So, before we left for vacation, we found out that Caylee, our 2 year old daughter had been suffering with a UTI (urinary tract infection) She was put on antibiotics before we left and our doctor told us that it was very uncommon for a child her age to be suffering with UTI's. So the week before we left on vacation, the dr called us and said that the urine sample we dropped off showed that she still had the UTI! He told us he wanted to run a couple of non invasive tests on her and it would have to happen at the hospital. The first test was just a kidney ultrasound. The next test is called a VCUG, basically what they do is stick a catheter inside of her and fill her bladder with a dye until it is almost over filled. They said it would be painful and then very uncomfortable because she will need to pee so badly and can not relieve herself for an hour while they take xrays to see if all her valves are working. After hearing this, I was VERY upset and demanded that they give her some kind of sedation so she is not freaking out screaming for an hour in terror! He said that was fine and he would call the hospital and handle it! He then prescribed a new antibiotic and then we left for vacation for a week. She finished the meds while we were out of town.
August 20th~ It was the Monday after we got back from vacation and I had my ultrasound for my gallbladder. By this time, I had worked myself into thinking my liver was shutting down on me and that was what the pain was. (The gallbladder sits right underneath the liver and is attached to it by a tube, yes that is my scientific word for it! LOL!) Knowing that Caylee had her tests the next day, we decided it would be best if Jon went to work because I really needed him the next day for her. I can handle what they are throwing at me, but I am a blubbering mess when it comes to my kids! So it was just me and my mom that day. I had the ultrasound done and luckily I had a great tech. She said with all that is going on in my life, she wasn't allowed to technically diagnose me but she pretty much told me she had found gallstones! So I was relieved! She said the dr would call me within 2 days to let me know.
August 21st~This was the day we were dreading for 2 weeks. The day we went to the hospital with Caylee and did the kidney ultrasound and the VCUG. Here are a couple of pics from that day
This is Caylee getting a ride to her first test, the kidney ultrasound
This is Caylee checking out the machine. The tech was very good with her and let her hold the "Magic Wand and everything, so she could see it wouldn't hurt her!
She was not too sure about this ultrasound stuff, but she didn't shed a tear! She had her blanket and Ariel to keep her company!
This is Caylee and Daddy playing with anything they could find before we had to take her in for the VCUG!
Let me start by saying, I prayed long and hard about this VCUG test! We called CHOC hospital to see if doing this test so quickly after only 1 UTI was overkill, they said no!! They do it everyday to 2 year olds! So, I was ok with it as long as she was getting the sedation. We walk into this room with a huge table and machine and are ready to hand her over. The radiologist starts showing me everything for the test, the catheter, the 2 bottles of dye and then proceeds to tell me how horrible it is going to be for her. I stayed strong. Then the head of the radiology department tells me that it is not St Jude's policy to sedate anyone her age!! So I said, "fine, I will call my Dr and he can tell you its ok to sedate her!" He refused, so, I then refused the test!! We scooped up Caylee and walked out! As we were leaving the 1st radiologist (the lady) said, "You are making the right choice, especially if this is only her first UTI!" I felt confident in my decision and still do! We went home and I was very relieved it was all over!
The next day, I get a call from Dr D's office saying I need to come in and go over the results of my ultrasound. We set it up for Thursday the 23rd. I ask the receptionist if they had found gallstones and she said yes. I said, "So, I will be having surgery soon?" she said, "I think so, but he will go over that at the appointment." I said, "The reason I am asking is because I am supposed to go back to chemo on Tuesday and I need to know whether to cancel it or not!" She said, "Oh! I would imagine that you are going to cancel it, but lets let Dr D handle that!"
August 23rd~ Jon and I went to Dr D's office and he let me know that they found gallstones. Then he said I will be doing the surgery because with Avastin, it would be really bad for me to need emergency surgery if i couldn't pass a gallstone or if my gallbladder got infected. So I figured my surgery would be around September 15th or so! He asked me when my last chemo was. I said this is my 3rd week off of it! He said, "WOW, AWESOME, Your surgery will be on Wednesday or Friday of next week!" My jaw hit the floor! I was not ready for that at all!!I was thinking the middle of September sometime! He gave me my surgery packet and we agreed on Friday the 31st because Wednesdays are early days at the school. Then he made my pre op blood work for Wednesday the 29th at 8:45 am! He asked if I had any questions and then left!
August 27~I had an appt with Dr Paneres just to touch base with everything and get him informed on the surgery and everything He actually surprised me as much as Dr D! He told me he wanted me back on chemo on the 11th of September! WHAT?? I THOUGHT IT WAS LIKE 6 WEEKS AFTER SURGERY!! I already planned a Disneyland trip and everything! but nope!! He wants me back on chemo 10 days after surgery! He said he will just not add avastin on! So I come back to the cancer center on the 10th with chemo on the 11th!! Still going to take that Disneyland trip on the 21st!
August 27th~. We get home from seeing Dr D and I get a phone call from Dr Kim saying Caylee needed to come in and get her report read from the Kidney ultrasound. He also said that she STILL had the UTI and when we came in, he was just going to get a clean specimen by using a catheter! I really wasn't too worried because I had tons of catheters in me while I was in the hospital and it was no big deal! So he said he wanted us in ASAP, he said that that day was not good because he was already booked. So I mentioned Tuesday.... Nope, he was out that day! So you guessed it he made the appointment for Wednesday the 29th at 10:15am, so I have just enough time to get to my appointment and jam home to pick her up for her appointment. I hang up the phone and start to cry.
God says he won't give you more that you can handle, let me tell you, I am reaching my point!! I call Jon and he calms me down! He tells me he will take a FMLA day and go with me to all my appointments. We really are struggling financially, we are behind a couple months on rent and don't even BOTHER looking at the medical bills as they come in! We are barely keeping our heads above water. I am sure a lot of you are saying, "Well, they can afford a vacation and a jam packed summer!" This is true, we scraped together enough money to do a lot of fun things this summer. BUT... Remember, I was told that I am terminal, whether God wants to take me for sure or heal me that is up to him. Right now, my kids deserve all the memories and fun they can get. They are at their boiling point also! They deserve to forget all this that is happening and just have fun like a normal child!!
August 29th~ So we jam to the Outpatient center for St Jude and we get there and we are the only ones there!! So I get my bracelet and they call me back. So the nurse comes in and puts a tourniquet on me and I ask, "Why don't you just use my port, its easier because I have horrible veins!" She told me that she would have to find a different nurse to do it, because she doesn't know how to access a port! So she finally found a vein after about 15 minutes of slapping me in different places (LOL) and then she got the needle in me and that was it!
Then we ran home and picked up Caylee! We headed off to her dr appt. I thought this was going to be a hard appointment, but I had no idea how hard! We get there and get called back and the head nurse, Darlene, said, "Oh! He wanted you guys to come in anyways?" I said, "What are you talking about?" She said, "Didn't the dr call you, we have no catheters right now!" Are you kidding me? Jon and I just looked at each other so annoyed with the whole day. So she said she would go talk to the dr and see what he wanted to do. She came back and the dr told her to go get a catheter from the hospital. So she ran and got one and we waited about 45 minutes in the room. She came back and took Caylee's vitals. Then, the dr came in and showed up the lab results proving she still had the UTI. He then set up for the catheter procedure. We gave Caylee my phone to play the games on it to hopefully get her zoned out where she wouldn't even get what was going on. As soon as the Dr wiped her with the beta dine, she started screaming. He was very calming and let her know he was only cleaning her, he told me she was not in any pain at all! Then he took out the catheter! It was HUGE!! Jon even made a comment that the Dr better never come at Jon with that thing!! He ignored Jon's comment and then he tried inserting the cath into Caylee, he tried and tried and it was a no go!! She was screaming and looking at us in terror! It was the most horrible 10 minutes of my life! So the Dr is totally flustered at this time and he pulls out and says, "OK! You're done! I can't get it! I said, "Well since she is totally clean down there, lets get a clean catch just with the cup right now!" He agreed it was a good idea and we did it! Right away the urine test came back that it was STILL a UTI. So we were prescribed another 14 days of antibiotics and she is being referred to a pediatric urologist through CHOC hospital! As we walked out of the office, I just started crying! It was way too much for me!! I just couldn't wait to get away from that place and get home. So now we are just waiting to hear back from him so we can get her into the specialist!
After we got home from her appointment, we started calling different counselors that the insurance gave us! The problem is, not 1 of them advertised that they were Christian!! So I finally found 1 counselor I REALLY think is a great fit for our family! The problem is, I don't think she is on the list that insurance gave us. We will be calling today and seeing if they will cover the sessions!
Tomorrow morning I have to be at the hospital at 9:50am! My surgery is at 11:50am! I should be done within 3 to 4 hours and then home bound! I really want to get home by the time the boys get home from school! Also, Jonny has a soccer tournament the next day and I REALLY don't want to miss it!
So that is it! You are all pretty much caught up! Please pray for Caylee! I need this to be over! I can NOT concentrate on myself with her being sick too! Pray we find a Christian counselor to help us through all of this. We are all at our breaking point and need someone who will give me Godly advice. So far all the grants we applied for denied us and the one that approved us (that was supposed to pay Caylee's preschool bill monthly) ran out of money and could only give us $100! It was a blessing! But we were expecting to have a $250 a month bill eliminated!! Also, pray for my surgery! I just want to be back on my feet as soon as possible! Remember to keep praying, the Lord is listening!!
God says he won't give you more that you can handle, let me tell you, I am reaching my point!! I call Jon and he calms me down! He tells me he will take a FMLA day and go with me to all my appointments. We really are struggling financially, we are behind a couple months on rent and don't even BOTHER looking at the medical bills as they come in! We are barely keeping our heads above water. I am sure a lot of you are saying, "Well, they can afford a vacation and a jam packed summer!" This is true, we scraped together enough money to do a lot of fun things this summer. BUT... Remember, I was told that I am terminal, whether God wants to take me for sure or heal me that is up to him. Right now, my kids deserve all the memories and fun they can get. They are at their boiling point also! They deserve to forget all this that is happening and just have fun like a normal child!!
August 29th~ So we jam to the Outpatient center for St Jude and we get there and we are the only ones there!! So I get my bracelet and they call me back. So the nurse comes in and puts a tourniquet on me and I ask, "Why don't you just use my port, its easier because I have horrible veins!" She told me that she would have to find a different nurse to do it, because she doesn't know how to access a port! So she finally found a vein after about 15 minutes of slapping me in different places (LOL) and then she got the needle in me and that was it!
Then we ran home and picked up Caylee! We headed off to her dr appt. I thought this was going to be a hard appointment, but I had no idea how hard! We get there and get called back and the head nurse, Darlene, said, "Oh! He wanted you guys to come in anyways?" I said, "What are you talking about?" She said, "Didn't the dr call you, we have no catheters right now!" Are you kidding me? Jon and I just looked at each other so annoyed with the whole day. So she said she would go talk to the dr and see what he wanted to do. She came back and the dr told her to go get a catheter from the hospital. So she ran and got one and we waited about 45 minutes in the room. She came back and took Caylee's vitals. Then, the dr came in and showed up the lab results proving she still had the UTI. He then set up for the catheter procedure. We gave Caylee my phone to play the games on it to hopefully get her zoned out where she wouldn't even get what was going on. As soon as the Dr wiped her with the beta dine, she started screaming. He was very calming and let her know he was only cleaning her, he told me she was not in any pain at all! Then he took out the catheter! It was HUGE!! Jon even made a comment that the Dr better never come at Jon with that thing!! He ignored Jon's comment and then he tried inserting the cath into Caylee, he tried and tried and it was a no go!! She was screaming and looking at us in terror! It was the most horrible 10 minutes of my life! So the Dr is totally flustered at this time and he pulls out and says, "OK! You're done! I can't get it! I said, "Well since she is totally clean down there, lets get a clean catch just with the cup right now!" He agreed it was a good idea and we did it! Right away the urine test came back that it was STILL a UTI. So we were prescribed another 14 days of antibiotics and she is being referred to a pediatric urologist through CHOC hospital! As we walked out of the office, I just started crying! It was way too much for me!! I just couldn't wait to get away from that place and get home. So now we are just waiting to hear back from him so we can get her into the specialist!
After we got home from her appointment, we started calling different counselors that the insurance gave us! The problem is, not 1 of them advertised that they were Christian!! So I finally found 1 counselor I REALLY think is a great fit for our family! The problem is, I don't think she is on the list that insurance gave us. We will be calling today and seeing if they will cover the sessions!
Tomorrow morning I have to be at the hospital at 9:50am! My surgery is at 11:50am! I should be done within 3 to 4 hours and then home bound! I really want to get home by the time the boys get home from school! Also, Jonny has a soccer tournament the next day and I REALLY don't want to miss it!
So that is it! You are all pretty much caught up! Please pray for Caylee! I need this to be over! I can NOT concentrate on myself with her being sick too! Pray we find a Christian counselor to help us through all of this. We are all at our breaking point and need someone who will give me Godly advice. So far all the grants we applied for denied us and the one that approved us (that was supposed to pay Caylee's preschool bill monthly) ran out of money and could only give us $100! It was a blessing! But we were expecting to have a $250 a month bill eliminated!! Also, pray for my surgery! I just want to be back on my feet as soon as possible! Remember to keep praying, the Lord is listening!!
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