All of us at the pool!!!
After this posting.... I am going to change this web site into the family one and just keep caringbridge as Khloes medical issues. :) The caringbridge site is: www.caringbridge.org/visit/khloesassman
We met with Dr Davis today. He is from Cardiothoracic. He explained his part of the procedure. He will be the one putting Khloe on the heart-lung bypass machine. He said he has to move her heart out of the way and help with the cutting of her chest. He explained the risks to us. He told us that if Khloe doesn't have surgery, she has a 4 out of 5 chance of dying. He said that if she does have the surgery, then there is a 1 out of 5 chance of losing her. He said that she is slowly suffocating as her wind pipe is smaller than a coffee straw. The normal size for her age is almost 3 coffee straws put together. That really put it into perspective for me. I was trying to fight back the tears when he was telling us infomation about the surgery, but I had a few tears running down my face. I quickly apologized to him and he said, "You know what?? If you didn't cry and wasn't scared... I would think you didn't understand how scary this procedure was. He said.. I know you understand.' He also told us that he has next week Wed and Thurs open and the following Wed and Thurs. So any of those days would work for him for surgery.
We then went to see Dr Smith. We had a few questions about the surgery and he was able to answer them. One of the questions was that a normal person with "C" shaped rings, has membranes on the open side that help it expand. Well, they cannot make membranes and they are closing it all back up..... so how is it going to expand with her. He explained that the part they are cutting out of her windpipe and then patching it back together with that part.... they are going to turn inside-out. He said that it will stick out more and give more flexibility. I also asked if the rings can grow together again. He said that they can on rare occasions and that she will have to be checked yearly for the rest of her life as to how it is going. They had us sign consent forms for the surgery and went through everything with us. Dr Smith said that one of the reasons he wants this done before August is.. he is leaving for 5 days and he wants it over by then. He said that Khloe will still be in the hospital but his partners will take over.
Dr Smith then asked us if we wanted to meet the other family. Lenny immediately said, "Yes, please". Dr Smith said that he asked the family last week if they would talk to us and that they have told them about us and some of Khloe's other issues and they said that they would love to talk with us. So, after everything was signed Dr Gooi took us up to PICU. We met with Brailynn's mother. (Her name is Staci also. Wow!) She then took us into the room to see Brailynn. My heart hurt when I saw her.... They say that she is doing good and that she might be able to get out of PICU this week. She tried to cry and it was so soft. I asked her mom if that was because of just getting off the vent a week ago. She said, No, her vocal cords are paralyized and that is how is cries now. She said that it happened during surgery and Dr Smith said that 70% of the time they heal. It could take 5 wks or 5 yrs but it could come out of it. Oh that poor girl. I wanted to cry for her. Staci told us many things that we didn't know and I think her insight was VERY helpful. We were in her room for an hour. I asked if I could sleep in the room with khloe when we are up there and she said 'yes, but they do not advise it. When the nurse came in, Staci told her that I wanted to stay in PICU with Khloe when she has her surgery. The nurse said, You sure can but we tell parents not to, as these machines go off all the time. The IV, the breathing machines, the drain tubes, the oxygen levels, and all the other ones. She said that no one can get a full nights sleep. (I didn't have the heart to tell them that I do not have $15 a day for the rooms that they have for parents. They also charge $15 a day for parking. So, $30 a day total for both and take that times 30 days. That is $900. My money has to go to gas/parking/food.) I am sure it cannot be that bad to sleep in the room with her.
The nurses were real sweet up there and came in and kept talking to us and telling us things. They asked Khloe if she was gonna come be a patient of theirs.. she just smiled at them. :) It is really neat as Khloe can have visitors after the 3rd day, so her brothers, sister, nephew and cousins can come and visit. (Others can too) They told us that they give each room 2 tokens a day to be able to go into the family lounge and get a pop and chips or candy bar. Walmart sponsors that. They said that there are times that people/places bring 2-3 boxes of donuts and put them in the family lounge for the parents of kiddos in the PICU. I never thought how much a box of donuts or cookies would mean to a family whose child is in PICU. It makes me think twice about how many times i have donated to the foundation at Wal-Mart and how easy it would be to bring donuts/cookies or anything up to a PICU anywhere.
So right now, we are waiting for a call from the schedulers as to when pre-op will be as she needs to have blood work done and everything else that goes with pre-op. They will also tell us at that time when the day of the surgery will be. She is to call us this week.
Oh, I almost forgot... Khloe went to her audiologist on Friday and her hearing did NOT get worse. It didn't get better but we are sooo happy that it didn't get worse. YEAH!!!!!! She also got a tooth on the top of her cleft. So, she has 3 teeth now. :)
When we got home from Iowa city tonight, Judy Lauterbach had brought us supper. It was so nice to not have to think about making that after a long day in Iowa City! Thank you soo much!
We know with all of the thoughts and prayers going out for Khloe, that she will be ok. God has her wrapped in His arms. It is just hard not to think of the "What If's...
Please keep passing her Caringbridge out, please. Prayer Chains, friends or anyone. We need all the prayers for her that we can get. We are soo happy that God gave her to us. She is an amazing girl and such a fighter. God could not have given us a more perfect child. God has a plan for her.. I just wish God gave us those answers right away... :) We went as a family to a family aquatics center this weekend as we promised our kids last weekend we would. There was a girl about 9 yrs old that asked about Khloe and her cleft. Instead of just staring at her like many do, this little girl, was full of questions. She looked at Lenny and said, She is such a special girl and so pretty. She is soo right. She is a special girl and her problems just show how special and how much of a fighter she is. Thank you for keeping tabs of Khloe Lane.
We have an appt with Physical Therapy Friday in DSM and then Monday she goes back to Pulmonary in Iowa city for a 2pm appt for see how the neb treatments/inhaler and percussors cups are doing. i will update as soon as we hear from Iowa City as to when the surgery date is. They are to call this week.
Thank you for thinking of us and praying for her
UPDATE:: SURGERY IS JULY 21st!!!!!!
1 comment:
oh my gosh that picture at the pool is hilarious. They do not look real happy to be posing ;-)
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