The latest...

...Gracie has been doing so well. We went in for a follow up last week and Gracie is holding her own for now. We are really happy about that. We are still not in the clear yet though. Graice tends to do well in the summer. We won't know if she is really getting better until winter comes again. That is when she gets really bad. We are hoping that all of that is behind us. We will contiue her medicine through the summer, and the hope is that by winter her body will be able to handle what comes her way.

I will not be updating this blog for now. Please see our family blog for family updates. If something comes up with Gracie I will note on our family blog to check back here.

mortensen20.blogspot.com

Thanks

Not Happy...

As if dealing with a sick child and two other children is not enough, Now I have to deal with Apria. (medical equipment provider) They decided to charge my credit card last week with out authorization. As if that is not bad enough, the charge over drew my checking account. Now I am fighting to get MY money back. I really don't need this. I should be taking care of and spending time with my kids. After hours on the phone they then had the nerve to say I owe them almost $200.00 more. Yeah right. What a mess. This is really not how I want to be spending my time.
Well I just needed to vent.

Gracie however is doing very well. She does have a little bit of cabin fever though. I can't blame her. It seems that all of this has made her grow up a little more. I don't like that very much. I hope that this surgery will help her be healthier then she has ever been. I don't want her to miss anything else because of it. It is hard when you can't go to school or church. Really what else is there for a 5 year old. I do have to say that i am very happy that we have Kelsey Rae. The girls have really started to play so well together. It is fun to see how much they love one another.

Hopefully we will get our money back soon. In the mean time I will enjoy time with the girls. Summer will be here soon and then we will have Ethan with us also. What a fun time.

2 Weeks Post Op

We are now two weeks post op with Gracie. We went to the Doctor and he has cleared her for all normal activity. We are very happy with her recovery. So all is well with her surgery. She is still recovering from her asthma and her low Oxygen levels. We followed up with her regular pediatrician and she is very concerned with Gracie getting sick again in the near future. The Doctor fears if she gets sick again anytime soon, that she will have to be hospitalized again. So in hopes of keeping Gracie well and out of the hospital, her Doctor has recommended we keep her out of school for the rest of the year. This was a very difficult decision. We talked to her school and they have been very helpful. They have agreed to let Gracie finish out the school year through home school. We are very grateful to be able to do this. Gracie has been very understanding about the whole situation. I am so proud of her. We are hoping that after the summer to recover and gain her strenght that she will be strong enough and healthy enough to return to school in the fall. We will continue posting updates. Thanks to everyone who reads this blog. It is very nice to have the extra support.

Home, Again

We have had an eventful few days. After Gracie's surgery, she came home and started getting sick. We kept a close eye on her. On Saturday night we realized she was a lot worse. We took Gracie into the Pediatric Urgent Care. After looking over Gracie, her O2 Sat's where at 88 and she was wheezing pretty bad. That has always meant that she needs to be admitted to the hospital. This doctor felt we could deal with her at home. So we left. I however did not feel well about taking her home. I called her regular doctor on the way home. He very much felt that she needed to be in the hospital. We were able to have the doctors have a phone conference and they were able to have her admitted with out too much more drama. Thankfully. The first night in the hospital was a really bad night. She was on oxygen and had a high fever. It took a few days to get Gracie back to breathing well. We brought Gracie home on Wednesday afternoon. She still has a bad cough and is getting though all of this. It has been really difficult after her surgery last week. She will be good as new in no time. I just wish she was already well. I will keep posting updates.

Surgery!

On Wednesday April 9Th, Gracie will be having her Tonsils and Adenoids removed. This is a common and pretty easy surgery. However due to Gracie's past problems with anesthesia the surgery will be done at the main hospital. We are hoping to be outpatient, however there is a possibility that she will be admitted for one night. We are hoping that this surgery will help with a lot of her problems. We know it is not a quick of even a guaranteed fix. We are just hopeful. We will follow up with how her recovery is coming. The hardest thing will be having her out of school for her recovery. We will follow up later this week with her progress. For anyone who is following this blog from Albuquerque visitors will be welcomed soon after we return home. She would love to have people to keep her busy.

Home again

We got home late Saturday night. On Sunday we got Ethan back and then on Monday KelseyRae came home from Boise. We are so excited to be back together again. It is as it should be, all my kids back in the same state and under one roof. We already have an appointment set up for Gracie to see an ENT Doctor here in Albuquerque. We go in on March 19Th. We saw an ENT in Denver, and he felt Gracie needs to have her tonsills out as well as her adenoids and soon then later. So hopefully we will be able to have that done in the near future. If the Doctor here in Albuquerque does not agree we will be returning to Denver to have it done there. We will follow up next week.

Diagnoses!!

We are being discharged today!!!! Yea, we got some really great info while we where here and are very happy we came. So on with what we know. They have diagnosed Grace with Asthma which we kind of already knew. In addition to Asthma Gracie was diagnosed with Reflux, Laryngomalacia , and Chronic Sinusitis. So what now? Well the biggest concern that needs treated further is the Laryngomalacia. We are going to see another Doctor at a different hospital while we are still here in Denver. The Laryngomalacia has been causing upper airway difficulties for Gracie. So what is it, and how do we treat it? Laryngomalacia is the underdevelopment of her Larynx. Hers looks like that of an infant instead of that of a 5 year old. Because it is underdeveloped it is floppy and flops over when there is any swelling of inflammation. Thus causing breathing problems. This was hard to diagnose and was found through a very difficult test. So we are going to see a ENT Doctor tomorrow to see if he feels if Gracies adenoids are removed if she would have more room to move air. We are very happy with this diagnoses. The other things are treated with simple meds. We are still learning about Laryngomalacia and will follow up with more info when we know what it is. In the mean time we are going to visit with Alan's family who live close to Denver and then return home on Saturday night. We are grateful for all the prayers and support while we have been here.

Tuesday Test...

Today we are in for another really rough test. Today Gracie is having a Bronchoscopy. This test allows the doctors to look inside the airways in the lungs. This will give the doctors a very clear look as to why she is having the problems she has had. This test will require them to give her an IV. Then they will give her some meds to make her sleepy. Not all the way asleep, just enough so she won't fight the probe. They will also give her some meds so that she will not remember what has happened to her. We are hoping to know if there will be more tests required. So we are keeping our fingers crossed this will be a good test.

Weekend Fun

We where told that over the weekend we should have fun. So we did. We went on Saturday to see our friends Jon & Colleen. We took their daughter Anna with us and went shopping. We had a lot of fun. The girls where very fast friends and loved being together. After that we left thinking we would go back to the Ronald McDonald house to hang out. I decided to be brave and go explore a little. We found this place called Amazing Jakes. This place was crazy hugh. I would not normally take Gracie somewhere like that, but i figure if she gets sick we are in the right place. So we went. We had a blast. She thought it was great to be able to do what ever she wanted. She was really good on the arcade games. She won over 600 tickets. She liked that. Then on Sunday we where lazy in the morning. Got some laundry done and had pancakes for breakfast. Then we got to go and see a friend of mine that I have not seen since I was a teenager. Her little girl was having a princess brithday party. Right up Gracies alley. That was so much fun for her. So all and all we had a fun weekend. Just what the doctor ordered.

First Week

We made it through the first week. On Friday we had the chance to sit down with Gracie's Doctors for a review. What we do know is that Gracie has asthma. The doctors in Albuquerque kept going back and forth if it was asthma or not. Now there is no doubt it is asthma. The only question now is why does she have asthma, when her lungs are 20% smaller then they should be. So we will spend this week trying to figure out that mystrey. The otheer good news is that they do not think that Gracie has an immune disorder. They feel that the reason Gracie is dropping her tetnius tighters is because of the medicine they keep putting her on to keep her breathing. So it is a bit of a catch. So by the end of this week we should know how to care for Gracie's asthma and how sever it is. We really feel that all of this has been worth what we have learned. We should find out today if they want to do a bronchoscopy test. This will not be an easy test. They will have to sedate Grace and then put a tube down her throut. They will put a small amount of fluid in her lungs and collect some cells to better evalute her lungs and how bad they really are. I am really hoping that they do that test on Wednesday, because Alan will be here. Hopefully I will know today .

Let the tests begin...

Tests, Tests, & More Tests!

Coming to National Jewish Medical Center is not anything you would ever expect. That’s not bad, but it is a bit overwhelming. We checked in on Tuesday and right away was given a schedule, or somewhat of a overview of what Graice and I would be doing for the 2 weeks that we are here. The neat thing is that they work on more then just the physical side of the problem. They understand the emotional toll having a cronically ill child takes on the parents. Everyday they have a group counseling session for just the parents. Also you have one on one time with a counselor. They want to make sure you are at your best so you can understand what is going on. On Tuesday we mostly explained several times why we where here and Gracie’s past medical history. Gracie was kept over night on Tuesday so that they could just obseve her to get a feel on how she does while she sleeps. The good news on Tuesday was that we got into the Ronald McDonald house. So before checking into the hospital for the night we went and unloaded our things at the house. We checked in to the hospital at 7pm and settled in for the night. Thankfully we had an uneventful night. On Wednesday morning we got up and started testing right away. Our day went something like this… X-Rays at 9:00 am, Daily Vitals and Exam at 9:30, Art Group for Gracie at 10:00, Art Therepy for Gracie at 11:00, Group “Coping with a cronically ill child” for me at 11:00, Lunch at 12:00 pm, Then Gracie had ree Run at 1:00, that is where they test here breathing levels during heavy exercise. Then at 2:00 pm Gracie went for a pulmonary function test. That is where they but Gracie in a booth and she has to breath into a mouth piece so they cane see how well her lungs are working. That test took over an hour. So if that seems like a long day it was and she still had one more test. At 5:00 pm Gracie went to have 2 CT scans done. One on her lungs and the other on her Sinuses. After that we where done for the day. We came back to the house and made dinner. Than they had a Bingo party. That was a lot of fun. We even won and Gracie got to pick out a prize. She picked a new Barbie. At about 8:00 pm we where exhausted so we went to bed. Thursday is going to be very long as well. Not as many tests, however the tests that they are doing are going to be more difficult on Gracie. They will be putting a tube down her nose and leaving it for 24 hours. This will again require Gracie to stay over night in the hospital. So where we check in on Thursday morning we will be at the hospital until Friday late afternoon. I am very glad that we are here. I am happy to meet other parents who understand how I am feeling. Right now though I am very tiered. This is very difficult. Gracie has been such a little trooper. She knows that on Thursday the tests are going to be uncomfortable. She said it will be ok right Mom. I love her spirit. She is trying really hard. She seems very grown up all of the sudden. She does what they ask, when she doesn’t get it right the first time she says to me “Mom I really am trying”. What can I say to that? I know she is. On Friday we will sit down with the Doctors to get our first round of results. We will then have the weekend off. Gracie and I plan to go and find some really fun things to do. We will let you know what we find. Sorry for any typo's I wrote this at 3 am when I could not sleep.

We made it to Denver

Thank You for all of your prayers everyone. We made it to Denver today. The weather was not to bad. We ran into a little bit of snow here and there but nothing to bad. We are very greatful to some friends here in Denver who have let Gracie and I crash for a night. We are hoping to get into the Ronald McDonald house by Wednesday. The house is only 2 miles from the hospital. We look forward to the next few days getting started on all of the tests. The sooner we start the sooner we will hopefully get Gracie all better. Again Thank You to everyone for all of your thoughts and prayers.

Early Morning Ride!

Gracie has been sick again this week. And as luck would have it, Alan had to go out of town for work. It has been a very difficult week. Gracie started to get sick on Monday. I kept her home and just kept an eye on her. On Tuesday she was a lot worse. I put her on the pulse ox machine that I have for her at the house, just to see where her Oxygen saturation level was. (She needs to be over 90) She was at about 90 to 91. I went about getting the other kids ready for the day. Then I heard the alarm on her machine going off. I ran into her room to see her oxygen level going down. At 77 % I started moving. I had to wake her up and get her moving. Thankfully that brought up again. I called the doctor and we went right in to the doctor. At the Dr's office they got her stable and from there sent us to her specialist. They where having a difficult time keeping her levels above 90. In one last effort to keep her out of the hospital they gave her a high dose of steroids. Thankfully that seemed to work. So after 3 hours at two different Doctors we went home. Wednesday Grace woke up and seemed to be doing much better, so we got everything ready for Valentines Day thinking she would be returning to school. When we went to be Wed. night I put Gracie back on the pulse ox machine in my bed so I could be close, and to be sure she could go to school on Thursday. Starting about 11pm the alarm started going off. For some reason in my sleep I saw her oxygen level was fine and just ignored the alarm for awhile. Finally at about 2 I woke up enough to realize the alarm was going off due to her heart rate was low. I started watching what was going on. At 3am I called our nurse line. She said to call the Dr and see what he thought. So I woke up the Dr and he instructed me to call 911. So I called. After I hung up I went into panic mode. I called Alan and woke him up, then called and woke up two other friends to come and help me. One friend stayed with the other 2 kids, and our other friend followed Grace and I. After running a few tests at the hospital they put a 24 hour monitor on Grace and sent us home. Alan decided to take a flight home. SO we where very happy to have Alan home with us last night. Today (Friday 15) we have an appointment with a pediatric Cardiologist. So we will see how it goes. We just though we would keep everyone posted on how Gracie is doing. We have received so many encouraging emails form all of you. Thank You all so much.

On Our Way!

National Jewish Medical Center called today and finally gave us an appointment. We are to check in at 7:30 am on Wednesday March 5th. We are happy to have a date set. Now we can plan around that. We now will get everything ready to go. Things like who will take care of Ethan & Kelsey? And is Alan and Liz going or is Alan staying home. At this point we know that will all work out. Now Liz gets to make the rounds back to all of the Doctors and the hospital to pick up all of Gracie's medical records. That should only take from now until we leave. :) We wanted to set up this blog for our frinds to have somewhere to go to see how we are doing. From now until we go there won't be a ton to tell about. However we are hoping on the 5th or 6th be updating at least every other day. So please check often for updates, as it will be very difficult for us to call everyone we care about everyday. Please also keep Gracie in your prayers. The test that she will be going trough will not be easy on her. She is not old enough to understand the importance of why we are doing this. So your prayers will help a great deal. Thank You so much to all of you for your love and support.