MRI Update

8/19/10 MRI Update

On Monday Josie had her MRI - all went well. They ended up sedating her which meant she needed an IV and a breathing tube. I was taken a little off-guard when they said she would need a breathing tube. They wanted to safeguard her airway while under sedation and also the fact that she would be far away in the tube if something did happen. We were fine with that scenario once it was explained, but also concerned because the last time she had the breathing tube removed, she had "strider", which is what makes her voice sound scratchy. She did just fine though and only had a little scratchiness right after it came out and then it cleared up.

The appointment with the Neurosurgeon went very well. The MRI showed that Josie's brain which was squished over to the left by the tumor was now back to the center. Very good sign! As for the tumor growth, the doctor did not believe it to be growing. The tumor did look different, but he said it is probably folding in on itself because he took the center out in the first surgery. He was very pleased with her progress and how well she is healing. YEAH! Josie has another MRI in one month. Not sure if this will be a monthly process, but the doctor would like to watch this tumor carefully and if possible, get her to 6 months old before the next surgery. We are very pleased with this report.

As for other updates, we are in the process of getting another specialist involved in Josie's care. No one was really "in-charge" of her feeding tube, so now we will be meeting with a GI doctor or specialist that will direct what happens with her feedings and reflux issues. To this point, these 2 things have been the items that have caused us the most concern, so we are glad to have someone stepping in to help Josie.

The rash has pretty much dried up and our conclusion is that she has normal baby "cradle cap" and due to the steroids in her system, they flared up into the rash instead of showing up as just dry scaly scalp. That is not an official prognosis, but it seems to fit with everything that we have been told.

It has been really nice the last couple of days - we are actually home without any appointments - maybe this is a a glimpse at the "new" normal.

Blessings to all...
Darcia & Marc

MRI scheduled

8/15/10 MRI

We have had a pretty "normal" week of doctor appointments and life at home. We had one unexpected trip to the Pediatric clinic on Thursday (which she had an appointment for Friday already and we went to that one too!). Josie broke out in a rash all over her little head the day after she got her new feeding tube. We watched it and let the doctor office know about it early in the week, but then the rash started getting worse and sores started popping up under the tape holding her feeding tube. The tape was right by her eyes, so her eyes also got infected. On Wednesday afternoon we called again and they wanted us to bring her right in Thursday morning. They tested for bacterial and viral infections and so far nothing has been confirmed about what the rash is on her head. After 2 baths, the spots have somewhat cleared up and dried, but her little head looks pretty yucky.

Tomorrow (Monday, August 16) we take Josie in for an MRI. This will be her 1 month image following her brain surgery. This will be a long appointment - approximately 1pm-5pm. Josie will be put under with general anesthesia because she has to hold absolutely still for the scan.

Keep us in prayer - we will meet with her neuro-surgeon on Tuesday to go over the results.

We have been so well supported by everyone - thank you for all the help, we have needed it and appreciate it more than you'll ever know.

Blessings,
Darcia & Marc

Doctor Appointments...

8/7/10 Doctor Apt Updates

We have been home with Josie now for a little over a week. We have had some really good days and some not so good days. Thankfully we have had several friends and family that have helped out this week in so many ways - watching the girls, meals and lots of support.

Doctor appointments started on Tuesday of this week - starting with drawing labs for the following day’s appointments. Wednesday was Josie's Neurology appointment - all went well and they are going to keep Josie on the same seizure meds for now. One of the meds elevates her liver levels, but they are not too concerned at this point - they don't want to mess with changing her meds until she has had it in her system a while longer. They are keeping a close eye on this liver level, which puts our minds at ease a bit.

On Thursday, it was supposed to be a day that I didn't need to go out and about with Josie and I was hoping to get a little needed rest while some friends took the girls for the afternoon. Instead, Josie has started this gagging/throwing up thing that is very disconcerting to me, so I called the Pediatrician and they wanted me to come in to the office with her. That visit ended with me taking Josie to Radiology to get an X-ray of her belly to make sure her feeding tube was still in the right place. After 2-3 hours later, the result came back that it was positioned correctly and I went home with no answer to her throwing up problem.

Friday...I should have known it was going to be one of those days when right from the start, our dog knocked my full cup of coffee off the coffee table. (anyone want a 9 year old dog???)

Josie's first appointment was at the Peds Clinic for our "first" follow-upvisit after her hospital stay. This apppointment was very good and we changed a medication for reflux (possibly the throwing up issue) and then after much screaming from Josie, the nurses got her feeding tube retaped. Unfortunately, because the appointment went much longer than anticipated, we were almost an hour late for Josie's speech therapy appointment, so they told me that we would have to reschedule for next week. I was devastated - I was really looking forward to this appointment and then to not get to meet with the therapist, pretty much shut me down emotionally. I struggled incredibly with this and felt crushed, but there was nothing I could do about it nor did I have any control over being late.

On the way home, I cried and felt drained, little did I know that this was only the beginning of a draining day. As I got home, I opened the van door and started to get Josie's carseat out - what I didn't realize is that the feeding tube cord was stuck on the opposite side of the van seat. The action of lifting the carseat out and the cord catching was enough to rip poor Josie's feeding tube out. I immediately fell apart. Thankfully I got a hold of Marc and gave him the number to call and he took it from there. Marc came home so that he and I could take Josie back to the hospital (this time to the ER) for her feeding tube to be replaced. After talking to the PA that inserted the new tube, he said that the process of the tube coming out didn't hurt her and that things like that just happen. The thing that probably hurt more was the tape ripping off of her face (poor thing!).

Josie had a very fussy rest of the day and slept a lot, which means she didn't sleep very well in the night. *yawn* I think she was skidish this morning about being picked up or handled since yesterday was so traumatic, but she finally settled down and had a good 2 hour wake time this morning and is napping right now.

Keep praying for her Josie and for us - we are feeling somewhat weary - tired from not sleeping well and also feeling somewhat emotionally drained. We really need to get Josie eating (anyone have tips or tricks) so that the feeding tube can come out for good.

well...this has been a long post and lots of information, but we wanted to let you know where we are at with Josie.

We are just waiting on time for what comes next - we have realized that we can only take it one day at a time and keep walking in faith - which means sometimes we take steps without knowing what is coming next.

Blessings -
Marc & Darcia

We're HOME!

8/1/10

It's August and we are home! When Josie was diagnosed with a brain tumor, we did not foresee that we would be home this soon. Honestly, we expected to be at the hospital for a couple months, so we are extremely happy to have Josie home this early.

Leaving the hospital was actually anti-climatic, we were blasted with information and then there was a shift change and when we left, not many of the nurses or doctors that we had been working with were there, so we just kind of walked out of the hospital. Not sure what we were expecting, but it felt a little strange.

The homecoming was just as strange - we got out of the hospital later then we thought, when we got home - everyone greeted us and then the on-call nurse pulled up to help us get Josie set up at home. It was a bit chaotic - thankfully my in-laws took the girls out for dinner and we were able to get josie settled in -although there was a bit of craziness with that too.

It is good to be home - did I say that already?! Last night was our first really rough night of sleep. We think Josie was over stimulated from the day, so she had a hard time settling in and then her feeding tube pump kept giving us errors. Unfortunately, it is a very irritating high pitched beep that lets us know there is a problem. Not nice when it wakes us up from already scattered sleep.

The biggest prayer request we have for Josie is that she will start taking a bottle. She only had 2 days to try out the sucking process before her surgeries and then after those she was on an IV and now on a feeding tube. She needs to be "re-trained" to suck, but she has no interest and so far it has made her REALLY mad when we put anything into her mouth. We have a speech therapist to help with this process, but it is simply something that she will have to relearn and we have to be the administrators of that process.

Josie seems to be doing typical baby stuff, which is a great sign that her brain is working well. Time will tell, as far as how this whole trauma has affected her, but at this point, she is doing normal baby stuff. She doesn't like transition (not many of us do!) from one place to another. Plus she is constantly bombarded with kisses and ever-doting sisters, which overwhelms even me, so I am sure Josie is getting it too. :)

I need to stop rambling, but wanted to get a few notes out about Josie's homecoming. We will probably update this page less as we are not sitting in a hospital room - we have 2 other kiddo's and all of the rest of life to get back into the swing of around here.

Keep praying...we are going to need it just as much now.

Blessings,
Marc & Darcia