Day 77

I did go out yesterday...took the bus to Northgate, went to a PartyLite regional & saw the new spring line! Also went & got my hair permed...something that I've wanted to do since before I found out I was pregnant.

I wanted to get a manicure & pedicure...but they are booked until Wednesday. I scheduled the appt even though it will be at night...not to keen on traveling at night...but I figure the bus should be safe.

Now about Brianna:
She is doing better but not great. She is no longer on the nasal CPAP. They took her off of the 3rd medication they had her on & she is starting to have awake times (kind of)...but her seizures are back. She also has to lay on her stomach all of the time because her secretions get too bad & she desats. Poor thing...she just looks so helpless. Her knees are starting to get a little sore too. :(

I finally got to hold her for the first time in a couple of days yesterday. She seemed to tolerate it fairly well. I sure missed being able to hold her & giving her whatever comfort that I could.

At this point I think the doctors aren't sure what to do about her seizures. We just have to keep playing with her medications, which is very time consuming. I haven't given up hope...just catch myself wondering what life is going to be like.

In other news...Kevin is home working with my dad today in putting in extra cable, phone, & network cables in our house that we are building. The house is coming right along. Never know...maybe I'll be in Seattle long enough so that when I go home...I'll be going to our new home. Gosh...I hope not...that would be a lot of packing for Kevin to do by himself (especially all the PartyLite stuff that's in my office!)

Well...I'm going to get some lunch. 'Talk' with you all again soon.

Day 75

Things were looking really good yesterday...now they aren't. I am so tired of this emotional roller coaster it's about to drive me nuts. Brianna has been put back on a machine that is like a ventilator. It's called a nasal CPAP (constant positive air pressure). Because of all the medication that she is on, it has made it very difficult for her to breathe on her own. This was the step to be taken before putting her back on the ventilator. On Wed they had to add another medication to her list because she started showing signs of seizures again. This has completely 'knocked' her out. She hasn't been awake since 6:00 Wed night. This was my wake up call this morning...I am completely devasted. We were on track to be coming home Monday or Tuesday...now I'm feeling we may never get home. I am trying to keep my chin up & be positive that she will pull through this just like she has all the other times...but it is really wearing on me. I have really begun to think about her quality of life. How long do we continue to help her? Are we really helping her or making her worse? So many things to think about. Nobody deserves to live the life that may be in store for her, but how do you, the parents come to that decision.

Since they have put her on the CPAP, she has started to turn back around. Let's hope that it continues. I will send another update today or tomorrow.

Day 69

I only have a minute as I haven't showered yet & I'm starved!

Brianna is still doing very good. I haven't sent out any updates
recently because there hasn't been anything to tell about. I caught
her awake this morning & she was up for 3 hours. It was beautiful.
She talked away & looked at me the whole time. I've been waiting for
that to happen again for days. Brought tears to my eyes.

Gave her a full bath last night to wake her up a bit. Then massaged her & did range of motion. She really loosened up & enjoyed it. I think massage is a good thing for her. In fact I'm going to get trained on how to do it the right way on Monday by the physical therapist. She has started to hold her head up a little bit too. Way to go girl! She is still having some problems maintaining her secretions, but she is starting to master coughing so hopefully that will help.

I bought a baby Bjorn front carrier yesterday at Babies R Us. Put her in it last night while I was cross stitching (yup took that up to...switch between knitting & cross stitching!) It was great. She was sleeping the whole time, but it allowed her legs to be spread apart a bit & kept her arms out too. She seemed to be very comfortable & so was Mom. My arms didn't go to sleep from holding her & I could do something else while still keeping her close to me. It was great!

I am holding up fairly well, just staying positive & hope that we will be back home soon. Well...tummy is growling & hair is feeling pretty gross! So I will email again later. Feel free to email me anytime...I look forward to getting emails from
everyone. Brightens up my day & makes me feel a little closer to home.

Day 65

Brianna was taken off of the respirator today. She is doing GREAT! She is having a hard time dealing with her secretions & has to be suctioned quite frequently. We are hoping that this will pass & it's just due to having the tube in her throat & the swelling. So she may just be a little reluctant to swallow. (Keeping our fingers & toes crossed.)

We spoke with the attending neurologist today & so far everybody is very pleased with her progress. They have many tests out & one of them has already come back (negative!) If all goes well, our stay here will only be a couple more weeks.

That's all of the news for today. Going to get some dinner now.

Day 64

No diagnosis as of yet. They have many tests out but take a while to come back. She is on a really high dose of Phenobarbital. The normal level is 20-40, hers is at 100. As a result they had to put her on a respirator & they are hoping to get her off of it tomorrow. The first time they tried to take her off, she didn't handle it very well, so hopefully this time it will be better. They are going to do a skin & muscle biopsy to determine a specific metabolic disease. They are also looking into doing another spinal tap for another type of disease. This will probably not take place until sometime next week.

Her seizures are currently under control & the neurologists are very pleased about that. The first few days she was pretty doped up, but the last couple of days she has had some alert times & the nursing staff seems to be very impressed with her interaction.

The goal is to keep her seizures under control by finding her maintenance level. Once they feel they have enough tests in process & she is stable, she should be able to come home. Some of the tests that they want to run take 8-12 weeks to come back, so it will not keep her here.

I will say however, that we definitely made the right move coming here. They are much more proactive instead of reactive. Even though we don't have any answers (and we may never), at least they are testing for more rare diseases & not just settling. This is the first time her seizures have been completely under control, that alone is an accomplishment.

Kevin is planning to fly back Wednesday afternoon. I am staying here with Brianna for a while to hopefully give them more time to get some answers.

Day 61

Finally getting on to a computer. I know that Kevin sent out an email this morning, but it didn't get to 'everyone'!

Everyone arrived in Seattle ok. Brianna & I came down on the private jet, but Kevin had to catch a commercial flight because there wasn't enough room on the plane for all of us.

Brianna is in VERY good hands. I am very impressed with the doctors & nurses. They seem to be proactive rather than reactive. Within an hour of arriving at the hospital, I had already spoken with about 8 people regarding her care. Most importantly the chief neurologist. He was not impressed with her seizure control & order more medication immediately. They kept pumping the medication until the seizures were stopped. And I mean PUMPED! The poor thing is still so drugged she hasn't really even been awake since we got here. But sleep is good, she really needed to give her brain a rest.

Because of the high dosages of medication, she was unable to exchange oxygen & carbon dioxide effectively, so they have intubated her (tube down her throat to breath for her). They have started to wean her off of this slowly, but currently is still on it. She is retaining a little bit of fluid, but that is one of the side effects of the Phenobarbital, especially at the level she is currently at.

They are running more metabolic tests to try & find a diagnosis. They have also suggested that Kevin & I speak with a geneticist (once some of this is figured out), to determine what the chances of this happening with future children may be. Keep in mind, at this point we don't know if it is a genetic issue or not. This would be a WAYS down the road.

They have started giving her breast milk again today & will slowly increase it if she tolerates it. Oh...some good news (I think). It appears that her brain is smaller all around instead of portions of it being smaller.

Well I think I am starting to ramble a bit! Kevin & I are doing well & are staying in a room here in the hospital, until the Kids Village is available.

Day 56

Brianna had 2 other apnea episodes Friday night. The RSV test has come back negative. We did find out that her blood sugar level was WAY low, 22, & should be between 80 & 100, which may have caused the apnea. We are also considering that the pyridoxine that she is taken could have caused it as well, it is one of the symptoms. The CT scan came back with no other new findings. Still awaiting the results of the EEG.

Her seizures are NOT under control & have progressively gotten worse the last 2 days. We have begun making arrangements to take her to Seattle for further care. We are waiting to talk to Dr Milstein in Seattle on Monday, to see if there are other medications he would like for us to try before getting on the plane to come see him. He is the head pediatric neurologist & came to visit her on the 20th of February. He recommended some treatment that can’t be done in Anchorage. If he says the magic word, we will be heading down there Monday or Tuesday. Who knows what’s in store for us then or how long we will be there.

I'll try to send something out before going to Seattle, if that is what happens,

Day 54

She had 3 bouts of apnea within 2 hours last night, each lasting about 30 seconds, and had gone so long that she turned blue. I was home alone for the first spell and was able to get her going again by stimulating her. A couple of PartyLite consultants were with me the second and third spell. I was on the phone with the hospital while Brianna was being held - again, they were able to massage her back into breathing.

Brianna & I took an ambulance ride back to the hospital & Kevin followed behind. Brianna has been readmitted.

It did happen 2 more times at the hospital, which I was somewhat thankful for. It allowed the nurses & even one of the doctors to see first hand what was going on. She is on an oxygen/heartbeat monitor at home, but I knew something was wrong before the alarms sounded. At this point we haven't a clue what is wrong. She has been stable the rest of the night after the last 2 episodes.

They are checking to see if it's RSV (Respiratory Synergis Virus). Which is a virus that is serious & can cause apnea. She was exposed to this in the NICU before she left & was treated with a shot (that cost $1000). But the doctor told us last night that it's not 100% sure to fight off the virus. I'm hoping its something as simple as that & nothing more.

The good news is when they measured her head last night; it was up .5 cm, which is EXCELLENT since it hadn't grown in 4-5 weeks.

They are going to do another CT scan today & another chest x-ray to see if something has changed. There is talk of doing another EEG as well. And of course, Seattle is coming closer & closer to us.

I'm starting to get a little worried. How long is this going to last? Will I be able to go back to work? Bills still have to get paid & on top of all of this, we were/are in the process of building a new house. What timing.

"God please help us get through this & get Brianna stable before May 20th so that I don't have to worry about paying the bills & can return to work, knowing that she is going to be ok."

I asked the doc last night if this is won of the hardest cases for them to have to solve....his response...it's pretty high up there.