Archives [2006] [2006 Maya]
The following are updates about Maya. The first 2 messages are e-mails I sent to Darin's mom Elisabeth. I decided that there were several others who I hadn't told so I decided to post all future updates here. I will put them with the newest entry at the top so you won't have to scroll very far if you've read several entries. (Message #1 is at the bottom)
11-1-2006
After dropping Gage off at preschool Kiera and I headed over to the hospital. When I walked in the room the nurse said that we could take Maya home!!!! YAY!!!! It took a while to pack up all her "loot" but we're now home. She has to be on the same medicine schedule that she was on yesterday. This has to continue through Sunday for some and a full week for other meds. I need to take her in for a follow up visit in a week. We're so excited to have her home and getting better. Now I have to shake my nasty cough and cold. This morning Kiera was showing signs of having a cold again. I hope that's all she gets.
10-31-2006 (update)
When the kids and I arrived I couldn't tell what had changed but I noticed that Maya looked different. They took the cannula off!!!!! She was on room air and between 91% and 95%!!! She was doing GREAT! Now going home is really going to happen. The doc had ordered the nebulizer to stop and she was put on an oral steroid as well as two different inhalers. The albuterol is her rescue inhaler but she will be using it for the next week. The Flovent is the one she will be on daily through the winter months. We need to prevent this from happening to this extreme again. I didn't know this but the doc said that every time her lungs get so bad that she needs hospitalization her lungs get damaged. A little every time. Apparently it takes a long while for them to repair themselves.
Halloween at the hospital was awesome!!!! Maya got LOTS of candy and attention. They were pretty busy with more kids than the days prior but they sure didn't forget about what day it was. Maya got into her dragon costume and sat in her bed. (all giggly) She was still on the saturation monitor. Every few minutes Debby (the child life specialist) would knock on our door and say "trick or treat" and bring in another bunch of candy. People call up the hospital and ask if they can bring in things for the kids. Debby said that Christmas and Halloween are the busiest times of the year for donations/gifts for the kids (we've been there for both holidays now). Maya got about 10 times more candy than her brothers combined. Darin took the boys home for dinner and took them trick or treating around the our neighborhood. LOTS of fun for everyone. Kiera and I stayed with Maya. When Darin and the boys were done trick or treating they came back to the hospital to bring Kiera and I home. What fun everyone had.
10-31-2006
The kids had a lot of fun last night. Anything is fun if they get free candy. The hospital staff made a spook alley complete with a "victim" on an exam table, a mad scientist, a crazed man juggling bones, witches, zombies and pirates. All done well enough to be fun and not too scary. They even had a fog machine adding to the atmosphere. Maya stayed in her wheelchair. I (Alleta) was in charge of her oxygen tank and cords.... Darin pulled a wagon that had Kiera and her carseat along with several other items no one wanted to carry. One of the Child Life workers pushed Maya in the wheelchair. We made quite a site. We had to leave the main hospital building and go across the street to the south to another building owned by the hospital to get to the spook alley. We acquired several grins from people in their cars watching us cross the street.
I went home with Darin and the kids to help get everyone ready for bed. Once I felt things were calmed down (particularly Kiera) I went back to the hospital to give Maya a bath. I really enjoy being able to spend time with her alone. Getting to know my oldest daughter without distractions. I have fond memories of my mom combing and drying my hair after a bath. I wonder if Maya will have the same fond memories as she grows up. She fell asleep after the bath. I hung around to relax and just watch her sat levels. The nurse ended up turning her down to 1/2 liter of oxygen before I left (around 12:30am). Her sats hung around 93%.
Darin said he talked to Dr. Adams this morning. Maya was still on 1/2 liter which is really good since she seems to always get worse after moving around (opposite of the rest of the world). He thinks that if all goes well she will be coming home tomorrow. YAY!!!! I can't wait for our family to be back together again. I haven't been in to the hospital to see Maya yet so I don't know anything other than that for today.
10-30-2006
Last night I went to see Maya around 10:30pm after Darin FINALLY finished his film project. She was already asleep but responded with smiles when I kissed her and said that I loved her. I spent the majority of the time talking with her nurse and the respatory therapist. He gave me a bunch of pointers on how to deal with asthma. Seems this is the first full blown asthma attack. No infection has been found this time. All the other times there was always something. I was VERY excited to see her down to 1/4 liter of oxygen. Meds were still the same.
Today Darin and I and Kiera went to see Maya after dropping Gage off at school. She was back up to 1 1/2 liters of oxygen. Dr. Adams (our reg. ped.) came to check up on her while we were there. He is switching one of her meds to albuterol and cutting back the frequency of the nebulizers. One every 6 hours and the other every 8 hours. The steroid had been cut back to every 8 hours at some point during the night. They will be see-sawing the levels up and down until both the meds and oxygen are both much lower.
I have to run... I have several costumes to get ready for tonight. They are having a halloween party at the hospital and said that it is OK for Maya to attend along with her siblings. They get to wear their costumes. The party has a pirate theme. Talon and Gage will be pirates (same costumes we already have) and Maya will be a dragon (still working on her wings). Kiera will hopefully be a ladybug. I have yet to get much sewing done and have to rush off.
10-29-2006 (quick update)
4:30pm - I just called and talked to her nurse - hoping that some of the labs would be back so we could figure out what was going on (worried mom here). The nurse said she's back down to 1 liter !!!!! YAY!!!! It must have been all the mucous they suctioned out for the test that was blocking her airway. Her blood tests were normal and her chest x-rays were greatly improved. WHEW!!! What she said was they would try to get her to blow her nose first and if she demands more oxygen they will just suction her out if the nose blowing doesn't work. It's VERY stressful for Maya - she screamed and it took 3 nurses pinning her to the bed with her blanket to hold her in place. They don't want to do that if they can get her to clear it herself because it is so stressful to have done. Most likely this means no more needles!!! No more making her scream in fear of what's about to happen.
I think I forgot to mention the levels of the meds she's getting. She's still getting IV steroids every 6 hours (upped from every 8 hrs. in the beginning) and 2 different nebulizer meds. One every 4 hours and the other every 6 hours. In the beginning she only got one of those treatments (I can't remember which one). She's on her way to getting better!!!!!!
10-29-2006
Darin was able to join us over at the hospital yesterday (saturday) for about 20 minutes. He basically fell asleep on the floor (on a cushin) for 15 minutes. I felt so bad having to wake him up. I could tell he was just ready to drop from exhaustion.
He didn't come home until 12:30 am (just after midnight). I left to go see Maya immediately. I called around midnight to check up on her expecting to hear that she was asleep. The nurse told me that Maya was still awake and hadn't decided if she was tired yet. I took her to the bathroom and helped her brush her teeth (so many wires and IV's it's hard to find a free hand). She finally fell asleep - within minutes of hitting the pillow. I stayed and watched the monitors for a little while. They had tried to lower her oxygen to 3/4 but her sats kept dipping between 87 - 89%. She got bumped back up to 1. I finally left around 1:45am
This afternoon (Sunday) I showed up around 11:30am and was hoping to see more progress (lower oxygen etc...) Nope! Instead she had a pretty major set-back. Her oxygen was back up to 3 liters and she was barely holding between 88 and 91%. The doc on call (same one as a few days ago) showed up and ordered another x-ray. This time 2 views - front and side. He ordered another round of blood labs to see if anything has changed as well as a sample of the mucous in her nose. He also suggested that we get our house tested for mold because that can aggrivate asthma lungs. What her nurse told me was that they had her turned down to 1/2 liter from 3am to 7am. When her food arrived they woke her up, took her to the bathroom and after breakfast they took her for a walk. She started to dip right after waking up. They hoped that taking her for a walk (and getting her coughing) would improve things. She was satting at 77% when they hooked her back up to the monitors. It took 3L just to get her back to 90%.
I left her around 2pm because Darin has to get some footage that he's been working on all day in to Lightstone so they can start the final render. Just so you know... as of this writing it's 3:15pm and Dairn is stressed because he says he's "no where near ready". I don't know what he's going to do. He's still plugging away. I'm trying to keep all the kids quiet and happy. They hadn't eaten lunch until I just made it after I got home.
Not only does Maya need your prayers but so do the rest of us. Darin is almost done but not yet. Then he needs to recover from so much non sleep. I have cought whatever Maya has. I have a lovely chunky cough and a cold now. My chest hurts a little but at least I can breathe. So far Talon, Gage and Kiera are fine. I'm shocked because Gage and Kiera have been with me at the hospital so much lately. The hospital just had a couple of days of 12-15 kids where the majority had croop. Yesterday and today there are just 3 kids in the unit. I still have to get a bunch of sewing done to make / improve / change their halloween costumes. The hospital staff said to bring her costume for her to wear on halloween if she's still there.
I will update again later today when I hear the results of all the tests.
10-26-2006
It's a bit after 4pm right now. I spent most of the day with Maya. I took Gage and Kiera with me. Today was MUCH better than yesterday.... still had our moments but all in all much less stress. Maya has not changed since yesterday. She's still on 4liters of oxygen. She does pop up into 95% every so often and her heart has dropped to 130's - 120's bpm. She still has VERY high demands for oxygen. They did another x-ray and round of labs. Everything looks very similar to yesterday. Still waiting for some labs to come back (2 days for 1 lab). Doc isn't convinced she has pneumonia. He does not feel comfortable with giving her antibiotics yet. He decided to up the frequency of her steroids from every 8 hours to every 6 hours. He thinks her lungs are still really spasaming (sp?). The doc today was one from the same office as our regular Ped. He and our regular ped have been talking. Our doc takes Thursdays off.
I've taken Maya for walks around the pediatric floor with oxygen tank in tow. Today we went to the play room. Both Gage and Maya had a blast. They painted little mini pumpkins. The nurses have all been soooo helpful with all our kids. I have told a couple of the nurses our situation (that Darin can't help right now) and they are very understanding. They have brought all kinds of snacks and things for Gage to do - coloring book, crayons, the pumpkin to paint, toys etc.. Today, when they were drawing blood for todays labs Maya got a very special visitor. A woman brought her Newfoundland dog (Saint Bernards are half Newfoundland's). Big, black, beautiful dog. He was so sweet. Maya was pretty shaken up over being stuck again but the dog helped her calm down pretty quickly. I'm hoping to have some pictures of him and Maya together. We should also have one of Gage and the dog together. One of the ladies there just to help play with the kids used her camera to take the pictures. I gave my e-mail address to our nurse to pass on to this lady. She said she could e-mail me the photos later. I hope it does happen.
I'm home now with the kids. Talon and Maya are very eager to see each other. This morning, when I woke up, I went into the bathroom and found Talon sitting on the lid of the toilet in the dark being super sad about Maya being gone. Seeing her is all he talked about all morning. The first thing Maya said when I arrived this morning was "Where's Talon?" They've always been this way. They get super lonely for the other one. I told Talon that when Darin gets home (whenever that is) we (he and I - possibly Kiera too) will go. It is hard to have Gage there. Too many "no-no's" and "don't touch's". I'll have Talon take a nap on the couch if I have to so we can go. Yesterday I couldn't get there until around 11p.m. Thankfully Maya was still awake. I was able to play with her, take her walking and help her get ready for bed. She's such a sweet girl. All the nurses are sooo impressed with her. Needles are the only thing she balks about. She is so easy going. The x-ray tech that I ran into this morning is so sweet - always has a smile on his face. He LOVES kids. He played with Gage for a bit and tickled Kiera's feet. His 4 kids range from 13 to 7. He misses the really little kids so he gets to play with them at work. He brings the machine to the patient rooms. I found out he and all his siblings are adopted. He's Cambodian, he has a brother from Mexico and 2 from Guatemala. There's one more but I can't remember from where. When he was on his mission his brother from Mexico passed away - he most likely had hydrocephaly. Lots of wonderful people at this hospital. Maya is in good hands.
That's it for the update at the moment. I will keep you posted as I know more.
10-25-2006 (first entry)
Maya woke up at 3am this morning not being able to breathe. I gave her steroids and a breathing treatment... sent her back to bed because she seemed to be doing a bit better. At 7 am I gave her another breathing treatment and was debating what to do with her. Decided to keep her home. I called the Dr's office and was told I could bring her in around 9am when our Ped was due to arrive. I got everyone ready for school and took Talon to school at 8:10am... came home and ate my breakfast. Took Gage to school at 8:45 am... had to take Kiera and Maya with me because I had to take Maya to the doc's right after dropping Gage off at school and Darin is not available. Sat at the doc's office until the doc finally arrived around 9:45am. She got another breathing treatment at the office at 10am. She was satting between 84 and 88%. Doc asked what I wanted to do. I was ok with waiting it out and seeing how she did over the next few hours at home. Around 12:30 she started to whine and make her grunting sounds (I only hear these when she can't breathe). I called the doc's office and asked if I could give her a treatment because now she was panicing (1pm). It had only been 3 hours since the last treatment not the minimum of 4 hours like they told me. I didn't want to OD her. They said it was OK and to call them back as soon as we were done. When she was sitting on the chair getting the treatment her lips and circles under her eyes were purple and her toes were a faint baby blue. She was struggling for her life, I could tell. She started to not breathe quite so hard after the treatment but you could tell it was still VERY hard for her. She started crying again and complaining about shoulder pain. I called the doc's office. First they wanted me to bring her in again then the doc changed his mind and told us to take her to the hospital to be admitted. I called Talon's school and had them pull him out a little early. Darin has been tied up with work and meetings so much that he has not been able to be any help during this whole ordeal. I packed the kids up and off we were to the hospital. I begged the boys to be good and sit in by the window (where the big comfy chairs were) while the nurses got Maya all set up (x-ray, IV, stats, monitors etc..). Needless to say... I have a 4 year old with very selective hearing and a very short memory (when it comes to directions). The IV was a HUGE ordeal. They tried in her right forearm first but she was panicking so much that her vein flattened out and they couldn't get it. They went in and mostly out about 20 or so times. After a couple of different nurses tried they finally picked another vein (back of her hand) and got it on the first try. When they first hooked her up her sats were around 81%. They blasted about 4Liters of Oxygen at her to get her up to 91%. That's exactly where she was when I left at 5:45pm. She had just gotten her dinner and I decided that was a perfect time to go home and get the rest of us some food.
I asked the respitory therapist if I could see her x-ray. She was very nice and pulled it up on the computer. This was the same respitory therapist she had when she was in the hospital the last time in July. I have never seen her lungs look like this. Normally I see a ballish blob with fringes shooting out from the center in an upper portion of one lung or both. This time they looked like rectangle white strips here and there with fringes shooting out from the short ends. We read the report and what it was explained to me was her lungs are over inflated and several of the branches in her lungs have collasped. They don't think it's pneumonia but they haven't totally ruled that out.
Here it is almost 10pm and I'm dying to get back to see her. I've been waiting for Darin to get home so I can go back for a little while. The boys are asleep upstairs in their beds and Kiera is asleep in her bed downstairs where I am. This couldn't have happened at a worse time as far as Darin being able to help is concerned. Today was the first day it has snowed here. It kept switching between rain and snow all day. I wish I could have been able to leave the boys with Darin (and Kiera if it wasn't for too long of a time). It would have made everything soooo much easier on me. I thought I was seriously going to snap any second. I am so torn between being here (home)and being there with her. This is the first time that she has been in the hospital and NO ONE will be with her at night. Darin says that he has to stay up all night and keep working and I need to be here with the baby and take Talon to school in the morning. I know she will be fine - she's 6 not 1. She's a big girl and has done this many times before. I still feel MUCH better if one of us is there for her. She sounded just fine when I left... I think it's all me being stressed out over no one being there. Another mom growing up experience to live through I guess.
I can't remember if this is her second or third hospital stay this year. She's getting worse... not better. Our ped. wants to get her on an inhaler 1-2 times a day through the winter months and see if that helps her not have these problems. When she gets bad she gets bad REALLY fast. Yesterday I noticed that she was coughing. I told Darin we needed to keep an eye on her in case she got worse. I didn't expect her to get this bad this fast. This morning her skin looked pale and slightly green - especially when she sat next to Talon. He was pale but pink.. she was more pale and a yellowish green. Every time she gets that skin color she ends up in the hospital.
OK.....
There it is. Believe it or not... that's the short version. I've left out all the wonderful stressful things Gage was doing during this whole ordeal. Darin was able to give Maya a quick blessing before we left. I called my mom and she put Maya's name in about 5 temples (in AZ, UT and LosAngles). She put all our names in the Mesa temple last week. Please keep her in your prayers. I wish her lungs would mature and shake this problem. Our Ped says it's her premie lungs at work.
Darin has been going full force for over a month now and I'm desperate for us to be able to take a breather as a family. The kids have hardly seen Darin for the past month. I am going psycho having to do 100% of everything with very little help and having absolutely NO money.
Darin has only had 1 bad day since he started taking the amino acids. He thinks it's from something he ate at a wedding reception we recently went to. He's been fine ever since. TIRED but fine.
I gotta get going. I need to see if he's coming home any time soon. I really need to go see Maya and I feel like falling on my face with exhaustion. Keep us all in your prayers for the next few days. Thanks!