Good news, bad news

When I was a little girl and someone would say, 'I have good news and I have bad news, which would you like first?' I would say good news. I think at the time I liked the instant gratification of the more pleasurable news. As I got older things changed and when I got into my late teenage years I wanted the bad news first. It's kind of like pulling off a bandaid fast. It hurts for a moment then the pain quickly goes away. You also hear the good news after and you can end on a good note. That being said, bad news first...

For those of you that don't yet know Ethan had an IV in his right ankle that was placed prior to surgery. At 14 days post op his nurse saw that it had infiltrated and his leg and foot was swollen. The IV had been transfusing lipids and when she pulled out the iv some lipids had come out of the site. This was last Tuesday. His leg was swollen throughout the rest of the week but seemed to be going down in his leg. On Friday his foot was swollen and red. We had been transferred out of the critical care unit and into the step down unit which meant that home was around the corner. Unfortunately his foot got worse and nurses, doctors and surgeons were inspecting it quite frequently. His heart surgeon Dr Kallin came into take a peak and he was furious. He had Ethan immediately taken back to CTICU so he foot and leg could be more closely monitored and so Ethan could have one on one care.
Today the foot is still red, shiny and swollen. Ethan is in pain and very uncomfortable. They have him on two different antibiotics to help clear the infection and he has a fever. They believe he has cellulitis which is very painful and can last one to two weeks. They are concerned about the swelling turning into compartment syndrome which would require an additional operation.

Aside from this, Ethan is not doing well with his feeding. He still has some fluid in his lungs and when he coughs up the mucus he swallows it and then throws up all of his food. The doctors are monitoring this very closely and are talking about sending him down to radiology to see if he has digestive issues or just reflux. We have never had feeding issues with Ethan before so this is very frustrating. Especially since he is hungry and has a strong desire to feed.

The good news:

Another echocardiogram was done and Ethan's left ventricle has grown and is of adequate size to function. His heart is functioning well and from a cardiac standpoint he would be able to go home.

Even though his foot is swollen and infected his foot still has good oxygen saturation levels and a pulse. (This means that oxygenated blood is still making it's way down there.

That's all I really have for now. Please continue to keep our little one in your prayers.

The Road to Recovery

Sorry no update for a while. As they say, 'no news is good news', right? Ethan is holding his own. Recovery has been slower than the doctors (or I) would like but Ethan is making baby steps every day. They determined that the fluid in his lungs was due to pneumonia, which crazy as it sounds was a best case scenario. He has been on antibiotics for the past seven days and it has helped although he does still have fluid and he is coughing quite a bit.

Saturday was the best day. Ethan was extubated and I was finally able to hold him after ten long days. On Sunday he was able to eat by mouth for the first time. I had gone back to Oceanside to visit Braden and Cameron for a quick 24 hours, but Mike was with Ethan for his feeding. Unfortunately Ethan threw up all of his food. I came back Monday at 1:00 and was able to feed Ethan pears and breast milk and he kept almost all of it down. We weren't so lucky with his next feeding of squash and he threw up pretty much everything. Yesterday he threw up his peaches and refused to breast feed but took breast milk from a bottle.

Why do I go into such detail about his feeding? If he isn't able to keep down his food and eat at least 3 ounces every 3 hours then they will not discharge us. Often times with heart babies this can be a struggle. I'm hoping that it's just due to his gut not having to work for eleven days and that everything will kick in as it should soon. We have been fortunate to not have any feeding issues in the past with Ethan and I'm hopeful that as discharge comes near that will be the case.

Ethan is still in CTICU but they have completely taken him off his milrinone today. If his blood pressure is stable for the next 24 hours then he'll be transferred to the floor. (one step closer to home!) He is slowly being weaned off of his pain medications and is not suffering to badly from withdrawals. He is currently receiving a blood transfusion as his white cell counts were down and they don't want his heart working to hard to produce them. So the transfusion should assist in giving him a little kick start.

The doctor thinks that if he continues recovering at the pace he is at now that he may be able to go home by Wednesday of next week. I'm okay with that but would really like to get home by Sunday so I can be back home with the family.

Please continue to keep our little man in your prayers.

Much love and thanks,

Renee

A thankful heart

Today I am grateful. I am grateful that despite the odds (even from before Ethan was born) that my baby is still alive today. I am grateful that with each day his health improves.

I am grateful to my fiancé, Mike, for being my rock, my love and my greatest supporter.

I am so thankful to my mom who has so graciously been taking care of Braden and Cameron so I can be here with Ethan. I am thankful for Nancy Schowen for helping and being so accommodating as well. I am also grateful to my brother Eric for stepping up to the plate and helping as needed. I am thankful to My brother Mike and his wife Kim for braving a few days and nights with Cameron. (Pretty good birth control, huh?)

I am incredibly thankful to my Dad who has come every day to the hospital to visit, give support and have dinner with me. I'm grateful to Angeles who has also made the trip a couple times and has kept the prayer chain at her church advised of Ethan's condition.

I'm thankful to the friends that have offered to bring my mom and the boys dinner (Kate, Lauren and Carolyn). I can't tell you how much that means to me.

I'm grateful to my Facebook friends that have commented words of encouragement, prayers, life experiences, or shared Ethan's story with others so they can pray- it really means so much to me and helps me to get through the day. (In particular Debbie Mulligan, Lindsey Allen, Kate Hammernik, Aubree Valentino, Jessica Jacobus... The list could go on forever but just to name a few)

I'm thankful for the texts and messages from others. (Elisha, Emily and Vanessa)

So grateful for the kind words of other heart moms joined through Sisters by Heart.

I am grateful that Ethan was more awake today and that when he looked at me like he knew who I was. I'm grateful that he held both of my hands and fell asleep staring at me. I'm thankful that he tried to talk through the ventilator and that I heard a silent 'mama' and nearly cried.

Most importantly I thank God for the blessings he has given me.

I'm so thankful for so much else and to so many others so please forgive me if you were not mentioned. I just felt the need to say thank you today. Love you all!

A Bump in the Road

Yesterday was a good day, a wonderful day, considering the circumstances. Ethan was slowly being weened from support, his swelling had gone down significantly, saturations were in the high 90's, and they were talking about extubating in the morning. We had friends, Jevon and Michelle, drive up to visit and take us for lunch and then my dad met us at the RMDH for dinner. As I said it was a good day and things were looking up.

Today was not a good day. Early in the morning Ethan's blood pressure rose and his saturations went into the low 80's. They had to increase his breathing settings from 16 bpm to 50 bpm. They had to do suctioning on his breathing tube more frequently than before (they were getting more secretions). They did an X-ray and saw fluid on the lungs. The on-call Dr referred to them as "wet lungs", my advice- don't google. This was not the news I wanted to hear when I went to visit today. I was hoping for an extubated baby that I'd be able to hold and play with again.

Mike had left last night to go back to work today so I was alone when they told me what was happening. When I called Mike to break the news to him he only had more questions. Questions that I didn't want to ask. Someone once told me not to ask questions that I didn't really want answers to. Like "how serious is this?" or "will my child die?"

Those were the questions I had to ask today.

The answers? 'It is very serious especially in Ethan's critical state, but not as serious as the rhythm and function issues he was having two to three days before. We have to find the cause or underlying issue of the fluid on the lungs to know how to treat it. For now we will call it a bump in the road.'

The doctor thinks it could be a few things. As I mentioned in my last post the echo showed that Ethan's heart function is as it should be. What the echo does not show is the relaxing function of the heart. They see that it is squeezing properly but would not know without a cardiac catheterization what the resting pressure is like.

Or

It could be that the scimitar that was corrected has already built up scar tissue and the blood from the lungs is backing up.

Or

It could be an infection that antibiotics could cure.

Or

It could be that being on bypass so long has affected his organs and perhaps thyroid therapy could help.

I am praying that this will just pass on its own and that no more surgical intervention is required. Please pray with me. Please also understand if I don't return calls right away. It's hard to relive it over and over again with everyone by phone. (reason for the blog)

Heart hugs to all!

Turn around the corner

It has been 50 hours since Ethan came out of surgery.  When the doctor's say the next 48 hours are going to be the hardest and most crucial they aren't kidding around.

After surgery Ethan began to have a fever and arrhythmia.  His heart function was not where it needed to be, the nurses were barely getting a pulse in his lower extremities, and his fever was between 102.1-103.3.  The pacemaker that was placed was constantly kicking in and I think I was a nervous wreck.  We've had so many people praying for us and I truly believe that has made such a difference.  I had posted a prayer request on facebook and a few hours later his fever broke and was completely normal.  It has been at 98.6 since 12:00 am this morning!

Last night the doctor's had to turn the pacemaker on to pace Ethan's heart.  His heart rate had drastically increased to 180-230 beats per minute!  This really freaked me out especially when I googled tachycardia on the Internet.  Fortunately, I have friends that are heart moms as well (connected through Sisters by Heart) and they calmed me and told me that this was normal post op. They gave him some medicine to also help with this and they are still pacing his  with the pace maker heart now.

More good news is that I just met with the cardiologist here and he had ordered an echo cardiogram and told me that the function of Ethan's heart looked perfect on the echo!  He said that Ethan is stable now and he feels that he has finally starting to "turn around the corner".  They are now giving him lipids and nutrients through the IV and starting to slowly turn down some of his medicines.  I am hopeful that within the next few days they will be able to extubate him and I'll be able to hold my little love again.  For now I just talk to him and watch him sleep.

On the funnier side, yesterday a nurse commented on how smart Ethan was.  I said, "Really?  What did he do?" She said that he had been stirring in his sleep and went straight for his breathing tube and tried to pull it out.  Needless to say they have his arms tied down now.  I told her that I don't blame him for trying to pull it out- he has a few things on his mind he'd like to tell us!

Well, good bye for now.  I will keep everyone updated as we learn more!

Surgery

Yesterday was our pre-op visit at Children's Los Angeles. We checked in at 10:00 am and Ethan had a complete physical and blood draw. He was quite the trooper considering we were there for almost four hours! The phlebotomist at CHLA was fantastic and was able to get his vein on the first try! This is unheard of for us. Ethan is usually a very difficult draw and it is a very traumatic event both for him and us (Mike and I) when he has labs done. We also met with our surgeon, Dr. Kallin, to sign consent forms and further discuss the operation for the following day.

Dr. Kallin indicated that he was 90% sure it was going to go the Glenn (single ventricle) route. I told him that I liked the numbers he gave me when we had our phone conversation two weeks prior (75% Glenn 25% full heart repair). I told him that we'd been feeding Ethan blue berries and praying and I was sure his valve would measure at 9mm like he wanted to see. He looked at me like I was crazy and again reminded me that he had shown Ethan's echo to the finest cardiologists in L.A. And they are seeing the valve at 6.5 mm but that he would place a dialator in the valve and if measured at 9 he would do the whole heart repair.

We met with my dad for dinner and a walk after in Glendale and I told my Dad that it looked like it would be going the single ventricle route although I wasn't giving up hope I had come to terms with the surgeons decision. My dad asked what the valve needed to be at for the full heart repair. I told him nine and he said okay that's what we will pray for then.

Today we checked in for surgery at 6:00am. They gave Ethan some "happy juice" and he was so adorable when it kicked in. He was staring at me and smiling with those big brown eyes of his that I have fallen in love with. They took him back for surgery at 7:00 am and the waiting game began.

At about 2:30 a nurse came in and said they were warming him up and surgery was over. She said Ethan was getting his Glenn today, right? I said ," I think so." She indicated that Dr Kallin should be out shortly to speak with us. All of the sudden time began to stand still it seemed like we were waiting forever and then nothing.

At about 3:30 Mike went to talk to the nurse again. She said that they had to go back in and do additional repairs to Ethan's arch and didn't know how much longer it would be. At 4:00 Dr. Kallin came into the waiting room. He looked at me and told me that I got my wish and Ethan got a full heart repair!!

He said that the valve measured at exactly nine mm and he felt confident in doing the full repair! He even corrected Ethan's scimitar which he wasn't even going to attempt till Ethan was two or three!! He said that the surgery did have a few issues, which is why it took so long, and that Ethan was on bypass a little longer than he likes but that he fixed everything!! More specifically a very hard to get to and large ventricle septal defect (VSD), coarctation of the aorta, scimitar, pulmonary band removal and reconstruction and removal of the shunt in his PDA. (Well actually half of the shunt is still in there. It had scare tissue grown around it and eventually it will need to be corrected but it should be fixed through a Cath lab and not another open heart surgery.) I am still shocked and amazed!

We were able to see Ethan at 6:00. His coloring was good and his blood gases were better than expected. Unfortunately he has a temperature of 102 and some arrhythmia. They have placed a pacemaker and it has kicked in a few times already. Please continue to pray for a speedy recovery. The next 48 hours are so crucial. Your prayers mean so much to us and they are working!!!

Family Matters

This last week was spent surrounded by family. Mike's parents took the train down from Sun River, Oregon and stayed with us Sunday night through Thursday morning. I can not express how grateful I am to them for making the long trip down and for being so helpful with Ethan. On Monday they watched Ethan while Mike and I took the boys to a movie. On Tuesday we all packed into the car and went down to Coronado for the day, it the first time I had been there and I instantly fell in love. I had such a blast walking around town and the grounds of the hotel del- I wish we could've stayed longer!

Wednesday we drove to Temecula to meet with Mike's cousin, Cheryl, her husband, Kylle, and daughter, Leah. We had lunch at South Coast Winer. It was delicious! Ethan was overly exhausted and cried the whole way home. I don't think I've ever seen him so upset in the car since I first brought him home.

Mike's parents left Thursday and I mostly just did laundry, hung around the house, then took a long walk with the boys to a nearby park and took pictures of my little loves.

Friday I knocked two more items off of Ethan's "activity" list. Chuck e Cheeses and Cotton Candy. Now don't judge me. I realize that I shouldn't be taking a medically fragile baby that is about to have open heart surgery to a germ infested place swarming with children. In my defense, I feel like everyone should go to Chuck e Cheese's at least once in their lifetime. I held him the whole time accept for one ride which I thoroughly wiped down. As for the Cotton Candy I'm not a fan of giving any child sugar, especially one that's nearly ten months old, but it was a very small taste and this surgery is really getting to me. Friday night we had dinner with my friend Carolyn and her family.

On Saturday my brother Mike came down for dinner with his family. I can not tell you how much I appreciate not only the distraction of having family and close friends visit with us, but the importance to me of having them get to know Ethan and say prayers for him.

Today was a calmer day. Just Mike, Cameron, Ethan and I. Ethan and I played together on the floor for at least an hour. We is starting to pull himself up on objects and get on all fours. I was hoping he would crawl before his surgery but now feel perhaps it is a blessing in disguise that he hasn't yet. After all he will be stuck in a hospital bed recovering after surgery and it's probably best that he focus on that rather than wanting to get on the ground and crawl around.

Mike, Ethan and I leave tomorrow night for Los Angeles. Pre-op is set for early Tuesday morning and surgery for Wednesday. Please continue to pray for Ethan and for the best possible surgical outcome for him.

Much love and appreciation- Renee