Garden Fairies...

Just a brief note to say that the email that was sent to me yesterday from a mom with a similar situation was so well received by the pulmonary doctor. I want to thank her from the bottom of my heart for not just reading and clicking off her blog. Thank you to her for taking the time to write in such detail what she has experienced. As I said I didn't come home from our appt. on Wed. feeling so good about the time it was going to take to find anything out. Within probably one hour after the doctor received the copy of the letter from this mom that I faxed, he called me. The nurse was so friendly and reassuring when I called and said she would give it right to him. He had to have read it, then he took the time to see her blog and then called. I felt he took so much time on the phone with me today and told me we would work together to help Annabel. He said this email from the mom all sounded so familiar to Annabel's issues. He explained so much in detail and actually said that he had said several of the same things just in different words. He even said maybe that the other dr. had used better wording. But today he was so reassuring that I feel very comfortable and excited to be on board with him. He also explained that he has treated trisomy patient before, that he is a pediatrician and is just beginning his pulmonary stint. He also said he was going to be open to any information that I would come across and then we could discuss it. I am thankful that God obviously knew I need this comfort. Along with stress, helpless is not a great feeling.
On a good note, the oxygen is helping Annabel through the night. She seems at this point to not be quite as tired the next day after a good nights sleep.
I am posting a few pics of our Garden Fairy! She can make any garden bright and colorful. We made one house for trick r treat and that was her teacher! When you seen Annabel come alive in her presence you know she has an amazing gift.

Blogging can be answered prayers....

I wanted to post this email I received today. Someone I have never met, came upon Annabel's blog through another little girl with Trisomy 18 who we have met at conference. She read Annabel's post and was struck as she said by the similarities. Internet certainly has its evils, but in this case it may hold huge answers. I have deleted the names because I haven't asked her to post her email on my blog. I did ask her if I could print this out and forward/fax to our drs. She said that I surely could. If any of this could be the same issues that Annabel is experiencing, then maybe we could get some relief for her (and myself concerning my stress level). have had other suggestions and I totally follow up on them. Today we had her tonsils checked and the ENT (not pediatric) was sure it was not her tonsils. He said actually they are so small, almost like they have been removed. His comment was that it didn't look obstuctive, but more consistant with her low muscle tone there in her throat. But he agreed she needed a sleep study and that it should be done in Houston, not here at home.
Again, I am so thankful for ALL of my internet friends, some I have met more I have not. Annabel overall had an ok day and for this I am grateful!




Cathy
I read your blog post this morning. I got to your site via ---- blog, where ----- posted about Anabel’s downturn in health. I hope you don’t mind me emailing you directly. I wanted to tell you that the symptoms that you are seeing is very similar to what we saw with our daughter, ------ (T18) a couple of summers ago. I can relate to your frustration (and your fears) and I wanted to reach out to you.

After reading your post, my first question was: did they tell you that the vessels in the lungs might be spasming due to the apnea? Did they do a blood gas test? Did they put her on oxygen for about 10 min to see if it even brings her sats back up?

Here’s our experience:
R______started desat for no reason, she did not have a cold. It was the middle of the summer. And her sats were in suddenly in the 70’s. She doesn’t use oxygen at home, and we had a suspicion of apnea (both kinds). We also had been using to decongestants to control the secretions, and were having some success. She also uses pulmacort daily, and albuterol as needed. Finally, after 4 months of waiting we got in to see the pulmonologist at our local childrens hospital (only 50 miles away) and he spent a whole afternoon with us. What he suspected, because her sats had dropped suddenly, and that is not typical for a pulmonary hypertension patient – they usually drop slowly over a period of years – was that the vessels in the lungs were spasming due to the apnea, and that he had some patients who had success using a CPAP and turning that around. We eventually got the sleep study done, and got a CPAP, and then we saw her sats begin to improve. Getting her to use the CPAP all night is a whole new battle, but we keep at it.

We found that R_____has Reactive Airway Disorder, a form of Asthma that can last for days. Usually triggered by the secretions, or any allergens, and now we keep her on a decongestant (pediacare 0TC) and Loratidine, to keep these spells at bay. She would develop rather quickly a cough, and you could tell she was laboring to breath. Sometimes the albuterol treatments would not give her relief. And we would have to add an oral steriod burst. Does this sound familiar? And then poof, symptoms gone. For a couple of days.

I hope that this helps. I was really struck by how similar your description of Anabel’s episodes were to R______. If you have time, I’d love to hear back from you.

Too much hope.....

I am beginning to learn that your first visit with a new specialist is really just a get to know you and just to report some issues. They don't always want to really know her history if it doesn't pertain directly to what we are there for today. I have to remember they have a certain amount of time allotted for our appt. and if it goes too long they just conclude with what they just heard and you leave feeling like maybe you are in the same boat that you came in on.
First let me say I am thankful that we were able to get an appt. quickly with this dr. I am sure he is a good dr. but he has just became a dr. in Feb. 08. That doesn't mean he doesn't know what he is saying. I do know he really didn't want to know much about how this is something very progressive. She had a few good days after receiving the Rocephin shot and for this I am thankful. I did bring a friend with me who has known Annabel all her life and she has had her in her care at times since she has been having these spells. She does have much experience with special needs and was there to listen for me, ask some very good question and also be a little more aggressive than myself.
I want to just report what was said, and I don't want to sound like I am complaining. I am still frustrated but that just may be me.
He began by asking how much or what types of meds she is taking. I told him about the decongestant that she is taking to thin out the mucous. He ask if it was helping and I told him that it did early on but now I am not sure. He said that this medicine is not what she needs and that it is really not helping with the mucous. He also told me that something in this DM is not really good to take for very long. He then ask about her breathing treatments and I responded that she takes Albuterol and Pulmacort. He asked how long she took it and I said all the time. I meant since the storm and living in other places that she has had more respiratory, so this is why I was doing it, also this is what I was told to do by our doctor. He told me that I should not give albuteral unless she was clearly in a respiratory situation. That this is not good for her to have all the time. The pulmacort should be used all the time every 12 hours. I know from being in the hospital and doctors that because she does have trouble with her mucous or sounding congested that I was to use this. If she is clear I never use it. Since the storm this is the longest I have had her on it. So I did learn how I am suppose to use this. Albuteral only is when we have a congested cough and that is very short term. Pulmacort is longer term and to open the airwya.
He feels strongly that she has at least two issues not necessarily related to one another. He feels she definitely has apnea. His guess at this point is obstructive sleep apnea and the second is central sleep apnea. From what he said the first is fixable and the second is not. Now remember this is what he said and I don't necessarily agree with this that thing maybe aren't fixable. The test she needs for this is a sleep study. The downside to this is she can't get it for about 2 months because so many people need a sleep study, is what I was told. She can't have it done locally due to the fact that she needs to be under the care of people who deal with pediatrics. I did voice my frustration with the 2 mths. to wait. I told him this is obviously fairly progressive and that the changes seem to be significant from week to week. He does want her on oxygen all night, since when she is on this she doesn't desat to the lower levels. She has begun to wake up very stiff and obviously scared when these happen. But they want her to be turning blue before they require this to be an emergency. You can have an emergency sleep study done, but I have to bring her in when she turns blue. This is quite hard since I live 100 miles away and would be hard to travel during the night alone with her. He wants to wait for this test to be done before we Talk about it being Central apnea. I really understand this but in the back of my mind I don't want to fail to get her help because he might think this is just the progression of her Trisomy 18. That is what our talk would be about. Anyway, I have been here before and have had to fight to get her treatment. I will be praying that if a fight is needed God will let me know and I will go to it.
The episodes or spells during the day where it seems oxygen help, he isn't really sure that the oxygen is helping. Since to him it doesn't stop them altogether. As I told him, these spells are so stressful and that to give her relief with oxygen seems fair. He's not really sure! He thinks we need to see our GI dr. to rule out any type of reflux. We have done this before but I am very aware that maybe after placing her feeding tube something could have started. I will call tomorrow for an appt. and he suggested a scope by the GI. He believes the bleeding is coming from her stomach. I guess since I don't see it in her BM's only coming through her mouth, I thought maybe this was something from her throat. He also thinks that she could be having trouble managing her secretions.
One thing that caused me concern about how much education he had concerning Trisomy 18 is his comment about something that really only happens to kids that have cystic fibrosis or kids with low muscle tone and can't produce the normal cough. I wanted to say HELLO, these Trisomy 18 babies all have low muscle tone, they all suffer from respiratory issues and have trouble with their secretions.
I want to make sure everyone understands that I KNOW there are many children much sicker than Annabel. My issue is that at first this seemed like a UTI/respiratory issue. At this point my concern is the progression of the need for oxygen and the loss of oxygen during sleep. They all tell me they don't want her sats in the 80's. Well day by day they are lowering at night into the 70's, 60's and the last couple nights into the low 50's. So sometimes I feel they are looking at the Trisomy 18 and saying this is just what happens. I would rather them say the words than give me the feeling that she is not important, or they don't want to deal with her or that maybe I am overreacting. I do know when my heart has told me to push on a certain issue, it is usually right on the mark. I am really feeling this need that I am going to have to become aggressive for Annabel's sake.
I guess my wish for today was to either give her some relief via medicine, education, testing or whatever. Maybe just too much hope...
If and when her time on this Earth is done, I will miss her desperately! But one thing I will know is that I did everything possible for her to have a good life. In my book that is not just love and being comfy, it also means the right to medical treatment.
I want to say how touched I am by the comments and the calls to say you care and that you are praying. The support means so much to us in ways you probably can't imagine! I can't respond to everyone due to the fact that I don't have email addresses, so please don't thing your comments go unappreciated. Let me say again, that Annabel is here on this Earth due to the endless prayers being offered up on her behalf. Thank you, thank you, thank you....

In need of answers...

I have prayed that we would get into a pulmonary doctor soon to try to understand these changes going on with Annabel. We will be traveling to Houston on Wednesday to see the Pulmonary Dr. My biggest prayer for now is that I will come away with some sort of answer or reason for what is going on. I think this would help my nerves when these are going on if I knew if this was due to infection, structural changes, aspiration or just this Trisomy thing. She has had a few days and I thought things were improving. Sometimes I see one thing improve and then yet something else surfaces. We had a few days were we saw a decrease in the need for oxygen and that she was having less spells or episodes. But her spells are becoming more intense. Today she needed more oxygen and this evening earlier she had a fairly bad spell. We have begun to see blood in her mouth when she has the more intense spells. I am up tonight because already she had desated into the low 60's several times. She is taking much longer to get into the safe range. She has now begun to wake and become very scared. She is showing obvious sign of struggling when she stirs and the sats are still low. Normally, some people say that they would go to the hospital but with the oxygen here I don't think there is anything they can do for her there. She has been off the antibiotic for about 3 or 4 days now and I do think she is showing early sign that the UTI is coming back. This would be seven antibiotics within less than two months including two Rocephin shots.
I do know that so many of you think of Annabel so often and pray for her. If you think of her in the next couple days, please pray that we will get some direction into maybe the cause of these spells.