Great way to start the day

                                            Finally, happy girl!

                                                           Another battle wound

Avery is finally starting to feel better, she gave me a big smile this morning. Oh, how she melts my heart. I recieved a phone call from Avery's pediatrician yesterday with the results from her urine culture. It showed a bacteria called psudomonas. This is one of the more severe bacteria's for a young child and the only thing to treat it with is Cipro. This drug isn't recommended for children under 18, as it can cause joint and muscle damage.  They were considering putting her back in the hospital. I was upset I really want Avery's first Christmas to be at home with her family. The doctor called back late afternoon and said she could stay at home but had to be monitored closely.  I was so thankful. This morning is the first time I have finally seen her getting back to her old self.

Waiting for life to slow down a bit

Where to begin. Lets start with my little bean, Avery. Today she woke with a fever, I called the doctor and they had me bring her in. Her appointment ended with a UTI and some antibiotics. She is still not her self. I haven't seen her smile since her surgery and she has the sweetest smile. Its so nice to have everyone home, we are enjoying our new house and all the room it has. The kids like to play hide and go seek. We have been trying to get everything organized, our house, our bills, changing our address, selling our other house, gettting it cleaned so the other movers can move in and getting our kids registered at their new schools. Everything has been going smoothly except getting the kids into school.

                                        

                                             I miss these smiles!

                                                          After her back surgery, still very swollen

                                                    Decorated Avery's room

You would think that would be the easiest. Well it turns out not to be true. When Jeremy and I went to the administration office to get paper work we were told what elementary school Gage would go to. We were pleased, as this was the closest school to our house. When we brought the paper work back we were told  he would be going to a different school. We asked why and were told a problem came up. After a few more questions we found out that an ex-family member who's daughter goes to this school(our niece) told the school horrible things about Jeremy and I and did not want Gage at that school. So the school decided they would just move Gage to a different school without talking to us or even meeting with us. After phone conversations with the principle and the superintendent we have decided to seek legal counsel. Just when I thought we were going to get a break, now we have this to deal with.

Avery is home

We don't have internet at our new house yet, so thats why I haven't blogged.  Avery came home on Friday. She is pretty miserable and very  swollen from the surgery.  She is sleeping a lot and when she's awake she cries. I feel so bad for her. Nothing seems to make her feel better. Starting to see a little bit of movement in her legs, which is a good sign.  Please pray for fast healing!!!!

Avery is still pretty sleepy

Avery is doing pretty good. She is on a lot of pain meds to keep her comfortable. They are getting ready to do another MRI to make sure everything is looking good from the surgery. They will have to sedate her for this. They want her to remain flat to keep any pressure from aggrevating her back. She has been put back on IV feeds until after the MRI. She cries when she sees me, then I feel bad because I can't comfort her the way she wants. This to shall pass.

Avery is out of surgery.

Wow 6 and 1/2 hours later, Avery is out of surgery. She is doing well. The cyst had put so much pressure on the spinal cord that her spinal cord was flat, where the cyst was. They also tapped her shunt to make sure there was no pressure built up. Her shunt looked good.

Surgery taking place

Avery is now in surgery. I was told her surgery is going to take 5 1/2 hours. They are going to have to remove some of the bone in order to get to the spinal cord and hope to put the bone back. She may also need a shunt revision.    http://www.umm.edu/ency/article/003019.htm


I know so many of you are praying for our little Avery. Thank you!!!!

Surgery tomorrow

Avery is set for surgery at 7:30am tomorrow. Our house is coming along. We have almost everything out of the old house. Our new movers want to be in before Christmas. We our trying to get the old house empty and clean for them.

Avery is home for a short time

Avery came  home on Thursday. Before we left we found out that she has a tethered cord as well as a 3 inch cyst on her spine which is causing her legs not to work. She is scheduled for surgery on Wednesday and will be in the hospital for another week. We are also moving. We have  almost everything out of the house now. We will do the garage and yard shed next week. Our friends Shelley and Travis have helped us all weekend, thank goodness for all there help. Moving stinks, its alot of work, but our new house is so beautiful.

Day 38

Well today was eventful. Jeremy and I started our day with meeting  a home nurse to care for Avery when she comes home. This meeting did not go so well. This person informed us that he smokes and will be taking smoke breaks, and has fallen asleep before while on duty but has always heard the ventilator alarms. How reasurring!!!! Of course we won't be having this person come to our home again. If there is anyone who knows an RN that might be interested in taking care of a little girl at night please let me know. I think the hardest part about Avery's care, is that we will have a stranger in the house. I know eventually we will find a nurse that we fall in love with and will become a part of our family.  I went to the hospital to find our about Avery's MRI, while Jeremy took another load over to the new house. I spoke with one of the residents about the MRI. She told me that Avery had a tethered cord as well as a fluid filled cyst that was flattening her spinal cord. The cyst is about 3 inches long. Of course I asked if she could still go home tomorrow. She couldn't give me an answer. Avery's neurosurgeon was contacted and will make the final decision tomorrow.

It's funny how I was convinced today that God new I couldn't  handle anymore, I needed a break. So the news from the MRI was going to be good and Avery would come home tomorrow. This wasn't the case, I am so tired, I feel this is all finally catching up with me.

A bit overwhelmed

Today we met with the medical equipment company at our new house. They brought us a months worth of supplies for Avery. I had no idea she would need so much stuff. After 3 hours of learning the equipment and all her supplies, Jeremy headed to school and I went to the hospital. Avery was scheduled for a full brain and spine MRI at 3:30pm today. Since Avery has been in the hospital we have noticed her losing function in her right leg as well as her trunk. One of the things the doctors will be looking for with the MRI is a tethered cord, which could be the cause of her function loss. If you want to know more about tethered cord.

http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm


 I got to the hospital at 2:30pm. By 5:30pm Avery was getting a bit fussy since her milk feeds were stopped at 10am and she was hungry. She did recieve some pedialyte at 1pm, but then nothing since. Her and I paced the floors until she fell asleep at 7:30pm, still no MRI. At 9:30pm I finally had enough and had the nurse call down to radiology. They had canceled Avery and rescheduled for tomorrow morning. Sure would have been nice to know this sooner. The MRI will be the deciding factor on whether Avery will come home on Thursday or not. Please pray that her MRI comes back negative so we can get our little girl home.

Moving!!!

                                          Avery's old room

                                     All the equipment I have to have with me anytime we go anywhere

                                                     New bathroom at the hospital in Averys room

                                                      TV, refrigerator

                                                    couch that folds out into a bed, rocking chair

                                           Avery is the first person to stay in this room

                                         The view from our room.


It's official, we have a new home. We start moving tomorrow. Our plan is to move Avery's and my things to the new house, so we can bring her home on thursday. Jeremy and the kids will move all there stuff after school gets out on the 16th. We then will get our old house ready for its new owners, yes I said new owners to move in by January 1st. God is amazing, once again he proves himself.

Day 35

Today has been super exciting. We moved into the new childrens hospital. The rooms are fantastic and the view is even better. We are on the 12th floor which is the top. We can see the scoreboard at the U of M stadium from our room. Its so cool to think Avery is the first person to be in this room. I have pictures coming.

Our 24 hour

Jeremy and I had our discharge meeting yesterday with all the docs about Avery. We now have a discharge date of December 9th. This of course will only hold true if we can be moved into our new home by then. We hope to have the keys in hand early next week. This is all so exciting. Every couple days I get a glimpse of my normal life when I'm able to go home and be mommy to my other children. For example last night I made a good dinner. Madi had her friend spend the night and Gage had his friend spend the night, we made chocolate chip cookies and played video games. I love being home. Today Jeremy and I are doing our 24 hour. This is where Avery is put in our care from 12pm today until 12pm tomorrow at the hospital of course. We will put all we have learned to the test. Avery hasn't been herself the last few days, fevers, not eating well, no smiles, sleeping a lot. Hard to know what it could be.  We just have to keep a close eye on her. Dan from physical therapy has been working with her and has noticed her losing movement in her right leg. Not sure what this means at this point. Dan is going to request Avery to see the Neurologist.

Snow Day!!!

                                                       Gage the dude!

                                                          Titan

                                              Titan and our neighbor Brynn
Today I woke up to the ground covered in snow. The kids are thrilled its the first snow day of the year. Its only 8:30am and they are already outside enjoying the weather.

Day 28

                                           Madi and her little sis

                    Madi, Gage and Titan decorated the poster board for Avery in the  background

                                             This is what she will be hooked up to while sleeping

Took a walk outside

                                     
The last two things Jeremy and I need to do before we can bring Avery home is our 12 hour and 24 hour.  This is where Avery is in our complete care for that period of time. Yesterday we did our 12 hour, which is done in Avery's hospital room. We were at the hospital from 8am-8pm. The nurses were available for questions if we had any, otherwise she was all ours. It went great. Our 24 hour is set for December 2nd. For the 24 hour they will put us in the hotel within the hospital. They will dispense all her meds and the room where we will stay will be set up like her bedroom at home.  We will be free to take her any where we feel comfortable. I'm excited for this, it will be nice not to have someone looking over your shoulder all the time. Once we have a place for Avery, we can bring her home.

Day 26

After we spent thanksgiving with Jeremy's family we took the kids to the hospital to see Avery. Of course we had to fight over who got to hold her. We decided to take our Christmas picture in the hospital, since everyone was dressed up for Thanksgiving. The hospital has an area that is full of trees and a waterfall. Its so peaceful. This is where Avery and I take our walks during the day. After about 15 shots, I think we got one where everyone is smiling. We all slept at the hotel  and came back to the hospital this morning. After our visit we dropped the kids off at home. Jeremy and I then went to see the realtor about another offer on the house. We will know on Monday if the seller agrees. I hope on Monday we have a move in date. Keep positive thoughts!

Thankful

Today and everyday we are thankful for our church family for bringing us meals, for our friends who have helped us with gas so we are able to see our little girl, the nurses who take care of Avery as if she was their own, for being humbled and reminded that our life could be much worse. Happy Thanksgiving!

Feeling a bit discouraged

We met with the seller on Saturday. The kids were so excited. They couldn't wait to see which rooms were going to be their's. The realtor talked to us about a few things and then went back and talked to the seller.  Things were not as they seemed. As soon as we got there the seller started asking for more, we agreed to everything and even signed the papers but she wasn't confident enough to sign herself. She needed another day before she could give us a final answer. Well its been a week now and the seller has backed out. I am so disappointed.We have made plans with the hospital to bring our daughter home to this house under the impretion that the seller agreed to our offer. She even gave us permission to have the medical equipment company come to the house to inspect. Now she has changed her mind. We were up front with this women from the very beginning. We expressed to her how important it was for us to move forward promptly so we could get our daughter home. She should be ashamed of herself. I'm not sure what we are going to do at this time. Please keep us in your prayers

Praise God!!!!

Jeremy called me this morning to tell me that the seller agreed to our offer!!!!!!!! We sign all the papers on Saturday. I am sooooo excited!!!! I can't believe it. Prayer works, this is proof. Heather thank you for taking this chance on our family.

Lots of training today

Jeremy and I started trach training which also included CPR with a trach. We have a check off sheet, which includes things like suctioning, trach cleaning, changing trach ties, etc. We have to do these things a number of times before we can check it off. Monday they will train us on the ventilator, how it works, what the alarms mean, etc. Avery is doing great, no more fevers. She also got her NG tube out and is now taking full feeds orally. As far as the new house goes, we submitted our offer which explained our situation, now we wait. Please pray that the seller will except our offer and we can move forward. After  our training, Jeremy stayed at the hospital so I could sleep at home tonight. I was able to suprise the boys when they got off the bus. I can't wait until my family is all under one roof. This eveining Gage my 7 year old brought me his piggy bank and said that he wants to help us get our new house. He said his family is more important than the toys that he wants. Of course that put me in tears.

Day 16

Avery was moved to the peds floor yesterday afternoon. I got to watch them switch out her trach to one that would accomodate her chunky chin. She is much happerier. I will be staying with her now until she comes home. This morning she woke with a fever, so they ordered blood work, x-ray and urine. Looking like its a urinary trach infection. Better than a lung problem. Jeremy and I will start our training tomorrow. Hope all goes well. My goal is to learn this all as quickly as possible, so I can get her home. Of course thats if we are able to get this new house.Thank you all for your prayers and support, we couldn't do it without you.

Avery back in my arms

I was finally able to hold Avery again. She is always full of smiles when we visit. She is still in the PICU and will remain there until her first Trach change which will happen on Monday or Tuesday. She will then move to the peds floor. I feel like she has grown so much in the last few weeks, she has more hair, she's more alert and more active. I have been going home everyday since she's been in the PICU so I can spend more time with Madi and the boys. Its been good to be home, I feel normal there. Once Avery is on the Peds floor I will take over her care, as well as learning how to live at home with a child and trach.

So many things to think about

Now that Avery has had her trach placed we have a lot to think about. In order for us to bring Avery home we have to have a home inspection. Our home is not equipped for the care that she is going to need. She needs a space of her own and right now she stays in our room. The basement is wet and moldy.  We will have a nurse that comes at night to watch Avery while we sleep. She will make sure that her ventilator continues to work. We had planned on building a house on our property that we bought 2 years ago. We were hoping to start the plans for that in April, but we need a house now. Today we looked at a house that would be perfect for us it even had harwood floors throughout. This would accomodate Avery if she needed a wheelchair in the future. Please pray that we are able to get this house so we can bring Avery home.

Avery's surgery went well

                                          Hanging out with dad before surgery

                                            After surgery

Avery had her surgery today and it went well. The surgery took about an hour and a half. When I went and saw her she woke up for a bit, but was still a little groggy. Before they put the trach in place they did a bronchoscopy and found that there was some bronchomalacia. This wasn't great news but it confirmed that we made the right decision about the decompression surgery. With bronchomalacia, Avery would've needed a trach with or without the decompression. The decompression surgery would have only helped the central apnea. So overall it was a great day.

The decision has been made

Jeremy and I have decided that a tracheostomy and vent is best for Avery at this time. Her surgery is scheduled for tomorrow at 3pm. She will remain in the hospital for 4-5 weeks after surgery. This is how long it takes for us to be trained and to have our house inspected and prepared for her arrival. I know everyone is thinking of us. Please continue to pray for a safe surgery and fast recovery..

                                                              These cheeks are heavy

                                                        We took a walk outside today

                                              This was taken at the opening of the new hospital.
                                               The boys are making cards for Avery

Day 9

Waiting for doctors to make their rounds. To see whats next. This video was taken yesterday. Her little smile is what reassures us that everything will be okay!

Making difficult decisions

We finally had our meeting. Neurology, pulmonology, and the team. Jeremy and I have some big decisions to make. We know that Avery has obstructive and central apnea. Oxygen helps with the obstructive apnea but not the central apnea. Her brain is telling her not to breath, so at night when she sleeps she stops breathing. The doctors are telling us she needs a tracheostomy and a vent for at night. There is decompression surgery(brain surgery) that can be done but its not likely to work. In order to have this surgery they need to keep Avery in the hospital for a few more weeks so she can heal from the virus that has played havoc on her lungs. Even then she may not be in good enough shape for the surgery. The surgery is very risky. Our other option is to have them put in a tracheostomy until she is bigger and can tolerate the surgery. If she has a trach put in she will remain at the hospital for 5 weeks following surgery. This is so Jeremy and I can be trained on how to care for her at home with a trach and vent. Our home will also have to pass a home inspection to accomadate the hospital equipment.

Day 8

http://www.annarbor.com/health/its-not-a-scary-place-to-go-families-tour-the-new-cs-mott-childrens-hospital/



Well we are still in limbo, waiting to meet with Neurology. Avery is doing so good. Her wheezing is almost completely gone. Yesterday the University of Michigan had there open house for the New Hospital. I took the kids and got a tour. They had a treasure hunt for the kids and on each floor the kids would get a stamp on there map, at the end they got a treasure. It was a lot of fun. I had a reporter interview me about the new hospital. Not expecting for anything to come of it. I found out this morning its in the paper. the link is above if you want to check it out.

Day 5

No decision has been made yet. Hopefully Monday we will know something. Jeremy took over this evening so I could go home and get some rest. The boys and I watched a family movie and ate popcorn. Tomorrow we are taking the kids to a hotel 5 miles from the hospital so we will all be close for the weekend. Can't wait to sleep in my bed tonight.

Upper GI Test looks good

                                                My bed

                                               Averys Bed

Happy Girl!

                                   
Avery had the upper GI test done and everything looks normal. We are still waiting for the doctors to make their rounds this morning.