Dermatology visit

Well, the test was positive. It's good that she is not allergic to the pump but bad because we still don't have a definite answer on why it won't stay in. The Dr said she isn't allergic on the surface, doesn't mean she isn't allergic inside. Ugh!
They were able to give us this cool sock thing to go around her so hopefully I can stop using tape. She is bleeding and really irritated where all of the tape has been. They gave me some steroid cream to rub on her too. We'll see.
The bad news, she is forming a pocket that is growing where the pump was. My best guess, it is filling with fluid. I will call Dr Shafron's office in the morning. I fear we may be headed back in for another outpatient surgery this week. Hopefully not.
Thanks again for all of the prayers and nice thoughts. Need more strength prayers. I'm really starting to second guess my decisions.

We're home!!!

Stitches are out! The nurse tracked down a friend of hers and they were able to place allergy pads on her back. She has a 12x12 spot covered in gauze and tape. She is not allowed to sweat or rub her back. Uh huh. It's only 110 outside, no problem!! We go in Monday to have the gauze removed, Wednesday to have everything re checked and possibly again on Friday. When it is over we will know if she is allergic to something in the pump. Her wound is open some but I shouldn't have to pack it unless it opens more. I have to do wet to dry dressings twice a day for a while. Fun! I soak gauze in sterile solution, roll it and shove it in the wound. When it dries I pull it out and all of the gunk it dried to the gauze and pulls out. Sounds fun right! I think her and I will need some heavy sedation over the coming weeks! I will post again if anything goes wrong or else Monday after the doctors appointment. The appointment is at 5pm so it will be late. Thank you again for the continued support and prayers!

Outpatient Surgery Tomorrow

Sorry for the delay. The doctor's office called yesterday to schedule for tomorrow. She is having outpatient surgery to have her tummy stitches removed and wound scraped out. I changed her bandage tonight and she popped a stitch right through the skin and another one on the way. Her incision is breaking back open. Glad they are coming out tomorrow and we will be seeing the doc. She is excited because she gets to sleep through her stitch removal. Weird child, but glad she is. Surgery is at 1:30. I'll post tomorrow night or Saturday morning depending on how late we are there.

Dr Appointment

We went back to see doctor Shafron today. He cried when she gave him the Dr Shafron puppy. Such a great man! He personally came out into the waiting room to get us today.
Her back stitches have been removed. They are making an appointment for next week, probably Thursday, to have her stomach stitches taken out. We should just be there for the day. She will be in a procedure room in the hospital and he will open the wound and scrape it out. It has nasty build up all over it and is still draining. She will have an open wound for a while.
Her Make A Wish coloring book arrived today. can't wait to see what she comes up with. So far, ride in an airplane, ride in a boat and stay in a hotel room. I guess we just need the where.
The Share the Well Lending Closet has taken off. I have received lots of donation and have a nearly full storage unit. I still need monthly contributers to help pay the bills before I go broke. I have already helped a few families though.
Thank you everyone for your continued prayer and warm thoughts!
Happy Birthday Great Grandma!!

Birthday party and amazing news!!!

We started off the day with Ice Age 3 in 3D! Check us out in our glasses!






Then we headed off to Build A Bear. Bad mom forgot to get pictures while they were being made. I blame it on the heat. This is a picture of the girls after we got home. Of course Hope had to have the Hannah Montana Bear. Her friend Abbey chose a cute horse. The animals received matching Rock shirts and pink microphones. We also ended up making Dr. Shafron a cute puppy and I am personalizing the scrubs!!


After we got home Hope opened her gifts. Her friends Rachel, Paul and their son Cael got her cute clothes and a Build A Bear horse that makes horse noises. She was a little excited.

Her singing card that I am sure she will drive me crazy with. She also received a horse game that she won't stop playing, McDonalds money (always a huge hit!) go go pets (little battery powered hamsters that drive a car and run in a wheel, etc.). Those pictures didn't turn out so well.

Aunt Helen and Uncle Doug got her really cool m&m's with her picture on them, name and other cute sayings. She received so many cute gifts today. More little pet shop toys to play with (really great for the hospital!), Tink shirt, stickers and lots of other stuff. She had a good day.

My dad may not like this, but this is the boys putting together go go pet land!! They were getting lots of help!




While we were at Build A Bear I received an unknown phone call. I came home and returned the call. Hope was approved for Make A Wish!! Can't get a better birthday than that!! They are sending out a welcome packet explaining the process and a coloring/activity book for Hope to work on and help her figure out her wish. It still seems like a dream! I keep asking about Disney World. Mommy needs a vacation! She wants a playground. We'll see what pans out!!

Stitches out Tuesday. I'll post again then.

Thank you everyone for all of the wonderful birthday wishes, warm thoughts and prayers!

Doctor Visit

We went for a check up today and she looks great!!! No leaking and no bump! Stitches come out next Tuesday and we have some Valium to take before hand. That should make it much nicer! The doctor also learned about an allergy kit that Medtronic (the makers of the pump) has. It is on its way and the doctor is making an appointment for us with a dermatology clinic where he will personally walk the kit down to them. Amazing man! He is also referring us to a local orthopedic doctor. I haven't liked the ones at clinic, but if he is personally talking to a doctor about her, it might make things a little better for us. The down side, we lose our amazing people that make all her braces.
She is doing well and beyond excited for her birthday this weekend. We are headed to Build A Bear and Ice Age 2 with my friend and her daughter. I think we are finding a bear with scrubs and writing Dr. Shafron's name on it for a "Thank you for taking such great care of me" gift.
I think that is all for now. Thank you everyone again for all of the warm thoughts and prayers!

Home, again

We were able to come home yesterday. It's nice to sleep in my own bed again!! Hope is doing well. No leaking or fluid build up. She is sitting up for an hour in the morning and an hour at night to play her computer. I have her on a slight incline to eat, other than that, she is flat. We go back to the dr Tuesday. Before we left, the neurosurgeon gave me his personal cell phone number since he won't be on call this weekend. Amazing guy! Can't say that enough. I will update the blog again Tuesday unless we have another eventful weekend! Thank you everyone for your support and prayers!

Status Quo

I have been waiting for a change before I updated this, but things are the same. That's a good thing. No more leaking, still flat with her head below foot level. The dr should be in later and should start raising her head. Can't wait!! New rule - No singing cards while in the hospital. Dee Da Dee Da Doh Doh. That is all I have heard!!! I will post later if anything changes. Thank you for the phone calls, emails, warm wishes and prayers!

Admitted last night

Well, we are in the PICU again. She started leaking last night and here we are. She has been stuck on her side and the head of her bed is lower than her feet. Our doctor came in this morning and pulled off the old bandage and put on some derma-bond (super glue), a new bandage and gave her some medicine that will slow down spinal fluid production for a couple of days. He came back in to check on her once since and she is not leaking. I'm sure he will be back in later. If there is no more leaking I am hoping to go home tomorrow. Too early to tell though. I'll keep this up to date. I have my computer now.

Home for now

We came home yesterday directly from the PICU. Sorry for the delay but I basically passed out last night and have been cleaning all day today. Five days away equals a very dirty house!
On the ride home she leaked spinal fluid about the size of 2 quarters out her spine. She is flat again, except for the bathroom. We go back to the doctor next week and he may or may not take the stitched out. It will depend on what they look like. She came home on antibiotics and oral Baclofen. I will be weaning her off the oral Baclofen over the next 2 months. I have a very rough road ahead of me. When she is on oral Baclofen and coming off of it, she has major behavior issues. Some of you know that her calves have been in atrophy, meaning, her calves are diminished to bone and spacticity. It has basically eaten away her muscle. With the pump, it could have been recovered. I am not sure what will happen now. I will also need to transfer her from Shriner's to a local Orthopedic doctor. Her hips get worse as time goes on. And again, without the pump, they will continue to get worse. I don't know what the future holds for us, but I am sure there will be more bumps in the road.
The positive, we are home! Thank you everyone for the prayers, cards, and warm thoughts! The support behind us has been great. Thank you!

Night Update

Hope is doing well. She hasn't had any pain meds or Valium since 5:30am and is doing awesome!! That means the Baclofen is built up in her system and controlling her spasms. She had a gush out her tummy when I put her up to 25 degrees. She's back down to 10 degrees now. Our doc comes back in the morning and he can decide what he wants to do with her then. In a way it is good that it is coming out so it isn't building a toxic waste dump inside her and infecting her whole body. On the other hand, we probably won't be going home until it is done leaking. I'm not sure if opening it and packing it would be a solution. I guess we'll find out tomorrow. The Infectious Disease doc will be in tomorrow with a plan of attack too. This IV isn't looking good. She may be getting a pic line tomorrow. If she does, she can go home on it with IV antibiotics if needed. Will depend on insurance. If insurance won't cover it we could be stuck here for 10 days. =- ( The Valium is very harsh on the veins and IV so I am glad she isn't on that anymore. The antibiotics are pretty harsh though too. Still on 3 antibiotics through the IV. There doesn't appear to be any more leaking from the spine so that is wonderful! Her spirits are good. Hasn't really complained about being bored either. Thank you to all of our visitors, friends, and family! We couldn't make it through all of this without you!

Regression

The time is now 1:19am. Three attempts and an hour later and we have a new IV. She has a blood draw at 5am. Hopefully this new IV will stay working until then. She is receiving 5 different medicines through her IV and 4 of them are very rough medicines. With such small veins and massive spactisity, IV's are hard to get and keep. During morning rounds the nurses will be asking about a pic line and the IV team will be called. She is a very good candidate for a pic line. She can come home on that as well. The new IV is mid arm so it doesn't disturb her game playing at all. Priorities!!
Her back is leaking spinal fluid so she is back down to a 10 degree angle. If it leaks more, it will be reinforced and placed flat until the doctor decides if more aggressive action is needed. No headaches but she seldom complains of them. The muscle spasms are the only thing that really puts her in tears, well that and the 5 inch incision on the tummy .
Due to recent activity I am not sure if she will go to the floor tomorrow. I should know a lot more after morning rounds and after the infection dr comes in.
Now to coax her to sleep so I can get some sleep. Medicines run all night long and some have to be taken orally. Makes for a very long day and night.
Thank you everyone for the love, support and prayers!!

Slow recovery

We are still in the PICU and there hasn't been any talk of moving us yet. They have had a hard time getting her pain under control since her morphine dose is so small. She has been on Valium to control the back/shoulder spasms. The infectious doc was just here and no bacteria has grown yet. They tested her spinal fluid in the OR and there are white blood cells in her spinal fluid. She's allergic to the catch all medicine they want to put her on. Without bacteria growth, it's hard to know what you are fighting. She's on an antibiotic now but it doesn't get into the spinal fluid well. Hopefully something will grow so they know what they are fighting. The doctor said at least another day here.
She definitely seems to be in better spirits today. She's yelling at her body already and was in tears when I told her that her pump was taken out. She tells me several times a day that she wants her pump back in. It makes such a difference in her life and everything that she does.
She should start sitting up some today. We are still waiting on the neurosurgeon to come in. Our doctor isn't here today but his partner is. Our doctor will call to check on Hope too, he always does.
So far today is going much better than yesterday. I think the oral Baclofen is finally kicking in and her morphine dose was increased. Between that and the Valium, it is keeping her pretty calm. She is still completely awake. Blows my mind. I would be sleeping or watching unicorns flying around the room!
If I have to be in the hospital, I love it when it's a holiday. The halls and waiting rooms are quiet and there's no lines in the cafeteria.
Thank you everyone for your support and prayers!

Emergency Surgery

I checked Hopes pump this morning before leaving the house and she was leaking a generous amount. Called the doctor and was told to come in, no food or drink. He removed the steri strips in the office and it was a very nasty sight. The incision is normally 1/4" thick, the pump stretched it about an inch and a half apart. There was a very thin layer of skin holding the pump in. It was draining from about 4 separate spots along the incision and was very discolored. We were straight admitted to the PICU at Phoenix Children's (of course). Surgery happened at 5:30 and she is playing a video game now. The pump looked "very bad" and was not salvagible. The white cell count was so high they couldn't tell what bacteria was in the culture. The entire pump and catheter was removed. Which means her 5" tummy scar and back scar were reopened. Not sure how big the back is. It runs about 6" long but not all of that would be opened. Of course, she has the first infected pump the doctor has ever seen and he has placed over 100 of them. That's my kid! She is flat for 48 hours in the hospital and then slowly inclined to help prevent a CSF (spinal Fluid) leak. Hopefully we will be out of here on Sunday. Infectious Control will be handling her antibiotics and duration. There is talk of 2 weeks of iv antibiotics. The biggest concern with having an infected pump, it goes directly into the spinal fluid which goes directly to the brain. This was caught early enough so she should be in the clear.
We have a long road ahead of us but so far so good. She is breathing well and her heart rate is good so it shouldn't be a repeat of last time. I will update this everyday if not twice a day while we are in here. I'm exhausted so hopefully this made sense. My cell reception is hit and miss but I do receive my emails in here and you can call the main line to get to our room, where ever we are. 602-546-1000.
Thank you everyone for your support, love and prayers!