Saturday, April 18, 2009

What a great evening...

In comparison to this time last evening, this one is wonderful. My evening consisted of ordering take out at Jason's Deli (the best soup in the world, Poblano Corn Chowder). Ok, really I ordered 3 bowls of it, Tara is leaving tomorrow and I needed my lunch and dinner for tomorrow. Can you tell I love this soup????
As far as entertainment, I had Annabel to watch. Her and Tara put on a show. For about 20 mins. she was so animated. We laughed so hard and with a belly full of the best soup I am about to take a much needed winters nap, or maybe just a peaceful nights sleep. They still say she will need to begin to eat eventually and see what her gut does when they introduce her pediasure and then baby food. Putting up a few pictures so you can see why I was so entertained tonight.
I also wanted to say how kind the things you have said about Tara. She has provided me with great company and been a great pair of hands to have being here. I am equally as lucky that Mel is home keeping the homefront in shape.
As I sleep tonight, I will thank my sweet Jesus for the smiles that he has given today. He gave us so much by allowing us to have Annabel for these past 4 years and I pray I can give Him glory by being a better mom to all my children.

Answered prayers...

Can I just tell you how much this warms my heart??? Thank you for praying for Annabel and her needs. Friends all that is priceless

More relaxed...

At this point everyone seems more relaxed. They are even asking me what I think and how I think she is responding. I did get some sleep right next to sweet Annabel. Even though I didn't get my sweet smile, she did hold my hand throughout the night. Yesterday, she would hold it briefly then toss it aside like she didn't want anything to touch her.
Pedi Surgery came in first and they said they are not as concern that surgery is eminent. The felt her belly and said that if it gets firm again we will have to reevaluate.
Pulmonary was next and he seemed so please that we are probably only dealing with C-diff. He says it is treatable and that hopefully we will see her getting better in the new few days. He said her antibiotic can be given via G-tube so we do not have to stay full 14 days.
More x-rays after him to see how she looks this morning. Then lab came by to draw blood for levels.
The Head Surgeon came by to talk about what would need to happen. She will need surgery. They are not sure it will happen at this stay. They say that she has a very large loopy, lazy area of her bowel/colon (can't remember, is it the same thing?) that will need to be removed and resected. Yuck! It is probably not the surgery that scared me it is just the putting to sleep and waking up that I freak out about. One thing that she really needs is something to alleviate this cathing business. We had just seen her urologist the day we admitted her and he clear her for that surgery. The one he mentioned didn't require an incision but she would need anesthesia. I did ask the surgeon if the urinary/and the loopy bowel could be done together and he said not a good idea. I was just hoping one less time to put her to sleep. They are all saying that the surgery could still need to take place while here but it not any minute.
What she needs to do is wake up and respond to us. That is my prayer. She does seem to try to focus when she opens her eyes but they just roll back into her head and she is asleep again. I think her little body is so exhausted and the runny diapers still continue at a high frequency. To me at this point she seems a little more comfortable. We were able to have her sleep with her C-PAP after around 1 a.m. because her sats were dropping and she seemed relieved to have it on. We just took it off this morning and they are not dipping low now. They are fairly sure that when she is well she will become more stable on the CPAP. They say that is not an option but we want to lessen her need for oxygen.
Will keep you posted today especially if things change. I feel that she has down declined since last night and that is what we were specifically praying for. It will just take time for the antibiotic to help with her belly and diarrhea.
The top phot is of yesterday when she wanted to cover her eyes and everything go away. This one here at the bottom seems to be a more peaceful Annabel. I am hoping that later today maybe some eyes open with a little smile.

This quote was sent to Annabel a few days ago by Lauren. Annabel's biggest gift has been her beautiful smile, so this quote by Mother Teresa was close to my heart.

"Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing" - Mother Teresa

Friday, April 17, 2009

The plan for now...

I must start by saying how much we appreciate your prayers and kind thoughts via emails, text, calls and comments on the post. Right now as I sit, we am thanking God that I am not making a decision on surgery. Today she has had about 25-30 min. of wakefulness. She did clap her hands and give those sweet smiles. We tried to sit her in her bed but she tired very quickly. They say she is dehydrated and toxic, among other things.
Pulmonary came in early afternoon and was concerned with how much stooling and pain she was in. They didn't like the way she looked and the increased heart rate she was experiencing. At this point we knew it wasn't rotovirus. Pulmonary ordered another xray of her abdomen and that took way too long. The doctors were in the hallway and they were getting upset that things were taking so long. After that the results were called quickly by radiology that didn't like what he saw and that pedi surgery was on their way up. This also took a little while and her blood pressures were up and her heart rate was not coming down. She continue to be basically non responsive and obviously in pain. When the doctors came they said their last resort was to be surgery. They said they were looking at Sigmoid Vulvus (sp.) where the sigmoid colon becomes twisted or something called intermittent sygmoid vulvus. Sorry for the spelling, I didn't ask him all this. They said to monitor her for a bit longer and if she continued to decline they would take her to radiology and do barium test with dye. Then have gastro do a scope from her bottom to also see what is happening. The told us that all involved would be here tonight or in the morning if surgery was needed. As they left the Physician's Assistant got the call that she was positive for C-Diff bacteria. So they all got back together being pulmonary, pedi surgery, radiology and gastro. First it was to change her antibiotic that she was placed on today for her gut to something specific for C-diff, continue antibiotic for pneumonia(this is better today) discontinue steroids(hopefully shaking will decrease) and do more IV with bolus saline. They can now give her something for pain if needed, prayers answered. If we don't see improvement soon by tomorrow or if she declines rapidly back to radiology for testing, scope, with last resort surgery, depending on what happens. I do know that God has heard all the prayers offered up for Annabel. I didn't want to deal with surgery and I am sure all is being done to avoid this. Tonight at 11:00 p.m. she is exactly the same no worse. She is non responsive and still in much pain, with heart rate up but blood pressure a little lower. I am totally praising God that she is not worse. The antibiotic just went in and they are saying that possibly 2-3 doses given every 6hrs. and we may see something change for the positive. That is my prayers for now! We will accept small steps to know that she is being treated the right thing. And yes, please God if you can hear me, just a sweet little smile from our Angel baby! Thank you, thank you...
P.S. I know without a doubt God is hearing...
I am just know getting to post this, there have been many distractions. I just peeked at her and I so want to see something positive. Right now, if I have to say something is different it looks as though her brow that has been furrowed all day in pain seems to be a little more relaxed. Thank you, Jesus for anything you allow her!

The Constant Battle

Please keep Annabel in all of your prayers. Her health is still fluctuating. They have not found anything out whether it is a virus or bacteria yet, but her health continues to decline. She still is slightly trembling in her arms and her color is slowly fading. Hopefully more fluids will counteract the diarrhea and help her stay hydrated. Right now we are waiting on an x-ray to hopefully help determine if she has a bowel obstruction or not. This could possibly lead to surgery if that is the case. All I can ask at this point is for prayers from everyone. We greatly appreciate everyone's support.

Mommy's busted...

Well I guess I was wrong, we are still in PCU but in a private room. She is considered in contact isolation until they find out about her stools and what the virus is. So I began using my cell phone because I was told just not in the PCU. I thought those pods we were in last week and this week with the nurses in the middle were the PCU, not the entire floor. So tonight after I had been on my phone way too much, a nurse kindly, but firmly said you are not allowed cell phones in the PCU. I said I know, I didn't use mine in the PCU. She said you are NOW! I replied, no, I am not in the PCU any longer. She informed me that this entire floor is the PCU and not allow anywhere but the family room. I think I got it now. So for all those that I told could use my cell now to reach me, I was totally wrong. The hospital room phone number is 832-826-7022.

Annabel did well for a good while until this afternoon maybe around 5:00. She became very much in pain and began having one dirty diaper after the other. Probably every ten minutes we were changing her and she has just recently slowed up. They have done more x-rays that show so much air in her belly. A surgeon just came by to feel her abdomen and see her condition. Earlier around 10:00 p.m. she began going down fairly quickly. Her lips were white and she was so pale. She would not have eye contact and just was sleeping almost all the time. We have seen Annabel go down very quickly and tonight when the nurse was in the room checking on her status it was obvious to all that something was going on. They are mainly talking bowel obstruction. But at this point in the last 30 minutes or so Annabel has pinked up a bit and is resting, not lethargic resting! I was able to pick her up, she has been hurting so much she would cringe when we tried to touch her. There were a few weak smiles but good signs.

I am about to crawl in the bed and hopefully have a peaceful night. They have the CPAP set between 7.7 and 8.2 and at this point no oxygen. I do know the hope is that Annabel is just sick with a pneumonia, some sort of virus that has put her oxygen levels at this point. They know she has the severe obstruction and that is not changing. It is the amount of desats she is having and her oxygen needs that have increased in just the last week. Praying for a day tomorrow without any news to report. Maybe just a few smiles from Annabel and enjoying hanging out in her room. I hope you all know how much your support and your comments via blog, phone, computer or whatever has been appreciated.

Thursday, April 16, 2009

Do we have....LIFT OFF?????

NO, but much better! WE HAVE A VEIN! Finally, after trying since this morning and the third and final team got the vein on their first try. Let me just say that I have been praying almost continuously since they first said IV! As soon as this last, very sweet nice gentleman got the vein, did I sign out loud, THANK YOU, JESUS! I do believe he picked all three teams that were sent. From the very first one, they listen and they looked and they stuck on when they truly thought they could get one. Several just burst and most of the time they just couldn't see them. Each team were so gentle and sweet with Annabel. She didn't cry until the last and final team, but they went high into her upper, inside part of arm and they used a big needle according to the nice gentleman. She then did let out a cry but comforted very quickly. She is worn out and very fast asleep.

I do have to say that this is the third time an IV was suggested and they truly tried everything to not have to stick her. I loved when the pulmonology doctor came in just a bit ago and the second team was trying and he said "What are they doing this to her for?" I have to say that I feel after three days he is so protective with her. He was not aware yet of her night and after hearing about it decided he agreed this was the best plan.

After feeding Annabel throughout the night with Pedialyte by her feeding pump she had almost no output this morning. She had probably around 16 dirty diapers since early this morning with mucous and blood. They think her gut needs to heal and that she has some sort of virus going on. They have decided that she does have a pneumonia going on and that basically whatever this is will be a bacteria type germ. At this point no urinary but the pulmonary doctor says we must keep doing cultures since she has so many loose stools. Annabel defies gravity and most things like to travel back up into her.

We couldn't really get stable with CPAP and her oxygen needs due to her tummy that developed a life of it own during the night. She rarely moves around in her bed and last night she travel from north to south and east to west. She hung her foot over the railing on each side several times. She rocked back and forth swinging her arms from side to side. This baby girl was in some kind of pain as I and the doctors believe her pain tolerance is unbelievably high.

We have moved to another room (yea, we have our own bath w/shower) and there is much activity getting her set up. I will post later if there is any new news.

Wednesday, April 15, 2009

Two Doctors and a Baby...

Could this sound like a TV show??? Today brought us two wonderful doctors. Actually, I met the pulmonary dr. yesterday and then today. He was so patient and spent time answer my gazillon questions. Also, the cardiologist spent time with me understanding the heart with diagrams and telling me why all these things are ok for Annabel right now. I use to be a major worrier, but somehow with Annabel I can only worry about what is the here and now. I guess being a senior citizen raising a baby there is only so much room left in this brain for storing information.

Her heart is fine for now. He said her VSD is large BUT because of some tissue that is acting like scar tissue to help lessen the hole the blood passing through is not causing her problems at this time. To make this short, I will mention quickly that all 4 valves are abnormal, heart is large, and aorta enlarged. I have all the numbers and medical terms. In short, Annabel is doing ok concerning her heart. They will watch her closely and monitor her progress. He doesn't believe that any of these oxygen levels are being caused by her heart. I am so thankful that I don't have to be faced with making any decisions that I have prayed I would not have to make.

I had some questions concerning her CPAP that I was able to ask today. Annabel has scarring on her left eye. She sleeps with her eyes open slightly and therefore this caused the drying and the scarring. My concern is that this air blowing right by her eyes all during the night will cause further damage. He verified that this would and we will have to keep her eyes very moist now throughout the day as well as night. Not a big deal but I don't want it to affect her vision. This is one thing that we have hope that she will continue to see well.
The other issue is that she has sinced seemed even gassier(is this a word)? Her tummy fills full of air. Yes, in fact this will cause her to have more gas due to the air being forced in while sleeping. Again, not a life threatening issue we will just have to deal with.
The plan was if all went well and she did good on the CPAP we may go home tomorrow. This meant that she had to tolerate the new level for the CPAP. Last night the level was not good enough and she needed 5 liters of oxygen fairly early in the evening. The doctors this morning wanted to up her level on the CPAP to 8 at bedtime. We could tell when Annabel was getting tired for her nap that her level began to decrease and by the time she was falling asleep she was getting lower than they wanted. So respiratory came and set the level to 8. She was ok for a short nap but I do think the added pressure made her restless.
Annabel decided to roll out the welcome mat for her sister Tara's arrival. She began vomitting and having bloody loose stools. We had been clear of any stools since yesterday around noon. YUCK! She did have a hard time going to sleep due to her tummy troubles but is now asleep.
They have set the CPAP at 8 and with 3 liters of oxygen. This is where we are now and I am going to try to get some sleep. My plans were to let Tara have the night and I sleep somewhere else(here in the hosp) but with Annabel not feeling so well I am going to stay here close by. They key to getting out of this place is that she be successful with the CPAP. I would love to go home tomorrow and sleep in my bed but only if we are going home to as few alarms as can be.

God continues to watch over Annabel. He brings wonderful people into our lives. He took away the doubt about our cardiologist at home by bringing this new cardiology doctor that just happened to know him. I am grateful for the peace that my heart feels concerning this matter.
In light of all Annabel's issue they pale in comparision to what Kathleen is about to face with her baby, Stellan, Jonah and so many others out there that are in desperate need of our prayers.

Very quick update...

Tara has arrived and this will allow me time to sit down and make a post that hopefully will make some sense of this little hospital visit. Hopefully in the next couple hours pending any issue with oxygen levels and bedtime I will be clarifying her heart and some of the lung issues. The heart issues have been clarified and heart surgery is definetly not needed in the near future. Also, the sweet doctor today was so patient in explaining why our cardiologist at home saw what he saw and that is what we where told and why. He actually knew him! I want to especially thank everyone for their comments, their calls and their text messaging. They prayers are so appreciated as always.

Tuesday, April 14, 2009

Behind bars again...

I have been struggling to make this post for well over a week now. When I made the post about a week ago after the sleep study and some of the early findings I was confused. When you read this you see I am still confused over a week later. I have put off making a post directly related to any of these finding but I am going to attempt to write some of what has been discovered. I am not medical and I do struggle to put everything together with much understanding. So if I make a mistake you can feel free to correct me or just hope that eventually it will all be explained in its entirety.
Our appt. with urology went great! Her urologist is very willing and thinks we have exhausted all other methods of helping Annabel with her neurogenic bladder.
Early we did the prophylactic doses of the antibiotic beginning prior to 1 year. We did that until she continued to have multiple breakthrough UTI infections while on the meds. She was in Grade V reflux (bladder back into the kidney) on both sides so her doctor agreed to perform the surgery. This was a success and at this point is not back in reflux. Her bladder now is neurogenic(lazy) and works almost not at all. Then we moved to the cathing and have been doing this for 1 1/2 yrs. About 1 year ago we introduced an antibiotic solution into her bladder with another cathing procedure after her morning cathing and evening cathing. Annabel showed that she could be potty trained and did very well with this. It was found that Annabel couldn't empty her bladder and was still holding the urine so we still had to cath after each potty episode to remove the leftover urine. But I do believe that it is good for other Trisomy parents to know that it maybe possible that our babies can be successfully potty trained if they don't have other UTI issues. She is back to having the infections close together and some before the dose of antibiotic is done. Annabel runs a high risk of becoming resistant to being on so many antibiotics. This has been a problem about a year ago and our new pedi is very conscious of this. The procedure that we discussed with the urologist yesterday (he had mentioned about 3 years ago) is what I have prayed about and have felt lately that this is what Annabel may need. The urologist thought we were at this point also yesterday. I will talk with her new pediatrician at home and make sure she is in agreement with this.
She will have to be sedated and with the new heart and lung issues she will have to be totally cleared before we can move forward.

As far as the sleep study went, she was found to have severe sleep apnea. She as about 2/3 more obstructive vs. central. Her numbers are very high, anywhere from 45-98 epidsodes an hour. This includes both central and obstructive. It is found she desates into the 60's during much of the night. Last week when she was placed on the CPAP she did so well that after only one night we were allowed to go home. She did perfect for 7 nights with no alarms. Friday morning she woke alarming with high heart rates. This was unusual for Annabel and it continues off and on most of the day Friday. We saw the pedi on call at home and she didn't have any other symptoms. We were told to go home and monitor. The next two nights she continued to desate on the CPAP and at times during the day her heart rate seemed much higher than normal. On Easter Sunday she alarmed most of the day and night, so much that I had to keep turning it low. She was placed on oxygen during the afternoon on Sunday and this helped. We were told to called pulmonary on Monday morning and so we did. He gave us the option of going home one more night or being admitted into Texas Children's that day. We still needed to see the urology and then my twin daughters where playing their regional tennis tournament today in Plano. So we opted at that point to see the urologist then head to Plano and monitor Annabel one more night. We could always come back through Houston after the tournament and drop us off to be admitted. I really struggled with this and what was best for Annabel, while heaping on the guilt that I could not be everywhere to everyone at the same time. Tara strongly encouraged me that she would take the twins to Plano and I should stay here. That way everyone would be taken care of and it was what was best. I dreaded going through the ER to be admitted because of the time it would take and exposure to all the germs for Annabel. As I was still struggling upon being admitted, I was brought back immediately and things moved so quickly. Annabel began having much diarrhea, coughing episodes and running a temperature. God quickly took care of my guilt and I had peace that I knew we should be here. Well we knew she must have a tummy bug then and the xray came back with pneumonia in her left lung. Maybe the explanation for the desats while on CPAP.

All was ok until around 3:45a.m. when she began to have many desats while on the CPAP. They had to call respiratory 3 times for more oxygen to be added with the CPAP. After about 5:15 things settled down and she is still sleeping.

Now concerning her heart. As I have mentioned before we were told at birth she had a VSD and bicuspal aortic valve. They were insignificant, the hole was almost gone and that she could live a long time if not for the trisomy with these heart issues. This was by our pedi cardiologist at home whose care she has been under since birth.
After the Echo here in Houston last Friday, other things are being discussed, with the drs. not directly with me. I have been told some of these following things but not with great understanding. That she has several valve issues(4), a LARGE VSD (told this was almost closed recently), an enlarged heart(significantly), a dilated aorta, mentioned a leaky heart and a few others that I will try to get together after meeting with cardiology. It was also said that if she is not found to be a surgical candidate or if surgery is delayed??? Ok, this is where I am totally confused. For four years, I was under the impression that our heart issues were almost taken care of and insignificant. With our pedi cardiologist at home, I also had a very caring friend go to these early appt. with me and who heard the same thing. My mind cannot help but go back to the fact that did the pedi cardiologist just decide this is all I needed to know. Each time Annabel was admitted at home, we were told first thing her heart was enlarged, cardiologist would come in right away and tell me, I told you her heart is ok, she has lived much longer than expected. The Ms. negative Cathy is struggling with the thought that why is he deciding if her life has been lived long enough. The Ms. positive Cathy is telling myself that I am sure his machines are just outdated and that Houston's are just more progressive.

This post is not a total summary that probably makes much sense. I know now she is sleeping peacefully with good oxygen levels, no fever and a beating heart. She has had four good, happy years and I know that God is taking great care of her.
Please don't judge my medical expertise on this writing. I am one that tends not to question until I really have to make room in my mind and deal with it. So probably the next few post will be just ramblings and phrases that I am being told but not necessarily the final diagnosis or outcome. I do know that we(Annabel) is totally in Gods hands, and that Annabel has a very aggressive caring pediatrician back home who follows closely, and that here in Houston she is getting state of the art care. For this I am totally grateful.

Monday, April 13, 2009

Road Trip...

The picture above was of the kids after Mass minus my 21 yrs. old son who is off preparing for his deployment. He will be back in a month. As you can see Annabel was not feeling very well. I was desperate to go to Mass, to be with my family and celebrate Easter (o.k. maybe because she had a new Easter dress)!

Annabel had done so well on the C-PAP since the weekend, but as of this past Friday she has not been doing so well. Either her oxygen level is too low and it constantly alarms or her heart rate is racing in between 150 - 210. We had to place her on oxygen to get through yesterday afternoon and then last night I had to turn her level on the pulse ox down just to sleep some. I have just called her pulmonary to see if we have to adjust her machine. We are waiting on a call for another study to be done with them adjusting her levels while she sleeps. Praying this will not take
6 months to get again. Don't think it will with her new diagnosis.

We are in route to Houston for an appt. with urology. I do need prayers concerning this. This is our wonderful surgeon (because he is) but doctor that we struggle with due to the fact that he doesn't find much purpose or reason in Annabel's life. WE are praying he will be attentive to listen to her new issues and that when we leave we will feel like steps are being taken in the right direction. I will post a little later after we know more.

Hoping that each and everyone had a beautiful and very Blessed Easter Sunday!