcg/kilo to 5mcg/kilo, and his Versed drip was turned off. Plus his IV PRN meds (morphine, ativan, etc...) were only given 1-2 times per shift instead of 15 times a shift. So basically that is when the withdrawls first started (and so did the fever)! Of course I could say all this and tomorrow his fever could be back for some unknown reason. But for now it is gone and we are thinking it was a withdrawl fever. My insurance is just glad they tested everything else under the sun 20 times over to make sure it was nothing else!!!

Just a side note to mention my love/hate relationship with insurance. Love them cause we have a five million dollar a person benefit that includes transplants, but hate them cause I have to fight them over everything, and they end up paying, but it is just a pain! The other week when I was losing it with a "customer service" rep, she said "Well, I am sorry you hate that we keep bothering you, but if your CLAIMS WEREN'T SO HIGH we wouldn't have to bother you". I quickly replied, "Well okay then, take all my time you need, I love having the 5 million dollar baby that I can't hold and have to watch suffer day after day" She was quiet for a minute, quickly got to the point, and hung up! (Did I mention this call was during the time when Ethan was so critical we weren't sure if he was going to pull through). So much for "Customer Service" rep!

Tuesday, July 28, 2009

All is Well

Ethan is doing well today! Not much has changed. They are taking it real slow. The good news is that he has taken a few 1-2 hour naps last night and today. The withdrawls are not easy on him, nor are his fevers. But overall he looks great. He is down four pounds from two weeks ago! That is how much swelling/edema he had on his little body. He is back to being a peanut!
Much love-
Heidi

Monday, July 27, 2009

Ethan's Voice!

video (You may need to pause the music to hear) For 5 plus weeks all I wanted was to hear his voice. This is all we have heard for the last 24 hours, literally. He can't sleep! Poor guy.

Hematoma

The good new is it is not a blood clot! The final verdict is its a hematoma (a collection of blood outside the vessel). So the bad news is why does he have it? Right now they are not worried about it unless it gets bigger. It bothers me a little because he is not wanting to turn his head as much to that side. So in time the body will absorb it, or it will get bigger and we will investigate more.
The other bad news is he had a really bad night. He decided to stop peeing well last night and still isn't peeing the greatest. So they have stopped his feeds to reduce intake and are started on TPN tonight. He started struggling with breathing last night and they thought his lungs were getting too wet. His breathing seems to be better, but he is still VERY uncomfortable today. They are just laying low and keeping a close eye on him. They don't want to do too much in case it is something that will pass on its own. I hope it will, and soon, because there are no smiles today and I don't like that!
Love-
Heidi

Sunday, July 26, 2009

Fragile

Ethan is doing well and still giving smiles in between withdrawl episodes. Every time he grins I just want to pick him up and go about normal life like nothing is wrong with him. Then I realize I am on a hospital floor entitled the Pediatric Cardiothoracic Intensive Care Unit. So as quickly as the smiles can come, they can disappear. And suddenly he is shaking, crying, tachycardic (really high heart rate), and inconsolable. Love narcotic withdrawls (not). Not to mention his fever was hanging between 102-103 most of the day which only makes him MORE uncomfortable!

My mom came down this afternoon so I could go to church with Greg. I was saying goodbye to my little man when he smiled and turned his head away like "mom, don't look at me like that". Totally cute moment, except. . . that is when I noticed a blue bulge on his neck in between some skin rolls. So after running tests no one will answer my worries of is it a blood clot or not. They seem to be avoiding me and hoping I will not beg for an answer til tomorrow. That means they want the VIP radiologist to read the scan! Which in turn makes me more worried!

I would think with Ethan's progress this past week that I could finally let down my guard and enjoy him, but I can't. It almost gets harder. With every smile I get more attached and that much more sick when "issues" or "unknowns" arise. I really need to get my emotions in check. We have definitely seen him through a rough period of his life. Getting through these two surgeries is HUGE. But it is apparent Ethan is not in this mortality for a boring and predictable experience!!! He plans on keeping things action packed it seems. Guess I should welcome the grey hairs that are coming with open arms! It is better than what Ethan is doing to Greg. . . balding and grey hairs :)

Thanks for reading my rant-
Heidi

Saturday, July 25, 2009

All Smiles

So I was home most of the day while dad was hanging out with Ethan. I came in, washed my hands, and went over to see Ethan. I was chit chatting with Greg when I first walked up and grabbed Ethan's hand. Jess, the RT, walked over to the crib at the same time (my witness). After a moment I finally turned all my attention towards Ethan and started talking to him. I instantly got a sheepish smile. That made my day! So I kept talking to him and bam, a big huge smile right at me!!! He followed up with two more. So after a few minutes I decided to catch one one camera. As soon as I put the camera in front of him, and blocked my own face, he gave the the biggest pouty face w/ lower lip turned out and all. So sorry, no evidence of his smiles, but I did have a witness!

He is still doing well. Chest xray looking a little better every day. All his IV sedation has been turned off and he is getting methadone in his tummy to compensate. It is helping but he sure has the shakes. All is well, will post more tomorrow.
Love-
Heidi

Friday, July 24, 2009

Baby Steps


I am so grateful. Ethan is still doing well. He is making baby steps forward. The easy pap treatments seem to be working. His xray looks a little bit better today (still has a long way to go). His labored breathing is getting a little bit easier. And his blood gases are great! He is also peeing well. Fevers are still coming and going. The infectious disease doctor said that the new diuretic we put him on is so close to Bumex that it will be hard to know if that is the problem. I asked him again if his teething could be the cause of the fevers. He said it is unlikely teething would cause such high fevers on and off for a week. But yes, maybe it could be. Hmmmm. He still thinks its a medication fever.

I get scared when I find myself getting excited at Ethan's progress. Yet time after time I have felt the Lord's comfort when Greg and I pray and ponder Ethan's future. We continue to appreciate everyday we have with him. However, we are ready to have many days at HOME with him and our other children!

Baby Steps

Ethan is still doing well. Improving a little bit everyday!

Thursday, July 23, 2009

Cutest Face


After a day of cleaning, bowling, and swimming, I came into see this beautiful face. I can't get enough of it! Ethan keeps putting his fingers in his mouth and chewing on them. He has two teeth coming in! He is still working really hard (retracting) to breath, but his blood gases and vital signs are awsome. So I pray he can get through this time without tiring his little body and lungs out. Oh yea, and that he can keep peeing! His fever has been just above 100 degrees all afternoon. We'll see. Ethan likes to tease us like that. And just when we think it is going away, his temp will spike again. For now I will just stare at him and try to keep him peaceful!

PS: Gagers took 5th place overall at the final city swim meet in the Butterfly. Good job bud!

Still Hanging In

I have been hesitant (and too busy) to post because Ethan was really struggling all night and this morning and it was looking like they were going to re-intubate. But he seems to have improved and little and is holding steady this afternoon. So we will still WAIT and PRAY!

His fevers were 102-103 most of yesterday so they decided they had to try and take him off the bumex. The docs switched his diuretics up yesterday at 6pm and sure enough, his peeing slowed down. So he was a bit more puffy this morning. Plus his morning x-ray was pretty bad. The right lung was still somewhat collapsed and it looked hazy. Between the two issues and fever he was laboring to breath, yet his blood gases were good! He has also continued to HATE the CPAP. So they decided to put him on high flow nasal cannula (which is way less annoying than CPAP) and added easy pap treatments every two hours to try and blow up his right lung. Then they tried another type of diuretic about 10am. By noon he was peeing much better and had an xray that was slightly improved from this mornings. Phew! He is also soooo much happier on the nasal cannula. He has not been crying his little head off since the switch.

The bad news is that his fever was 103-104 all night and this morning. They will give him 24 hours off the bumex to see if his fevers improve. If not, then it is back to wondering what is the cause of the fever. I have been home today (my other kiddos need a mommy once in a while) and Greg's mom has been with Ethan. When I call and check in the nurse keeps telling me how good she is with Ethan and how she calms him! Thanks Miriam. . . You might just have to start living at the hospital with him til he gets through this ;)

Thanks to all the cleaners and yard workers who showed up this week to help us!

Love-
Heidi

Wednesday, July 22, 2009

Hanging In There

Still on CPAP with support. Blood gases are pretty good. Tried weaning down the support last night and he didn't tolerate it. His morning xray showed partially collapsed lungs. So giving him the day to re-coupe and will try to wean the support tonight. They are pretty sure that his bumex is what is causing his fever. However, that is the magic drug that made him start peeing off all his extra fluid. So for now they are keeping it going and just trying to keep him comfy. Which isn't working by the way. Between the fever and an obnoxious nose piece blowing air up his nose, he is not happy. I was up with him all night and can't leave his side (thus the late post). I just hope he can hang in there. They feel if he can't tolerate weaning the support by mid day tomorrow they will need to re-intubate (which means they will schedule the trache). So only positive thoughts are allowed right now. He CAN do it! Praying for miracles here!
Love-
Heidi

Tuesday, July 21, 2009

So far so good

Just had another good blood gas. Keep the prayers coming!

Extubated


Ethan got extubated around 2:30! They put him straight to nasal CPAP. The picture looks almost as bad as being on the breathing tube, but its not. It is nasal cannula on steroids. It blows air in a rythmic pattern in his nose. It gives a little extra support to help the transition to breathing on his own. Since Ethan has been intubated so long they want to give him a 24 hour transition time on the nasal CPAP then he will go to high flow nasal cannula if all goes well. So right now we are trying to keep him comfortable and make sure he can tolerate being off the vent. I asked the doc if he could put a scope down and make sure his vocal chords are moving. He said nope, we will just watch and see how he does. Oooookay!

Ethan's voice is very quiet and raspy, which is normal after being intubated. And he doesn't exactly like the new CPAP set up. When he gets irritated he has this quiet, sad cry. I am so grateful, and nervous, and excited, and scared at the same time! Time will tell if his airway can tolerate breathing on his own. They will also be doing blood gases every few hours to make sure he is oxygenating well enough. Starting tomorrow they will be taking his antibiotics away one by one to see if his fever goes away. The other good news is that his fever has only been around 100 degrees today.

Thanks for the love & support-
Greg & Heidi

Monday, July 20, 2009

Impressive 1st Sprint

At about 11am they went to start Ethan's first ventilator sprint on CPAP mode with moderate pressure support (for all those moms of vented babies out there). They said we don't want to stress him out so lets shoot for 30 minutes. Well, FOUR HOURS later he was still doing great!!! It wasn't until the four hour mark that he was showing some signs of getting worn out. So they decided to rest him. WOW! That made me HAPPY! He has basically not worked at breathing for 5 months. I will definately take four hours for the first sprint! So tonight another sprint is planned for the same duration, but with very low support.

The only bad news is he still has the fever. The infectious disease team thinks it is a fever as a reaction to ALL the other antibiotics/meds he is on. They call it medication fevers. Hmmmm. Thats one I hadn't heard. But, that would be better than some rare disease we can't figure out!

Another heart mom recently posted on her page that she is grateful to be going through this experience and to be able to be so closely involved in experiencing the miracles of God. I definately agree with the second half of that statement :)
PS: Greg and I have gotten to each hold him in the last 24 hours... even with 50 cords and machines attached it was the best feeling.

Much love-
Heidi

Fever & Extubation

Ethan is hanging in there. He still has a fever hanging between 100 & 101 degrees. His CT scan had no findings. So back to trying to figure him out. The only test that still grew something was the secretions from his ET tube. So the newest thought is that there is bacteria on his actual breathing tube that his body can't kill.

The good news is that his lungs are still looking great. The team has decided to continue with the sprints and work on weaning down the ventilator even though he has a fever. They are also going to lower his sedation and have a goal of trying to EXTUBATE him sometime TOMORROW! They are going to be aggressive with it and hope that the fever will subside with the tube out. I want the tube out so bad, but I felt sick to my stomach when they said this. It just makes me nervous. It is what Greg and I want (the tube out), but I am so afraid. I guess everytime I get my hopes up he ends up having a major setback.

I think I am fearing the fact that he won't tolerate being extubated and they will have to put the tube back in. . . Or worse, he will have airway issues and need a trache. Just afraid of the unknown. However, they won't extubate if he doesn't tolerate the weaning process. So we will see how he tolerates the next 24 hours?!*!
I need to call Greg, he is my optimist and will tell me how "Ethan is going to do great and be so happy the tube is out, so don't worry!" Where is my faith. . . I know he can do good, now I just need to believe it!

Sunday, July 19, 2009

Doing Better Than Expected

After the rough start to the day yesterday, he is now doing BETTER than Greg and I expected. He started late Friday night with a 104 degree temp that they couldn't break. By mid to late afternoon Saturday they had got his fever down to around 100 degrees after putting ice packs on his body. Ever since then they have been able to keep it between normal and 101 with tylenol and motrin and Ethan doesn't seem to be as uncomfortable. The other GREAT NEWS is that by late afternoon he began PEEING really well again. Hopefully this additional illness will pass soon and will not have caused major setbacks.

On a side note, I have been asking you all to pray for Ethan's lungs and I am happy to say his lungs have been improving over the last four days! He was tolerating sprints well and his x-ray was getting a lot prettier. Yesterday they decided to stop sprints and let him rest until this fever subsides. This mornings xray was not quite as pretty as yesterdays, but not as bad as we expected with fever and fluid retention.

They have also decided to send Ethan for a CT scan today to see if they can visualize where the infection might be in his body since all his blood tests keep coming back negative.


Thank you all-
Heidi

Saturday, July 18, 2009

Fever

Ethan is celebrating the day with a 104 degree fever that doesn't break with motrin or tylenol. All his tests are negative so far AND he is on heavy antibiotics still from last weekends fever! The poor little guy is very uncomfortable and has, drum roll please, stopped peeing! He just can't win right now :(

Friday, July 17, 2009

5 Months Old





Happy Five Month Birthday Ethan! The kids came down to see Ethan and draw some pictures for his door.

Doing Well

Ethan is doing very well. Last night they had to lower his diuretics because he was peeing too much. They didn't want to bottom out his blood pressure or damage his kidneys. But he is still peeing well on his lower dose and has been very stable and comfortable. They even decided to do a sprint on the ventilator for 5 minutes this morning and he tolerated it well. They did one the other day and all heck broke loose in those 5 little minutes. As I mentioned a few posts ago, when he got the lung infection again they put his ventilator settings up really high.

So the weekend plan is for Ethan is to keep him peeing well, slowly lower his sedation some more, and try a few more ventilator sprints/lower settings. If all goes well the next few days, then we will work on trying to drastically lower his vent settings next week. As mentioned before, if it becomes apparent he is going to take a lot longer to get off the vent, then they are going to re-trache him. I already asked them to delay the trache to give a chance; I doubt they will let me push it off again. I humbly ask for you to pray for his lungs. The trache would not be permanent, but it would definately make life a lot harder when we are home. And its another surgery. . . But we will do whatever it takes to get him better!

Love and Thanks-
Heidi

Thursday, July 16, 2009

I love PEE



Yes, that is right, I love pee. They changed around Ethan's IV diuretics at 11am this morning. By 2pm he has peed over 300 grams! I know to you that means nothing. . .to me it is the beginning of heading in the right direction. It is better than oatmeal chocolate chip cookie dough and a Dr. Pepper! If his kidneys keep responding this well, his over-sized figure will start disappering soon! Please pray for pee (and his blood pressure to tolerate lots of pee)!
Love-
Heidi

Wednesday, July 15, 2009

The Pillsburry Dough Boy

Oh, Ethan is huge again! Still retaining too much fluid. His kidney function looks great. He just likes the full figured look I guess. The good news is his vital signs are still very stable and he seems to be reasonably comfortable. I don't know how he is not in major pain though. Its hard for me to even touch him. He looks like he is going to pop if I push too hard! Poor little man. The docs think he started retaining again, as a defense mechanism, when the infection hit. He is still fever free, but his white count is slightly elevated. Hopefully his body will let go of all the fluid once the infection is completely gone. I don't know if they can give him any more diuretics than they are already.

We are also continuing to pray he doesn't need any more chest tubes. He has been chest tube free for 36 hours and no build up of pleural fluid yet. The huge effusions are what led him to spiral downward after the last infection. So we hope this one will be nipped in the bud alot quicker.

Love & Thanks-
Heidi

PS: Congrats Gage. He is headed to the semi-finals for swim team in the backstroke and butterfly! Yea, you heard me, BUTTERFLY. . . I am in my 30's and I still can't do it! Go Gage!

Tuesday, July 14, 2009

Hanging in there

Ethan is struggling a hint more today. His diuretics were not making him pee as much yesterday. He ended the day very positive with intake which means he swelled a little more. His oxygenation is struggling more too. Probably the pneumonia. He is on higher vent settings. However he has been very content when he is awake! Looking around and even grabbing one of his toys I put by him during tummy time. Go figure! Doing worse but looking better. . . tender mercy I guess. I am grateful. Greg and I are at the realization we may be here for up to a few months more. It is hard, but whatever it takes to get him better. We couldn't do it with out all of you. I just wish I could promise I would make it up to you all one day. . . Just don't know if that is possible. We have been served and loved to the extreme.
Thanks-
Heidi

Monday, July 13, 2009

Looks Like Pneumonia

Ethan is still stable. We were enjoying higher oxygen sats (high for him anyway) during the weekend. But they dropped a little lower about 5am this morning. They also decided to start antibiotics due to the fever. It is a good thing. They suctioned his breathing tube and sent it for a culture yesterday and it is growing a bacteria consistent with pnemonia. The good news is it doesn't appear to be too bad, his white blood cell count is a only a little elevated and his chest x-ray doesn't look worse. So hopefully starting the antibiotics will nip it in the bud. So in other words, the plan is the same, but I am a little nervous he might take steps back from these new developments. But the team is determined to get him to turn a round this week! I think they know I might lose it if we don't see some progress. . . hospital psychosis is kicking in again! We have lived at the hospital for four months of his almost 5 months of life. Ugh! At least we have made some great friends along the way.

Sunday, July 12, 2009

Slow, Steady, & Agitated

Ethan is doing well. He was very content yesterday. So last night they lowered his fentanyl drip again. Twice in 24 hours. Plus, his prn meds have been drastically reduced for 2 days now. . . So withdrawls are kicking in (even though he is still on hefty narcotics). They have increased his withdrawl meds, but he still he is having a hard time "settling". Not to mention he has had a low grade fever for 24 hours now. But all his blood work is negative for an infection. It could be a little viral something, or his body reacting to the withdrawls. None the less, we are staying the course and trying to keep it quiet, and optimize his nutrition.

Like I mentioned yesterday, if Ethan doesn't get off the vent or let go of his swelling then they are going to do procedures: trache him again (because it is easier to manage his lungs and wean him with it over the next couple weeks. Ugh! They say it would be temporary again. . . but there is always the risk once its in, it won't come out. They also will insert a peritaneal catheter (a dialysis cath). His kidneys are working great, but the said he may need a "third kidney" to rid all his excess fluid. Really hoping we don't have to put him through more procedures. It breaks my heart to see him going through so much. Yet I am in awe that he has endured this much so far. But we will do it if it will make him better.

Saturday, July 11, 2009

Gotta Love the Paci

So we didn't get to hold him, but I did get to lie down with him (thanks Jess). In a full size hospital bed, Ethan and his lines/equipment take up 2/3 of it. Leaving 1/3 of it for me. But that was quite all right!

Also Ethan got re-intubated through his nose. It was a tougher process than I was anticipating. But it has been great. He had 18 prn meds two nights ago(doses of pain meds on top of the insane amounts he is getting at a constant rate through his IVs). Last night he sucked his paci for comfort and had 1 prn med. You heard me, ONE!

The surgeon came in yesterday and talked to us about procedures that might have to be done if he doesn't turn the corner by mid week. I don't even want to mention them, it makes me to sick. But in the mean time he said he will never turn the corner on his own with those insane amount of drugs in his system. So I hope the change and ability to suck his paci for comfort will help.

Ethan is also peeing great. He is on the heavy hitters of diuretics, four of them I might add! But unfortuantely the swelling isn't coming down yet. Now that it looks like his comfort is going to be a little better, we need to pray for him to let go of all the fluids he is holding on to.

I had a few days full of lots of tears. We were beginning to wonder if he had the ability to turn the corner and heal or if his body was just too beaten down. Our team assured us he will turn the corner, but it is not going to be right away. It is going to take a long time they said. He is weak. But I KNOW and PRAY he will continue to have the strength his has shown so far. They say he has not followed the course of any of their recent LEFT HYPOPLAST patients, yet he has bounced back time and again. I am convinced he can do it! And I know the Lord is very aware of Ethan and our family at this time.

Love-
Heidi

Friday, July 10, 2009

Bonding Time

Ethan was very fussy last night. His sedation/pain meds do nothing for him now. During all this fussiness they tried weaning down the vent again. It wasn't happening. However, I think I have convinced them to re-intubate through his nose. He is always happier that way. Then he can self sooth more with his pacifier. He has been intubated through his mouth for over a month and has no way to calm himself down. Babies love to sooth themselves by sucking their fists or in Ethan's case, his pacifier. They have been hesitant to do so because they don't want to risk further damage to his airway during the reintubation process. But loading him up all day with narcotics that don't work can't be too good for him either. So hopefully that will happen today.

Also, they are going to let Greg and I HOLD him. It has been over a month as well. They also are going to rearrange things in his bed so I can lay in bed with him. Oh, I can't wait. Other than those two items, the plan is to let him rest over the weekend, make sure his body is balanced nutritionally and with his diuretics, and do a few small sprints to strengthen his lungs. Then we will re-evaluate things/extubation on Monday.

I must admit I am missing my kiddos. I look forward to spending some time with them over the weekend as well.

Much love-
Heidi

Thursday, July 9, 2009

Frustrated

Sorry to take so long to report. Basically I have no news to report. He is still stable. The drying him out theory didn't work Wednesday. So they switched up the diuretics again and it seems to be doing the trick. So we are headed in the right direction there. Since he was unable to be dried out yesterday, they didn't work on weaning his ventilator today.

Ethan is "stuck". He really needs to turn the corner, but it is not happening. The diuretic improvement today should help. I keep telling myself to be more patient. He was soooooo sick for 3 weeks and had major surgery again (lungs). It is going to take time for him to get better. It is just so hard to watch patiently. He no longer responds to his sedation, hates the tube in his mouth, and gets more irritated when I try to comfort him. I think when I comfort him he is mad I am not taking the breathing tube out for him!!! Sorry dude.

Greg and I are struggling with his lack of progress and are well aware that the longer he is on the ventilator, the greater his chances of having more problems are. It is in the Lord's hands. We just pray He wants the same outcome as us!

Wednesday, July 8, 2009

Drying him out

Todays plan: changing up his diuretics to dry him out more and more tummy time to breakup the fluid and air pockets in and around his lungs. Tomorrows goal: attempt to extubate! I have a good feeling about this plan. Other than that he is doing good. He was pretty fussy last night. Think his new chest tube is making him uncomfortable.
Love and Thanks-
Heidi

Tuesday, July 7, 2009

Tummy Time




Ethan is having tummy time for the first time in 6 weeks. I was shocked that he liked it. Tummy time has never been frequent with him. Between two open heart surgeries, a G-tube, the trache (that I don't miss), and on and on, you can see why he hasn't had it much. We thought it would help move around the little bit of fluid left in his pleural spaces and get him off his sore back. You can see in the picture his thoracotomy scar for his surgery last week. The blue thing is a chest tube that was put in today to get a pocket of fluid that was on his right side.

Ethan had another CT scan of his lungs today. It helped them place the new chest tube and gave us another look at his lungs. We are still a bit concerned because his lungs don't look as full of air as they should. They look a bit "consolidated". He definately is still full of fluid and needs to be dried out a little more. Hopefully that will help his lungs out too. They talk about weaning the vent again tomorrow. We'll see. Maybe they will decided to dry him out a little more before they try again.

Today little Miss Bela stopped by. She has HLHS and spent 6 of her first 7 months of life on this heart unit. She is now 16 months old, walking, and cute as a button. It rejuvinated me to see her and think that Ethan will hopefully have a LIFE outside this unit (No offense to the staff. They are our family here. But it would be nice to be home!)

Also I wanted to give a shout out to themeanestmom.blogspot.com and babysafetravel.com. They gave Ethan a gift certificate towards a purchase from their baby boutique. That was very appreciated. I am amazed at all the the good works that are being done out there. We are truly blessed!

Monday, July 6, 2009

A Nice Day

After a drama night, it has been a nice quiet day. All of Ethan's tests have come back negative so far! Praying it stays that way!
Much love-
Heidi

Rough Night

As I mentioned in my last post, Ethan was really fussy last night. I told the nurse and doc I think he was trying to tell us something. And he did. He started struggling during his sprint (low vent settings). So they turned the support back up and then a while later (at 1 am) he dropped his 02 sats into the upper 50's and wasn't coming back up. They started bagging him and then his blood pressure dropped. So they were bagging and giving fluids and started pushing packed blood. He stabalized after about an hour.

Since then his sats have continued to dip into the 60's alot and he has been very diaphoretic (sweaty). Last night they ran tons of blood work and started him on antibiotics just in case. This morning the docs and surgeons had an Ethan pow wow. We are currently focusing on three aspects. The possibility of an infection, blood clot that might have gone to his lungs, or the thought he opened up another collateral vein! Either way he is Naughty! Naughty, naughty, naughty! I just wish we could figure him out. I know he is so uncomfortable. I just wish we could get the breathing tube out and give him his pacifier. Who am I kiddding. . . I just want him better, smiling, and in my arms!!!

PS: I must give thanks to his little angels over him again. Another rough struggle, and another GOOD blood gas after.

Sunday, July 5, 2009

Slow and Steady

Nothing too much to report. Ethan is about the same. They are slowly upping his diuretics. He still is sooooo puffy. They have been doing longer sprints on the ventilator (turning the settings down to almost zero for 90 minutes at a time). It is helping him to work harder to breath for short periods. He has been intubated for a month now and isn't used to having to work. The plan for tonight is to do two sprints over 3 hours each. The second sprint would end about 8am. If he is doing well at that point they will extubate. I am trying not to get my hopes up. He has been real fussy the past couple of hours. I think he may be letting us know he is not ready yet. We'll see!
It's been a nice 24 hours though. Ethan has been stable, thus Greg and I got to spend some time with the other kiddos (Thanks to the Grandparents). We enjoyed the 4th of July together with the Bench fam, attending my niece's baby blessing, and then brought the kids to the hospital this afternoon to see Ethan. We had been holding off bringing the kids down until he was off the ventilator, but we got sick of waiting. It was good for them to see him. Then we went to the heart unit playroom and played Shoots and Ladders for way too long (I came in last place every game, and Gage likes to rub it in my face!). But it was good times.
LOL-
Heidi

Saturday, July 4, 2009

Breakdown Day

I know I have much to be thankful for. I love this country and appreciate all the sacrifices that have come before us to allow our family the joys and priviledges this country has to offer. However, today has turned into a very hard day for me. Ethan was unable to get extubated this morning. He does great on little support with the ventilator, but as soon as they turn all support off he begins to struggle and retain CO2. So we will try another day.
The doc thinks we just need to get more fluid off his body and out from inside his lungs. He is still the pillsbury dough boy. They are increasing his diuretics. So hopefully soon he will be ready. There are alot of things in life that stink. I do not in anyway feel my life is bad. . . but to watch your baby suffer day after day for weeks on end and not be able to do anything about is heartbreaking. After awhile a pat on the head and a holding of the finger are just not enough when he is crying in pain. Oh well, at least he is not going backwards today!

Friday, July 3, 2009

Yes, I have other children

So my kiddos are getting handier at the computer, especially my 3 year old. He knows how to go to 3 websites. He clicks on the internet link and scrolls down the address bar to look for webkins.com, nickjr.com, and our blog. He acts all grown up and says he is "seeing how Efin is doing" when he looks at the blog. The kids have been mentioning lately that there are NEVER pictures of them on the posts. So here it goes. . . A post about ALL my children:

My older kiddos have done swim team this summer. Both have stuck with it and exceeded my expectations. Alexa has stuck with it and enjoyed the social aspects of having swim team with her BFF's. She was so excited in that picture cause she had a pink ribbon. I didn't have the heart to tell her it was a disqualification one (leg kicks weren't right). Gage, as usual, has stuck with it because he is determined to make it to divisionals and be the "best of the best". He has done well and is always picked to be on the relay team at the meets. At this weeks meet Cannon turned to me and asked why their swim races are meat?


Cannon has more personality than our whole family put together. He came in my room this morning with his hands held high, so excited to tell me something. And anyone that knows Cannon knows he studders when he can't spit his words out fast enough. Our conversation was about "How daddy was so bawing (boring)" He kept saying over and over with his hand waving about. I finally asked him why daddy was so boring? He said "cause he doesn't take me to the Lake anymore". I thought that was so funny. I explained I am sorry. It's not that daddy is boring. He is just always at the hospital helping take of care Ethan for me. I wasn't sure if that explanation was suffice. But after thinking hard for a minute he dropped his arms and said "Okay" and walked out. Drama over.

Thanks to my cute, darling, and creative friend Heidi (love her name) and my other cute, darling, delivery girlfriend Liz, Ethan has a festive holiday beeny and glow sticks to ring in the fourth! Hopefully I can get a better pic if his ET tube is out tomorrow.
FYI- The plan is to extubate at 8am tomorrow(Saturday) morning! Keep your fingers crossed and your prayers coming!

Not Extubating

Ethan is breathing well on very low ventilator support, but his chest x-ray doesn't look that good. His lungs still look quite wet. So the extubation is off. We will re-evaluate tomorrow. I am sure it is best. We want him to be totally ready.

Extubation Time?!*@!

I am nervous. They are going to try and extubate before noon. Please PRAY for a strong AIRWAY. He has been intubated for 3 weeks now. Seeing as how he just got his trache out before the Glenn, I am nervous that his airway is going to be very weak and irritated from the prolonged intubation. Not to mention taking deep breaths can't be too fun when you have had recent surgery in your pleural spaces!
Thanks-
Heidi

Thursday, July 2, 2009

More Baby Steps


I am very pleased. Ethan is STILL very stable and sleeping better. He needs to sleep away the next few days so his body can focus its energy on healing. They are weaning down his ventilator settings today, his sedation, and his dopamine. And I am excited to say he is even getting a little bit of FOOD in his belly. Granted they are starting off very slow and it is the NASTY low fat formula still, but it is something! Poor guy. I was brave and posted a picture of our little Pillsbury dough boy. Believe it or not, his swelling has gone down. Now you can understand why Greg didn't want pics of him for awhile. The funniest part will be when he fully recovers he will be sooooo skinny. That is all swelling (not from the Glenn either, he already recovered from his Glenn head)! Wish it was true chub, but oh well.
LOL-
Heidi

Wednesday, July 1, 2009

Looking Better

Ethan settled in for a couple hour nap for the first time in days! He was actually sound asleep/sedated for a few hours without jerking and waking throughout. The docs started an Epi drip on him last night when he was struggling. He got weaned off that today and tolerated it fine. His swelling is down a little today and his numbers/vital signs are the most stable they have been in days. I just pray it continues.

It was very hard today because the nurse and nurse practitiner both asked me not to touch, comfort, or talk/sing to Ethan. He has been so irritable lately. When I try to sooth him it almost becomes worse because he wants me so bad. He just stares at me and reaches for me. He wants to be held and comforted by mom so bad. . . and it can't happen yet. He has way too many "things" preventing him from being held. Such as a ventilator, 2 chest tubes, 2 central lines, an arterial line, and meds like dopamine and epinephrine! Just to mention a few. It has been over three weeks since Greg or I held him last. As a matter of fact his surgery was one month ago tomorrow. Like I said, a hard day. But I am grateful for friends checking on me and spending time with me. It helped pass the time.

They couldn't start feeds today because he was on the epinephrine. They just weaned it off and if he tolerates no epi during the night they will start feeds in the morning. His chest tube output for today is 60ish between both tubes! Yea! They just need to start feeding him and make sure the thoracic duct ligation worked before they pull them. The ligation cuts out the lymph vessel that is leaking fat and such into his pleural spaces. Also, his chest x-ray looked better today. Baby-steps. . . For now they are not going to do tPA again for his small blood clots. He is on heparin and they feel that is enough for now. Sorry for all the details. . . but trust me, I could go on for awhile longer if I really wanted!

I often say I know the Lord has a plan for Ethan, I just wish I had a crystal ball to see it. I am sure that is what many are feeling right now. There are MANY of you out there experiencing trials you wish you had a crystal ball for too. . . For now we will just try to ENJOY the journey.

Good Update

Still has some clots. . . but NOT a large once disrupting circulation as they thought. Some relief :) I'll take any at this point!

Struggling Along

Ethan's little body is continuing to struggle. He had a rough night last night and seems to have stabalized today, however he is still struggling with comfort issues. Unfortunately we recieved more BAD NEWS; he has more blood clots. They seem to be large and affecting circulation somewhat. We are waiting to hear the course of treatment and if he is even stable enough to do it. I will update later. We feel your prayers and hope Ethan can get through this difficult time.
Love-
Heidi