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 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
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