we're home!!

we got home tonight...around 8ish. we have a lot of follow-up appointments to go to, but we're so thankful that we're home. leighton can't stop smiling. :) i just wanted to post a quick update...more pictures later!

Leighton update, Wed. 11-5-08

Indiana Matthias turning lightswitches on and off.

Leighton was so happy to see her brother!

Matthias wasn't quite sure what to think

Playing in the crib together....

Leighton doesn't have to wear the hospital gown anymore, so she's in her own clothes, no wires.... she had pointed to the camera and said "cheese" while signing please...so I got it out to take some cute happy pictures of her.

Leighton began her medicine for TB yesterday. It's a crazy regiment of zantec for stomach acid, orapred for shrinking the enlarged lymph node, and 3 different antibiotics that she will have to take every day for the next six months. It's been a little crazy since being diagnosed with TB...we are definitely relieved that it isn't anything more serious, but now we're starting to realize that this diagnosis goes beyond her and even just our family, but it becomes a community issue. We've been talking to the Infectious Disease people, and they're talking to the Wauchula Health Dept and trying to figure out who needs to be tested. The deal is that it is highly unlikely for children to pass TB on...it's the adults that give it to the children and b/c kids can't cough real hard and have less of the bacteria than adults carry they are not as likely to give it to anyone else. But....we definitely need to cover all of our bases in terms of making sure that it stops with Leighton, although we have no idea where it started. I got a negative chest x-ray today, and Tom and the kids will have their skin tests read on friday to see if they are positive. I feel really bad that it's become a community thing....but am also realizing that there's no way that I could've known. The nurse we had today said that she's been in the hospital for 7 years and has never seen a child with TB. So...in all, things are well. We have a mat on the hospital room floor covered with a sheet that we're rolling around on and playing on. The child life dept. brings new videos and toys to play with whenever I ask. We have a highchair set up for meals and Leighton has gotten into a routine of napping and going to bed in her crib. She's definitely stir-crazy (as was I today)...we spent 45 minutes standing at our door looking out the window trying to get people passing by to play peek-a-boo. Basically they have us in still to moniter her breathing...they want to make sure that she's not in danger of having breathing issues when we get home. The tentative plan is to stay until monday or tuesday, have a chest x-ray and then hopefully be cleared to go home. She will have to stay home for the next week and a half while the antibiotics have a chance to make her not contagious anymore. We are grateful for all of your prayers and words of encouragement....thank you for walking through the craziness with us!! We are so glad at this outcome...funny, huh? Thanking God that Leighton has TB. I never would've thought I'd say that. :)

tuesday leighton update....

Leighton definitely has a positive tb test, sooo....the biopsy is cancelled for today and they have her on steroids and antibiotics to treat her for tb. Tom spent a second night over there last night, so i'm on my way over (i had to come home to vote this morning) now and he will head home tonight to see the 4 big kids. We'll post more later today....thanks for checking in! TB is the best thing that it could be, so we're very excited that it's looking that way. Thank you for praying.

Good news?

Hi all,
Karen granted me access to her precious blog recently, which I think shows the depth of her affection for me. We wanted to continue updating on what is going on. But we aren't really sure.
After being told that they would do the biopsy tomorrow and getting all set for it, one of the doctors said that her TB test (spot on her arm) is looking slightly red and raised. So...maybe we are praying that Leighton has TB? Certainly not a normal prayer request, but it is a far better option than some of the other possibilities.
If she has TB it is likely that she has a swollen lymph node pushing on her trachea, in which case she can be treated medicinally, and without surgical intervention. So the more it looks like it is TB, the less likely they are to do a biopsy tomorrow.
I think it it still early to tell. Obviously no one is ever excited about surgery, but her compromised airway makes surgery more difficult. Some of the doctors don't seem bothered by it, others seem very wary of trying to intubate a baby with a compressed trachea. I tend to fall on the bothered side.
So, now we are waiting for a transfer out of intensive care and into a general room (she will still be isolated because of the TB possibility). One benefit of this will be less restrictions on visitors and no heart monitor, which will remove the most obtrusive of the wires she is attached to.
Please continue to pray for her. She is doing well and is relatively happy for being so tied down. It is truly a blessing to come to this blog and see how many people (and churches) are praying for our littleist girl. Thank you.

quick L update 11/3/08

the biopsy will be tomorrow....they're going to intubate her and go in through the side of her neck...i'll let tom share the details later today, but for today we just get to hang out and eat and watch t.v. and play. :) thanks for praying. more to come later!

Leighton update 11/2/08

Nothing too much happened today since the pediatric surgeon talked to us this morning. The nurse (this afternoon) did say that there's a possibility of trying to fit her biopsy surgery in tomorrow instead of tuesday, but we won't know until tomorrow morning. My friend, Lisa, spent most of the day with me, giving me a break so that I could grab some food and get out a little bit.... Tom brought the 4 kids over this afternoon and the nurse proceeded to tell me that they weren't allowed in. I had misunderstood a previous nurse who I thought told me that siblings were welcome...but under 12 isn't allowed in the PICU. Anyways, they were gracious and gave us 20 minutes...where Leighton smiled the biggest smiles that she has had since we left on saturday. (pictures to come) I have the kids home now and Tom is spending the night tonight at the hospital. I'm considering the Ronald McDonald house this week b/c last night was tough for me in terms of getting any rest....but we'll see. Leighton also got to eat some food today, which she was glad for. She'll won't be allowed anything after midnight tonight in case they do surgery tomorrow, though. She's being such a trooper...the sad thing is that she just doesn't understand...and she doesn't feel bad (really)... but she's forced to sit in bed or my lap b/c of all the wires and such. She is actually in isolation b/c she has a couple signs of possible tb (it is most likely not) ...which they will hopefully rule out tomorrow night or tuesday morning and then we can go to the playroom and ride in the wagon and actually be active. :) Thank you for your prayers. I will try to give an update after rounds tomorrow morning. We're definitely hanging in....trying to trust in the midst of the unknown. Pray for sleep for all of us. Being tired affects everything. Speaking of tired...I'm going to bed. :)

Leighton update 11/2/08

Several of you have been getting e-mail updates, but many of you may not have heard about Leighton....I don't know exactly where to start for those of you who know nothing. Long story short: She's been sick with a cough and hard time breathing for 3 weeks now and we just thought it was viral, treating her with steriods and albuterol....this past friday she was worse and so I brought her in to the dr. again....he did a chest x-ray and it was clear, but was thinking that there might be a foreign body in her lungs or traechea or something....was going to send me to a pulmonologist on monday. Friday night she was much worse and Saturday morning around 6 we took her into the ER b/c of how labored her breathing was. They got her stable and a transport team came down and drove us by ambulance up to the All Children's Hospital in St. Petersburg. Since we've been here they've done two catscans and a battery of tests...poor thing has been poked and prodded....and is very miserable. They found a "mass" (i hate that word) in her neck....surrounding the trachea. Basically it's pushing the trachea to the side which accounts for why it's hard for her to catch her breath. A pediatric surgeon came in this morning and said that he is going to consult with the hemotologist (blood and cancer dr.) and the ent and figure out the best was to proceed, but more than likely they'll be doing a biopsy (at the earliest tuesday) on the mass to find out for certain what it is. Please pray for us...for Leighton who, as I said earlier, is miserable. For Tom and I...who are tired, scared, and overwhelmed....for the kids who's worlds are upside down without their sister at home and without one or both of us at home, too. For the details of what this week is going to look like and for me to take things one day at a time in the midst of always planning for the worst. Pray also for our friends, Briton and Susan and their baby boy Jonah....he fractured his skull while they were out of town this weekend....I think he is doing okay, but pray for their family as they make their way back to St. Louis and that Jonah would heal quickly! Thank you and I will try my hardest to put updates here at least once a day if not twice.