celebrating time!!!

We are home...time for Christmas parties and fun, thankful laine is doing better, she was able to open more presents last night which was fun. She slept really good and I did too. She is wearing a cute little backpack that runs a pump for her IV. Thank you all for your prayers. Will keep you posted. Lots of follow up appointments and lab work and home nurse visits but we are home and thankful.

home!

Well tonight we are officially home. I can not wait to sleep in my own bed. It is going to be wonderful!!!! Laine was so happy to see Paige and play with her Christmas toys. She had a blast opening more presents. Jeff and I opened presents too which was fun. Her home nurse came to see her and explain the IV pump ( I use inpatient pumps and not familiar with the home pumps). She will wear a backpack until Feb 5th. She has antibiotic medication running 24 hours a day. She is walking on it but it is sore and hurts at times, but at least she is walking! She had not able able to walk since last Tuesday so obviously we are so happy. Looking forward to some family night.

PICC Line and one step closer

Laine had a PICC (Peripherally Inserted Central Catheter) line inserted last night and looks like we are getting another step closer to getting home. She was very funny coming out of sedation last night...apparently I had 2 heads and dad had 2 mustaches. I am hoping that all goes well today. She will need home IV antibiotics for 4-6 weeks and weekly doctor appointments and lab work. I am taking FMLA but am hoping to work when I can. She still has a fair amount of pain in her lower leg and it is making walking not a fun experience. Please pray for her leg pain and also that should would not require any more surgery. It is possible for the infection that is still there to settle in areas again and cause an abscess as her leg heels. It isn't totally uncommon for the surgeon to have to open her leg again. But something we are praying doesn't not have to happen. I am missing Paige so much...my heart is hurting for her. She has had a lot of fun with friends and family, but ready for her own bed now and to see her sister and us. The plan is this afternoon we will be switched over to her home IV pump. It is a continuous pump that she will wear as a little fanny pack. Hopefully tonight we will get to be discharged. Please pray for infection to clear and no recurrences ever, protect her body from infection, heal her leg, and for our family getting settled back at home. We will also have medical bills and co pays and I don't want to even think about that mail arriving. ugggg. But God is good and so many are praying for her and healing and we are so thankful for that.

fever free!

fever is gone and she is eating well and drinking again. she wants to play and be active. except her leg really still hurts around the ankle and she doesn't want to walk on it. docs are still coming up with a plan for her. Her incision on her leg looks great. A little red still but improving. We are hoping that in the next day we can get plans made to head home. Thank you for you prayers.

perking up a bit

Well today Laine is perked up a bit because her sister was able to come and spend time with her. During the night she had leg pain and still is not able to walk on it. But she is talking and wanting to play a little in bed which is a huge improvement from Friday when she layed in bed and slept all day. The surgeon will see her today and her doctors already made rounds and are developing a plan for her. She most likely has either a staph or strep infection in her lower leg and has changes in her bone called Acute Osteomyelitis. She may have had either organism with the cold and cough a few weeks ago and the bacteria was in her blood and settled in the vascular areas of her growth plate in her Tibia bone. She still had fevers during the night and they are making some changes to the antibiotics based on the cultures sent from surgery yesterday. We should have final culture results on Tuesday and that may help to confirm which antibiotic will work the best. Because she is still having fevers she can't have a long term PICC line (central catheter for long term antibiotics) until she is fever free for 24 hours. If she still has bacteria in the blood causing the fevers it can cause a the PICC line to become infected as well. In the morning she will have more labs done to check her inflammation and White Blood Count. That should tell us if she can have a PICC line placed tomorrow or Wednesday and then we should be able to start the antibiotics for home and then maybe toward the end of the end she may be able to go home. At least that is the plan for now. Will keep you posted. God has been so good to us and helping her feel a bit better and our family and friends are so supportive.

surgery this morning

Well last night the ortho docs came to see laine and thought she may need surgery in the next day or so...then rounded on her again this morning and decided they didn't like the way her leg looked and she wasn't much better on 3 antibiotics for the last 4 days. The docs decided surgery would happen today....800 this morning we found out surgery was at 900. We have so loved our doctor who pushed for testing and surgery this weekend.

Laine had an incision of the tibia bone where the infection was, and cleaned and debrided it and the culture and samples were sent to lab. It could take until Tuesday to get the results. She will continue on antibiotics through her IV, but probably needs a longer term IV line called a PICC line placed in the next few days, as she will most likely need IV antibiotics long term (4-6 weeks). We will be here for a while still. God is good answering our prayers about having surgery ( a good thing....she feels better since they open her leg and cleaned it, fever is better, and the surgeon was able to get samples to send to lab). Today she actually ate dinner and this was the first time in a week she had an appetite. She has been a trooper and been handling being in the hospital over Christmas, infection, surgery and all this really well. We should know more this week about the plan. Paige is doing well considering we have been with Laine a lot but she has been so mature and not acted too disappointed. She has been staying with family and having fun with her cousins and rest of the family. They all have been such a blessing to us...thank you family and friends.

Please, please pray...

Our 4 year old has been sick since Monday and in the hospital since Tuesday. For those reading previous posts she was admitted to the hospital due to high fevers, vomiting and also not wanting to eat which can be an issue with her VLCAD condition (read side bar for more info). She was actually sent home and within one hour of being home she started limping while trying to play with her sister and kitty. After I looked at her leg I noticed an area that was swollen had a rash and was painful to touch (that was not there prior) and she was again readmitted. The rash continued to spread up her leg and triple antibiotics have not helped. She had an MRI today and it revealed an area of infection called Osteomyelitis. In children bacterial infections can settle in the bone after having an illness from a few weeks ago. (She had a cold and runny nose and occasional cough 2 weeks ago). Some of that bacteria probably settled in her bone and over the last couple weeks and started showing us something was wrong. It isn't common for it to happen like this.

We really could use all your prayers.....she will need iv antibiotics for 4-6 weeks, maybe surgery and I will need to be off work most likely for an extended time to stay with her. But our God is faithful and gave us great doctors who ordered the right tests for her. thank you

Merry Christmas

Merry Christmas everyone!

back in the hospital

uggggggg. we are back here. it seems like an infection has settled in her leg and she won't walk now. She still has high fevers despite IV antibiotics. We are still waiting on blood cultures. Her white count was very high. Still won't eat. So we will be spending another night here at the Children's Hospital.

But we have a great God and can celebrate the birth of Jesus. What a gift. Our family is so supportive and making this time for paige fun and santa knows where to find her tonight. This evening we can be thankful for much He has given us. Time to turn some Christmas tunes on. Good night.

trip to the hospital....

say a little prayer for laine...we are in the hospital. she has had the same virus her sister had last week. for laine any illness can be an issue with her metabolic issues (see my sidebar for more info). I am hopeful for just a day or so stay (please jesus let us be home to celebrate your birthday). 104.2 temp today and not eating, gets her a direct admit to the hospital. i am so glad we have wonderful doctors who work so well with her.