Whew....What an eventful day!!! (long post)

It all started at 5:00am this morning after a not so restful sleep. I did not sleep well because I was worried I would not hear Autumn beeping or that she would wake up and I wouldn't know so I kept waking up each hour to check on her.

Our first appt. was her spina bifida appointment. James asked the doctor what his thoughts were on if he thought Autumn would be able to walk one day. He said first to walk you have to have a strong core in your hips and upper part of your body. Autumn seems to have that so far. He said at 12-18 months she will get a stander which is a platform thing she stands on and it straps her in and there is a wheel on each side and she learns to hold herself upright and move around with that. Depending on how much weight she can bear on her legs will depend if she will be able to get braces and use a walker. He is very confident she will have no problems standing but not so sure how she will do with the walker but is hopeful--we'll just have to wait and see. Even if she does use a walker she will also need a wheelchair to keep up with long distance walks. We also discussed different positions to get her in to be able to work more on her head control and sitting up. I am suppose to take pictures of all her "toys" like bouncer, highchair, boppy pillow, and swing and e-mail them to the PT to figure out what kinds of things we need to get for Autumn since most of her things have her at an angle that is difficult for her to tolerate with her trach and vent. We also have issues with the angle of her carseat as well so tomorrow the PT will check it out and see what can be done. The doctor said she still is getting lots of air in her belly and since we can't burp her he wants us to vent or decompress her using her g-button before each feeding and 10 mins after. So, that means the button will be staying for a little while longer. :( We also talked about feeding her veggies and he wants me to stay on one veggie for 3-4 days to see how it does with her stools so that we can track which foods make her more constipated and which ones loosen her stools and we can use foods to regulater her digestive tract more instead of using higher doses of the lactulose.

Next we were off to Children's Hospital for her urodynamics exam. Well, our stupid piece of junk pulse ox machine decided it was only going to stay charged for 10 mintues when not plugged into a wall. So, we get in the waiting room and James ran to the bathroom. I was getting Autumn's bottle ready and noticed she looked dusky so I looked at the pulse ox and of course the battery already shut off. So, I hooked her up to the oxygen and turned it up and then turned the machine back on (it will turn on each time it dies but only lasts a few minutes). It said she was in the 40's and by this time she was turning a darker blue. So, I took her out of her carseat and she was completely unresponsive. I just remember thinking I was not sure if her heart was even beating anymore and thinking I may have to do CPR on her right here in the hospital waiting room. She had her eyes closed and laid there limp. I turned the O2 up more and started rubbing her chest and shaking her a little and telling her to breathe. She finally opened her eyes but it was just a blank stare and so I rubbed her cheeks and put my finger in her mouth to pull her tongue down which was at the roof of her mouth. She finally started crying and came right back up. James returned--told him what had happened and then started feeding her a bottle (like nothing major had just happened and no one around us even knew what was going on). I did call our equipment company immediately and told them I want a new pulse ox by the time we get home on Friday! We had her uro test where they had to insert a urinary catheter and a rectal catheter and take images of the bladder being filled and how it empties. We also learned Autumn's vagina was fixed together where her urethra is and the nurse could not cath her. So, the doctor took a 4 x 4 and opened up the skin which would hurt a normal baby but since she has no feeling it did not bother her. They said it could fix together again but they can just open up again if so. That was strange to me because I did not even know that was possible. The test took about 30 minutes and then it was time to pack up again and go BACK to Scottish Rite for the results.

We made it back to Scottish Rite for our uro results. The doctor said there is no pressure in her bladder which is good but she is having a little reflux of her urine into her kidneys. This could cause unrinary tract infections. He gave us the option of either putting her on low doses of an antibiotic which would hopefully prevent any urinary tract infections or just wait and see and if she does ever get one then we would start on an antibiotic. He said either way if she ever gets a fever of 101 we have to notify the doctor to check for an infection and this could be from the kidneys, a trach infection, or a shunt malformation so either way she would be getting checked out so we opted NOT to start on antibiotics until she really needs them. He assured us that if he thought she needed them he would just prescribe them and we would not have a choice so he was happy with our decision. I just don't want her on more meds then absolutely necessary. He said we still do not have to worry about cathing her right now and we are good to go for another 6 months. Praise the Lord!

So, when we got back to Scottish Rite we told the nurse what had happened to us at Children's with her major desat. The nurse talked with Dr. Adams and came back to ask if she had eaten before the desat. We told her no, it was after and she said Dr. Adams thinks she may be hypoglycemic since she went 4.5 hours since her last bottle. This reminded me of 2 weeks ago when we went to vent clinic and when we got back the nurse called asking if Autumn ate after leaving because her blood sugar was low. So, after the uro results we had to go to lab to get blood drawn to check her sugar levels and other things. By this time it was 2:00 and her next bottle was due at 2:30pm. Well, when we got in the room for the lady to draw Autumn's blood she did it AGAIN to us. She desatted into the 20's and once again the dang pulse ox quit working in the middle of it. So, James controlled the oxygen while I rubbed her and we were both telling her to breathe. She was not going up as fast as she normally does and she was on 6 liters of oxygen!!! She did the same things she normally does and when she started crying I knew she would start coming up. James suctioned her and then I heard air leaking and the filter that hooks to the vent and then hooks the tubes was cracked and slipping off so that is probably why she was not coming back as quickly. The lady who was going to draw Autumn's blood and an older lady who is a volunteer were sitting there the whole time just watching all of this. So, when Autumn recovered the lady looked at me and said, "That was a beautiful site". I just kind of laughed like, WHAT??? She said to watch you and your husband work as a team and handle the whole situation without panicing at all was great to watch. She said you both knew exactly what to do and just did it. She said not once did either one of you snap or yell at the other. They could not believe how calm we were and how well we handled it. It made me feel happy that others noticed that even in EXTREME stress that James and I showed our love towards each other and we worked as a team to make sure our daughter was getting the emergency care she needed. I told her that we already know when it is time to transport her who does what job and we can do it without even having to really communicate what we are doing with each other. Now, to say we never disagree on HOW to do something would be a lie. :) He still doesn't realize my way is the right way. ;) I did tell the nurse that I was hot after that whole ordeal so she helped fan me off until my heart finally stopped racing. :) So, after the second stick Autumn got her blood drawn and it was FINALLY time to go back to Mesquite and have lunch. Autumn got her bottle on the way home since now we know that if she is hypoglycemic she needs her bottles on time and we finally got to eat our first meal for the day at 3:00pm (yes, I was starved since normally I have already had 2 meals and a snack by 3:00) We are emotionally and physically drained so hopefully we will all get a good nights sleep before heading back out again in the morning for her suck/swallow study. Thanks for all the prayers--God heard and kept our baby alive when she stopped breathing twice today and we survived as well.