Erica update

Friday 5/29:
Well Erica lost a tooth sometime between yesterday and today. Problem is, we're not sure where it is. They just did an x-ray to make sure it's not in any airways. They couldn't find it, so it's either in her stomach or lost in the sheets. We lost Eldon's first tooth, we lost Erica's first tooth, I wonder what will happen to Jessica.

She's been taken off the breathing machine again. She is still intubated, but it just gives her a bit of oxygen, she's doing the actual breathing work. The doctors want to keep her off as long as possible to build up strength. They'll put her back on again tonight. She did much better and longer with it than yesterday, about 7 hours this time.

A wonderful woman with a harp came by and played for Erica. She comes by a couple of Fridays a month and plays for patients in the hospital. She played for her last Friday, too, but this time Erica was awake for it. It was beautiful music.

She was awake for most of the day, watching movies all day.

And a dear friend brought me root beer from The Pop Shoppe. So sweet! (and thanks to all the others that offered!)

Saturday 5/30:
Erica had a good day today, not a whole lot to report. They tried taking her off the breathing tube, but she didn't last more than about 5 minutes. Apparently, all during the night there were kids screaming on either side of her, so she didn't get much sleep.

Sunday 5/31:
Erica did well again today. They took her off the breathing tube, and she lasted only about 2 hours this time. Her surgery is scheduled for tomorrow at 7:00am. After that, the big challenge will be getting off the breathing tube.

Making progress

Wednesday 5/27:
Not a whole lot to report today. I wasn't at the hospital much today, so I haven't even been able to talk to the doctors. But Erica was alert during the day and was able to communicate. She was happy to have her teachers come to visit her, and her room is decorated with cards that her friends at school made her. And Grandma is here now to help take care of everybody!

Thursday 5/28:
Erica has done pretty well today. She worked with OT and PT this morning, which wiped her out for the rest of the day. She's been sleeping all afternoon. Her CT scan looks great. She has surgery tentatively scheduled for Monday. She did have a fever this morning, and they're still not sure why she keeps getting fevers. They turned off the breathing machine so she could breathe on her own. She is breathing, but shallowly. The machine had to kick in a few times, so they turned it back on for the night. All in all a good day.

On another note, I was diagnosed with chicken pox for the third time in my life. Crazy, eh? Luckily, it's small and on my leg, so it's well covered, so the doctors are OK with me staying with Erica in the PICU. And again, luckily, I'm not with Jessica and Zachary, since they haven't been immunized yet (apparently that's when you're 4). Of course, I was with them after I had the rash and before I was diagnosed, so we'll have to watch closely, but again, since it's a small rash, they should be ok. The doctor said that after you get the chicken pox the virus stays in your system, and if you have something that compromises your immune system, like a cold, the flu, or STRESS, it can overcome your immune system and reappear. Um, there might have been a bit of stress around here. Just maybe.

Two steps forward and one step back

Sunday 5/24:
Erica's doctor noticed on her most recent ct scan that the side of her brain w/o the shunt is now filling rapidly, and that is leading to Erica's new deterioration. She went in for surgery to day to put a new shunt line into the other side of her brain to drain the fluid so she can fill better. The surgery was short and the brain pressures in her head are low again. She's awake, but pretty out of it. Her eyes move around a bit, and she can move her fingers and arm, but she doesn't do it much.

Monday 5/25:
Erica is pretty unresponsive today. She will wake up and respond, but it takes a bit of poking to get her there. Her temp keeps going up and the pressures in her head have gone up twice. She did give the neurosurgeon a high five after he adjusted the pressures in her head.Her pneumonia is about the same. Her blood count is low, so they're going to give her a transfusion since she's anemic. Having been anemic and otherwise healthy myself, I can only imagine how much the anemia is fatiguing her. She was getting quite puffy from all the fluids she was getting, so they gave her some medicine to drain out the fluids, and she looks much better now.

Tuesday 5/26:
Erica was still lethargic this morning. She did respond to the doctor's commands (like a high-five and holding up her arms), but with her eyes shut tight. Her chest xray was tremendously improved, so much so that the doctor had to double check that she was looking at the right patient's xrays. Her transfusion went great last night, bringing her blood count up to normal. The doctor turned off the breathing machine to see what would happen (you should have seen the look of shock on the other doctor's faces when she confessed that), and Erica breathed fine on her own. So they decided to let her breathe on her own for longer to see what would happen. She was fine until she was given morphine for pain, and then her breathing rate slowed enough that they wanted to put her back on. She's still having trouble with pressure spikes in her head and fevers. They also did an EEG. I'm not sure why.
At that time I went to my room to lay down for a bit. I woke up 3 hours later. A bit tired, maybe?
Maybe. In the evening, I had a different little girl. She woke up about 5:00 when the neurosurgeon came to check on her. And not just her open-slit-eyes,-I'm-not-sure-if-she's-really-in-there state of usual awakefulness that she has been doing. Eyes fully open and looking around. Hooray! I read her a story, she told me yes or no which one she wanted, she played thumb wars with me, arm wrestled with me, and laughed at my knock-knock joke (which, incidentally, caused her to choke on the saliva she was pooling in her mouth. Oops...) She then fell back asleep while listening to music. James and the kids came up to see her. After Eldon went in and read to her the cards his class had made, James said she was awake. So he took in Zachary to see her. He quickly came back with a teary Zach and said, "If she wasn't awake before, she sure is now!" Apparently he leaned Zach in for a hug, and he just started screaming. The nurse was laughing about it later. After they left I read her another story and played with her some more. It was hard not to make her laugh because it was so good just to see her laugh (btw, she didn't make any noise laughing, but her chest was laughing, if you know what I mean. If you don't know what I mean, um, sorry.) Then she watched a Pooh Bear movie and fell asleep. Until I turned it off and kissed her goodnight, of course. But I'm so happy with the way the evening ended.

I haven't been able to update the blog because the computers at the hospital wouldn't let me for some reason. But now I have James' laptop, so hopefully I'll be able to update more often. And I'm really craving a root beer, but the vending machine doesn't have any. Silly vending machines.

Erica - Week 1

I thought I'd start documenting the past week.  It's all running together in my head.  It goes into some detail, so if you get queasy easily, you may not want to read it.  For those of you getting daily email reports, this contains the same information.

 

Sunday night:

Well, actually Saturday.  Erica seemed fatigued and wouldn't do much.  But she's lazy like that sometimes.  By Sunday night, after dinner, James noticed she wasn't using her left side.  So he did some tests and verified that her left side wasn't working.  So we called a friend to watch the other kids and took her to the emergency room.  Luckily, they let us right in.  The CT scan verified that her shunt wasn't working and pressure was building up in the right side of her brain, thus causing problems with her left side.

 

Monday:

Shunt surgery.  The shunt was working, but was placed so that scar tissue was in the way of drainage.  So it was moved, and everything looked great.  She spent the day in the PICU and was doing fine.

 

Tuesday:

Awake, alert, answering with 1 or 2 words to questions.  About lunch time ate a couple of french fries.  A few hours later, while sleeping, she threw up the french fries.  From then on, she was choking quite a bit and her responsiveness level went down throughout the night.  It was hard for her to breath.

 

Wednesday:

Continued decline.  They put an oxygen mask on her and she was moved back down to PICU.  They gave her treatments for breathing (vapor medicine in a mask) to help her breathe.  She was diagnosed with aspiration pneumonia, brought on by fluids or food going into the lungs.  Had a hard time drawing blood because her veins kept collapsing.  She ended up with 10 pokes for her 2 IVs.

 

Thursday:

A breathing tube was put in.  She went to surgery in the afternoon to place an external shunt in her brain help drain the excess fluid and to measure the pressure in her brain.  After the surgery she didn't wake up.  Her vitals all looked great, but her body looked bad.  A brain MRI and CT scan looked great and showed absolutely no problems - no infection, no signs of stroke.  So statistically, she looked great.  Clinically, she looked awful.  The doctors were stumped, as well as several colleagues that they had contacted.  They put in a IV in a central vein because both IVs had collapsed.

 

Friday:

Woke up in the morning.  She squeezed fingers and nodded her head a few times.  The xray for pneumonia looked a bit clearer, but it could still get worse before it gets better.  They gave her some sedation because the breathing tube seemed to be bothering her gag reflex.  An NG tube was put in to start feeding her through her stomach.  They put a line in her artery to constantly monitor her blood pressure.

Saturday:

Erica was doing a lot better today.  She was moving around more and was trying to lift up her arms, although she couldn't get them past her waist.  But even the effort still shows progress!  She was also a bit more communicative with her yeses and nos.  She did have a problem with sudden spiking in heart rate, blood pressure, and head pressure.  They did a CT scan, but it looked no different than the previous one, so the doctors are pursuing the seizure idea again.  If she spikes again, they will immediately give her an anti-seizure medicine which, if it is a seizure, will show immediate improvement.  The doctors ordered a 24-hour EEG to monitor brain waves, but don't know when it will start because it is a holiday weekend.  She's doing well with the feeding tube and is almost up to the amount they want to give her.  They're trying to wean her off the respirator, to see how she does breathing on her own.  The chest x-ray showed no change in the pneumonia.

The ward has been absolutely wonderful in taking care of us. We have had meals provided and our other children have been taken care of.  They even mowed our lawn.  We thank them profusely for their generosity and support.

Amid the chaos and struggles of life...

there's this:

Zachary's not a giggler, so this is a rare treat today. 

(For those of you who get this via email, I think you have to click on the image to get to my blog and view the video.  If that doesn't work, go to kristiandjames.blogspot.com to see the video).

Saturday is a special day, it's the day....

...that we get up before 6 AM! Why, why, why do my children always arise so early on the non-school days! James had to be at work at 7:00, so he started taking care of Jess and Erica. I was grateful that he was letting me sleep in, but when Zachary cried at 6:06, he was all mine. Great.

This morning we saw two foxes in our backyard. Eldon claimed before that he had seen one, but it was hard to believe. But sure enough, I happened to look out the window when two were walking through. We live in the middle of a residential area, no real woods or anything, so I was surprised to see them. I wish I had gotten a picture of them, but there wasn't enough time. But I did get the kids to the window in time to see them. I was surprised at how small they were. At first I thought it was a cat wandering through our yard.

Another random happening, today at snack, Erica dropped her cake onto the floor while sitting at the table. Then on the way to the table, Jessie dropped hers. Then on the way to the table, Eldon dropped his popcorn.

We're still trying to potty train Jessica. Very smart girl, doesn't care a lick about being potty trained. It's not going well. She can do it, she just doesn't want to. How do you deal with that? If I knew, I could potty train her, eh? Well, we're sticking with it this time. She is 3-1/2 after all.

Shunt surgery

Erica's CT scan on Thursday showed that the ventricles in her head were enlarged, meaning that her shunt wasn't working properly. So the doctor scheduled surgery for Tuesday the 28th. We told Erica about the surgery and she took it in stride, but was apprehensive about getting an IV. So she came up with a plan. Erica said that she would tell the nurses to do a headstand. When they did, they would drop all their needles, and she would take them and shoot them away. When we told her she would be asleep when they gave her the IV, she said even though she'd be asleep, she would put her hands up to stop them.

When it was time to go, Erica was very resistant. She kicked and hit me all the way to the car, but finally acquiesced when we got to the car. We got the hospital and when to pre-op. She was very cooperative and got to watch a Tigger movie while she waited, which made the wait not so bad.

The doctor came to me to talk about the procedure. Of course, we'd talked before, but there were many questions still left to be resolved. Erica could have a shunt revision, which means that she could have the parts of her shunt not working replaced, or she could have an ETV (endoscopic third ventriculostomy). A friend of mine chose the ETV for her daughter and was very happy with the results. But every time I thought of it, I just felt sick. After discussing it further with the doctor, I still didn't feel good about it, so I decided on a shunt revision.

I went with her to the operating room for sedation. They put the mask on her (covered in chocolate chapstick - per her request). She was unhappy about it, but complied. I was then ushered out of the room.

The surgery from start to finish took about 2 hours. The doctor told me all went well. None of the shunt was working, so they had to replace all of it, which meant she had three incisions, 2 in her head and 1 in her belly. It's always been hard to get a vein in Erica, so I usually let the anesthesiologist know this. The past few times, it's only taken one poke, so I didn't mention it this time. When she came out of the OR, I counted 13 holes in her arms. It's a new record (it used to be 11). Guess I'll be mentioning it next time so they're aware!

She woke up in post-op, very unhappy. She downed a popsicle and got transferred to her room. She was upset at having an IV in her hand. She kept saying, "My hand looks terrible!" But she got to watch a lot of Dora movies and she loved picking food from the menu and getting food delivered to her to eat in bed. She always has a hardy appetite after sedation.

She recovered quickly and we were able to home the next day, which she was very happy about. She seems fine. I've noticed a big difference in her eyes. I had noticed her eyes becoming more crossed, and they look so much better now. She wants to go to school, but we haven't been able to wash her hair yet (tomorrow we can), so she's home for now.

Erica was with me as I was writing part of this blog, and she wanted to include her side of the story: "They cut me open and when I was asleep I forgot to put my hands up. I was unhappy about the surgery. I wanted to make a plan. Next time I saw Dan, which was the doctor who put the IV in me (note: really the nurse), his punishment is next time I see him I am going to lock him in the hospital room and leave him there forever. And that is how I am going to be mean to him. I was going to lock the door and run out of the hospital fast and my mom would come with me. We were going to run in our car and go home fast."

We got checkups for Zachary and Eldon today. Zachary is now 16# and 26" long, growing 3 inches and gaining 3 lbs in the past 2 months. Eldon is now 44# and 48", growing 3 inches and gaining 3 lbs in the past year. Hmmm, what's wrong with this picture? Eldon miserably failed on the eye test, so it's off to the eye doctor for us. Oh boy!