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.

Hospital Day 3

Avery's GI test was rescheduled for 2pm. I hate when they do this. We are still waiting to hear what Neuro and pulmonary have decided about the decompression surgery. I hope we get an answer before the weekend so we can get the ball rolling.

Update

Jeremy came in this morning to take over with Avery. I went grocery shopping, to the bank, did some laundry and took a nap. I got back to the hospital about 7:30pm. The doctor came in right after I got there and said they are doing an upper GI test tomorrow morning at 8am. She also said that our meeing with the team of doctors wasn't going to happen. Its to hard to get them all in one place. We have explained to Neurology how we feel about the surgeries as well as the pulmonologist. Now we wait for them to talk and see what they agree upon.

Just talked to Neurology

Avery's neurologist just came in and we spoke. He is not against doing the decompression surgery, but wants
them to rule out everything else. They are talking about a tracheostomy and ventilator. I expressed to him that before that happens the decompression surgery should be done to see if it helps. I know its a major surgery but so is cutting a hole in Avery's throat. Avery is still wheezing quite a bit, breathing treatments are not helping. I'm not sure what they are going to do at this point.

X-rays

They have taken x-rays of Averys chest and tummy. Her chest looks good, but her tummy has a lot of air in it. She is also a little constipated. With her belly being so bloated its causing her breathing to be worse. I gave her an enema and that helped. They are talking about moving her to the pediatric intensive care unit, so she will be monitored more. We will see.

Still waiting!

I have been sitting here all day waiting for answers. Avery is still struggling to breath. They are talking about a brochoscopy and decompression surgery. Nothing has been set in stone yet. The neurologist wants to rule out everything first, before decompression surgery is considered. They are thinking she may have tracheomalacia, whichis softening of the trachea tissue. To have this test done Avery would have to be sedated, which is why they are talking about doing the decompression surgery at the same time. We will see.
I will know more tomorrow.

Avery is admitted into the hospital

Last week Jeremy spent the week in the hospital, Iguess it was Avery's turn. Yesterday Avery had a follow up appt with her pediatrician. They wanted to see how her breathing was doing since she has been wheezing so bad. While we were there they gave her a breathing treatment and her wheezing was no better. She  has actually been on albuterol and atrovent for 2 weeks now and it doesn't touch the wheezing or make it easier for her to breath. They hooked her up to a pulsox, to check her O2 levels. When her wheezing didn't get any better with the breathing treatment and her O2 levels were pretty much staying in the 80's they called the ambulance to take us to the hospital. When we got to the ER they gave her another breathing treatment, which didn't help either. After 4 breathing treatments and oral steroids her breathing was finallyquiet, no more wheeze. It was so nice not to hear her not struggle to breath anymore. Her O2 levels are still bouncing all over the place. They have put her on 1 1/2 liters of oxygen. This of course made her extremely mad because she had to wear the nasal canula. She is a pro at wiggling her head just enough so it comes out of her nose, then of course the moniters go off since she isn't breathing in the oxygen.