Today is a Great Day

Guess What?

Shelby went to church yesterday. She begged me to let her go. She said she just 'had to get out of the house'. She sat in her manual chair for entirely tooooo long. It does not have a tilt on the seating system so it was really hard. She was given a pain pill before we left and given Mortin at church. She was so happy. She is going to start 'homebound' school tomorrow.

Well, it is now 2 hours since I started this update. Shelby came into the room and told me she was having terrible stomach cramps. I asked her if she wanted to lay down and she said yes. Before we could get there, she started throwing up. We have a plan from her peditrician and that will follow with a GI consult, and flat panel x-ray of her belly. He does not think this is directly related to the surgery because she has had a few days of feeling good. He does feel that it is from the throwing up and the lack of fluids in her system. The lack of fluids has caused a really slow tummy. Exciting stuff, huh??

We appreciate your prayers, she just has to get over this hump.

We will keep you posted,

Kim

One Month Anniversary haha!

Today is Thursday, Feb 23, and Shelby is still not over this. We have had many discussions with her Dr. about this being something more than a 'rotovirus'. She is feeling a little better but the nausea is not completely gone. She can go several hours and feel great if we do not put anything into her system other than liquids. We are in discussions about bowel obstructions, also a problem that arises from having your spine straightened that puts pressure on the small intestine that in turn causes the small intestine to block it's own blood supply. That condition arises several weeks post op. We really do not think that is it, because Shelby would REALLY be sick. Shelby has not ever done anything by the book though. Yesterday, you could not even touch her tummy. She got in the shower for about one hour hoping to relax her tummy and then her back started hurting. After she got out of the shower, she then started throwing up again. We had a plan of action and a time frame in place that if she was not better by 7:30 or 8:00 pm, we were going to have to take her into the ER, well, at 8:00pm she made movement in the right direction. She was so happy she was able to stay home. This morning, she woke up feeling good, but after she ate breakfast, she was sick again. Now we are back to the beginning. I will keep you posted on our plan for the weekend. Our doctor has really been working with us to try to not have to go to the ER. That would really be torture for Shelby. We will continue to pray for small steps forward. She is taking in larger amounts of fluid at a time and that can only help. Please pray this will all end soon. She has been asking me, 'why is it always her?' Well, you know that makes me cry. Boy, we are a sight!! haa.

Love you all,

Kim

President's Day

Today is Monday and Shelby's Peditrician wants to back up to only liquids for another 24 hours. It seems like that is all we have been able to do anyway. She had 2 bites of toast and several sips of Gatorade at 11:45 am (when she woke up) and could not keep that down. She also threw up when I sat her up about 20 minutes ago. (at 1:45 pm-A Rotovirus can last 7 to 10 days) She is such a trooper! I will update tomorrow. I also asked if we could go to a hospital closer to home if all is required is IV fluids. They will let me know.

See ya,

In Him,

Kim

Day 27

Good Afternoon,

Shelby has not been able to shake this nausea and throwing up. Today is the 5th day and she may have to go see her pediatrician tomorrow. She may have that rotovirus thing that just hangs on forever. (Too bad it wasn't the 24 hour bug)

Shelby would enjoy hearing from her friends, if it is not a good time she will tell you. It gets lonely in her room. She can only sit up for a short time so she doesn't venture far from her bed.

Please pray that this passes TODAY and she can move on with her healing. (Throwing up with a big cut in your back is truly difficult) The incision looks better each day, though.

Pray for sleep and healing,

Love ya,

Kim

Day 24

I know you are not going to believe this but Shelby and I have caught a stomach bug. We must have been exposed at the lab at Baylor on Tuesday. We were there to get blood work for the new seizure medication. Shelby is worse than I am. We are having a time getting pain meds and everything down. We have Zofran but she is still sick, Taylor and Kendall show no signs of it, yet! Boy, what a great weekend to stay indoors and out of the cold rain. We will keep you posted on visits until this thing clears.

Please pray that Shelby will feel better very soon!! You just wonder what her little body can take :(
Thank you everyone for your contined prayers,

Kim

Day 22

GOOD NEWS!!!!

The infection is under control and the incision will continue to heal. We will return in 3 weeks for another checkup and Dr. Hanson said that the incision will take longer to heal but it will heal. We will have to be vigilant about care, though.

Yesterday morning when I went in to check on Shelby, she was in the middle of a full tonic-clonic seizure. It is impossible to know how long it lasted. It was not more than 5 minutes (that I timed). (Rescue medications are used if the seizure lasts more than 5 minutes.) While we were in the hospital, the Neuro team did not follow the instructions of her private Neurologist. Then on Sunday, the 29th, Texas Children's Neuro team then encouraged us to change her medication to a new version of her current medication due to the fact that her previous oral medication was almost non-existent in her system and she had been on an IV for 6 days. Naturally it was a Sunday and we could not reach our Neurologist. We decided to make the change and contacted our private neuro, Dr. Ian Butler, on Monday. He likes the new medication but was not happy with the dose that the hospital team used. He asked me to ask them to update the dose and he was surprised they did not known better. Well, we paged the team and made our argument, they assured us the dose was correct and that Shelby would be fine. Well, they lied. She was not fine and 15 days later, yesterday, she broke through into a seizure and at bedtime last night, she felt like she was going to seize again and called us to her room. She was very shaken and upset because you feel so rotten after your body goes through that whole process. We did contact our Neurologist and made changes, we hope for the better. Are you wondering why I didn't make the change after we left the hospital? Well, I was so overwhelmed by all the information and surgery itself, that I believed them and wanted to hope that Shelby could stay sub-theraputic and not seize. (Seizure medication makes your brain sleepy) Shelby said she wanted to call the TCH Neuro team and give them a piece of her mind. (If you want names, email me. It was not Dr. Zeller)

We are happy to be home and we will hold on to the hope that we will not have to go back to the hospital. Everyone stay safe and Happy Valentines Day.

All our Love,

Kim

Day 19

Happy Saturday Everyone,

I got to get out for several hours today and ended up at lunch by myself, so I called Katherine and Dwight (who had already had lunch) and they joined me to visit, then Amy Winters and Claire joined us. I really felt like civilization had returned. You must know that we were at Chuy's. I brought Shelby some 'Creamy Jalapeno' (her all time favorite).

I called Dr. Hanson's office Friday with several questions. His office did confirm that our appointment was moved from Thursday to Tuesday at 2:00 pm. I was so happy that Mike will be able to go with me. He did refill pain meds and the final thing was on Thursday evening I was laying Shelby down and her back popped really loud. I do not think that we broke a screw, but she was in a lot of pain and all I could think about was splitting a bone. Her bone density is low and the screws are about 4 inches long. She complained of it hurting when she took a breath and her back was very sensitive in that spot. I gave her Valium, that we use for muscle spasms, and realized that was what was making her wide awake and talking until 3:30 in the morning in the hospital. Unfortunately, this medication has a reverse affect on her, most people relax and rest, but NOOO not Shelby.

Her back looks better and the incision has not opened any more. The anitbiotic is working, but it is making her stomach very sensitive. We are thankful to have Zofran for the nausea. If we were to change antibiotics, the next choice would be a 'sulfa' based drug and she is allergic to that class of medications. So onward we go, daily!

Shelby is enjoying the Olympics on her new tv in HD. We are crowding into her room so we can all watch. Her 'Grand' (dad) would be very happy to know that.

Our sweet friend, Kris, is home. Her revision was almost exactly what Shelby had done. I was told that Kris was not physically strong enough for the complexitiy of the second surgery the first time. (Did that make sense to you?) Her recovery will begin again, but this time her pelvis has mended and she will hopfully be stronger. We love you Kris and are praying for you with all our effort. We love your family and all those helping in carring for your family and you!!

Keep the faith, we will keep you posted.

In Him,

Kim

Day 15 Part II

Well,

An update would be Mike is leaving the country on Thursday, Feb 16 in the morning and Shelby's next appointment is Thursday, Feb 16 at 3:45.Can you even believe the odds of that one. We asked if there was any way to see us on Wednesday, they will let us know. They wanted to wait until the antibiotic was finished and he could assess the situation. If Dr. Hanson feels the situation warrents it, he will schedule surgery to clean up the site and re-close the incision, followed by an IV antibiotic course. Shelby is not going to go for that at all, so none of you can spill the beans until we know something more. Oh, did I mention that Dr. Hanson has scheduled a trip out of town for Friday, February 17 through Tuesday, February 21. Well, how do you think that will work out?

Pray that is will not need hospital intervention. Sharon, I'm calling you tomorrow!!

Kim

Day 15

It has been several days since we last updated. Our last visit with the doctor was uneventful but we now have a problem. The open spot on her incision has now developed an infection. We called Dr. Hanson Monday morning bright and early and finally got a response when I called again at 4:30 in the afternoon. We are on an oral antibiotic and we will see him again in a few days. Shelby's pain level continues to be a key point in her recovery. We are still thrilled to be home and her recovery gets better each day. Our wheelchair guy will be here on Thursday and he will do comfort adjustments and order new seat backs and cushions if she needs them. We turned in a request for a new bed the Friday before surgery and it was approved last Friday. (I can not believe that was accomplished in 2 weeks.) That never happens!! Thank you Lord and all the people that were involved in that magic. It should arrive by the middle of next week. That will really help with the care that we have to give Shelby to keep her comfortable. We will keep you posted on the infection and future recovery.

Love to All,

Kim

Day 11

Good News,

The trip to Houston was a long hard trip and we were just MINUTES ahead of a police chase and shoot out on I45 South to town. I literally mean two minutes ahead of an 'Ol Texas Gunfight'. We were so blessed to be ahead of all that mess. We went through all that to spend about 30 seconds with Dr. Hanson and for him to say that the site was normal and it was just drainage and that she was a little irritated from her internal stitches. We were so relieved and grateful there was no infection (yet - knock on wood).

What we are really on our knees about today is our dear sweet friend, Kris, has had to have what looks like an emergency revision on her back. She was in a car wreck about 3 months ago and the appliance failed. She seemed to be in serious pain and made a visit to her doctor. It seems that he decided Kris could not wait. Before we knew it, she was in surgery then into ICU. Please pray that she will be pain free, the doctors will fix what is needed correctly, and that she will not be discouraged. You have all been such prayer warriors for Shelby and we felt the love and encouragement all along the way. Our road has smoothed out a bit but we ask you to keep praying.

Tomorrow, Taylor will be singing in our Region Choir Concert at 5:00 pm. We are so proud of her and her accomplishments. She was James Madison in our school's version of the 'Constitutinal Convention' today. They were asked to 'dress the part' and she created her own costume. She wrote her won speech and the convention was performed for the whole school throughout the day.

Have a blessed day,

Kim

Day 10

Well,

It couldn't be easy being home so we are headed back to the surgeon's office. Shelby has developed an infection at the base of her neck and the top of the incision. It is very early and my nurse friend, Norma, looked at it for me and said we needed to have it looked. We tried to take a digital picture and email it to Dr. Hanson, but my camera is not the greatest. We are not wanting to wait any longer and especially with tomorrow being Friday, the traffic will only get worse. Please pray that this will easily be treated and things will be fine in a few days. Unforfunately, a low grade infection can brew for up to 6 months. Her doctor said she will not be considered infection free for 6 months.

Pray all day today,

Kim

Day 9 Our First Full Day Home

Yeah, God is so Good!!

Home is a wonderful place. I tell you what, our state highway department needs to do a better job at laying smoother roads! haha Shelby was a trooper but it was horrible hitting all the bumps. We kept telling Mike to drive slower but it was impossible for a Houston boy where traffic is a 'game'. Today was a great day of rest. Shelby slept most of the day and then she said she was up for a shower,.then slept for several more hours. We were provided dinner last night by the Martinez's, and tonight by the Whaley's. We have been trully blessed by the hearts of such wonderful servants. Thank you so much from the bottom of our hearts. I spent a few minutes today talking with the Family Relations representative from Texas Children's Hospital about our stay. We hope that our input will help other families that experience these long and difficult stays. (Especially when it does not need to be so difficult) You know, when the politics of work interfere with the needs of sick children, there is a problem. We also met two other girls that had a similar surgery. One was done by our surgeon and the other was done by a different surgeon. It is amazing to me how your choice of doctors can be of the utmost importance. Your outcome can trully be influenced by those choices you make. I would encourage each one of you to visit with several doctors before you ever make such an important decision. We are trully greatful. Also, here'e a "God Thing' for you. Most of you in this area know that traffic north of The Woodlands going into Conroe is always backed up. I can tell you that I have never seen a day when there was no traffic from about 4:30 to 6:30. Yesterday, at 5:40 in the afternoon we literally sailed through the bottleneck and past the San Jacinto River bridge. Mike and I both at the same time said 'That is a God Thing', we also joked about it being a National Holiday. If any of you prayed for that specifically, (Life Group) THANK YOU!!

Shelby will see the surgeon in two weeks for her follow up appointment. She still is in a lot of pain but her bed feels like 'gloryland'. We have to turn her every 2 hours. Keep us in your prayers.

Love to all,

Kim