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Posted 2015-10-20T20:16:18Z

Back home!

Things are looking good! The surgery was performed twenty minutes before scheduled so that was s nice surprise. Less time to worry! The procedure was pretty speedy but Annie didn't come back to us in the room for about thirty minutes. I was so anxious to see her. She was very sweet and cuddly when she came back. They did give her some fentanyl after because her blood pressure was elevated. But that all passed before we left. I barley slept last night ; darn anxiety. So I don't know what else to say. Hopefully Annie isn't too tender or in pain in the next couple days. Thanks for you support!

Posted 2015-10-20T01:06:30Z

Surgery.

Tomorrow, Tuesday October 20 Annie has surgery scheduled to get her PEG tube out and to then get the MIC KEY button. We are so excited. The new hardware is flatter and easier to conceal. She won't have a long tube sticking out of her shirt all the time. But. I have to wake up at 2:30 am to give her a final feeding. I'm not excited about that. We have had some progress with the wbl school district. They have 0-2 serviced and she (obviously) qualified. Starting next Monday we will have an OT that comes to our house. And we totally click with her so that's been positive. We have cut down to just one therapy a week at Children's. I will post an update tomorrow. Annie will go under anesthesia tomorrow but it is an out patient procedure. So please pray for an easy procedure, wisdom for the doctors and PEACE for this worried mama. Thanks!

Posted 2015-08-17T00:52:21Z

Finally home!

We are so happy to be home! We stayed all day Saturday for continuous feedings. They gave Annie about 15mL per hour for four hours and then keeps upping it until we were at 50mL. This morning we then stopped and let her digest that then we went ahead with 120 mL over thirty mins. She did good with that so we were discharged!!! Annie has a PEG tube into her belly. It has a disc inside her stomach that keeps it in place and a little white arm that hold the tube in place on the outside. She then has a big sticker thing that holds it on her skin so any accidental tugs don't pull on her site. We have to clean the area and twirl the tube twice a day. It's like having newly pierced ears and you don't want it to heal in one place but to move it around. In about two months she can get a MIC KEY button and that is very small and flatter-so less noticeable through clothes. Annie and Johnny face timed this morning and it was so sweet. They really love each other. They talk and wave and Johnny was trying to share his breakfast with her. And of course-they kiss goodbye! It was so good to get home. We all had a long nap and spend some quality time cuddling and playing. We resume therapy this week and are hoping that she will progress even more with the nasal tube out! Thanks for the thoughts and prayers! We are so happy to be home!!!

Posted 2015-08-14T23:24:16Z

Success!

We are so happy to have that ugly NG tube OUT! The surgery went easy peasy-I had a hard time waiting until I could see Annie in recovery. It was about 40 mins total that she was gone from me. She kind of woke up in recovery but it really wasn't until a couple hours later that she seemed awake-and then fell asleep shortly after again. It's super weird because right now her tube is emptying into a diaper-it's not being shut off until after some gunk has drained. Unfortunately her tummy was upset and she yacked for a little bit. It broke my heart! Today she will just have IV fluids and pain relievers. Tomorrow morning hey are planning on starting the pump for feeding her normal formula. If a couple feedings are tolerated if sounds like we will be able to go home tomorrow! But. She's pretty pathetic today ๐Ÿ˜ž we are so grateful for all the thoughts and prayers. It's so nice to see her little face again! More to come...

Posted 2015-08-12T18:27:35Z

Barium done!

Annie did such a great job with the barium test. They put about 40 mL into her tummy through her NG tube. Then She had to lay still for about 20 mins and the and two men had to move her as the radiologist commanded. She was just a sweetheart! Everything looks good in her anatomy so that's great! We don't need any additional hurdles! She was so enthralled with the fish tank in the radiology office so we had to stay and watch the fish for a while after she was done ๐Ÿ˜œ thanks for the thoughts and prayers. Now we are just hoping that things go well in the next 48 hours. I'm such a freak; I always get nervous that someone will get sick in a critical time like this. So my anxieties are overtaking my thoughts. Please pray for continued health for our family. Thanks!

Posted 2015-08-10T18:27:00Z

Surgery scheduled!

I was so excited! Last week I had left a message at the GI Office saying that I am very flexible if a cancellation opens up. This morning at 8:49 I got a call that the 9:40 appointment was available. So I nabbed it. Luckily grandma Miriam was already on her way to come play so Johnny was covered! What great timing. Annie has to have a barium enema test tomorrow at Children's to make share her anatomy is in the correct spots. It's really good that she has the NG tube so they will just inject the barium through her tube-i am envious because I had to have this test 10 years ago and remember crying as I was gagging it down. Surgery is scheduled for 1pm on Friday. She can't eat after 6 am so I hopefully can distract her. It's not like she will want to eat orally but she may bang on her high chair or pump to tell me that she's hungry. That would be sad. It's a very quick surgery but at least one night in the hospital to see how she tolerates the tube and for observation. They will feed her through an IV until the tube is read to take on pump feedings. I'm so happy that it all worked out this week! Annie didn't have any therapy scheduled this week due to therapists vacations so I had a feeling that maybe God was up to something. I was praying that this would happen while we have an open week and before the grandmas get busy with back to school. Pray for Annie to not feel hunger tomorrow and Friday morning Pray for a smooth and successful surgery. Thank you!!! (Pictures of Annie in her new big shoes that she herself picked out. She was dancing in them!)

Posted 2015-08-05T19:20:23Z

Feeding clinic day at Childrens Hospital

We have been waiting for this appointment eagerly. It's an evaluation by a dietician, OT and speech. Then they all discuss and come up with a long term plan. I'm not really sure why this wasn't accomplished when we were in-patient but whatever... So they concluded that Annie is not going to ingest food in the near future. (Hoping she might eat some sort of food in a year-they pointed out that right now she is actually showing disgust at food and she definitely won't ingest something that she is disgusted by) NG tubes are not meant for long term feeding so she will be getting a G tube within the next few weeks. A G tube is just a little button that goes right into her tummy. This will obviously get the terrible tube off her face and allow for long term feeding. She will be able to go to Sunday school and other activities now and not be at risk for getting her tube pulled. Her pre-op consult is on August 18, and the actual placement surgery will be scheduled at that point. Please continue to pray that Annie will tolerate therapy and become more desensitized to textures. The photos are of her playing in the waiting room. Of course, she convinced me to buy her a new stuffed animal at the gift shop....๐Ÿ˜†

Posted 2015-07-21T17:44:00Z

One day at a time...

Feeding progress is slow. We are just trying to get into the groove Of our new schedule. Can't remember if I've said this be she needs to eat five times a day, five ounces each time. We can vary the length of the feeding. Sometimes we do 30,45 or 60 mins. The first feed of the day can be quicker because her tummy is empty. But as the day goes on we tend to lengthen it so as not to make her barf. Which has happened a number of times! I thought the process would be as simple as dumping food in a bag and turning on the pump but it's more complicated. Before every feeding we have to test the pH of her stomach contents. (Gross). By connecting a syringe to her tube and pulling back. We then put that contents on a pH strip and watch for results. It is not in the right range it could mean that the tube has moved to her lungs or something and that would be bad. Then we have to give her 5mL of water. Then we put the food in the bag, mix whatever supplements she might need and then the hard part. MATH! We have to program the pump each time. For the volume of the feed and the rate. All in mL. It sounds recently easy. But my brain isn't fully functioning lately. So if we want five ounces for thirty mins it's 150 mL at 300 per hour. That ones not too hard but whenever I have to figure the 45 min feedings I get confused! At the end of the feeding we have to give her water too. She's tolerating it quite well but she does not like it when I need to clean her nose. I can only imagine How uncomfortable it must be. We are pursuing therapy at Children's once a week and continuing at our Hugo clinic once a week also. Everything seems hard to do with her tube! She's like s little doll and the fear of tugging on the tube is so stressful! Poor Johnny. I've been telling him to be gentle continually! Our lives will probably be pretty boring for a while. I will update as needed. Pray for Annie to learn to drink the Pediasure from a bottle or cup. Then she could get the tube out while continuing to learn to eat solid food Pray that Johnny is gentle and understands what is going on. He has been extra wild and challenging today. Pray for patience and wisdom for us parents! This isn't easy stuff! Thank you !!!

Posted 2015-07-17T21:13:39Z

Home at last!

Annie has had trouble with her second feeding of each day. Her formula is vanilla flavored and we might be very sick of vanilla scent by the end of this journey. Luckily we were still cleared to go home! We have a number of follow up appointments in the next few weeks as well as out patient therapy with Children's and with our previous OT at Kids Abilities. We don't know the end date for the tube. It all depends on when Annie decided to ingest FOOD! Her pump runs for about 45 mins, 5-6 times a day. Annie is our calmer child and is able to sit nicely and play while her food pump is going. But I'm sure she isn't going to be a fan of it for too long; especially once Johnny comes home on Sunday! She also received a little backpack that the pump and formula can be carried around in while it's running. It's pretty cute! We are really hoping that things calm down around here soon! Dishwasher is broken and water has saturated the basement carpet! Good thing Scott is handy!

Posted 2015-07-17T16:08:21Z

More of the same

Yesterday we had a day of scheduled feelings for Annie to see if she could tolerate the formula and calories. She only puked once so that was pretty good! We took her to play in the kid zone and she slowly played and observed the other kids. We are hoping to go home today. We were trained on the pump and all the fancy things we have to do for her. We even got our own stethoscope!? We have to listen to her tummy to make sure the tube stays in the right spot. Scott slept at home with Johnny last night and discovered that we have water in our basement...๐Ÿ˜ฉ Stress on top of stress. This too shall pass,right? Annie is just getting her feeding and snoozing on grandma. More to come later. Pray that the transition to home goes well for all of us!