As you all probably know we are staying at the Ronald McDonald House in Chapel Hill, which has been a godsend for us. I have come to realize that although our situation is pretty bad, I am seeing that it could be a lot worse. I am thankful that Shelby does not have cancer or any other terminal illness and that her condition is treatable. However, I am finding it hard to stomach some of the people I have crossed paths with. I am trying not to judge and by no means do I think I am the perfect mother. However, I look at some of the other families, how they are dealing and acting and it makes me sick.
There is a free bus you can ride to the hospital from the RMH that runs every 10-15 minutes and yet some parents choose to stay at the house instead of seeing their babies. There is one woman at the house and her baby is in the PICU. The baby is maybe 2 months old if that and she chooses to try and score drugs instead of spending time with her child. Also in the house there are people who are cheating on their spouses, would rather lay around and watch tv all day while their little ones are fighting for their life. My heart goes out to these children and I want to shake the parents and knock some sense into them. I sometimes feel like it is a reality tv show and people think this is a game. I have chosen to stay away from these people and keep to myself because I know that I will say what I think and it will cause major problems. I am thankful that I am older and wiser to know when to keep my mouth shut. My theory on that is if you don't want to take reponsibility for your child you need to discover birth control and use it on a regular basis. I just keep reminding myself that some people deal with crisis differently. I only hope that these people get their mess together.
Having said that and venting a little bit, I am so happy with the progress that Shelby has made. We are hoping that the washing of the left lung with finally get her back on track and we will be able to go home soon. She is definitely my child with her little bad self and sassing everyone. The other day she wanted her recorder and kept saying bah bah bah and pointing. Billy and I could not figure it out and we were like what do you want. Shelby looked at Billy started to snap her fingers at him until he figured it out. I laughed until I had tears in my eyes. It is so great to see her getting her spunk back and I can't wait to see how well she does after the surgery.
Tuesday, January 18, 2011
Saturday, January 15, 2011
Still Hanging Out
So here it is, January 15 and we are now at the stage where we are walking all over the PICU. Shelby is definitely still and by far the most favored patient in the unit. We started to walk around on Thursday and Shelby tired out quickly but did a good job. She didn't want to stop walking and threw a fit but her legs were shaking and it just wore her out. This was the first time since Dec 23 that she actually walked around and got to stretch her legs. Yesterday she did better walking and was giving everyone thumbs up and fist pumping. This morning we got up and walked around also and she is loving the new found freedom again. She actually started to dance a little. I am so glad to finally get my little girl back.
They have scheduled the left lung washing for Tuesday. This should be the last step of major treatment for her and then we should be on our way out of this joint and headed home. Still going to take a while though so I am estimating that we will be here another two weeks.
The lung washing is a very tedious procedure. They will intubate her and stick a tube into her right lung, cuff it off and that is the lung they will use to ventilate her for the procedure. Then they will go through her nose and stick a tube into her left lung and start to flush it. They will use 10 ml normal saline at a time, do chest pt to shake it up a bit and suction that fluid back out. Last time they used 1500ml of saline and was able to get 1485ml out which is very good. The doctor said that there was a lot of white mucous stuff in the bottom of the jug where they suctioned it out. The procedure takes about 4 hours and the most difficult part is to ventilate her to make sure the cuff stays in place. The last thing they want is for the ventilated lung to fill up with fluid.
They also have big plans for Shelby after the procedure. Speech has been involved with her this hospital stay and they are planning on doing a swallow functioning test after the procedure to make sure she isn't aspirating when drinking. I think her eating issues are slowly starting to correct themselves now that she can start breathing good. Also we have alot of physical therapy to do yet. I must say that I will expect her to go home on some oxygen until her little lungs are stronger.
As for now, they are trying to lower her oxygen to see how strong her lungs are before they do the procedure for Tuesday. We also got moved to a bigger room. The other room we were in was right beside the door and it has interrupted Shelby's sleep. Now we are in a bigger room with a better view and life is getting to be very good.
They have scheduled the left lung washing for Tuesday. This should be the last step of major treatment for her and then we should be on our way out of this joint and headed home. Still going to take a while though so I am estimating that we will be here another two weeks.
The lung washing is a very tedious procedure. They will intubate her and stick a tube into her right lung, cuff it off and that is the lung they will use to ventilate her for the procedure. Then they will go through her nose and stick a tube into her left lung and start to flush it. They will use 10 ml normal saline at a time, do chest pt to shake it up a bit and suction that fluid back out. Last time they used 1500ml of saline and was able to get 1485ml out which is very good. The doctor said that there was a lot of white mucous stuff in the bottom of the jug where they suctioned it out. The procedure takes about 4 hours and the most difficult part is to ventilate her to make sure the cuff stays in place. The last thing they want is for the ventilated lung to fill up with fluid.
They also have big plans for Shelby after the procedure. Speech has been involved with her this hospital stay and they are planning on doing a swallow functioning test after the procedure to make sure she isn't aspirating when drinking. I think her eating issues are slowly starting to correct themselves now that she can start breathing good. Also we have alot of physical therapy to do yet. I must say that I will expect her to go home on some oxygen until her little lungs are stronger.
As for now, they are trying to lower her oxygen to see how strong her lungs are before they do the procedure for Tuesday. We also got moved to a bigger room. The other room we were in was right beside the door and it has interrupted Shelby's sleep. Now we are in a bigger room with a better view and life is getting to be very good.
Thursday, January 13, 2011
Update 1/13/2011
It is hard to believe that this is the start of week 3 for us at the hospital, but it is and this is our reality. We are still trying to hang out in the PICU and stay stable so they can hold off on washing her left lung until next week when her doctor gets back from a conference. Shelby is doing pretty good except yesterday she had a bad day. Started out with her telling me NO NO NO everytime we had to do something. Then it escalated to her trying to hit me and kick me. I looked at her nurse and told her that Shelby needed some quiet time. I turned off the lights and in no time she was fast asleep. Then a doctor came in and woke her up and she was worse after that. Finally, her nurse put a sign on the door and we banned everyone from coming in the room, including doctors. After a 2 hour nap she woke up and was still in a mood and this time she acted like she wanted to swing at the nurse. I got in her face and told her if she didn't start to act nice I was going to spank her. The nurse looked at Shelby and told her that she was going to make mommy go bye bye since she was so mean to me. The nurse actually kicked me out of her room. She told Shelby she was trying to save her from a spanking. I thought it was funny and for all of those who know me personally know that I will not tolerate that behavior and I will beat that ass! So I came back about 30 minutes later and she was asleep. Then her Daddy walks in and she is a perfect angel which just makes me want to choke her :). I know what you all are thinking : "Poor Shelby... she has been through so much she deserves to have a bad day... blah blah blah" . As I told Billy, I may not be able to control her health issues and make her healthy, I know she is spoiled and that other people will spoil her just for the fact that she has been through so much. But, I refuse for her to act like a spoiled little brat. She is going to have these health issues all of her life and that does not give her the excuse to act like she has no home training. It made me feel good when her nurse looked at me and said I was doing a good job raising her.
So after sleeping all day yesterday, Shelby decided she was going to stay up all night and party like a rock star. She stayed up until 2am. She is in the PICU because she needs special oxygen requirements and she is by far the healthiest child in here so the nurses just eat her up. Especially when she is talking, laughing and carrying on. Today should be interesting to say the least. I hope no one wakes her up today but we will have to see how it goes.
As for the health issues, everything is staying the same. They are keeping her on the same oxygen levels and monitoring her hemoglobin to make sure she doesn't need any transfusions. Every one is anxious to do the other lung washing so we can see how well this actually works for her and hopefully we will be on the downward slope and will soon be able to go home. Today physical therapy is going to come and get her walking around some, hopefully they will come this afternoon and not in the morning.
This morning all of her previous nurses have come in to check on her and to play with her. I am glad that they all love her so much and that she is their favorite. It is cute how they have nick named her and fight over who gets to take care of her today.
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