Friday, November 27, 2009

Nora the Inchworm

We are home and Nora is returning to normal. She had a good Thanksgiving and is returning to her regular schedule. She got her stitches out earlier this week and next week she will start back with some of her therapy and should be back in full swing by mid-December.

I got a new video camera for my birthday and have been taking some videos of Nora around the house. Here is one of her "crawling."

Wednesday, November 18, 2009

We're Home Again!

Nora was discharged yesterday!

She did so well on her feedings. As soon as we started giving her bottles she started guzzling them down. I think she has finished every 8 oz bottle she has had since then! Since her antibiotic course is completed and the tests show no more infection, she was discharged to finish recuperating at home. She is still having periodic fevers and digestion issues, but they should improve as she rests and gets medicine at home.

We came home yesterday afternoon to a house in shambles as the house painters were working. Andy made a little spot on the basement for Nora to play away from the activity. Nora's schedule is all out of whack from the hospital. She seems to only be sleeping for 3/4 hours at a time. It is like she is a newborn again! Hopefully she will do better tonight.

Andy got to sleep an entire night in our own bed for the first time in nearly two weeks! I took the night shift with Nora last night to let him get some rest.

I am easing back into work this week as Nora continues to improve. Hopefully she will be back to 100% by next week and things will get back to normal. Whatever that is.

Thanks again to everyone for their support, prayers, gifts, food, emails, cards and more. Andy, Nora and I are lucky to have so many friends and family who care about us.

I got a new video camera for my birthday so my next post will hopefully be some happy videos instead of a hospital status update!

Monday, November 16, 2009

Beginning of Week 2

The weekend was fairly uneventful for Nora. Thankfully. She is continuing to receive her feedings through her NG tube. Still not up to her nutritional goal of 45 cc/hr. Right now she is at 30 cc/hr. Her stomach is just not digesting the stuff. She hasn't vomited since Saturday though. I believe the antibiotics will stop sometime between now and Wednesday (I get conflicting info from each Dr I talk to - so I really don't know). It may be the antibiotics that are upsetting her stomach so much. So, hopefully after she comes off of them her digestion will kick into gear. It will take a couple days to get her off the feeding pump and onto oral feedings before we can go home. I think it is possible it may be by the weekend though. Who knows really.

She has been more alert each day. A little fussy and whiny, but less and less. She is still not back to her normal self. We are waiting for her to smile still. She plays with toys and rides quietly in the stroller, but no smiles yet. She used to like to make all kinds of lip smacking and kissing noises too. I haven't heard one yet.

She has become very distrustful of anyone who approaches her which is sad. She used to be happy to see anyone - even strangers. Now she just wants to be left alone. She doesn't like people to even listen with the stethoscope or take her temperature. Even right now she is going to sleep for her nap - she has been lying still and quiet with her eyes open in her crib for about a half hour. She is not interested in having me come sooth her to sleep. She just wants to be left alone. Hopefully as we get home she can regain her trust in people and will forget about all the needle pokes and discomfort of this place.

We are in somewhat of a schedule now with our parents both helping to watch Nora in the evenings. Andy has the graveyard shift which is the hardest. He has tried to get sleep during the day at home, but I don't think he has had more than 6 hrs of sleep in the last 10 days. I have been doing the day shift so am able to keep a normal nighttime sleep schedule of 8 hours or so.

Deja Vu to last year - the contractors are showing up at our house today in the middle of this mess. We are getting the entire house painted on the inside. Luckily it is an easier job than our bed/bath remodel that was going on during the NICU stay last year. It should be done by the end of the week instead of taking 8 weeks!

Thanks again for all of your support. It is helpful to have so many people praying for Nora!

Friday, November 13, 2009

First Hurdle Over, Now on to the Next

Yesterday and today Nora slept all day. I mean ALL day. She had to be woken up to eat and just slept right through getting her temp checked and people listening to her through their stethescopes all day. She falls asleep while eating. So, it is back to the NG tube! Just like when she was a tiny baby! The tube give us a way to get her formula. She has switched to higher calorie formula to try to increase the nutrition content. Unfortunately, she is still vomiting though. I would say she keeps some of it down, but probably about half comes back out. I think the next step is to put her on more of a continuous drip of formula rather than slug it all to her little belly at once. I think she may be able to come home once her feeding is stable. Her antibiotics are all oral now, so there may not be a need to stay here.

When she is awake, she is not herself yet. She is reaching for toys and her blanket - so that is good. Her arms and legs seem to be working well. She is a little unstable sitting, but it will come back. She just has a dazed wide-eyed stare and hasn't smiled in days. Hopefully this is the effect of some of the drugs she is on. In the last day she has come off a lot of them though. She is not on any pain meds but Tylenol. She is getting some anti-seizure meds which can make you sleepy. We just have to wait and see.

Thursday, November 12, 2009

Surgery complete. Now time to get better.

Yesterday morning Andy work me up with a phone call at 5:45 am saying that Nora's surgery was going to be at 7 am. Ugh. It is a 45 minute drive from our house to the hospital. The nurse got on the phone and said that she would tell them it had to be at 8 since I was not there and it wasn't a good time for her anyway (I bet - shift change is at 7). So, I took a quick shower and managed to get here at 7 am anyway.

15 minutes after I got here they said it was going to be at 11 am. So, we sat and Nora slept pretty much until the surgery. Overall it went good. The Dr took some fluid from her brain, tested it, and the test came back negative for bacteria. They will do a 2 day culture as well which will come back tomorrow. She is all sewed up now with nothing hanging out of her head. Well - except for her IV.

She was generally good yesterday since she had no vomiting - except for coming out of anesthesia. Although she also had no food really, so I am not sure if that is why we had not vomiting or what. Also, there were no "spells." However, she was extremely irritable when awake and drugs didn't seem to help too much which is quite frustrating.

The latest is the nurse just came in and said they want to up her calorie content in her formula and put in a feeding tube. This does not make much sense to me since she is eating fine - it is keeping it down that is a problem. The nurse said that it didn't look like she ate much yesterday. Duh, we had to keep her from eating before the surgery - which we thought was at 7, then 8, then 11 - then after the surgery she was nauseous so we only gave her pedialyte. It is not because she won't eat! So, I haven't discussed it with the doctor yet, but I am going to make them give her a chance to eat the formula by mouth before we give her the tube.

I am reminded of the NICU days in that I am now getting pulled into the drama of the Bronson workplace and getting annoyed with things. Yesterday, the PICU nurse called down to the OR nurse and asked if they could put in a new IV during her surgery. Her old one was getting a little sore and it is quite an ordeal to get one started and much less traumatic for her to do when sedated. When we got down to the pre-op, the transport nurse told the anesthesiologist that the PICU wanted a new IV. He said "Do they want us to clip her nails too?" Ohhh, I knew that wasn't going to end well. Of course, word got out and all the nurses up here have been fuming about it. Plus, the IV that they put in during surgery was no good anyway. They put it in a difficult spot on her left wrist and it was clotted off by the time she got back to the room. This morning Nora got a new IV in her head. Sounds gross, but it is actually better because then her arms and legs are free.

There is also a battle of equipment. When Nora gets moved from her room, to CT, to OR, etc they take along a monitor and cords and stuff. They are very protective of their equipment and there is always a debate over where it goes when she gets back to her room. I don't know why they don't just label the stuff.

Oh well, I hope things start improving so I have the luxury of spending more energy worrying about this petty crap.

Tuesday, November 10, 2009

Day X -- Ok am not going to count the days in the title anymore.

So what happened today? Let me think. Well, I got here at 7 am. Andy stayed the night last night. He got here in the afternoon after her first "seizure" and didn't go home until this afternoon! Hopefully he is getting some sleep at home now since he is coming to relieve me at 11 pm.


When I got here, Nora was sleeping with Andy in the recliner. Not 30 minutes after I was here, her monitor went off alarming us that her oxygen was dipping. The nurses and doctors sprang into action and got her back into bed and gave her some oxygen. Pretty startling awakening for Andy! It was dark in the room and there was a lot of confusion so it is not really clear that it was a seizure.


Later in the morning she took a nap in my lap. She was scheduled to go down to the OR at 11 to have the CSF in her ventricle sampled. First though, we decided to draw some blood that we needed to test. After a few pokes and quite a bit of protesting, Nora decided she had enough and she started some sort of seizure - like activity again. Another bunch of people came in, got her settled and she fell asleep. Additionally, she started getting a rash as a result of her antibiotic - called Red Man Syndrome. We decided with the PICU doctor that she did not need to go to surgery today since she was having these issues. We postponed it until tomorrow.

That is the last excitement she had today - thankfully. The rest of the afternoon and evening so far she has been sleeping and eating without any drama. The neurologist says he doesn't think that the seizure are actually seizures. They have some characteristics of a seizure, but not all. He just called them "spells." How is that for modern medicine? I thought people had "spells" in old novels. Anyway, he thinks the "spells" are not harmful to her as long as she doesn't get deprived of oxygen - which she won't be in the hospital. He also thinks they will stop when the inflammation in her brain clears. She is taking anti-seizure medicine anyway - just in case.

More tomorrow. Thanks to everyone for your concern.

Monday, November 9, 2009

Day 3 in PICU

Today Nora was sleepy, but seemed a bit more comfortable since she didn't seem to need pain medication in order to sleep. She fell asleep on her own a few times. Her neurosurgeon plans to draw fluid from her brain tomorrow to test to see if the infection is clearing. Since he needs to pull it from inside the ventricle, it will be done in the OR with sedation and the whole works. He will test the fluid immediately to see if there is bacteria, but the full results don't come back for a couple of days (sort of like the days long ago when I used to do "bug counts" at the paper mill!). If the immediate test (called a gram stain) shows no signs of bacteria. If there is bacteria, he will install the ventriculostomy - which she had with the surgery in the first place - so we have easier access to collect more fluid later if needed. If there is no bacteria, then she will just continue with the antibiotics for a couple of weeks and should be better.

Of course, things are always changing though.

This afternoon she had a seizure. This is a first for Nora. We have always been told to expect that she may be at risk for seizures, but she has not had one yet. After the seizure she had an EEG which showed she was no longer having a seizure (which was obvious if you ask me since she was playing with the sock covering her IV hand the whole time). The EEG did look a bit "abnormal" but she has never had an EEG done before, so it is hard to say why it looked like that. I think that if you have ever looked at pictures of Nora's brain (which I have decided not to post on this blog since they are sort of startling), you would be surprised if any sort of normal EEG would come out of it. So, for that reason I am not too shaken by any abnormal EEG. I think that her normal is likely different than most people. She seems to be acting normally now, although still sick and fussy. At any rate, we will now have to get her neurologist pulled back into the mix to sort out the seizure business. She is on some anti-seizure medication now to help prevent it from happening again. Maybe it is just from the infection. Or fever. Or - okay, I will stop speculating and just wait until tomorrow's post to find out more...

Sunday, November 8, 2009

Vocabulary Word of the Day: Subdural Empyema

Day 2 in the PICU.

Nora is still resting, getting a lot of IV antibiotics and frequent pain medications. When she wakes it is clear that she is still uncomfortable, so she gets dosed with more pain meds that put her back to sleep. She isn't eating much - or doing much of anything - right now.

She had another CT scan this morning. The neurosurgeon was pleased with how it looked. It appeared that the drain he put in the subdural cavity (area between the brain and skull) removed a lot of the fluid that was building here. Now it is just a question of why there was fluid there. It could be that the infection caused a buildup of fluid in that area, or it could be that by reducing the pressure in the right ventricle, the ventricle has become smaller and the brain is pulling away from the skull, leaving a space that will be filled with fluid. Option 1 is quite serious because it means she has an infection of the CSF which must be carefully treated otherwise there can be really terrible outcomes. Option 2 is also serious since it means she would probably need a shunt surgically installed now to drain the fluid from the subdural area. We will probably not get a real clear answer anyway, so I think that both options will be addressed. The brain is a very sensitive system where pressure changes in any one area affect the whole thing (remember PV=nRT?). So, it is quite complicated. I am thinking I should have paid closer attention in Fluid Dynamics!

We are working on getting a schedule set up assuming we are going to be in this thing for the next while. I really want to have someone here 24 hours with Nora so when she wakes she sees a familiar face. Andy and I probably can't sustain 12 hour shifts for 3 or more weeks straight, so our parents will pick up some shifts to make it easier. Andy will do nights. He doesn't mind it. I stayed here last night and it wasn't too bad, but I have an awful ache in my neck from this recliner I slept in. They have rooms with beds available, but I would prefer to stay in her room so I can be there when she gets woken by the nurse every couple hours.

Anyway, I will be on days and probably be updating the blog once in a while since it can get a little boring. Boring is good though. It means nothing catastrophic is happening. Stay tuned.

Saturday, November 7, 2009

Back in the PICU again

Well, we have had a little set back. Nora wasn't feeling so hot yesterday and today she was really not right. Andy and I called the doctor and took her into the hospital. After a couple hours in the ER and some scans and tests, she was back up in the PICU getting ready to have another drain put in her head between her brain and skull. The drain is working now and some fluid that was building up around her head has been removed. Tests of the fluid have shown that she has and infection in the cerebral spinal fluid. She has been getting antibiotics and has been running a little bit of a fever so has been taking some Tylenol.

Tomorrow she will have another CT scan so we can get a better idea of what parts of her brain are inflamed from the infection. Other than that, I think she will just get dosed with these antibiotics for a while until the infection is gone. I suppose if the infection is messing with her ability to properly drain the ventricles, we may be looking at some sort of shunt surgery? Who knows. The neurosurgeon will be back in tomorrow and may have some more to say after the CT tomorrow.

In any event, this will likely be a much longer stay at the hospital than last week. The doctor in the PICU has told us to expect about a 3 week stay. Like old times!

Oh yeah, today is my 33rd birthday. Not quite the party I planned on.

Wednesday, November 4, 2009

Home Sweet Home

Nora came home on Halloween! All in all her surgery and hospital stay was a success. She is back to herself pretty much. Today we took her to get her stictches removed. She will have a scar on her head, but it should be pretty well concealed by her hair. It is sort of hard to see already since she has brownish hair that disguises the railroad track of stitch marks on her head. Now she just has to step up her therapy a bit to work on her delayed left side. She will get another MRI in a few weeks to check out how her brain is responding to the new path for the spinal fluid that she got in the surgery.

Thanks to everyone for your concern during Nora's surgery!