Sunday, July 24, 2011

When it rains, it pours...or in our case, catches fire

It's too bad my concept of God is more similar to "The Force" than an actual entity who can control our destinies. It would be much easier to blame him for all the crap we've had to deal with this past week.
Wow, this has been quite a busy week, I don't even know how to start.


The last time I posted, I spoke about us going home soon. We actually got them to let us go home on Wednesday afternoon instead of Tuesday so we could have more time to fix the apartment and get Leah's room ready for her. So, we rented a car on Wednesday since our car is basically out of commission until we get it fixed. We already spoke with a friend of ours who can fix it free of charge, so we were hoping that would happen this weekend, however, now it looks doubtful. Anyway, we got all the furniture, equipment and supplies needed for Leah's arrival from the hospital on Tuesday (the 19th). The room actually is not completely done yet, but it looks really cute, we decided to go with a garden theme. So, with the help of our friend Jen, we built the crib, the rocking chair, the changing table and the bookshelf on Tuesday night and got back to the hospital at around 3 am on Wednesday. I forgot to mention that 5 of our good friends helped us move a lot of our stuff on Monday night and stayed with us until midnight moving things.

Needless to say, we were absolutely exhausted the next day and had to wake up early because the baby was sort of freaking out. We were able to go back to sleep until about 11 am, at which point we started packing up our stuff to take home. At some point in the morning, one of Leah's pulmonologists, Dr. Ischander, came in to tell us that we were in luck because the sleep lab had gotten a cancellation and we were scheduled to do the sleep study at the Santa Monica hospital that night, after we went home. We were supposed to get home by 3 pm, because we were meeting with our home nurses-to-be and a representative from the nursing agency at that time. We ended up not leaving until 4, because some of the discharge paperwork got lost and they had to re-write it. grr.
She was also due for medications and we had to wait for the hospital pharmacy to bring them up. We finally were on our way home at around 4 pm. Oh, and to top it off, I was supposed to pick up her medications from one of the pharmacies that was close by to our house, the morning that we were leaving so that she would have everything before we left the hospital. And, of course they didn't have any meds ready at that time, until later in the day. I told the nurses at the hospital that it didn't matter, I could just pick them up once I dropped Leah and Zev off at home (since she was due for meds at 5).
Anyway, we got home and met with the 2 nurses we'd have, the supervising nurse and the representative of the nursing agency. Once inside the apartment, they asked us were they could wash their hands, and I told them that the bathroom door was blocked with moving boxes and they could wash their hands in the kitchen sink. I set the baby down and hooked her up to all her home equipment, the nurses came back to the room and started talking to me. Zev mentioned that something smelled like it was burning; at first I thought it was maybe one of Leah's machines, the moisture compressor that was getting too hot. And then the smoke alarms went off. Zev left the room and a few seconds later I heard "There's a fire! Get the baby out, get her out now!" I scooped Leah back up, grabbed her feeding pump and ran out the door. As I was running out, I saw the orange flames coming out of the kitchen and Zev trying to avoid them as he ran back into the kitchen to put them out. I ran all the way out the the front yard area, and could see the black billowing smoke coming out of the door. In my rush to get out, I forgot the oxygen tank and luckily one of the nurses got it and helped me hook Leah back up to it. I don't think Leah even noticed what was going on, she was smiling and laughing, being in the sunshine for the first time in months. On the other hand, there were still 2 large back up oxygen tanks left in Leah's room, which don't have wheels and are very heavy. Smoke was still coming out of the door and I wasn't sure if anyone was calling 911, so I started yelling "Fire!" to the other neighbors and knocking on people's doors. I didn't know if the fire was going to reach her room and blow up the tanks and the rest of the building. Luckily the agency rep went in and got on the the tanks. Some of the next door neighbors came running with fire extinguishers and we could hear firetrucks in the distance. Finally, Zev walked out of the apartment, his face and shirt black with soot from the smoke, and told us he put the fire out. The fire extinguishers had been too late,as he had already put it out. The firefighters were even later, they go there and just surveyed the area and used a large fan to air out all the smoke. At that point, my heart was racing and everything was so overwhelming that it all hit me at once and I started bawling my eyes out. One of the nurses offered to hold Leah while Zev hugged me and told me it would be ok. I just could not believe everything that had happened. Things could have been so much worse and it scared me to death to think what would have happened if Zev had not been able to control the fire and had gotten hurt. And to think what would have happened if Leah had inhaled any of the smoke with her trach. Or if we had gotten stuck in her room while the fire got worse. Or the oxygen tanks exploding! One of our neighbors came over and gave me a hug, and asked if I was alright. I was physically alright, but emotionally, not even close. I mentioned to the nurses that we were lucky that we got home when we did if this fire started out of nowhere. They replied "Well, I think since we were all trying to wash our hands in the kitchen and were squeezed in there, one of us might have bumped the stove and turned it on, which may have caught on the stuff that was on the counter next to the stove." I couldn't believe it. How does someone turn the stove on by bumping into it? And not notice?! Apparently, one of the plastic drawers from the fridge caught fire and it sort of spread up to the bottom of the microwave, which is now charred as well. Zev told me he was able to dodge the flames somehow, turn on the kitchen sink, grab the plastic that was on fire, throw it into the kitchen sink under the running water and put the fire out. Luckily, no one was hurt, although our new place now has charred walls and soot everywhere. Not to mention the icky powder from the fire extinguisher.
We had no choice but to go pick up her meds, since they were late; then head to the hospital for the sleep study. How lucky are we that we already had a bed set up for us away from home that night? We were running low on her oxygen tank though, so we had to take one of the large back up ones to the hospital with us. The sleep lab doesn't open until 8 pm, so we were told by Dr. Ischander to go the ER in Westwood, and ask to borrow a tank of oxygen there and just stay there until it was time for the sleep study. Her sleep study was fine, she actually slept pretty well, although it was exhausting because it was the first night away from the nurses and I had to stay up to give her meds and wake up at 3 and 5 am to give more meds, so I didn't really sleep that night either.

Thursday was not too bad, except for our slightly incompetent nurse who seemed like she really didn't know what she was doing and kept asking me how to do things that she should have known. She was nice, but neither of us really felt comfortable leaving Leah in her hands to take care of, even while we took a nap. We asked for a different nurse for the next day and we got someone awesome.

Yesterday, Leah had an appointment with Dr. Ischander in clinic and we went to see her at 11 am. In her office, they took all her vitals and noticed that she was running a fever of 100 degrees, and she recommended we go to the ER. So there we go again, back to the ER. They had us there until 6:45 pm, and took cultures of her trach, her blood and they tried to get her urine, but were unsucessfull. They sent us home saying not to worry, that she probably just has a virus and they would let us know if anything grew out of the cultures.

Sure enough, last night our friends Jen and Bruce came over to visit Leah and she had a fever again, this time of 101.3 degrees. We gave her some Tylenol and called our pediatrician, who was not on call so we got another doctor who was. She reassured me the same type of thing the doctors from the ER had said, that it might be viral, that because she had no other signs of infection, like diarrhea or vomiting, but if she developed them to call her. Leah had a rough night and so did we. At around midnight, we heard her making little sounds, which at first scared us since the last time that happened, she had issues breathing. The on call pulmonologist, Dr. Pornchai said it was a leak in her trach and that's why we could hear her voice now. But I looked at her trach and saw some goo, and suctioned her and the noise stopped, because her trach was not plugged anymore. I guess, she got a mucous plug and her voice was audible through her throat. It was so wonderful to hear her again though, even though she was probably having issues breathing at that point. I loved hearing her little sounds that she probably would be making all the time, if she wasn't trached. They have told us that as she grows, she'll get a leak in her trach and will be able to produce more sounds though.
Anyway, she continued with a high heart rate of 215-220 bpm and temperature all through the night, to the point where the home nurse was sort of freaking out and suggesting we call 911. We didn't, just because we've seen her heartrate go up considerably before.
Meanwhile, I was trying to get a hold of some doctor that we could speak to who knows Leah so that they are aware of the history and we don't have to give so much info about her. Also, so that they know what her baseline and how she normally acts and sounds when she's doing fine. I was so shocked at this page operator who was trying to page different doctors for me and the additude she gave, was crazy. She was so rude, and sounds almost annoyed that I didn't know people's name and that supposedly I "didn't specify what kind of specialist" w needed to find that right doctor. Excuse me for wanting to speak with the correct person, she was sooo rude and mean. She called me back 30 minutes after I spoke with her and let me know that she couldn't reach Dr. Ischander, so I took advantage of the chance to let her know. I basically told her that there was no need to have the annoyed tone of voice while she's on the phone and no need to be as rude as she had been to me. Instead of an apology she acted defensive and told me that she was just trying to help and that I sent her on a "wild goose chase" to find the right doctor for us. It was completely frustrated because she didn't understand that I didn't want an explication of what happened and why she was rude. I just wanted to hear an apology, something to let me know she understood. But she just kept on saying "I was trying to help you, I busted my butt looking for someone for you" but ok, thanks for letting me know. Please lady, like I need to deal with your crap on top of everything else

Anyway, that's about it. The doctor told us to take her to the ER and Leah is now at the hospital for at least another week, while she is treated with antibiotics. We shall see what happens next, every day seeems to bring something new.
I'm going to sleep now because I am super tired,
Have a great night.
Oh! and I'll post again tomorrow with pics for you guys!
Peace!
Frani

Tuesday, July 19, 2011

Going home and stressed out!!

Hey Everyone,
I know I haven't posted in forever, things have been crazy recently.
We were told she would be discharged last week and had to rush to find a 2 bedroom apartment. Luckily we saw one we really liked last saturday and started all the paperwork on Tuesday (the 12th), we got approved and signed the lease on Friday (the 15th), and basically moved our entire apartment over the weekend and finished tonight, with a little help from our friends.

Leah had her surgery done last Thursday (the 14th) where they did 3 procedures laparoscopically, meaning they made 3 small incisions on her belly instead of a huge vertical cut. The operation was a success. The gave her a G-tube, a fundoplication for acid reflux, and another procedure, which I can't remember the name, that opens the end of her stomach to she can have faster gastric emptying.
She also got her glasses last Wednesday and has been using them everyday. It looks like she can see her toys and our faces pretty well with them, although it's hard for her to keep them on, since she moves a lot. We have to make sure we check that they aren't skewed on her face so she doesn't get dizzy. Hopefully she'll get her contact lenses soon and those will be easier to deal with for her.

So, they are looking at discharging us tomorrow (or shall I say later today, since it's 2 am). We are really not prepared, since we moved everything into the new place today and basically only have her crib (which is still not assembled) and her dresser for her clothes. We need to buy more furniture for all her machines, since she will have an oxygen machine, a suction machine and the cool mist for her trach. All of which need some sort of table or desk or hard surface. We will probably have to take a trip to Ikea tomorrow and get something for her room, as well as assemble everything and get it ready for her.

As if that wasn't enough to have to deal with in a day, while I was driving home today from the hospital to move more stuff, our car started making a really scary rattling sound and we will have to take it to the mechanic tomorrow. Can you believe that this had to happen the day before discharge?!?! I'm so stressed, I don't know what to do with myself. We want to talk to the doctors tomorrow morning to see if they can discharge her either tomorrow evening or Wednesday morning. We will probably have to rent a van in the meantime, so that we can still work on everything, so that's just one more expense.

I know it'll be great to be home and out of the hospital, but I feel like everything is moving so fast, and like they are rushing us out at the worst possible time. We didn't even know that we would even need a larger apartment until they told us that she was going to be discharged soon. We had no idea she would need so many machines and supplies. We really didn't know what or when to expect her discharge, but I think a little bit of a heads up would have been nice.

On the other hand, she has been doing much better lately, she slept really well last night and tonight, so hopefully she will continue this way for a while. She is also at her goal feeds of 1 oz. of breastmilk + fortifier per hour. This is great, since it means the G-tube is working properly and she is tolerating it well.

We also have started receiving a ton of mail and packages from people all over the world. She's gotten several beautifully written letters, a couple stuffed bears (one a princess and one a darth vader bear, lol), a really nice Faberge egg necklace with a little angel on the inside from a lovely family in Singapore, some children's books; and more. We even got a great letter and beautiful drawing from Katie Goldman, the little Star Wars fan girl that was teased about her SW water bottle at school recently. It really has been overwhelming the amount of support we've been receiving. I know I mention it in almost every post, but it's become something that we really feel helps us, and we look forward to it.

I am so exhausted right and don't have the energy to post all the pictures I'd like you all to see, so I promise I will try to post them this week, maybe after we are settled at home. Plus my phone is dying so I can't even access them right now anyway.

Well, wish us luck tomorrow with all the craziness that I'm sure will ensue. I have some more detailed stories about some other incidents that have happened at the hospital, which I will rant about later.

Have a good night!
Peace,
Frani

Sunday, July 10, 2011

A very scary morning.~Dad Reports

1.

I'm booking a hotel. I can't place; for a second, where I am, but I'm here at this hotel. I'm upset. The room is not reserved. In the distance I hear a fire alarm going off. Everyone starts to panic. People are running everywhere. The alarm gets louder. I hear my wife in the distance. I panic and try to follow my wife's voice. She is calling out the baby's name "Leah, Leah, come on baby". Again, I try to follow her voice. I am concerned, even frightened that I may not get to them in time to save them even though I do not smell any smoke or see a fire. The hallways seem to get longer. "Where the F*!K are they!", I think. I can hear Frani's voice even louder. But I STILL can't seem to find them, in what has turned into a maze of hallways and rooms. Then all of a sudden, total darkness.
My eyes begin to open. Wait,I was dreaming? But I can STILL hear the fire alarm. By now, I've realized that it's baby Leah's monitoring alarm going off. My wife is trying to remain calm, but I see her worried face as I try to wake my self up.
The baby isn't moving. I look at the monitor and she is "de-sating". Her oxygen level is going lower and lower. It is below 94%. That isn't a good thing. My wife begins to shake the baby harder. She is now at 88%. By now, all my "lights" are on and I realize the gravity of the situation. I try not to panic. My wife is calling the baby's name louder. The nurse seems to be taking forever to come into the room. But that is just an illusion; the effect of the adrenalin and my panic mode. Things are not happening fast enough, except for her numbers. They are going lower faster and faster. Finally, the nurse arrives. We explain what is happening to Leah. She begins to calmly but effectively go through her motions. "She needs to hurry", I think to myself. Again, it's all in slow motion. The baby is now as low as 80%...not good.
She pumps up the oxygen level. It's not working. A few minutes later, the doctors arrive. Two and three year residents and a fellow (Doctors),circle around the bed. They look, they observe, while the nurse does most of the work. They confer with each other and think out loud. The nurse realizes the oxygen is not working. Just then, a Respiratory therapist tries to come in, but it's a full-house. From the doorway of our room I see her investigating all the connections and she says, "It's not connected...the trache collar tube is not connected". She looks around the bed and follows the top that is connected to the baby's trache, down and around until she reaches a break in the connection. The baby is not responding because at one point of the night; or morning, the tube was mistakenly disconnected! Some in the room breathe a sigh of relief,while others think it's funny and chuckle. I am not laughing. I am furious, but I manage to keep quiet as not to add to the situation. I want answers. Why is my baby not breathing at 100%? Why is she so lethargic?

For the past 3 days Princess Leah has not been able to sleep. Her movements shake her enough to wake her up from any slumber she attempts. Yesterday,mid-day she finally fell asleep. She slept and slept. I began to think that maybe it wasn't just that she was tired from so many days without sleep. Was she giving up? I worried. I talked to the nurse casually, holding in a bit of panic. She assured me that Leah was simply tired. I believed her and went on.

2.

We had to go shopping for another apartment. We have a one bedroom and according to the Hospitals Case Manager, we needed another room for Leah and her massive amount of devices and equipment since there was talk of discharging her. We had a week to look for a new place and plan a move.
Yesterday, we looked and found a few reasonably priced apartments. If it wasn't for the financial support we have been receiving from our friends in the Star Wars community and those that have fallen in love with our little Princess Leah, we would not have the funds(at this point) to move to a new place so quickly. We had been putting our lives and work on hold, to be by her side vigilantly. I have never ever regretted that decision EVER.
We headed back to the hospital. I couldn't wait to see Leah again. I am anxious. When we arrived. I found her; once again, extremely lethargic. Our friends Alana and Anabel (from her support group "Leah's Angels") had come to visit Leah. They came to distract us from all the anxiety we'd been feeling for the past 60 plus days. It was much needed and their hugs are always appreciated. Throughout their visit, I would check on the baby. She still looked out of it. In my head, I began to worry. Hours went by and our friends left. I asked my wife if she thought the baby was okay. She felt that maybe the baby was just tired. I worried. Something didn't seem right to me.

3.

The doctors are still hovering over the baby. They try to calm us, but it isn't working. My wife is upset and angry. They try again, to explain to us that despite her "de-sating" she is back up at a 100% now thanks to the reconnected trache collar. Still, they think she is too lethargic. "Really? You think?" I sarcastically thought in my head. But they assure me that all her vitals are fine and that she is probably a bit too sedated. Is it the new drug, tegritol? Is it all the Clonopin, Clonodine all these drugs in her system? They turned her feeds temporarily off. I want answers. It's hard to get them. She really is a mystery to many at this hospital. Genetics, the super sleuths of the medical field are trying their hardest to find genetic clues. Neurology, is trying very hard as well. In fact, they have become so protective, that they have asked all medical teams to report to them first with any clues, before approaching us so that we do not mis-interpret or panic with any of anyone's findings. They almost feel like family now that we've been here for so long. I know they feel for our situation. They have even giving us a few hugs in the process of all this craziness. It has been so appreciated.
But today, I'm angry. I'm angry that I have to correct the newer doctors as to what she had and when she had it. By now, I know all the medications, and what they do and how long acting they are. I'm angry that I'm not a doctor. I'm angry we still don't know what she has. I'm angry that I cannot cure her.I'm angry I don't know how long my baby will live. I'm angry that my baby isn't home in her crib. I'm angry that I'm angry.

4.

Several hours have passed. By this time, we have already changed Leah's diapers and bathed the baby ourselves in an attempt to try and wake her. Frani gently massages her little body while using her "happy" voice. Leah responds. She stretches with a yawn or two. She is still not able to completely open her eyes and when she does, they don't open all the way. I am somewhat happy about this, but I cannot stop worrying.
My friends, the Neurology team come in. They've been told what has transpired.I see their faces and they are not happy either. They have been with us through all the ups and downs of this emotional roller-coaster ride. I feel connected to them in some ways. I wonder and hope they feel the same.
They explain to me that the newest drug we have tried should not sedate Leah in such a way. They approach the conversation; as they usually do with us,from a very layman perspective. I understand them. I'm convinced it is not the tegritol. I've learned to trust this team. I joke that now that we are on the "regular floor" I miss the P.I.C.U.'s quick response. I miss the doctors in that unit. Although, I do not miss the cold floor and the cries of pain from the children at night, or knowing that one of Leah's neighbors has died. I DO miss the crew that made me laugh, when they felt I was feeling down. I have to give credit to the nurses; they became my therapists at times. I never want to go back to the P.I.C.U. with Leah again...ever.

The Neurology doctors continue to discuss plans for Leah. They want her out of the hospital. While I worry about leaving, they explain that the hospital environment is not healthy since it is a breeding ground for bacteria and infection. They want her home, away from all that. Their theory is that Leah possibly got some sort of infection that is causing her to feel this way. It can also be the Clonopin (a sedative). Tests will be done later in the day.
The attending Pediatric Neurologist feels my anxiety and says that he will talk to the floor team. I know what he means, and it is appreciated. We've been through so much. He knows this.

5.

I have been taking a nap with the baby for most of two hours. Frani has gone out with her mom to have some mother daughter time. Frani is lucky. Her mother lives nearby and is able to comfort her and lend her ear and shoulder. She makes the time to help us out, when we need a break from the hospital, even if it's for a few minutes to catch our breath and decompress a bit.I am touched by how close they have become...even more than before. Life has not been easy for them, but they have survived. It makes me happy to see the relationship reach a higher level.
I have also grown to understand and get closer to Frani's mom as well. I am thankful that I have her. I see her own desperation for answers and even anger at times. But I remind her, that Doctors are humans and not gods. She jokes "Well, they should be!"

One of the floor resident Doctors gently opens the door to Leah's room. I like this doctor. While the others were nervously laughing about Leah's trache collar tube not being connected, her face was more one of embarrassment and concern. As I assumed, she apologized for the mistake and assured me that would never happen. I explained my disdain over that. She absorbed my anger. As I was told by Neurology, she said tests would be done and that her team thinks it is not the tegratol either. They are holding the Clonopin, and hoping she does well as they ween her off of the semi-addictive drug. The dosage is a small one, but none-the-less she has been on it since she was in the P.I.C.U.. She also informs us that they will not be operating on Leah for her G-tube on Monday. I am not surprised by this; given the morning episode we had. In fact, I told her that I would NOT sign anything in regards to that, unless I felt it was completely safe and I had enough evidence to convince me she was ready for it. She understood.

4:15 pm. Leah lays in her bed, still a dazed with limited movements. We wait for her levels and tests to come back. I talk to her. Somewhere in-between here and there, she manages to tighten her grip. I hope it's her way of telling me she can hear me. I can't stop staring at her. I examine each inch of her tiny body. I close my eyes; at times, to feel the soft skin of her hand gently caress my cheek. I talk to her. I tell her how much we love her and how much we need her. I tell her that I am proud to be the father of such a strong little girl. If she doesn't understand me, I hope she can feel my words. I tell her how much the world loves her, and of all the hundreds of emails, messages, letters and posts from all over the globe, have learned to appreciate their lives again, to Love again,to have Faith again, to be human again. That I have received emails from parents that have told me that reading her story, or seeing her in the news, has changed them and brought them closer to their own children. That I have connected with others in similar situations to ours. That we have been contacted by attorneys that want to help other families like ours by starting a foundation in her name.
My beautiful baby Leah,my Princess, you have been on this Earth for less than 5 months and already you have touched so many of us.

I LOVE YOU LEAH.

Friday, July 8, 2011

Some good news again...

Hey Everyone

So, we got some good news today. The last test that they did for Shindler's disease and it came back negative, so that's one more thing ruled out. They also got the results back from the cataract and conjunctiva biopsies, which neither showed any clues or abnormalities that they could see. So, our attending doctor for Neurology, Dr. Lerner told us that hopefully the gene sequencing test will give us some clues, but she may have something completely new that they haven't seen before, something they may call "Leah's disease", though it's not official of course. They can't seem to find any movement disorders that also cause cataracts.

She had been doing pretty well with the Tegritol since they started her on it, though they changed the administration of her dose a little a few days ago, which seems like it may have affected her. She was getting it 3 times a day, but we noticed that at about an hour or so before her next dose, the movements we coming back a little. So, they split up the same dose to 4 times a day, so that it was more even. But since the change, her movements seem to have increased and for the past couple of days, she really hasn't rested much. Zev and I take turns alternating between sleeping on the bed with her and on the sofa. Zev's turn was on Wednesday night, that day we started to noticed the increased movements. She stayed awake most of that night, and Zev stayed awake with her, trying desperately to put her to sleep. Of course, she didn't rest at all, she slept maybe about 30 minutes. The following day, I stayed with her most of the day while Zev caught up on some of his sleep and went to a doctor's appointment. He ended up sideswiping a car on his way there, it wasn't too bad, just a small scrape, and luckily the other driver was really nice (a rarity in LA). He's never gotten into a car accident, ever; so I'm sure the lack of sleep was the cause.

Last night, it was my turn to sleep with her, and again she stayed up all night and didn't sleep. She looked so tired and you could tell she wanted to sleep, but her movements kept her awake.

They gave her Tylenol, Benadryl, an extra dose of Clonapin, and Ativan. Neither of the drugs touched her, she stayed awake. They are going to see how she does tonight and maybe tomorrow they will change the Tegritol dose back to what it was.

We're exhausted and frustrated at the fact that we still don't know what she has, but we gain strength from her, when we see her fight and try to combat her movements, it helps us keep going. She really is an inspiration and although we have our moments of desperation, she keeps us going.

Sidenote: Zev is so tired right now, he was changing the baby's diaper and had gloves on, then he went to wash his hands and poured soap into his hands with the gloves still on, hahaha!

She had some physical therapy again today and her therapist said she was doing better with her exercises, she will hopefully continue to improve with time and practice.


So, they are talking about us possibly going home soon, maybe in a week or 2. We already started ordering the equipment she'll need at home. And our insurance is arranging for home nursing care to help us out once we go home. We are definitely going to have to move to a bigger apartment, since all this equipment most likely will not fit in our small one bedroom. We had planned on moving once the baby was bigger since all her stuff fits in our bedroom, but now that the circumstances have changes, we will need a lot more space. So, we already started looking for places in the same neighborhood, and we're going to go see some apartments tomorrow, while my mom stays with the baby.

In a way, I'm happy that we'll be home, and to be able to sleep in a bed, but on the other hand I'm terrified. It's so reassuring to know that there is a doctor at your disposal 24-7 at the hospital, so if something scary happens at home, it won't be as easy. At the same time though, she is so much more susceptible to getting sick at the hospital with all the bacteria floating around from other sick kids. Plus, they were telling us that babies tend to get better much faster when they go back home. Anyway, we'll see, hopefully we'll have a set date soon that I can share with you.

Leah failed her swallow study a couple days ago. She was having a lot of her movements still, which made it worse. Although she was able to swallow a couple times, her coordination was still not up to par with what they thought would be safe for her to swallow efficiently. The GI surgeons came by today to look at her, since she sill be getting a G-tube. This will allow us to take her home and continue feeding her through the tube, but not the NG-tube, which would be easy for her to pull out in about 2 seconds. They are trying to decide if they are going to do a fundoplication. It's a procedure where the very top of the stomach (fundus area) is wrapped around the base of the esophagus. The muscle tone of the stomach can then help pinch the top of the stomach closed, which would stop any acid reflux from happening. They haven't said they will do it for sure yet, but if they do, they want to do both the G-tube and the fundoplication at the same time. Hopefully we'l know by Monday and I can tell you then.

Alrighty, it's getting late and I'm a zombie at this point, so I'll go for now. Thank you once again to all the people who have sent us their suggestions and who have tried contacting other doctors for us. As well, and a big thanks to everyone who has donated or sent us messages on here or on the Facebook support. Your words really help us get through our day sometimes.
Good night!

Peace,
Frani

Tuesday, July 5, 2011

Awesome Video made by our friend!

Hey guys,
Check out this great video made by our friend Eric aka Jedi Elvis. He sang and put together the video, which is very beautiful.

Monday, July 4, 2011

Cataract Surgery, Tegritol and Tracheitis

Hey All,
Sorry I've been AFK for a while, it's been hard to find the time to write recently.

So, her left eye cataract surgery was a success, everything went well and her eye is healing nicely. When they did the surgery, they also took a little piece of tissue from her conjuntiva so that they could study that AND the cataract that they removed. The ophthalmology doctors have been coming in to take a look at her eye for the past couple of days and are happy with how it looks. Leah also got her prescription for her glasses and we are going to look at some of the frame designs and size her for frames tomorrow. I will hopefully have some pics for you then.

Neurologists and us have noticed a significant difference in her movements with the Tegritol she's been getting. She started it last Monday but they increased the dosage on Wednesday or Thursday and it really seems to be helping with the "fits" she has. I don't think we've seen one in the past couple of days actually. Her overall movements have also improved and her eye movements seem to be lessened, although she still has some fluttering up and down of her eyes.

What's even better is that we are no longer in the PICU! We have been moved to the regular floor as she is much more stable now. We moved a couple days ago and she's been doing really well. The only bad thing now, is that she's gotten a bacterial infection in her trach area, called Tracheitis. She had been having increased heart rate, body temperature and secretions, so they got some of her secretion cultures and
found that she had some bacteria there and lots of white blood cells. They are still waiting for the viral cultures to grow to see if she has a virus as well. They've started her on a couple antibiotics, which of course have given her diarrhea (ew, I know). She also has been vomiting a bit too, which could be because she is swallowing her secretions and they upset her stomach. The vomiting is also caused by having to suction her trach out so much; every time we suction her she coughs a little bit to help get the mucous out, but that triggers her gag reflex and she vomits. So, the past couple days she's been feeling pretty icky, but at least she's being treated for that and it won't last for too long.

Neuro also told us that the tests they sent to look at her amino acids looked normal and they were going to continue investigating. They were happy that the Tegritol seems to work though. The Exome gene sequencing is still in progress.
Her pulmonologist came by and said that they would start her on some Pulmicort, and increase her doses of Xopenex to every 4 hours to help release her secretions. He was able to see some mucous plugs in her lungs when they did a chest X-Ray, so hopefully the 2 treatments will help her out. He was also going to reduce the oxygen support she is getting on her trach collar from 30% to 28%, and if she tolerates it, he may even bring it down to room air (21%). Then she would only need to trach collar to push moisture into her trach.

We did a have a little scare 2 night ago where she was sleeping but she started de-sating and her oxygen went down to 70%. She would come back up though after a little bit. Her tummy looked really big and after they did an X-Ray they saw that she had a lot of gas, so they were able to suck air out of her stomach with her NG tube. After they did that, she was breathing a little better and her oxygen sats stayed at 100%, but the next day they found the infection, so it could have been attributed to that as well.

For now, she's being treated and seems to be pretty comfy while she sleeps. She's been sleeping a lot, I guess feeling that sick is just tiring her out a lot.

When talking with the neuro team, they mentioned it could be something that have never even been diagnosed, something new. At least she isn't having any degradation, or at least it doesn't seem that way anymore. It did at the very beginning, but now she's smiling more, and breathing better and it seems like she's doing better with her movements with this new med.

We'll be spending 4th of July here in the hospital, add one more holiday to the list that we've spent here. But, we'll have some friends come over later and maybe get to watch some fireworks from the hospital window.

I'm starting to see some light at the end of the tunnel, as I see her (apparently) get better. But only time will tell, for now: Thank you to everyone who has reached out to us and supported us, it has meant so much to us.

I will try to post some more tomorrow
Peace
Frani