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