Sunday, July 19, 2009

A Week Without Doctors...yeah right!

A week in review Monday July 13, 2009 - Sunday, July 19, 2009 - Monday through Thursday we were doctor free and it was wonderful! On Monday morning, I took Elle for her first walk around our neighborhood and she absolutely loved it! The dogs loved it too!!

Monday evening, Lee's mom, granddad and grandmother came over to help with Elle. We usually go to our church class on Monday night, but we had to skip this one because Lee's heart monitor was transmitting all the data it had collected during the 3 weeks he wore it. Needless to say, we couldn't stray too far from the house. While we had so many helpers with Elle, I was able to work on Elle's closest. Our little chunky monkey has already grown out of some of her outfits!!

I received a phone call on Wednesday that Elle was approved for occupational therapy. So instead of a week without doctors, we went and saw the occupational therapist on Friday. Elle did wonderful and the therapist was so nice. She gave us some exercises to do with Elle to strengthen her neck and mouth muscles. We will be going back every Friday so Elle can work with the therapist. Friday afternoon, after I went into work for a few hours, I picked up Elle from my parent's house and went home to pack. We were supposed to be going to my parent's bay house in Matagorda, Texas for our first family trip. While I was driving home, I had hooked Elle up to her feeding tube. She ate while I drove home and everything was perfectly wonderful. Everything changed when I got home. Elle and I talked with some neighbors before I headed inside to unhook Elle and start packing. As soon as I unhooked Elle from the feeding tube, all hell broke loose. Elle was crying and screaming uncontrollably for 2 1/2 hours straight. I texted Lee and told him to come home as soon as possible because I couldn't get Elle to calm down and I was starting to get scared. I was crying. Elle was screaming - it was not a good situation. Lee got home and as soon as he did, I called our pediatrician's after hours line. An on call nurse called me back and really couldn't offer any suggestions so he had the on call doctor call me back. By this time, it was time to feed Elle again. We hooked her up to her feeding tube and 10 minutes in, Elle was screaming and arching her back. We stopped her feed. I was on the phone with the on call doctor and she told us to take Elle into the emergency room. The screaming and arching her back was no bueno. We decided to wait and see how Elle would react to her 10:00pm feeding because she stopped crying once her feed was stopped. Before Elle's 10:00 feeding, Lee checked Elle's tummy to see if there were any residuals in her tummy. It's one of the things we have to do with Elle's button to be sure it is in her stomach. If it is in the correct position, milk will be pulled back into the syringe. When Lee checked it - he couldn't even pull the syringe back. He re-positioned Elle and nothing came out. We immediately packed Elle up and headed for Texas Children's. We got to the emergency room at 11:30pm. We were taken to a room and several hours later, Elle was taken back for x-rays to check the position of the tube. Lee stayed with Elle while she was having her x-rays done (hence the cool pink vest).

After x-rays, we fed Elle to see if she would have the same reaction as she had earlier. She slept through the feeding.

After feeding her Lee and I noticed that Elle's toe nails were turning blue. I asked the nurse to put a pulse ox on Elle and when she was first hooked up, her oxygen saturation level was in the 60s. That warrants an emergency situation! It slowly started to come up but stayed in the low 70s. Again, that is a horrible situation. The lowest Elle's oxygen saturation level should be is 75. Because of the problems with her heart, Elle doesn't get too much oxygen rich blood pumped throughout her little body. The shunt they put into her heart when she was less than a month old helps give her more oxygen Rich blood. Because the shunt isn't growing as she grows, she will eventually outgrow the shunt and her body won't be getting enough oxygen rich blood. It will be at that point that Elle will have her complete heart repair. So - Elle's oxygen saturation level is vital. The nurse put a warmer on Elle's foot and that helped bring it up a little. It stayed around 78 for the remainder of our stay in the ER. The doctor finally came in and said Elle's x-rays looked good. The tube is in the correct place. He said just to watch Elle and give her mylicon for gas. He also told us to follow up with Elle's cardiologist because of her drop in oxygen saturation level. Her next appt is next Friday so he said that was good. We finally walked out of the emergency room at 7:00am and made it home around 8:00am. What a terrible night! During our whole stay in the ER, Elle was asleep except while she was getting x-rays. She was a perfect angel..what happened to the 2 1/2 hour screaming match from earlier?! Needless to say, our plans to go to Matagorda didn't happen.
Saturday, Lee and I took turns with Elle. Since she had a good night sleep while we were in the ER (and Lee and I didn't) - she was wide awake when we got home...and miraculously tolerated her 8:30am feed. Lee slept while I stayed up with Elle. She was wonderful! He woke up and took over while I slept the afternoon away. It was pretty much a wasted day - but Elle did great. She had such a good day - much better than Friday afternoon and evening. She tolerated all her feeds.
Sunday, Elle tolerated her 2:30am feeding. She got a little fussy - but it wasn't anything that being held by mom didn't cure. A few feedings later, I was holding Elle and all hell broke loose again. She cried and screamed for 30 minutes. I tried everything to comfort her and she finally calmed down after we turned her feed off and disconnected her. I put her in her lamb swing and she was a happy camper. We decided to hook her back up and she did great! We realized that Elle hates being held while she is eating. As long as she is in her lamb, or sitting in bed, or in her boppy - she is fine. As soon as we pick her up while she is eating - it is a super size screaming match! Once we figured that out - Sunday has been easy! Elle spent a good amount of time in her lamb swing today. She is grabbing onto things now and the toys we have hanging from her lamb swing have kept her mesmerized for hours!

This coming week we have a few doctor's visits. The one I am dreading the most is to her pediatrician for her 4 month shots. That will be horrible! I can't believe our little princess will be 4 months old on Thursday! Time really does fly by so quickly!!


ellen charge said...

sounds crazy in fact could the low oxygen b all that screaming

Jean Beyer said...

Wow, Lisha. She looks gorgeous. Hang in there through all the ups and downs. Thanks for the posts.