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.