50/50 chance..

We are now waiting on result from the KUB(xray) to see if we will be home again in our own beds tonight. Our local hospital is wonderful and they make it like home for us here, but, NO PLACE LIKE HOME, right?
They are saying if she is no worse and tolerates her feeds we can do all of this from home. She has had no more incidences of pain as when we came in. YIPPEE! Our doctor here called the surgeon in Houston and he said that his concern is that she could lose blood supply to the tissue or bowel if this were to persist. We do know that the problem Annabel is having didn't just begin. Her bowel after reviewing past xrays have indicated this problem. Why it has not been address???That is a huge question to me and I will get with her gastro next week and try to get answers. In my heart I just feel this is such a big surgery for Annabel that I need to make sure it is totally necessary. I also want to be making decisions not because I am exhausted or worn down. We have been told many things that are happening or changing as of the last few months. I think we need to step back and sort things out.
Some goals are to go home and get her healthy and eating to gain her weight back.
Get her adjusted and successful on her BiPap machine so she feel better and not so tired. Get her surgery for her urinary issues (not a big deal)then this will alleviate the need to cath. This is schedule for June 16th in Houston. We will observe and meet with drs. concerning her bowel and decide what is best for Annabel.

WORD IS IN, WE ARE BEING RELEASED!!! Thank you to everyone who have prayed for Annabel always, but especially the last couple weeks. I am going to pack up.
Love to all!

No Room at the Inn...

At this point there are no beds at Texas Children's in Houston. I think this is a blessing in disguise. I don't want to mislead anybody, it is not a bad place to be. But I just need to be close to home for a little while. (Sorry for the whinning)
It was so nice to be home yesterday. After noticing that Annabel was not eating very good yesterday, I just chalked it up to being released and traveling home. Mel and I were able to go out for a quick dinner. It is hard to catch up on six kids, my life, his life, work, etc. in about 75 minutes. When we arrived home Tara told me that Annabel had lots of mucous and didn't want to eat much at all. As I was getting her ready for bed she just seemed to want to lay her head on my should. Again, just thinking she was tired from the release. After doing all the bedtime routines, I placed her on BiPap. I went to begin washing clothes and unpacking, try to catch up with the twins and their school schedule. Mel said Annabel was screaming. I immediately thought how she is probably spoiled from her and I sharing a bed for week. When I went in to her room, I was shocked. Her heart rate was over 200 and I had never seen her so stressed. I unhooked her from everything and thought I would rock her until she was comforted and maybe asleep. No dice, she was in some kind of pain. Her heart rate continued to stay high and I could barely touch her stomach. It seemed to subside briefly with some gas being released and then a BM. She comforted for about 20 minutes. I rocked and her numbers decreased. Then it hit again, high number and much pain, so much screaming. I looked and she was purple around her mouth. Mel said, "Cathy, I don't think you need to mess around! Maybe this is what the dr. meant upon release and you need to take her back." I was sick to my stomach at the thought of packing up dirty clothes, basically just packing anything. Her heart rate continued to rise and she was still in pain. Mel call 911 and they were there in minutes, kneeling beside my rocking chair. Also, I had called Tara for moral support and she had arrived. Since Annabel was hooked to pulse ox machine they just put her on stretcher and we were off. Her heart rate rose and she began vomiting as we arrive at the hospital. They began xray that showed an obstruction and then followed up with CT scan. They were not able to obtain an IV. We were told that she had to be transfer that she was too complicated a kid for this hospital. The problem is no bed, hence no room at the inn... About 8:00 a.m. she was brought up to PICU when she still lies.. Still no room at the inn.. The pediatrician arrived and he said that she could not have the surgery now if she still had c-diff. She would have to complete antibiotic and have stool culture again. I was safe, I didn't have to go right back to Houston. It felt so good to know that the kids could come visit me and I wouldn't feel so guilty.
My prayer is that in this time of waiting that somehow these issues will resolve. That this gut issue, large, loopy and lazy bowel will shrink down and function normally. It is a larger surgery than I want to put her through. At this point I am choosing not to dwell on those thoughts, just get her well and stronger. They just weighed her and she has lost exactly 2 lbs. from when she entered Texas Childrens last week. Of course, that is on a different scale. Thank you for checking in and I will keep you posted on her progress.

Just when we thought....

Just when we thought that hospital beds were over with... as of last night Annabel ended up back in the emergency room. Her heart rate was over 200 and she had started to turn color around her mouth so mom called 911. She was in severe pain for about an hour then, after throwing up in the ambulance, she was fast asleep as if nothing happened. In the ER, they x-rayed her stomach and believe that there is a possible obstruction. Texas Childrens Hospital in Houston was contacted so that she can be transferred to where her doctors are, but there are no rooms available so she is ICU here in Beaumont (they are moving her to a floor room soon). It appears that she needs to have the surgery on her bowel sooner than they thought. The doctors are saying that until she is off of the antibiotics for C-diff then surgery isn't an option. I believe this to be good news in the fact that hopefully Annabel can stay in the hospital here in Beaumont until she is done with the antibiotics instead of being so far away in Houston. As of now, she is resting a lot and seems to be doing ok. I appreciate all the prayers that have gotten Annabel through to today and know that the man upstairs has a plan that will all work out in the end.
Thanks,
Tara

At some point today...

we will get out of here. They are just making sure all the orders are in for home equipment. Hopefully I will be on the road by early afternoon. Again, it is with your prayers that she is doing so well. Thank you...

Can we please go home....

We will wait for the doctors to round this morning. Annabel ate well yesterday and tolerated her formula. Her mornings seem to be so lazy but her afternoons great. My suspicion is that she is not sleeping at night with this new BiPap, but the sweet girl she is just lays there. I am going to ask the doctors today how they think her night went on the BiPap vs. telling them from my perspective. I do think things improved a bit from the night before. She needs another sleep study very soon but for some crazy reason can't get one until Aug. 26th. I say there is a big problem here. I am really wishing to go home today. I think I just need to be close to home and take care of business. Actually today, I have been married for 29 years. I am surely glad I looked at my calendar to see the date. Sometimes I don't even know the day of the week much less the date. Even though many couples married this long have their bumps in the road, we have had our share but will continue to work through these and be here for many more to come. Happy Anniversary Mel! I do wish Mel read the blog then I could hint at a dinner out! I guess just a dinner back near home would be great today!

Prayer request for Stellan and Kathleen

Stellan:
Today was orange day in honor of Stellan. He is 5 months old and had a very risky rare heart operation this morning. Annabel dressed for the occasion in honor of Stellan and submitted pictures to his site in support of his surgery and recovery to come. For more information go to www.mycharmingkids.net.

Kathleen:
Some of you may remember in an earlier post, we were asking for prayers for her, her family, and little girl to be born with Trisomy 18. After rounds of testing, they found her little girl to have multiple health issues. I recieved a call today that her little girl is no longer alive. Please keep this family in your prayers as they make many decisions regarding their little girl.

More of the best...

The first picture is Juli who is the Child Life Specialist on our floor. She has come by most everyday to bring Annabel toys and entertain her. She is wonderful and so cute and young, so maybe I don't really like her (ha!)! She also brought Annabel this huge Distraction Station. I has a projector on the top to project colorful images/shapes on the ceiling or walls. It also has a huge bubble tube that can change colors at the touch of a button that Annabel can control. Our nurse today was Karen. She was so gentle and sweet with Annabel... and so graciously patient with me. There are a few more that I will try to get pictures with before we leave if my camera doesn't run out of juice.

Some of the best..

Here are a couple of Annabel's day nurses. Heenan and Carla are so sweet with Annabel. Heenan was Annabels nurse in the pod prior to being in her private room. Carla has been our nurse the last two days. Heenan still drops by daily to pay her a visit. If you noticed the bling-bling in Annabels hair, this is from Carla. She went to lunch and reappeared with her sweet gift. The last picture is of Beth our night nurse for the last two nights. She has allowed me to get much needed rest. I do know they have so many demands and I hope they forgive me if I act as if I am the only patient in the hospital with my gazillon questions! We have had several other wonderful nurses and I do hope to get their pictures with Annabel before we leave.

Any input welcome...CPAP v. Bi-PAP

I want to begin by saying again and again that Annabel is here because of so many prayers being offered up on her behalf. It is looking like this c-diff bacteria is being taken care of by this antibiotic. We are still waiting for the orders to be written for a type of diluted formula that her tummy will handle and see if she tolerate this.

They are having to change her from the CPAP to the Bi-Pap. We knew that this could happen eventually just not being this soon. In reviewing her readings from yesterday and last night she seems to be having more central apenea than initially thought. Her repirations become very low then this makes the saturation levels drop. She has begun to do this more during the day even without being in a deep sleep. You cannot judge these numbers as acurately when she is awake due to her moving her foot which is where the lead is. From what I understand the CPAP forces the air in at a certain level. They have moved her level twice already and had to add oxygen to that and she still had too many episodes. This is what may be inacurate, the Bi-Pap will have two levels,one that is set to forces the air in and then one that helps the air out.
I guess I am asking that if anyone has any knowledge of a child that was on C-PAP moved to Bi-PAP that they would give me information on how their child is doing. You can either comment on here or you can email me listed on the sidebar of the blog.

There has been some talk of other reasons for what could be happening if this doesn't seem to work. I will wait to share those after it is decided how she does on the BiPap the next few days.

A Big Surprise for Annabel...

We thought Sunday was just going to be a lazy day hanging out with myself and Annabel. Thank goodness for Annabel she had a break from her mommy! Ms. Ann, her teacher and Ms. Linda, her OT from school drove to Houston to see her. What a surprise! Annabel shared many of her smiles with them. Again,to Ms.Ann, Ms. Lisa and Ms. Alice for Annabel's balloons that are as big as her and to Ms. Linda for her 3 new books.



My prayer for now that this bug is under control is that we become stable with the CPAP machine. The goal was to go home with as few alarms as possible and with no oxygen added if possible. Yesterday when awake she did well. It is when she sleeps that her respiratory and her oxygen level decrease more than they want. I have had some of the best nurses, but last night she was just like a momma to Annabel and myself. They had to ultrasound her bladder every 3 hours due to her holding so much urine. So she was insistent that I sleep and she take care of the cathing every 3 hours. She also responded to the alarms and I didn't need to listen to make sure her levels were returning where they wanted them to be. When leaving this morning she mentioned she would be back tonight and should have Annabel as her patient. Thank you, Jesus.

Sunday afternoon...

Just wanted everyone to see how Annabel is spending her Sunday afternoon. She took a good nap this morning, but couldn't keep her sats up so they had to do the CPAP thing. Goal is to go home and only use this during the nights. They began Pedialyte this morning at 8:00 with 5cc and will up 5cc every 3 hours. She needs to tolerate these so she can begin the pediasure. I think their goal is 40cc at a time.
She had her bath and is just hanging out watching her DVD's.