Wednesday, October 29, 2008

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....

12 comments:

M said...

This girl is PRECIOUS. I check in on you but I don't know that I have ever commented. My father was told he has sleep apnea which his own father died at age 45 of but it has taken a fight to get the actual sleep study done... we are here in Houston. I never knew so many people needed this test but it isn't one to play around with in my eyes! Anyways, I am praying for you as you continue on to find answers and comfort for this sweet girl of yours! Michelle

May said...

Cathy you are doing as much as is humanly possible for Annabel...it's just a reality that has hit me too that there's a part of the puzzle that we're not in control of...which is medical treatment. I totally understand when you say that the first visit is an info session almost. Sometimes I feel like I have to "sell" them the "amazing features" of Vera (she's fought hard to be her, she's improves here and there) for them to "buy into" giving her a shot, or even start to take notice of her. Or maybe this wouldn't change their mindset anyway...

Do continue hoping ok.

Laurie said...

Oh Cathy,

May said exactly what I was thinking when I was reading your post this morning. You should not have to "sell" anyone on why it is so important for you to get help for your sweet Annabel. And I don't believe for one moment that you can ever have too much hope. Her little life depends on God, your hope and love, and the prayers of many out here who love you both.
I will continue to pray for answers and strength for you and a miracle of healing for her if He wills. I love you Cathy and know in my heart that Annabel was born for you.

Many Prayers and Lots of Love, Laurie in Ca.

The VW's said...

Hang in there! You are doing everything that you can do. I know how frustrating it can be to have to wait and not have answers! I'm sorry that you have to go through all of this! Please know that I am praying for you and Annabel and that I think of you both often! God Bless You!

Jessica mommy to Alex/ RTS said...

I know how helpless it is to feel like you need this, this, and this done, and the doctor just says we can start the tests in a few months. Its almost like they are just saying good luck, and quickly move on their way, and you are left in the exact same situation you were in.
You are doing good, keep it up, we are all behind you.

Holly said...

Cathy,
I'm sorry the appt. didn't go as you had hoped. It sounds like some of the things the dr.said were reasonable, but a 2 month wait for a sleep study is a long time when she is desatting like she is. No matter what kind of apnea she is having it might be a good idea to ask about c-pap or bi-pap. I have heard of many kiddos using one or the other of these and getting good relief at night. Maybe your own pedi could recommend that. I hope you can get some answers soon.
love,
Holly and Morgan

Rebekah said...

I would question whether this doctor knows what he is talking about. My son Ricky has cystic fibrosis and he takes albuterol nebs every day, twice a day. No one has EVER told us that he shouldn't be on it unless he is having an acute respiratory problem. To me that seems ridiculous.

I hope you can get some answers about the apnea -- sooner than 2 months. Hang in there! Keeping you in our thoughts.

mrsrubly said...

aww! your momma bear instints have kicked into high gear. you seem like a awesome momma with fight in you for her to get the right care. annabel i hope you feel better and i pray for you honey.

ANewKindOfPerfect said...

Cathy, I am sorry that the appt left you feeling like this. I hate when we have to convince the doctors that our children are worth treating. Yes, they may be chronic or whatever term you want to use, but they are still children! They are FIGHTERS.

I hope that you can convince him to do the sleep study sooner somehow. Desatting that low has to be scary for you.

You and Annabel are definately in my prayers!

Kelly said...

cathy you are doing an amazing job for annabel. she is definitely a very loved little girl. i wish someone would give you some help or even better yet a solution. is there another ENT or pulmonologist at another hospital perhaps that you could get a second opinion from? have you tried to contact faye (morghan's mom) - i don't know if she is close to you but i know that she lives in texas. maybe she has the name of a specialist that would be more supportive and knowledgeable about the care required for trisomy kids. if she is coughing up blood but not having any in the stool i wouldn't think that that was a stomach issue but more of a lung issue. i could see a lung issue being caused by her refluxing and then aspirating what she is refluxing...are you going to go back to the gastroenterologist? i will be praying that someone helps you to find the answers you need and gives annabel some relief.

Anonymous said...

Cathy, make sure you never give up. You need to find the right dr that looks at Annabel as equal to everyone else. She has a condition, she is not dead. I speak very highly of all of Aniella's dr. There is not one I complain about. She has 6 specialists and a primary care physician. They all go out of their way for her. Aniella has has approximately 7 sleep studies done. When her pulmonogist orders a sleep study, she is there within two weeks. I wish you lived here. There aren't many babies here with T-18, but it is familiar to most of the doctors at the Goryeb Children's Hospital at Morristown Memorial Hospital. Aniella has obstructed sleep apnea. She does not have central sleep apnea. Central sleep apnea is caused by imbalances in the brain which are not correctable. Obstructed sleep apnea is. Aniella was trached in June and her sats have remained in the high 90's until recently. Since her pulmonary stenosis is worsening, we need to watch for desats and cyanosis. A place we have already been for over a year and do not want to revisit.If you are not comfortable with this new dr, get a new one. Dr's that don't have her best interests can be detrimental to her. For instance, the two ENT dr Aniella had did not want to take her condition seriously. She would up in the Er twice from nearly suffocating to death. She now has a new ENT dr that knows what he is dealing with. keep in touch, you know my email. Annabel is beautiful. her and Aniella will meet one of these days. Susan

Anonymous said...

Cathy, make sure you never give up. You need to find the right dr that looks at Annabel as equal to everyone else. She has a condition, she is not dead. I speak very highly of all of Aniella's dr. There is not one I complain about. She has 6 specialists and a primary care physician. They all go out of their way for her. Aniella has has approximately 7 sleep studies done. When her pulmonogist orders a sleep study, she is there within two weeks. I wish you lived here. There aren't many babies here with T-18, but it is familiar to most of the doctors at the Goryeb Children's Hospital at Morristown Memorial Hospital. Aniella has obstructed sleep apnea. She does not have central sleep apnea. Central sleep apnea is caused by imbalances in the brain which are not correctable. Obstructed sleep apnea is. Aniella was trached in June and her sats have remained in the high 90's until recently. Since her pulmonary stenosis is worsening, we need to watch for desats and cyanosis. A place we have already been for over a year and do not want to revisit.If you are not comfortable with this new dr, get a new one. Dr's that don't have her best interests can be detrimental to her. For instance, the two ENT dr Aniella had did not want to take her condition seriously. She would up in the Er twice from nearly suffocating to death. She now has a new ENT dr that knows what he is dealing with. keep in touch, you know my email. Annabel is beautiful. her and Aniella will meet one of these days. Susan