Thursday, April 2, 2009

Nostrils to Nowhere

Thursday, April 2, 2009 - Elle didn't have surgery today. Lee and I met with Dr. Morales, the doctor that will be doing the surgery this morning around 10:00am. Because of her white blood cell increase and the fact that she had a really bad afternoon yesterday, the surgery team decided to bump her until next week. She is stable and not considered an emergency situation. Dr. Morales was extremely nice - he took us to the conference room to discuss Elle's situation. He drew a picture for us to see exactly where Elle's problems are in her little heart. Her nurse today (the wonderful Andrea who was such a rock yesterday when Elle had her "episode") taped it to the end of her crib so she could be like the other cardiac babies in our area. They all have their drawings taped to the ends of their cribs. Dr. Morales explained how the surgery would go - exactly what he would be doing and what we should expect. I will write tomorrow when I am looking at the picture to explain the disease Elle has and how he is going to fix it. He said that surgery would be early to mid next week. Lee and I spent the rest of the morning with our little Elle Belle. She was extremely active all morning long and her vitals were stable which is awesome. I think Lee and I might have created a monster in trying to get her to take her binky. This morning and afternoon we had to take tuns holding it in her mouth so she wouldn't get mad. I hate to watch her heart rate race on the monitor when she gets upset. Around lunch time, Lee and I tried to sneak away to go and eat. Elle gave us the most pitiful face and we just couldn't bear to walk away from her - so Andrea came up with the ultimate pacifier rig. Nurses are so resourceful! She rolled up a towel and then kept it in place with her giraffe! I loved it and had to catch the moment on camera. To our amazement - the rig worked until we got back from lunch and by that time the doctors were messing with Elle so she couldn't have her binky anyways. Lee left for work after lunch and Elle and I spent the rest of the day realizing the miracles of the Lord. Because of the traumatic experience of yesterday and all the blood the doctors had to take - Elle was given blood today - a lot of it. It made her go from the color of her white sheet to the color of a normal baby. It was so good to see her get some more color! Dr. Davis, the kind doctor form yesterday, took out Elle's bellybutton IV after Andrea started a new IV in Elle's foot. The new IV in her foot is where they will take blood from Elle and it is also where she is getting the antibiotics to ward off any sort of infection. She still has her PICC in and she is getting her PGE (to keep her heart pumping), her supped up Gatorade and lipids all through this line. Her supped up Gatorade and lipids are the only form of nourishment she is getting right now. The Cardiologist reassured me that they will start feeding her milk tomorrow. they wanted to make sure she had a good day today - plus they had to stop feeding her yesterday thinking she was going in for surgery today. One of the things that happened yesterday that I didn't note in the last post (because we weren't sure of it's significance) is that when Dr. Nelson tried to put a breathing tube down Elle's nose (instead of down her throat) - he noticed a blockage in her nose. He couldn't get a tube down her nasal passage. They requested that an Ear, Nose and Throat doctor come and take a look at Elle. Right now I am praising the LORD for the horrible events of yesterday because had yesterday not happened, the miracles of our baby would not have been found. The ENT came down this afternoon and looked at Elle's nose. She has bilateral cohanal atresia which means that she basically has nostrils to nowhere. She has a complete blockage in her nasal passage way. Here is the amazing part - the part where the miracles of our Lord are seen - Elle can't breathe out of her nose. When she was born, no one knew about Elle's nasal condition. They had a C-Pap on her little nose which just gently pushes air into the nose. The air was going nowhere and somehow - our little angel survived until 11:00pm last Monday when she had her seizure and had to be intubated. Babies aren't supposed to breathe out of their mouths until they are around 3 to 4 months old. Our baby was breathing out of her mouth for the first 3 1/2 hours of her life before she just couldn't do it anymore. That was truly the Lord - holding her in his hands and keeping her fighting for her life. When she had her next episode last Thursday, she had a C-Pap on for 3-5 hours. When I told the ENT doctor about her being extabated last Thursday - his response was "she shouldn't have lasted that long - it should have been more like 3 to 5 minutes. She can't breathe out of her nose." I forgot to tell him about the episode from her delivery - Lee reminded me about the events of that day this evening when we were discussing the situation. Then yesterday's episode happened. I shutter to think what would have happened after surgery had the episode from yesterday not occurred. After the surgery, the cardiologist would have extabated Elle so she could start breathing on her own. She wouldn't have been able to do this because of the blockage in her nose and she wouldn't have the breathing tube down her throat. As bad as yesterday way, it was the Lords way of showing his amazing control. He truly is in control!! I asked Dr. Edmonds, the ENT, what our options are. We have 2 options to fix Elle's nose. The first option is for Dr. Edmonds to go into Elle's nose and drill 2 holes where they should have been. He would then insert 2 stints to keep the holes open as her nose heals. After 6 weeks he will take the stints out and hopefully Elle won't have to have anymore nose surgeries. He said the worst part of this surgery is the cleaning of the stints. That would be my job. Our other option would be for Dr. Edmonds to put in a Tracheotomy. Dr. Edmonds will know for sure what Elle's situation is after he runs a cat scan. This will hopefully take place tomorrow. I asked him when surgery would be and he said it would most likely happen next Thursday. He also said that cardiology will not operate on a baby if the baby can't be extabated - which means that Dr. Edmonds now is in control of Elle. Cardiology is now at ENT's mercy. Since Dr. Edmonds thinks her surgery will happen next Thursday - Elle won't have her heart surgery for at least another 2 weeks. Two of the cardiologist came by Elle's bed after Dr. Edmonds left. I told them about our conversation and they told me that they will bring up everything in their surgery meeting on Monday and they will invite Dr. Edmonds to come in and give them his information. Praise the Lord for the findings of today! Everything happens for a reason and the Lord is truly in control of our situation!!


bessie16 said...

Lisha- will or does Elle need more blood can we donate in her name? I know that I would love to please let me know if you guys need this, would love to help anyway I can. You are in my prayers. You are incredibly strong!!

mrsrubly said...

hello. i have come here from the hoyt's blog. i will follow and become a prayer warrior for Miss Elle. i live in Katy as well. if you need anything, consider it done. praying for ya'll.