Wednesday, March 15, 2006

5 Days to go - Emma's 5 surgeries

Only 5 More Days Until Emma’s BIG DAY!!
O.K., so I am a day late with this one…sorry! Life can get a bit crazy!

Warning: This is a VERY long post:)

Today, I thought I would tell about Emma’s 5 surgeries. Each of the surgeries was very different, and the emotions to go with them also varied so much!

1st surgery – September 21, 2003 (Emma was only 6 weeks old) – Liver Biopsy: This procedure was performed because it was obvious that Emma’s liver was not properly functioning. She was very jaundice, and her blood work showed that there was a problem. A liver biopsy can show so many things. They did one on Emma to indicate whether she had Biliary Atresia (which she did) or possibly Cystic Fibrosis, or Alagille’s syndrome. After the biopsy they were almost certain it was Biliary Atresia. During this procedure Emma was put under and they stuck a large needle in the right side of her back right under her rib cage (this is the first of many scars she has to show). The biggest concern for this procedure is possible bleeding afterward. Emma did GREAT!

I, on the other hand, was a COMPLETE mess! Looking back it is interesting for me to realize that this was probably the “easiest” surgery that she would endure….but I was the biggest mess during the time she was gone. I remember that we were able to walk down with her, and we were able to stay with her until she was asleep. It was a tiny little room that she was in, and we were allowed to wait just on the other side of the wall. Tears streamed down my face the entire time while my body ached to hold my baby again….she was only gone for 20 minutes!! As soon as they were finished we were allowed back in to be with her while she woke up. I will never forget her weak cries of pain as they gave her more morphine, and the memory of the smell of the tape would be one that I would experience time and time again…yet never become “used” to. To this day I hate that smell.

Surgery #2 – September 29, 2003 (Emma was 7 1/2 weeks old) – Kasai procedure – This was the beginning of our “Crash course” that I spoke of in my last post. We got to learn all about the way the liver functioned, what was connected and where, and what would change inside of our little girl after the surgery was completed. During this surgery they removed her gall bladder (which did exist, but was completely shriveled and looked like a grape), they also removed her main bile duct. Then they cut the small intestine and attached part of it to the liver to act as the bile duct. WHEW!! That was a lot to take in for BRAND NEW parents of a 7 1/2 week old baby!

My emotions seemed to be a little more stable during this surgery. However, I had been put on anti-depressants (which were MUCH needed…just in case Tom Cruise happens to want to knowJ), and we had people there to support us (my sister, a friend of mine… and my mother….not so much of a support…but that’s another storyL). I really remember pre-op on this one. We had to put Emma in this ENORMOUS gown that was like a size 4T…(she only weighed 7 lbs.)! I remember the questioning, and how I found it SO annoying that they couldn’t just look in her chart! I remember looking up on the surgery board and seeing my babies name up there…UGH! And, I remember the surgical nurse coming to get her. 25 kisses later, I allowed her to take her from my arms, and I cried. However, this time I did not cry the whole time. She was gone for 4 hours, and our support group helped to lighten the time by telling jokes and keeping our minds occupied.
Surgery #3 – December 13, 2003 (Emma was 4 mths. Old) – Cardiac catheter (I’m not sure the spelling is correct) – We had gone back to Denver for Emma to be evaluated to be placed on the transplant list. We had to have all kinds of blood work and testing done. We went in for her EKG (of her heart. At birth Emma’s Patent Duct in her heart did not close. This happens in 30% of births, however it usually closes within the 1st 3 mths. So, we had to have an EKG to make sure it had closed and everything was fine). I remember the doctor came in and did the initial exam, and told us the radiologist would be right in to do the ultrasound, then we would just have to wait a few minutes and she would come back to tell us everything was fine…she didn’t think the head of cardiology (can’t remember his “title”) would have to come in unless something was “seriously wrong”…and she chuckled. Well, we went to ultrasound. I sat at Emma’s head trying to keep her calm and still, and I remember thinking “This is taking FOREVER”…and it was, the radiologist just kept going over the same spot over and over and over! Well, she finally finished and sent us back into the other room to wait, and wait, and wait. Then, the door opened and in walked the HEAD of Cardiology, our HEAD GI doctor, 2 more cardiologists, AND the transplant coordinator! We knew right then that this was NOT GOOD NEWS! They told us that the PDA was very large now. Emma’s liver had become so big that the blood was pumping more quickly, making the heart work more, and it was also causing stress on her LUNGS! They said they needed to do a cardiac cath where they go in through an artery in the leg and go up to the heart and put a spring in to close the PDA. Then, they told us that they would try different medications (including Viagra) to get the Pulmonary hypertension (stress on the lungs) under control. If they could not get the pulmonary hypertension under control then Emma WOULD NOT BE A CANDIDATE FOR TRANSPLANT= she would die!
This news was heartbreaking to say the least, and we found ourselves wondering how much more our baby could go through…and how much more we SHOULD put her through. Needless to say that I was a COMPLETE basket case during this procedure! They said it would take 2-4 hours. I remember that we went to the little Chapel in the hospital and we cried and cried! Emma was only in surgery for about 1 1/2 hrs. when Dr. Chen came out with a grin on his face (yeah! Good news). He said the cath went great and the first drug they tried (oxygen) seemed to resolve the hypertension. So, Emma went home to wait for transplant on oxygen.

Surgery #4 – March 19, 2004 – Emma was 7 mths. Old – Liver Transplant – I have told this story before in a previous post. So, please refer to that one if you would like to read the story.

My emotions however, are not in that story. When I first found out that there was a liver available I was a complete and total mess. I remember saying over and over “I don’t want my baby to die”, and my wonderful sister comforting me. However, from the time I got to the car until after the transplant was finished I did not cry again. I felt a huge sense of peace, for this was the ONLY thing that was going to save my child’s life. I handed her to the transplant nurse with a very peaceful feeling, and for once (even though this was the biggest surgery yet) I did not shed a tear. I did not cry until 8 days later when Emma began to fill with fluid, her breathing was labored, and we began to see our sick baby return.

Surgery #5 – March 29, 2004 – Emma was almost 8 mths. Old – Correction surgery – This was a tough one. We had never seen Emma intubated…all 4 of her other surgeries she was extubated in the operating room (even transplant…which is almost unheard of). However, I remember the night before this last surgery I stayed the night with her. We were back in the PICU. As I layed there that night, her breathing became worse and worse! I feared the ventilator because I had never seen it on her. I just pictured the ones on TV with the big blue tube and are VERY noisy. Well, at one point I woke up and I thought they had intubated her already because I heard this loud whooshing sound. Well, she was not intubated…it was her breathing. The intake and the exhale were SO labored. They came to intubate her, and we had to briefly leave the room. I cried and cried. However, when we saw her again it was not as bad as I imagined! They discovered after this that Emma had an Ecoli infection and an interbactrim infection. They started her on antibiotics for it, but her tummy just got bigger and bigger.

They came and told us that they thought Emma had a bile leak. She had received part of a liver, and it is common to “miss” tying off one of the bile ducts on the cut surface. So, they went back in to correct it. When they got in there they realized there were 2 leaks, and all of the surrounding area was laying in the infected bile. When they went to move the aorta (huge artery) it tore!!!! However, the doctors calmly took a situation that could have very easily been fatal and corrected it very quickly! There was a nursing student that had gone into Em’s surgery to observe, and she told us that she didn’t even know this had happened until after the fact! They were able to “correct” everything, and although Emma’s recovery time was much longer she made it!!!

My emotions during this surgery were mixed. I remember being in her PICU room with her. They came to get her, but this time they took the whole bed and all of the machines with her. I remember the eerie silence that was in the room. But, I was hopeful, and somehow that sense of peace was still with me. Emma was able to leave the hospital 1 month after her transplant, and we were able to leave Denver one month after that. Emma did again go home on oxygen, and she stayed on it for a VERY long 7 months!!!
Whew!! That was WAY too long. If you have gotten this far all I can say is THANK YOU! Thank you for thinking about Emma during this time, and wanting to be a “part” of our journey. It truly has been a whirlwind….especially that 1st year! But, to look at her now (with clothes on) you would never know all that she has endured! Wow! Actually writing it down makes me wonder, “ how did I make it through”? But, when it is your child YOU WILL DO ANYTHING for them, and love them that much more when it is finished.

1 comment:

Anonymous said...

Wow, I commend you on your strength, you are an amazing mommy. I know that it is not easy having a child with many health needs-and all the surgeries-well I cannot imagine.

Miss E has only had one surgery which was a triple scope and not too invasive. She recovered poorly and they told me no more elective surgery in the future. Thank goodness we have not needed any.

She is such a beautiful little girl.

P.S. the potty story-wow-I can just picture this one in my mind. Got to love those potty training days :)