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Sunday, May 29, 2011

Sunday May 29 9:53

Jackson had a fair night. He slept from 9pm until 3am. He didn't wake up when they took his temp at around midnight. It was a normal temp. At 3am his diaper had leaked. The bed was soaked and he was cold. He has had round 1/3 chest vest sessions already. He  will get albuterol at 12:00. he is trying to sleep some but it is  hard with a stuffy nose. He doesn't seem quite as tired as last night but is worn out from the vest. His temp was checked in the 8 o'clock hour and it was 100.9. He has had some Tylenol. Just waiting on Jackson's body to fight these germs off.

Saturday, May 28, 2011

My heart broke on Tuesday

I went to Ava's Kindergarten program on Tuesday. Her class was very cute! I am so proud of all of her accomplishments this year. On the way home, I got a phone call from Christine. She is a mito mom that meets in our little mito mom group here in Memphis. She told me some very sad news. Emma LaCroix had passed away. Emma's mom Karrie was the first mito mom I ever talked to. We met in Indianoplis, In at a UMDF symposium. John and I went to one in 2008 shortly after Jackson as diagnosed. The LaCroix family are very near and dear to me.  I was and still am very heart broken.

I went to Emma's visitation on Friday night. Before I left, Charlotte took Jack's temp. It was 100.5. I was concerned but we had been out running errands and I thought Jackson may have gotten too hot in his car seat. We began the cool down process which includes Tylenol or Advil. I called to check on him and his temp had gone down to normal. When I got home Jack was still awake waiting on me to snuggle him. His nose was stuffy and I could tell he might be coming down with a cold. He kept me up off and on through out the night crying. At 4am I got up and mixed up the humidifier and looked for the thermometer. I took his temp and it was 101.5 I gave him Advil, fixed the humidifier and started thinking about going to the ER. I took it again 30 min later and it was 101.8. I calle mom and started packing for the hospital. Mom and I made it to the ER around 6. God was watching over us because we had a doc we've had before. She remembered Jackson and his protocol and did not waste time. Jack had an chest xray, blood drawn, and iv started quickly. We got up to a room and there was so much in and out and in and out and more sticks and in and out. Jackson was worn worn worn out!!! Respitory wanted to come in at 8 to do vest and I told them that would be to late. Jackson will be asleep and no one is waking him. They came at 6 at my request and put the vest on Jack. They seem to be short on vests so Mom is bringing Jackson's from home in the morning. I have also learned that Respitory runs on their own schedule for therapy times alway 8am, 2pm and 8pm regardless of what the patient does at home. I don't think this policy is working for them. These time will not do for Jackson. They are too close to feeding times. He will vomit if they shake him an hour after a feeding. I received some resistence to changing their time but in the end they (RT) saw it my way.  He finally fell asleep around 9. We are suctioning his nose, throat. He is on D5 for support while febrile and is being monitored. They took his temp at 11:45 pm and it is normal. I am hoping that this visit will be shorter than our last in Dec.

I know God is taking care of Jack because the resident that is taking care of Jack is the same one from Dec. that was so interested in mito went home on his day off and read about Leigh's. He remembered us and I was so glad I didn't have to pull out my mito 101 speech. One less thing...sometimes it's good not to have to explain Mito Jack.

Please continue to pray for the LaCroix family as they grieve.

Monday, May 23, 2011

Sleep experience ends in disgust.

So the last blog, I must admit I was in a little denial...
 Jackson has been having low Oxygen saturation off and on during sleep at nightfor a while. When Jackosn goes to sleep at night or even a nap I'm not sure if we will have a good oxygen filled night or not. Last Monday, Jackson's sats dropped to 84. He usually sats from 95-99 at night. Usually when and if his sats drop I wake him and his sats go up and he will fall back asleep.  Monday night was different than the other times and scary for John and I because it was a little more difficult to wake him. He also repeatedly dropped his sats. The pattern was his sats would drop, I'd wake him the sats would go up we'd go back to sleep and his sats would drop again. I also tried repositioning to make sure Jackson was in a position to make sure his airway was open. He did this from about 4am till about 6am. I argued with myself for a few days. I tried to put this incident out of my head thinking it was just once don't make a big deal out of it- try to wait until he does it again or there is a pattern. The more I thought about waiting the more I worried that next time I won't be able to wake him what if ....what if... so I decided to call the doctor to get an apt. I called and got an apt for later in June. Then thought about it and called back and told them what Jackson was doing and they got us in on this 5/20 Fri at 8am. We saw Dr. Stokes because I refuse to see Dr. Shoumacher because of his bedside manner the last time we saw him. . I told him that Jackson needed someone in Memphis on his team that could help manage his respiratory issues because obviously we can't get to TX when Jackson can't breathe.I told him we saw Dr. Smith in TX because she had experience with mito and respitory and sleep. I gave him Jackson's story, quick version of course, and the reasons we were there to see him. Dr. Stokes agreed with everything Dr. Smith in TX had recommended. He was willing to work with Dr. Smith. I was thrilled! I had been sick at my stomach thinking about having to go to this Dr. apt and the possible battle that might happen. I had already decided that if he was not willing to be on Jackson's team then we'd go find someone else. I was worried that this Memphis doc would not want to work with an out of state doc for Jackson's benefit greatly worried me. I was so happy when he agreed! God took care of the battle for me! My worry was for naught and only gave me an upset tummy. I was even further surprised that he had just returned from a convention were there had been presenters about mito and sleep disorders from the University of TX. He said he did not get a chance to read their  abstract but would get a copy now and read it. It was just thrilling to see how God took my prayers and answered them abundantly! My prayer now is that Dr. Stokes will continue to put his ego aside (realizing he doesn't know everything) for the benefit of his patients, Jackson being one of them.

Dr. Smith (pulmo TX) wanted Jackson to have a sleep study. Dr. Stokes agreed. When we left the doc apt on Friday we scheduled the sleep study for late June. I was ok with that apt. I was at peace with it because I trust that God would keep Jackson until we could get some answers. The office called Fri afternoon after we got home from ath apt, looking for me to change the sleep lab apt to Fri. Doc Stokes wanted the study done before the end of June. They wanted him to come Friday night but the spot was filled before they could get me on the phone to agree. They wanted us to come Sat, but Buddy had his birthday sleepover and I just couldn't miss that. We settled on Sunday night as the "big" night. I just had to trust that God would keep Jackson breathing through the night until we got to the study. Jackson had to be at LeBonheur at 7pm. John, Jackson and I arrived and rang the entry bell at 10min till. The door was an electronic lock and we had some difficulty getting in the door. The woman said through the speaker with an annoyed angry tone  "You have to open the door." I knew right then she was going to be a problem. I hoped that she was just an unhappy secretary and we would not have to deal with her the rest of our stay. I was wrong. We went to our room and began to get settled in. Jackson does not have BM's on his own. He has always had a difficult time having BM's. This is a little embarassing to talk about but for everyone's education about mito we've got ot get over it. Just about every kid with mito has GI issues. They are vomitting, have diarreha, constipation, won't eat , can't eat, can't get the idea. I know all of have experienced GI issues with our kids or ourselves. Now I want you to imagine dealing with those issues everyday all day, never having a break and Pepto just doesn't solve the problem. It's a part of mito and it stinks...really! We were out of enemas at home and Jackson did not get to poopie before we left the house. I stopped at Walgreens and got one and planned on giving it to him when we got to the hospital. I wish I had taken a picture of this woman's face when I told her Jackson needed to have a BM before she hooked him up with all the wires. Her face was one of shock and disdain. (I just kept thnking can she be for real?- I am here for Jackson, I am here for Jackson. She is temporary. ) Well Jackson poopied and I got him cleaned up and we were ready! Then Jackson poopied again and this time it got on the sheets and everywhere. So I went to ask for clean sheets and I got another look and some body language that she was not happy at this news. I just said "if you give me the sheets, I'll change them. " So, I did, I cleaned up Jackson and the bed -myself. Jackson was getting tired by this time but he still wasn't hooked up to any monitors. I also ended up cleaning Jackson's bed with the lysol wipes I brought with with me. Tip #1023 ALWAYS go to the hospital with Clorox or Lysol wipes. Hospitals are Nasty places. The bed and bedside table were NASTY!!!! I wiped until I didn't get black muck on my wipes. I was thoroughly grossed out when I went into the bath room to wash my hands and found a dirty sink. How did I know it was dirty you may ask? There was evidence of tooth brushing and I'll leave it at that. The mirror had evidence as well. I wiped and wiped until I felt it was clean enough to wash my hand in. She finally came in about 9 and said she it was time to get hooked up and I should put on what ever I brought to sleep in.  I got dressed and I carried Jackson to the prep room and laid him on the bed. The head of the bed was elevated for easier access to the patients head. For Jackson this means that he will slide all the way down the bed until he ends up in a crimped, bent mess. She got a little aggravated that he did this at the beginning of the process. I tried to explain but she cut me off and said she would get blankets to stack to keep him from sliding. The blankets helped, slightly. She continued on with putting the probes on Jackson's head. This wires had to be applied with strong glue. It is very similar to the glue used at nail salons when you are having a set put on. It smells bad! The techs also use compressed  air to make the glue dry faster. She scared Jackson into crying when she used the air. He started crying and didn't stop until he finally passed out from total exhaustion. She did not once try to tell him what was coming during this whole process. In the past, the techs have tried to give comfort and empty apologies to Jackson during this process. They have even tried to explain the procedure or that something may be loud, stinky, tingle, cold, etc. There was nothing form this woman. She also had the TV on the billboard music awards and would occasionally look at it. I thought it was an inappropriate show to have on especially when Mary J. Blige and Little Wheezy were singing (if you can call it that) and there were more bleeps than words. I just made a mental note and decided that if the night didn't go better I would include this nugget of info in my letter of disgust. It would have comforted Jackson a little to see a kid show  instead of the trash that was on the TV. After we went back to the room she turned the TV off and said "it was time for sleep". "Absolutely, no TV."  I tried to explain that Jackson was used to the TV and lots of noise but she cut me off again. I understood we were trying to make Jackson comfortable so he will go to sleep. She was not interested in his comfort or mine either. She used her annoyed angry tone on me again and said "You are in a sleep study!" and ended it like that. I had other questions regarding the sleep study and they were all met with the same attitude and the same response"You are in a sleep study." She never even faked interest in why we were there. Based on her attitude I think she thought we were there for the fun of it or a whim and had interrupted her work, I mean vacation. Me-(in a snooty British voice) "Oh Yes John I should think Jackson would love to have 10 probes glued to his head and face and chest. I heard they also put this thing over their nose and mouth to measure the CO2 levels. Jackson would just love that! Let's do it for Jackson."
John (same snooty British voice) -"Yes dear lets! He'll have a jolly good time!" Please - Give me a break!!
So Jackson began crying while having the probes put on.During the process I fought the urge to grab him, ditch our belongings (including his wheelchair) and run for our lives. I just kept thinking it has to get better.
So back in the room Jackson cried until he passed out. I tried the snuggle and he wasn't happy. I tried letting him lay by himself. He laid there and said Maaaaaa.....Maaaaa....I felt so guilty. I felt like the floor of a taxi cab! I snuggled him and he finally went to sleep. I snuck out of the bed with Jackson and got into the bed for parents-I mean the old wooden church bench they made to look like a bed. It was horrible too. About 6:30 we woke up with a start! Two techs walk in a flip the light on with out a word. Not Good morning Jackson , nothing. It was just rude all the way through the situation. She began taking to stuff off Jackson. She was very aggressive with the tape on his face and chest. Jackson began crying again. He didn't stop until we made it back to Frayser on our way home to Millington. She was rushing us out so fast I just threw clothes on and got out of there. If you or anyone you know have to have a sleep study DO NOT GO TO LEBONHEUR!!!!! It was a miserable experience and I'm not sure Jackson's test results will be reliable.Because of the fit he had before he went to sleep and fit he slept in.
We made it home and Jackson was so happy to be in his bed. Jackson's bed is the king size bed in the master bedroom, not the crib style hospital bed in the same room. Don't get them confused! LOL
After we got home Mom called from Jeter that Wesley had an upset stomach. I knew he felt bad when she said he didn't eat his Chick-fi-la breakfast. So another illness to tackle....we will make it. Jackson went to sleep immediately after I laid him down after coming home from picking Wes up from school.
At the end of the study she was still mean...and all my please, thankyou's, yes mam's didn't means squat to her. I am filling out  my survey and writing a letter to Mary Armor president and CEO of LeBonheur.

Tuesday, May 17, 2011

So... what is new?

We have been so busy with life in general that I have not had time to post any new updates on Jack. I think of that as a good news is good news.
We had a fabulous Easter. The kids hunted eggs and we got to visist with family. Charlotte, The home health nurse,  has been taking care of Jackson for a month now. She is doing a great job. No matter what craziness is going on in the house, Charlotte is solely focused on taking care of Jackson. I am so glad for that! What started out as feeling strange has turned out great! She has helped Jackson so much! Jack has been fighting bronchitis for over a month and I think Jackson is finally "drying out." He went back to school for the first time in a month last Tuesday. He had a good day. He was all smiles when he saw the ladies in the office. He is such a ladies man!

I am so super excited that school is close to being out. I am so tired of fighting the kids to do homework, go to bed on time, project after project, etc. If I had to do one more project this year, I think I'm gonna loose it. I am ready for a break! Jackson is too! I want to spend the summer with the kids on day trips to different places in and nearby Memphis. Now that Charlotte is on the team, Jackson won't have to get out in the heat. I am super excited about being able to take Elizabeth and Wesley out during the summer day.

Overall, this mito family is doing ok and looking forward to summer.