Wednesday, October 21, 2009

Stressing out....

I think when life becomes so crazy, I just leave. Of course, I mean concerning the blog. Let me begin by saying I have more help than before due to Kourtni who I have blogged about already. I was able to leave this past weekend to go on a knitting retreat with 5 wonderful ladies. Probably to some this would sound boring. But remember in my life, I long for boring! The couple who ran the bed and breakfast were so nice and accommodating. We shared many laughs, ate wonderful food, and slept as much or little as I wanted.

I had recently reported that Annabel was going to need a vesicostomy. I believe this procedure is a good one but I don't like the fact that she will stay wet all the time. I have talked with several moms and they all say the same thing. Very hard to keep your child dry, they have skin breakdowns (we don't experience this as of yet) and also many yeast infections. I have gone back to cathing her every 3 hours and many times during the night. I am using her feeding pump like an IV to keep water dripping during the night to flush her out. I have also gone back to doing the Gentamycin Irrigation twice daily. All this in the hope that we can keep as many infections at bay until I can be comfortable with the surgery needed.

This past Thursday we had a visit with a neurosurgeon that our Physical Medicine doctor wanted us to see. Annabel was never really considered to have scoliosis but she has a very noticeable curve to the left. So much so that her sweet little head goes right off the head rest on her wheelchair. She also had some changes in the upper chest areas. Almost as if the area is being pushed out. Her kyphosis is still there with changes also. So when we saw the doctor on Thursday he said surgery right away. He looked at MRI from 2007 and said she did have a tethered cord. The surgery is not a big surgery but he said could offer her some relief. It could help her little body straighten up and also help with the neurogenic bladder/bowel. In 2007 the MRI or x-rays showed almost no scoliosis but this months x-ray showed a significant increase. Her little ribs are almost closed on the left side. It broke my heart to see this difference in her little chest. All this said that she is probably in much pain and she doesn't even let us know. It is breaking my heart with so much changing. So much that I just don't even want to think about it. I don't like surgery, don't want to put her through it, but then again if it can help... All this to be said that God truly blessed us with a wonderful neurosurgeon. He was so positive and never questioned if Annabel was worthy of this surgery. He was thorough and informative. We are going to try to get another MRI(for updated purposes) but looks like they are scheduling for this in December. He said MRI wasn't necessary since he had one already so we may proceed. He had me sign surgery releases when we were there. He will need cardiac and pulmonary clearance then he will proceed.

After this Annabel had to have her button changed again. This is one tough little girl. Since Annabel's mini-one is a non-balloon button it has to be changed in the doctors office. Kourtni was with me, thank goodness. This makes me weak at the knees. They do not sedate in any way and she again did the no sound but tear running out of both eyes. The button is really great but we have been unlucky with the last two.

On Friday we had our cardiology appointment with our new cardiologist. She had recently had an echo and a halter monitor placed. In the last 6 months she had little change, which is good. She does have pulmonary hypertension but at this point is considered mild. Her large VSD is still there but it is working in her favor now so no surgery there. Thank you, Jesus! When the doctor called to report on the halter a few weeks ago he said that it was a very strange looking report and that he would have to consult with his colleagues. So at our appointment he listened a very long time to her heart. He said she has very high/highs and very low/lows but that these seemed normal for her. In my heart I know these are not normal but that this is something that is changing month by month. This was our first visit with the Houston doctor and we just need to be established and let them get their baselines. He asked if it was staying low/high like just minutes or more like hours. I said "oh no, just minutes". He said that was ok. Well of course, Sunday night it lasted for over an hour with going down to 30 and then above 220. Way more lows than highs. Then last night she went higher than ever which was 257 and then down to 31 for almost an hour. She was awake and this normally happens during sleep. She was also very restless, not moving but just couldn't relax. Finally, at 2 a.m. I disconnected her from everything. This is what is frustrating that I know something is going on, it is progressing but there is no help. I really did like this new cardiologist but he just doesn't know Annabel yet. Another thought is that Annabel's heart rate does go up when she is in mega pain. The only difference is that she doesn't follow or begin with the lows. One good thing is that Lance Armstrong's heart rate is sometimes in the 20's. He has a great ticker, right???

She also is having some airway issues. She doesn't have a cold or a respiratory but just trying to control her secretions. We have cut back on the meds to see if this will help. Sometimes a higher does doesn't work any longer and we have to cut back to try to thin the mucous.

I am more comfortable with the surgery for the tethered cord than doing the vesicostomy. Praying that this will help her chest/lung function, straighten her back to where she was and reduce back/leg pain, also play a vital role in her neurogenic bladder/bowel.

I am reminded that we have been given much time with Annabel. I considered it good time with such a happy, joyous baby girl. I think these are just bumps in the road and she needs a good tune-up. What I do struggle with is the reality of this terrible disease called Trisomy 18. The fact is that her little body is becoming weaker and her functions are slowing down. Please pray for Annabel to not be in pain since she cannot let us know what she is experiencing. All the specialist that have seen her as of late have commented on how tough she truly is. Well, we know that!

I need to thank my family who is so involved with Annabel. The older kids bring Annabel so much joy. My family also has been wonderful with Kourtni moving into our home and making her a part of our family. She has been great putting up with our crazy home also. I am so thankful for the relief and help that I have been given. Right now, I truly don't think Annabel could be loved on more! I also want to say that we MISS our soldier boy. Thank God he is still stateside, but I wonder what I will do come December when he is so far away.

15 comments:

ANewKindOfPerfect said...

Oh little Annabel, I so wish we were neighbors! I would love to sit down and talk and cry and drink coffee and just be with your mommy. :)

You know we went with the Mitrofanoff and I read so much about the regular vesicostomy and the skin breakdown, constant wetness, and diapering troubles. I am glad we did not need to do that.

The tethered cord surgery could be a life changing event for Annabel! You probably remember that we recently did spinal MRI's looking for the same thing, but she doesn't have it. The neurologist and urologist BOTH told me that it's sometimes a good thing to find a tethered cord when you have bowel/bladder issues, because surgery can resolve them. I'll cross my fingers and toes that it works for Annabel!

Kathy said...

God is on the move making sure that sweet Annabel gets the very best care. He all ready found the perfect mom and family so why not the best docs?

Praying that this is just the ticket for her bowel/bladder issues that cause her such discomfort and you such frustration.

Love you girls!!!

Laurie in Ca. said...

So much going on with sweet Annabel and I am praying for her Cathy and for you too. Lots to process and deal with and of course you always want what is best to help her out. It just seems so tough at times and the silent tears stab me in the heart. Know you are loved and thought of daily girl.

Love and Hugs, Laurie

Tamara said...

Oh Cathy, tears just stream as I read your post. Ohhh I am thinking and praying for you! Call me so we can chat! I would love to hear from you if you have the time. My heart is yours sweet friend and I will be on my knees for you! Please hug that sweet girl for me, please, give her a squench for us! I love you!!!! Tam

Denise said...

Sorry you are going through so much Cathy. You are right God has given you this gift for much longer than we ever thought she would be here. If you need anything let me know. Give her a kiss from Gay and I

Tracy said...

We're praying in Milwaukee for your tough and sweet baby girl!

May said...

As always I'm amazed at how you take Annabel's medical needs in your stride. I'm so glad you have a good helper now, it takes so much load off you. I'm hoping Annabel will have less discomfort through the surgery. she has been such a toughie despite her medical issues.

Mrs Redboots (Annabel Smyth) said...

No words, just hugs. I'm so glad you were able to go on the knitting retreat - knitting is always good!

Praying for little Annabel.

ANewKindOfPerfect said...

Cathy, go check out my blog. There are pictures of Peanut's Mitrofanoff, as well as .... I am giving you a Lemonaid Award! :)

Angela said...

I was wondering...have you ever thought of taking her to a chiropractor? That may help to control the pain caused by the kyphosis and scoliosis. Poor little thing. Her smiles and joy for life are such a blessing to me...even if it is just through the blog. :-)

Maris said...

I happened to read your blog while I was searching from net some information about vesicostomy. My 11 month old baby girl got this right after birth due to the bladder anomalies. The first 8 months she had each month infection which we treated with antibiotics at the hospital. But 4 months ago we had consultation with Austrian pediatric urologist, who recommended us to rinse babys bladder with the physiological solution each 3-4 days. We have done it now for almost 4 months and haven't had any infections any more!!!! Its fantastic! If you want to know more, here is my email: tytrik@yahoo.com and I'll be glad to talk more about this. I'm wishing all the best from all my heart to Annabel and your family!

Anonymous said...

I got to see your little beauty at the carnival today!!!!!!!!!!! She was the world's cutest kitty cat! Glad to hear you and Mel were playing tennis together! You need to have time to play wife too! Plus, Kourtni (love her) and Tara (best sister EVER) were SPOILING the Belle rotten!!!! She was SO HAPPY and smiley! Holding her and seeing her smile made me feel such an amazing sense of joy. She makes me feel closer to God. I don't understand His reasoning or methods, but I do see the angel wings He placed on that little beauty! She truly is a little angel. Also - you totally rock as a mother!!!!!!!!!
Love,
Lisa

connie said...

Oh, Cathy. You give a much clearer sense of your worries on here than in brief phone calls. You need to keep this blog going! (just my silly vote)

We have been praying for Annabel, and I need to remember it's almost as hard or sometimes harder even on mommy. So I will remember to pray for you just as much as for our sweet girl. THanks for the update.

Kim (marygracesummons.blogspot.com) said...

Cathy,
As I try to get caught up on all that's going on with you and Annabel - I realize how longs it's been and how overwhelming I feel for you. I don't get to the computer much anymore except to pay bills but when I do I try to at least look at
Annabel even if I don't have time to read. Thank you for continuing to blog and show the joy that sweet Annabel brings regardless of the difficulty - she is so worth it. And I read about Kourtney - what a blessing! It warmed my heart that you got a weekend away. There is so much going on with Annabel right now, I am praying for her and that God will continue to guide and strengthen her Momma. Know you and sweet girl are always in my heart - no matter how long it's been since you've seen my name!!
I am also praying for your son and thanking God for men like him!
With much love,
Kim

Wherever HE Leads We'll Go said...

Thank you for sharing your sweet Annabel through this blog. What a blessing this little one has been to your family and to those of us who read your blog! Praying for you to have wisdom in making these tough decisions and that you will have peace about the decisions that have been made.