Sunday Morning

Well, we had two restless nights of sleep in a row. She is getting accustomed to hospital life, but she also has major attitude at times. She has developed a rash on her hands and feet. Probably eczema. We'll just treat it, and try to get it under control. The itching has been driving her crazy at night. The diarhea is still happening and yeast thanks to the antibiotics. Trying to combat those with meds. So far, so good for the yeast. Luckily the diaper rash has stayed at bay!
Johnny Sileno is back in the hospital. It looks like his incision sight is infected. He'll be going back into the OR to get the whole incision done again. Praying the infection stays away from his shunt, or they will be looking at a whole new set of problems.

Friday Update

Em gave me a break last night. I got to go home and take a much needed shower, and then sleep in my own bed. Unfortunately I forget to turn his alarm clock off when I go home. Her heartrate started to fly up again this morning after I feed her and gave her bolis meds, and she was attached to her IV fluid meds. We quickly counter acted it with more fluids. We didn't let it get above 170 this time. Still uncertain as to why she is doing this in the mornings, and not in the evenings.


We have one of our favorite nurses today, Kelli. She was with us from the start of this whole thing over 3 years ago.She was the first to try to get Ivee to eat after her tumor resection. She and I relived the moment this morning. I told her, "I remember when you tried to feed her, you looked back and me and just shook your head." She said, "I know. I remember it. It just broke my heart that she was like that. And I hurt for you guys!" It is great to see so many familiar faces (nurses and doctors) who have come in to see her. They are just amazed by our tough little angel! They just can't believe it has been that long and that the baby they knew 3 years ago and had such a hard time is now almost 4 years old and doing so well. Em and I know why though. To God be the glory!

Post surgery update

Surgery went fine. She did very well. We were stuck in recovery waiting on a room in the PICU. Once they rolled "us" upstairs she wasn't happy to see where we were going. Guess she thought we were going home. So, last night we got settled into our room in the ICU.

Ivee had a really rough night. I had to sleep with her to calm her down. They had to put the oxygen on her, and she tried to pull it off all night. They finally took it off around 4 am and she slept a little better. This morning, they gave her one of her antibiotics, and her heartrate flew up and stayed in the 170/180's. She became clammy, kept holding her heart and wouldn't let me put her down. We stopped the med, and within an hour it lowered to the 150s. Now it is staying in the 140/130s. She probably developed a sensitivity to the medicine, so we are changing things up. We need to make sure that whatever caused the infection is out of her system. She is watching Dora in her bed and is doing better. Mom needs a nap, and so does she. Hopefully we'll get one soon.

Hospital Update Day 5

(She wanted all her lady bug barrets in her hair yesterday)

Ivee is scheduled right after Dr. Martino's 8 am in the morning. So, I think she'll be in surgery around 9am. He said it should only take about 30 minutes, but with anesthesia, I'm assuming she'll be back there around 1 to 1.5 hours.
Emmett is sick with the virus this morning. Praying he gets over it quickly and I don't get it. It has been a 24 hour bug, so hopefully he'll be fine in the morning. I have been around my girls when they had it, and I did fine. Hopefully my body was already immune. Thanks for the prayers. God has always had a reason for everything that has happened with our baby girl. We feel that no less this time. Our specific prayer is that He wants that shunt out and doesn't want another one in her! We pray her brain has healed and will do just fine absorbing the csf on it's own again.

Update from Hospital day 4

Okay. So the verdict is surgery! Dr. Martino is pretty 'full' tomorrow, so more than likely it will be Wednesday. Then we will be living in the PICU for at least 10 days. They will be externalizing the line to relieve any pressure on the brain. Watching to see if her brain/ventricles recoop and work on their own without putting in a new shunt. If so, we clamp it off for 48 hours, then remove it if all is well. If not, surgery again to put in another shunt on the opposite side of her body, trying to avoid the port on her right side. So, that is it. My sanity will be going in and out, back and forth, and up and down. On the bright side, Ivee adapts pretty well to hospital life. You just can't sleep in the ICU in the lay down chairs. I just need to get one that isn't broken.


Thanks for the prayers. I'll let you know when surgery will take place.

Sorry I forgot...

Okay, with all the hospital stuff I forgot to blog that Ivee's scan is still STABLE!!!! Thank the Lord.

Surgery Update

So far, the cultures aren't growing anything. This is good. That means that the infection is not in the brain/shunt. The CT scan came back clear of any cellutos cyst, which is also good. We will be waiting Dr. Martino's visit on Monday. He will be doing some research this weekend to see what he thinks would be best for Ivee, as he will also be consulting Dr. Mancou of infectious disease. I am assuming we have a 50/50 chance of surgery to remove the shunt. We will know more on Monday when he has checked the culture results and has finished his research. So once again, our daughter has something unusual and rare happening with her. Why would be expect anything else! Thanks for your prayers. We know who the ultimate healer is and has always been. Em and I are thankful for the last 3 years. God has graced our family with a new understanding of what is important in life, and with a new understanding of what our heavenly Father faced when His child was put through the fire!!!!!
Remember: That past is but a thought, and the future is yet to be seen, but today is a gift! That is why it is called the present!!!!

Ivee in the hospital

Now I am home and can update from my PC. Long story short! Ivee is in the hospital cause we notices continued redness and swelling along the shunt line in her neck and chest. They have drawn blood and csf cultures from her port and shunt. The fluid looked clear, and so far no signs of anything. If the cultures grow anything, then we are looking at a possible bacterial infection and surgery will have to be done to remove it. If nothing grows, it is probably viral. We will continue to treat her with antibiotics.
She had a stomach virus this weekend, and it is a possibility that it went up her line somehow on the outside. She can't throw up so diarreha were the symptoms. The fever was slight on Tuesday, but last night at home you could just feel her and know she was sick. Before I left her with Emmett tonight, she was already beginning to feel a bit better. Still redness and swelling, but it is going down gradually. I will post as I know more. Thanks for your prayers!!!

Memphis Bound

It is scan week! Pray for us as we travel once again. Ivee is on the "end" of some kinda of stomach upset. So, hopefully traveling tomorrow we won't have too stop too much.
Wednesday is scan day, so pray for a stable and clean one!

Something great to celebrate

Yesterday I got Ivee to take 8 bites of jello in one day! That was great for us, but then today at Speech she took 6 in one hour of therapy. She wasn't the most willing participant, but she is making progress. Many, many thanks to Lori, her therapist, for helping me find ways and activities to get her interested in eating!!!
On another therapy note...she is wanting to walk more, with her walker and with hand help. She goes from our coffee table/chest to daddy in his recliner. She has to get her 'footing' but then she can usually takes two steps before loosing her balance. Her core is still weak, but little by little she is getting stronger all the time! She will get her new cpo (leg braces) next week. They will help with the hyperextension of her knees. Thankfully she won't have to wear them all the time! The orthopedic is concerned about some sublixation of her hip socket. I showed her scans to her grandpa (the chiropractor), so we will be working on some plan to help her with that. Thankfully the doctor doesn't think surgery is necessary since she shows no sign of pain. He will xray again in 4 months to see what is happening there.
We leave for St. Jude on Tuesday the 19th. Her MRI will be on Wednesday. Pray, once again, for a clear/stable scan!
Haven't heard from Jennine about Johnny today, but I woke up with them on my mind first thing this morning. I am praying every hour for them as he goes into the OR today!!!!

About Johnny:  Post-op MRI shows a sliver of tumor left.  After consulting with doctors at St. Jude, the course of action suggested at this time is to go back to the OR tomorrow and try to remove it.  Dr. Boop feels it will be a quicker procedure, it is not in a dangerous area, just means opening up the sutchers and going in again.  He does not even think we will need to go to ICU.  He does not feel Johnny will lose any abilities that he has already maintained. First setback.  Let's pray none others appear.  I'll post tomorrow at surgery time to ask for another round of ardent prayers to guide those hands.

Please continue for this family.

Johnny's Recovery

Johnny came through surgery and is doing great. There is a "carpet" of cells still on the 4th ventricle. Chemo maybe the next step (since he can no longer receive radiation treatments). The doctor is pleased to see the tumor was not around the brain stem, and there seems to be no physical side effects after the removal... (paralysis, crossed eyes, etc). Praise God. Thank you for praying along side us for this family.

Pray for Johnny Sileno. He is in surgery right now!