Any guesses??

We got the bill for Jack's Life flight today. We've been witing a long time to see how much a life flight costs. We were blown away with the figure! Any guesses on how much a 74 mile life flight costs??? $20,000!!!!!!!!!!!! Some people don't even make that in a year! That breaks down to $551 a minute! CRAZY!! We are so very fortunate to have a wonderful insurance plan that pays for it 100%. Let's just hope we don't have to have any more of those!

Are you ready for this??

Ok, We've been holding off on posting because we've been waiting for some special pictures to go along with a post but this one can't wait. We waited 3 days to post this special news because the last time we posted right away the behavior did not continue. Well now we have seen this "behavior" for 3 days in a row! Jack is now consistantly walking!!!!! It started on the 20th. We were shocked to see him let go of the tv stand and walk over to us! We didnt freak out on the inside but you better believe our insides were doing kartwheels. We felt that if we made a big deal it would hinder the progress and we were right. He acted like he had been doing it his whole life and it is no big deal. He continued all day and even carried his container of play food all the way across the room! We are just completely shocked! Tonight he walked all the way across the house, opened the back door himself, and stepped right out onto the back deck to get his daddy! It was incredible!!!! Absolutely incredible!!! We are so so happy. It has been a long 23 months but all the therapy and working with him has been worth it! We truly believe that the walker has helped him to gain his balance and confidence. He will still need the walker in new and unfamiliar places because it helps him with his depth perception and keeps him safe but now we know he can do it on his own!!! Enjoy the video!!!

I finally have time to post!

Now that Jack is doing well and we have grandma and grandpa to run around with Jack, Mommy finally has a minute to update the blog! I didn't bring my computer to Texas with me so I'll have to update about our wonderful trip to Illinois when we get home. I can, however, update you on the crazy antics of Jack in Texas! For example, Philip's wonderful aunt Tracy and uncle Neal drove up to spend the evening with us. We had a wonderful time visiting and had a wonderful dinner (thanks, mom!!). Towards the end, Jack went out the front door and I took the walker with us and put it in the cul-de-sac. Jack didn't want to be out there he wanted to be on the sidewalk so he took his walker right up to the curb, lifted the front wheels up and took a step up onto the sidewalk!! I ran to get the camera to catch it on video in case he did it again. He did!! He also tried to go down off the curb but needed a little help to do it. He is amazing!!

We've been up to a lot of other things too. We went downtown to an area called Harwin. They have a lot off little shops that sell knock off stuff. They have tons of little jewelry store that are just overwhelming! I was looking for some jewelry to go with my dress for the wedding we're going to on Saturday. I found a beautiful set! I also got a pendant, a pair of earrings, and a ring. We had a lot of fun. We've also visited with Jack's Aunt Laura, Aunt Tina (my best friends), and Miss Sandra. We had a wonderful visit and good Lemon cookies (again, thanks mom!). THe first day we were here I went to get my hair cut. I knew I wanted to get a little cut off but I wasn't sure how much. I told her about where I wanted it and she made the first cut. She paused, looked at the lock of hair and said, "oh, that's too bad". I knew exactly what she meant and I asked, "how much more". She said, "2 inches". I told her to just do it. I was able to donate my hair to Locks of Love! Plus, I got a really cute hairstyle!

Tomorrow we are going to go and see my brother's new house and then go and see the fireworks out on the lake. Then Saturday we are up to Dallas to see my other brother's new house and to go to the wedding! We've got a lot of fun stuff coming up!!

A rough time

Suprisingly, we are now home with Jack. It all started on Wednesday. He fell asleep in my lap and had a very hard time getting a full breath in. Luckily, our nurse was with us and she went with us to take Jack to the doctor. By the time we got there he was ok. His sats were fine and he was breathing ok. The dr. suggested more xoponex. That night I stayed up to listen to him. He did have a hard time. The next morning he was still having trouble so I took him into the Dr. and they called an ambulance to take him directly to the hospital. Once there they set him up with oxygen, xoponex, and blood work. He was working so hard to breathe that he couldn't even open his eyes. He layed there limp in our arms not being able to breathe. this hospital is awful. There is never a doctor on the floor, just nurses and the dr is on call. We did not see a doctor once even after repeatedly demanding. The dr. was in 3 back to back c-sections and couldn't come ot assess the situation! I started to throw a HUGE fit and they called a different doctor and I could only speak with her on the phone. I asked for Jack to br transferred to Rochester because we didn't feel comfortable with his treatment there and she denied the request. She told us the Dr. on call would have to make that determination. Once he finally came in Jack was doing worse than ever. His o2 sats were fine with the oxygen but his breathing had slowed and he was retracting horribly. I was terrified. I thought I was going to lose him. I started to take deep breaths in his hair to remember how he smelled. To say I was terrified was putting it lightly. The doctor called rochester for a life-flight but we had to wait for them to assemble their team and then fly to us. They told us that once the team was there they'd intubate and take him to the PICU. Once the transport team arrived you could see the looks on their faces. They were upset they hadn't been called sooner. One guy did an arterial blood gas and checked his IV to give a sedative and the other gave an inhaled medication called Racemic epinepherine (sp?). He did two treatments back to back. within 2 minutes Jack was opening his eyes, not retracting as much, and wanting to read a book! The respiratory therapist at the hospital quietly mentioned to us that the last shifts therapist had been trying to get the doctor to order that same medication all day and he refused. They took him without intubating but couldn't make any promises about what would happen during the flight. We were not allowed to ride along with him. It was so incredibly hard! They also had some severe weather to deal with and didn't know how the flight was going to go. We had to get in the car and drive 2 hours to Rochester. It was 11:30 p.m. by the time they took him and so we didn't get to the hospital until well after 1 am. To our suprise Jack was not intubated when we saw him! He had high flow o2 and they were doing breathing treatments every 30 minutes. There were lots of different drugs and the combination of them worked. He was still retracting and had stridor but it was not nearly as bad as it was before and they were able to control it with the Racemic. They weren't able to tell us what was wrong. They said it was probabl some sort of virus and the best they could say is acute respiratory distress and reactive airway disease. He progressively got better and by yesterday he was completely restless. They had him hooked up to all the monitors and he had an IV in his foot so he couldn't get down to try to walk. they finally started him back on his food at full feeds and he tolerated it so we were able to d/c iv fluids and they removed the foot board so he could walk. He felt so good to get up! He ran around the PICU unit! During rounds that morning they decided that if we had lived in Rochester they'd let us go home but since we had a long drive they wanted to keep him another day. When we found out that we were like "what does a 2 hour drive have anything to do with going home???" they said they wanted him to be spaced out on the xoponex a little more. Ummmm...he's getting xoponex every 4 hours and it only takes 2 hours to get home! Plus, we had our portable neb in the car! After we explained the logic to the doc he agreed to let us go home. Jack had a great night! It has been a long long time since he had breathed that quietly at night. Today he was running around outside and going down his slide. He's back to his normal no nap self! We are so incredibly thankful for the way everything turned out. It could have been so much worse!! Jack has incredible resilliance. He's just a true miracle!

Thank you all for your thoughts and prayers. It was a scary time in our lives. So many of you have been there and know what it is like. Thanks for all the support!!!!!!!!!

Jack's Walker

Jack's PT was finally able to find a walker Jack's size. The shopping cart was working well but it wasn't as stable as it should have been. Jack wasn't too interested in it at first but yesterday he really took to it! We started to put him in it every time he took our hand to walk. It clicked yesterday that he can actually go where he wants and he doesn't have to try to convince mommy and daddy to follow him. We took the walker last night the The Boatyard Grill to celebrate our anniversary and Jack gave us the best present ever! He walked around on the deck of the restraunt in the walker! It wasn't busy but the people that were there seemend to enjoy how excited he was about it. We also learned a valuable lesson. We have to take away Monkey in order for him to hold on with both hands. He seemed to be ok with it. Later that evening we took the walker to Wegmans and let him go. He walked around the store for half an hour on his own! He even followed us as we shopped! It was so cute! We are so proud of him!

Today I took him outside and he walked in the walker on the driveway! I couldn't believe that he actually did it! We also took it to the library and the park today. He loves his new found independence. He acts like he's been using the walker for months. As soon as he figured it out he took right to it and went off on his own! Today at the park I was talking with friends while Jack was walking and he started going down the path paying no attention to how far he was getting from me! He just kept going and as I came up behind him he did a little jump step and tried to get away! It was really really cute!!

This is the best thing we could have done for him. We have seen an amazing change in his personality. I am so happy he feels so independent!

Sleepy Boy

Last night Jack was a very tired boy! He had woken up at 4:45 and went the whole day without a nap. By 5:30 he was pretty much gone. Philip and I, the good parents that we are (wink wink), decided to video tape him. He wanted to watch Moose so bad but he was just too tired. It was super cute! Check out the video!!

Surgery Update

So here's what happened...Jack coughed all night long. In addition he woke up screaming at 2 am. I immediately picked him up and his little body was shaking. He calmed down for a minute or two but then started this involuntary jerking and screaming. We weren't sure if it was pain or a seizure or what. It happened a few more times and then he fell asleep.

When we got to the hospital this morning there were green rivers of snot running down his face. No matter how often we wiped the rivers kept flowing. When we got up to the reception desk on the surgery floor the nurses took one look at him and went to get the anesthesiologist. He came in and said he was uncomfortable doing the surgery in his condition but he wanted to speak with the surgeon before they sent us home. The surgeon wanted to see Jack before we left but he was in surgery so we were going to have to wait an hour. They had a blues clues movie on for Jack so we said OK. He came in about 40 minutes later and agreed with the anesthesiologist and declared the surgery cancelled. He wanted to talk to our pediatrician to change his antibiotic. So while he was off doing that the nurse gave us some pedialyte to give to Jack so we did a bolus. About 30 min. later the anesthesiologist (I haven't mentioned that he didn't speak english andwe couldn't understand a word he said) came in and told us that they were still going to do surgery but a different one. He wasn't able to give us any details he just wanted us to give consent. We of course refused. We weren't going to give consent to an unknown surgery when a few hours earlier he was very uncomfortable giving him anesthesia. We wanted to find out what the procedure was. I went out and paged our pediatrician directly because I wanted to know what they talked about. Our pediatrician wanted him to have an ear fluid culture which needed to be done under anesthesia. He believes that even though the infection is in his sinuses the bacteria would show up in the ear fluid. When we finally talked to the ENT he said that if they were going to put him under and make a hole in his ear drum to collect the fluid they might as well slip a tube in there. We started to talk about his secretion issue and I wanted to know what hadchanged in the last few hours to make them think Jack would be fine. A few hours before they were adamant that it was not safe to put him under. Why the change? Our ENT said "I'm going to step out of my doctor role for a second. Do you want my personal opinion?" Of course, I said yes. I completely trust him. He said "If this were my child and I was in your shoes I would not do the procedure". That was enough for me. He said that right now we are managing Jack's secretions at home and it was clearly not affecting his lungs. The ENT said that if we did the procedure today we would have a 20% chance that his respiratory status would be compromised. 20% is a lot! So we packed up Jack and brought him home.

I hate having that feeling of knowing that you have to make a decision and neither option is a good one. Luckily in this situation we had the option to walk away. I know Lesley was just talking about this with Ameile's trach. It is so incredibly stressful. Before we talked to the ENT for the last time the anesthesiologist was sort of pressuring a decision. Philip and I got into this huge fight right there in the room because I took something he said the wrong way. When you have such an intense stress you snap easily. We kissed and made up. :-)

One thing that did really bother me today was that the very first time the ENT came to see us he said his patient was still asleep on the table. The same thing happened with Jack's last surgery. The surgeon came out of the OR to discharge us when we had become friends with the little boy who he was supposed to be operating on. We saw them take him to the OR and at that time he should have been in the middle of the procedure. I can't believe a doctor can leave the OR like that! I know there are other people there but I never want to theink about the surgeon leaving Jack on that table. I think back to all his other surgeries and wonder how many times the surgeon left him. It is so hard to think about!Anyway, Jack is now home and doing great. They are going to try to reschedule the surgery to be in 2 weeks. We'll see what happens.