Time Flies....

I can't believe how long its been since my last post. I don't even know where to begin!

I suppose the most important thing to know is that Ethan is doing well. He talks up a storm and is extremely intelligent! He has a great sense of humor and is very sensitive to everyone around him. He is two now and enjoys getting into cupboards, playing with his toys and snuggling with his mommy.

This past year has brought about many changes in the house.  The first being that I quit my job in June of 2013.  This was the most difficult decision I have ever made and their are many days that I question whether or not I made the right choice.  I loved my job at the bank and I had worked very hard over the years to get my position. With that being said, from early March to June of 2013 Ethan was hospitalized six times with respiratory issues. One of the hospitalizations lasted 2 1/2 weeks and I was unable to be with him because of work and having my assistant manager on vacation for two weeks.  It was heart wrenching for me.  I spoke to my boss about the possibility of a more flexible position but then shortly after Ethan's doctor put him on oxygen full time at home.  It was evident that he needed at home care so I put in my notice.

I'm happy to say that he has been off of the oxygen since August of this year and he hasn't been hospitalized since I've been home.  Even with contracting whooping cough and pneumonia at the beginning of this year! This gives me hope that he is growing out of his chronic illnesses and that his health will continue to improve as he gets bigger.

Getting bigger is one of the issues we face.  At 29 months old he is only 21 pounds and still wears size 18 months.  It seems that once he begins gaining weight he gets sick and loses all the weight I was able to pack on him. It's pretty frustrating.

Anyway, I just wanted to give an update since it's been so long. I can't believe how busy being a stay at home mom can be. Believe me when I tell you that going to work everyday is much easier than being at home with children all day! I have so much respect for the stay at home mom's that do this for years on end!

Here are a few pictures of my little fighter:

The post surgery roller coaster

So much has happened since my last post. I feel as though I've gone through so many ups and downs my head is still spinning.

The morning after my last post CHLA had done additional studies for Ethan's digestive system. They did a lower gGI study and it showed that he has acid reflux. They were still talking about discharging him either Wednesday night or Thursday morning but wanted to perform an upper GI study Wednesday morning. The doctors said that as long as the study didn't have any other abnormalities we would be going home.

On Wednesday Ethan was in good spirits and I was excited about going home. Around 1:00 pm the nurse practitioner came into the room to say that Ethan would not be discharged as he did have some abnormalities but additional testing was necessary. Two more X-rays were completed and a few hours later the attending came in to tell me that not only did Ethan have severe acid reflux but he had a hustle hernia and his intestines were shifted to the right. He said that Ethan would require another surgery.

As you can imagine I was devastated and in shock. The attending also said that he was going to stop all feeds by mouth and restart IV nutrition. At this point Ethan hadn't thrown up in two days and was slowly working up his feeds. It is true that he had lost weight but he was throwing up so much before that weight loss might be expected. I again stood my ground and said that I was going to continue breast feeding. This didn't make the attending happy.

The next question was then where was Ethan going to have his surgery? Because it would be a general surgery it could be done at Kaiser and we had a choice of going across the street in Los Angeles or going down to San Diego. Since Ethan's first surgery, his esophagus repair was done at Kaiser in San Diego I asked if the same surgeon, Dr. Vasquez, would be the person performing the operation since he had exceeded our expectations the first time around. They said he would!

Wednesday night Mike came up to be with Ethan and I. Thursday morning we took Ethan for a walk in cvacute. We sat down the hall on a bench under a window. Ethan was in his stroller and as I looked at him I noticed that he had a rash on his leg (the good one) the other was bandaged up so I couldn't see if it also had a rash or not. We went back to Ethan's room and called for a doctor. They took off Ethan's leg wrap and the rash was also on his right leg, on his stomach, arms and back. They only change was that they had started him back on TPN and the lipids! Well obviously Ethan has an allergy to lipids. They immediately discontinued them and gave him Benadryl which eventually made the rash go down. Ugh! Wouldn't they have figured he was allergic after seeing the reaction in his foot and leg?!

At about 2:15pm the transport team arrived and by 3:30 Ethan and I were headed down to Zion. The ride in the ambulance was super uncomfortable for me and I ended up getting a little car sick.  Ethan did fine in the beggining but then cried for about 45 minutes once we got stuck in traffic.  We arrived in San Diego at about 7:30 pm. 

Early the next morning both Ethan's surgeon and the cardiologist came to visit.  The surgeon stated that typically he did not operate on hiatel hernia's alone. He may operate on the reflux but only if it was so bad that after each feed Ethan was vomiting and had lost a significant amount of weight and then while he was in their would repair the hernia.  Fortunately for us this was not the case, Ethan was holding down all of his breast milk and some food. He said that he was comfortable sending us home with weekly weight check appointments.  Our cardiologist was more than pleased with Ethan's heart function and couldn't even hear the small VSD that the doctors at CHLA heard. 

Best news came at about 11:30 am- We would be discharged to go home! We finally got to go home Friday September 14th!

Last week was a blur.  I think we had about 3 doctors appointments and I've been trying to schedule physical therapy.   Ethan is doing so much better and is thrilled to have been reunited with his brothers and sister.  He is eating up a storm and I am looking forward to his weight check tomorrow.  Last week he was at 16lbs 7 oz and I'm hopeful he is back to his pre-op weight of 17lbs.

Now the big project is to gain weight, continue with appointments and plan a BIG Birthday party for October 13th!

Change of perspective

This last week has been extremely difficult for me emotionally. I'm not gonna lie, it's probably been one of the most difficult times in my life. I have been frustrated, angry, irritable and just plain mean. I actually feel very sorry for a few nurses that have had to deal with me.

Last Wednesday we had a biopsy done of Ethan's leg. Still no answers. He still is having trouble eating solid foods. We had been told that he would be discharged last Monday but that was changed on Sunday. We are hopeful that he will finally get to come home either tomorrow or Thursday. We found out today that Ethan has very bad acid reflux which explains the vomiting. They have him on medication for the reflux and he was able to hold down some food today. He will have another test tomorrow morning to check his esophagus to make sure that nothing was damaged with all the tubes they've put through it. If everything looks good we may be released in the evening.

I digress, so as I mentioned I've been pretty much a miserable person the last week and I've been getting extremely impatient about going home. Last night I came back to the Ronald McDonald House and saw Sylvia (one of the employees here) put out a rose and a paper that read that one of the families staying here lost their child. Then on Facebook another HLHS baby had also passed away. I can only imagine the pain that these families are going through. Its strange to me that a year ago death only happened to the elderly and now suddenly its all around me and part of my reality. I no longer feel invincible and have anxiety about death and losing my loved ones.

These events, however, gave me a new perspective on how I should be grateful that going home is even a consideration. Today I kept that on my mind all day and I had a much better day. I made a conscience effort to be grateful, to say thank you and to just be nice. Ethan and I chatted it up with the nurses, parents and other patients today. It was good for my soul.

So until Ethan gets discharged I will choose to have a positive attitude and be grateful for what I do have. I will be the person that I would want to be around and know and not the crazy mean person I had become the past week.

Hopefully the next post will be the news that we are home. Till then I thank you again for your prayers and continued support.

The waiting game

You've probably heard the saying "no news is good news" right? I'm not sure if that's true or not (time will tell in Ethan's case) but right now no news is frustrating both Mike and I.

Ethan's foot is still swollen. The swelling in his foot has come down from 15cm to 14.25cm and we are grateful for that. With that being said the swelling has spread into his knee and upper thigh.

We are beyond frustrated. I'm not the type to be easily angered or to yell at anyone. I'm usually a pretty patient person. In the last three days I've lost my patience with two nurses, one fellow, a social worker and a doctor. At this point I'm pretty much convinced that everyone here thinks I'm crazy. Perhaps they're correct. When it comes to the health of my children I think I know what's best and I'm entitled to have a say in their care. Because Ethan had been throwing up so much they wanted to stop feeding him by his mouth and only by an ng tube (tube that goes through his nose directly into his stomach). One of the doctors felt that he was throwing up so much because he had been aspirating his feeds into his lungs and then throwing it all up. I knew this couldn't be the case because he would eat just fine then sometimes hours later begin to cough and throw up. When the nurse told me last Thursday that I couldn't feed him by mouth till he had a swallow study done I was livid. To make a long story short I basically had to tell five different people that I was going to breast feed and that was that. I am his mother and I know what's best.
Guess what?! Who was right (yet again)? Me. He hasn't thrown up for me since last Friday which even on Friday it was only once. The doctors are still standing by their story that they want a swallow study done, which probably won't happen till tomorrow (6 days after it was originally ordered). They have conceded to pull out the nose tube today and they let me feed him solids. Win for Ethan!

Now back to the foot/leg. Ethan literally has a range of doctors in to see him every day. He has had auto immune doctors, infectious disease, renal, orthopedic, dermatologist, plastic surgeon, and general physicians look at him. At first the diagnosis was cellulitis but after seven days of antibiotics their was no improvement. Then it was thought compartment syndrome but blood flow was still good. Then just inflammation with no infection. Then paraffinoma, then perhaps lymphedema, then.... I don't know. There has been no real diagnosis and now the course of action is merely to sit, wait and observe.

Today is day 27 post op. I have lost my patience. I miss my "normal" life and want nothing more than to take a healthy baby home. I am hopeful that this sit and wait game doesn't last too much longer.

It's so frustrating that after Ethan is able to recover from such a massive surgery that an infection from an iv due to negligence is what's keeping him here.

Please pray for patience for Mike and I, healing for Ethan, and clarity for the doctors.

XOXO,
Renee

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!