Dealing with the stress...

Once again, here we are, and Emma is doing great and I find myself picking up my pieces or at least trying to. This last episode in the hospital, with Emma's lungs starting to collapse, really scared me. On Saturday, I thought we could loose her. I mean these two little pieces of her body that were supposed to work weren't working....they were shutting down. Now she is doing great and I find myself a mess. I know this is usually how it works but I'm still not used to it. The adrenaline carries you through, then she gets better and you crash. I'm hoping this "down" time isn't too long. Her surgery went well and she is really thriving. Her sats yesterday before surgery were fabulous...between 96 and 100. That is really good! I think today her walking is more steady and she is babbling more. She seems much happier! I'm so grateful for her doctors and nurses! Her pediatrician is incredible and is the one that found this problem with her ears. If it were missed, the growth/infections could have eaten her ear drums and left her with no hearing. We are so very grateful. God seems to always have a plan and put stuff in our paths that we could have easily missed had His hands not been guiding us. We are very grateful to God that we are still holding our baby girl!!! She is a blessing to us!

Emma's surgery went very well. They removed 4 cholesteatomas from her ears along with very thick fluid. Some of the thickest he had seen. He also put tubes in. She is doing very well with the help of Tylenol. Hopefully we'll see an increase in her verbal development now that she can hear. Enjoy the pictures!!! The bottom one - she is riding in the wagon waiting to go back to surgery.

We have to arrive for Emma's surgery at 8:15 a.m. I'll let you all know when we are done and how things went.

Evidence that she does eat...

Checkup

Emma had a check up on Monday. She sounds good and weighs 15 lb. 15 oz. She is doing really well and is a very sweet girl! She will be having ear surgery next Thursday, February 25th. They will be getting rid of her Keratin Pearls and will also be placing tubes to get rid of the fluid. Unfortunately, we have to do things a little backwards. We need a CTscan to know the extent of the surgery but as long as she has fluid they can not get a good read as to how extensive the keratin pearls are. So the only way we can do it is the way we are doing it. Which only means, that we might have to have another surgery once we can get a CTscan if the Pearls go into her bone mast or beyond the middle ear. It's complicated but we have no other options. And the first surgery should not be a big deal so that is good.

Other than that, we are just winding down from everything being in the hospital. I hope I regain some energy soon. : )

Please keep my friend, Megan, in your prayers. She is getting a new heart as we speak. It is from an 18 year old so I'm sure there is heartache there too. We need Megan's new heart to work and for her body to accept it. They said they usually know within 24 hours. Thanks!!!

Emma is home now and doing great!!! Thanks for all the prayers! She did have pneumonia in both lungs and bronchialitis. Doing great now! Enjoy the video!

Much better...

Emma is off of oxygen. What a week this has been!!! It has been extremely difficult and trying and I'm glad it is almost over. She will probably be coming home tomorrow. Yesterday, things were not looking good. We discussed giving her one more day and restarting lasix and then if no change we would start steroids. But with a few changes that morning - a new cannula and Emma's 4th feeding tube coming out, she improved tremendously. She fell asleep in my arms and for two hours I stood holding her watching her sats and timing how long she was satting 99/100. The nurse was great and kept weaning her down. My arm hurt so much but there was no way I was going to move and chance waking her up. In two hours, Emma went from 8 liters of oxygen down to 2 liters. Overnight she was weaned down to 1/4 liter. This morning we weaned her the rest of the way off. The doctor said her lungs were very clear with no crackling sounds. We are so thankful she has pulled through. Thanks for all the support! I'm very tired and need some time to recoup but I don't know if that is going to happen. : ) Hopefully she'll be home tomorrow. Thanks again for all the prayers!

The same...

Not much to say...there is no change. She was in better spirits towards the end of the day though. She would throw her toys on the floor and watch daddy pick them up. I know I got a lot of pleasure watching that one. : )
I hope to see some improvement soon. 7 liters of oxygen at 90% is not good. We can't let her lungs get damaged worse than they are. I have some questions for the dr. tomorrow about some options...please pray that we know what to do.
I feel better after a very stressful day. I was able to talk with some good friends to help me with some of the issues I've been having and I do feel better. I hate to vent frustrations out on other people but it does help just to be heard. Please keep praying that Emma's lungs will heal. I'm getting concerned as the days go by that there is no improvement.

Step back...

We started the day improving on oxygen...then it went downhill. She is not happy and that is hard on me and then I feel guilty for feeling that way. I'm tired and frustrated. I've broken down several times today. She is very frustrated going 5 days without eating and not feeling well. I can't blame her. I just wish I could feed her. They suctioned out one of her lungs today...it had blood in it. I don't know if that set her back or if they turned down the oxygen too much and it sent her back up...I don't know. And there is nothing I can do about it. I hope tomorrow is a better day.

quick post...

Quick post because I'm exhausted...

Emma is holding about the same today. We had a rough day of a girl not feeling so hot. She is hungry...I can't even drink a water in front of her without her throwing a fit. I can't even put her down so I can eat because I can't eat in front of her...it is too much torture. Anyway...they put in a NG tube (to feed her) at 11:00 a.m. They took an x-ray. It wasn't positioned where they wanted so they came back and redid it. Then we had to wait on another x-ray. So we were able to start the continuous feed at 6:00 p.m. The bad thing is they are bypassing her gut and going straight to her intestines because of the type of respiratory support she is on so bottom line - she is still hungry. The good thing is she is on pediasure which is 30 calories vs. my 22 calorie Enfacare. So that is a good thing. I would LOVE it if they could put some weight on her. However, she'll probably just be making up the weight she has lost since she has been here with the 4 days of not eating. Oh well, at least we are turned around in this area.

They stopped her respiratory therapy. They felt like it was irritating her. I personally think it is helping her but I do it during the day so I don't feel that she needs any more. She loves it when I do it and I think it is breaking up a lot of the crap in her lungs.

Emma is still on 8 liters of oxygen so we'll see what the night brings us. It is just going to take time for her lungs to shake this. She is not as labored and that is good. Her respiratory rates were very high yesterday and before ...like above 80 breaths a minute. They should be 20-40. Today they were pretty well under 60 so that is better.

I need sleep so I'm going to sign off now. Thanks for everything!!! I'm sorry I'm not returning every call and text but I do appreciate them all. Love you!!!!
Bethany

Emma...Emma...Emma......

So all this started very minor and quickly...
Wednesday Emma had just a little runny nose and a tiny cough...no big deal. And nothing consistent. She was wheezing a tiny bit so I was giving her her breathing treatments which is also a stimulant. So afterwards she was just playing and playing. Not lethargic by any means. Thursday night I noticed her retracting a little bit - she had her shirt off and when she breathed her skin went in between her ribs. So I gave her another treatment and then another one in the morning. But it was still knawing at me. So I called the dr. and she wasn't going to be in til the afternoon so they told me to go to the ER. I didn't think she was that bad but I took her in. They did an x-ray and by that time she had a temp of 101. At that time, they told me she had pneumonia in both lungs and they were going to admit her. Later I was told that pneumonia is usually in a more concentrated area and Emma's was not. Emma's was all over both sides - very cloudy and wet. So they are now calling it broncialitis. The dr. explained to me that this is just a common cold to people but to Emma - with her lungs and history - not the case. I went in on Saturday and she was so much worse. I watched her work so hard to breathe...by far the scariest thing I've seen. Her oxygen went from 1/4 liter to 4 liters over the next couple of hours. It just kept getting worse and worse. They ordered another x-ray and it was showing parts of her lungs sticking together/collapsing. They wanted her to be under more critical watch so she got transferred to the PICU. That day just got worse. By the time Mike came Saturday night, he couldn't believe she had been like that all day. I was breaking down so Mike wanted me to eat dinner in the cafeteria with him. I could not leave her when she was struggling so much. But the nurses stepped up and said they would make sure she was o.k. We ate and I cried. The helpless feeling of not being able to fix it. No antibiotics were going to fix this. She just had to wait it out and hope for the best. When we got back, the nurse had spent a half an hour with her and couldn't believe how bad she had gotten. By the time we got back, they had made several changes. One of them was to put her on a high flow cannula. This forces the air much faster and would hopefully open her lungs back up. So she was moved up to 8 liters of oxygen and 50%. She was in better spirits. The down side is she can't eat with a high flow cannula. So that much needed weight is now melting off her body. It's now 3 days, no food or drink and she is not happy about that. If she does not improve enough to get off of the high flow cannula by tomorrow, they will put an NG tube in and feed her through that. She won't like it but it will make her feel full and she will be getting the nutrition and hopefully not loose too much more weight. So that is where we are now. She will be in the hospital at least this whole week. We need her to turn the corner and start getting better. Right now she is holding steady and not getting worse. Thank you for your prayers!!! Thank you for all the offers to watch my little ones. I'm so very tired and drained. I must get some sleep tonight. I'll try to update throughout the week. Love, Mom to Emma