Hannah's appt with the medically complex team

Hannah was referred to the medially complex team (diagnostic referral drs)  I told him that nephrology said they were surprised we hadn't been referred there before  now, dr M said I am surpised too!  He went through a lot of her medical history especially in the last year.  He was surprised that she hadn't had a 24 EEG...her nuero says we know she is having seizures but dr M said he wants to know if she is having continuous szs...I agree with him, I already know she is having more szs than we realize.  I told him about Hannah's leg swelling (just her right one) and he thinks she has lymphedema.  He changed her feedings so she is getting boluses at night too instead of continuous.  We haven't started that yet, he wants us to check her blood sugar in the mornings and we don't have a glucometer yet.  He also agreed that the mitrofanoff surgery is the best thing for her.  He was looking at her bloodwork and said it doesn't look like she has von willebrands..she does have some kind of clotting disorder so he was going to talk to hematology before out appt next week with them.
  We have an appt with orthopedics wed and next week an appt with hematology for her bleeding disorder and surgery.  then after Christmas we will have pre op. She is being admitted on Jan 9 for bowel prep and surgery is Jan 11.  Urology said they start feeding them 2 days after surgery and she has to have a bm to come home.  I figure about 1 week in the hospital if all goes well and she doesn't throw any curve balls at us :)
we are getting excite about Christmas, I think I finished my shopping today and next week, our middle daughter Jenn and her family are coming..I can't wait to get all my grandbabies together again.
  Chuck, Hannah and I want to wish you all a very merry Christmas!

This shows the swelling in her right leg

A Tribute to Special Needs Moms

Hannah's surgery

Talked to urology today and Hannah's surgery is going to be on jan 11, she will be admitted on jan 9th for bowel prep (thankfully she will be in the hospital and I don't have to do that )   She asked if I wanted the first available but i told her she has an appt with the medically complex team on dec 8 and the 21st sees hematology...glad we won't spend another Christmas in the hospital.

Urology Appt and Bronch Results

It was a long day yesterday.  Chuck went with us so we had planned on leaving at 8:00...a few minutes before he ran to get gas in the van.  Since the windows had a lot of dew on them, her rolled them down so he could see.  unfortunately the passenger window wouldn't got back up. He had to take the whole window apart and get it back up so we could go.  He found out the motor had gone out in it, so he got the window almost all the way up.  He got the part later so he can fix it...so that made us 1/2 hour late leaving but since he was driving and could drop us off. we go there on time.
  The testing for urology was first.  While the nurse was setting up and waiting for the dr we talked about Hannah's problems and I asked her about the Mitrofanoff and she said that she would definately qualify.  She brought it up to the dr that did the testing and again the dr that we saw in clinic.  He is going to go ahead and schedule it, it should be a simple procedure unless they get in there and she doesn't have an appendix.  Then they will have to do more.  This would make things nice for me cathing her but really good for Hannah!  He asked me what drs does she see?  I just kind of looked at him and he started asking different drs if we see, then he asked if we are followed by the medically complex team?  I told him no but the funny thing was it was listed on my paper to ask the drs why we aren't followed by them.  He got us an appt on Dec 8 with Dr Malatack.  He wants us to see him before we have the surgery.
  After lunch we saw Dr Chidekel, our fav dr to do the bronch.  Brian, one of the resp therapists came over to us in the waiting room and started chatting, he said long time no see, I laughed and said that's a good thing  :)  He was there to help with the bronch so they took us back pretty quick.  They did see a lot of Tracheomalacia in her airway when she coughs.  That is why she is on the vent but I haven't been using it as much during the day as I used to.  She does have room in her airway to go up a little bit in size of her trach but not enough to go up another size so we have to do another custom trach.  She is in a size 5.5 which is the largest pediatric trach, the length of that is 52cm and an adult 6.0 is 70cm so they are ordering in between, a custom 60cm. She already gets a custom trach because she has a cuffed trach and thebivona flex.tend doesn't come with a cuff.
  We had a pretty good day, chuck took his work laptop and got some work done while we were there.  We met my mom and took her out to dinner so that was nice.

Hannah long overdue update :)

Hannah today in her sparkly outfit today

  we have had a pretty good summer, chuck and I got to go on a vacation starting Labor Day night, we went to Williamsburg til friday and then went to see our middle daughter Jenn, her husband Bob and our beautiful grandson Jonas til Sunday...Can't believe Jonas will be a year old on Nov 5!  He is growing so fast and doing really well..we really miss them.
  Hannah has had a few colds and  fevers off and on for a while, nothing major though.    Her bloodwork has been doing pretty good.
  I have to straight cath Hannah's urine every 4 hours during the day and overnight the nurses but in a cathter, tape it to her leg and let the urine run into a diaper.  She cringes almost every time we cath her and especially when we take the catheter out...they think she could be having bladder spasms..we get a lot of urine everytime and it gets to be a pain every 4 hours especially trying to find someplace to cath her in public.  We finally are going to do some testing from urology this tues (10/25) and see a urologist after, not our regular one, he isn't available that day.  Hopefully we can get some anwers.  I have been praying that they bring up having a mitrofanoff done, if they don't I am...something has to be done to make it easier.
  She is also going to see the pulmonologist and have a bronch done it clinic...her cough sounds like her tracheomalacia is worse.  He is hoping he can upsize her trach and see if that helps.  The only problem is I am not sure if we can get a custom bivona flex tend with a foam cuff in a size 6.0.  I haven't been using her vent a lot during the day so I am wondering if that's why.
  That is going to be long day so chuck took the day off since it might be dark going home.
  Pray for us for answers on tuesday.  I will try to remember to update when we get home.  Thanks for the continuing prayers.

pulmonolgy appt

Friday Hannah had a pulmonology appt.  For a while now she has had this weird cough that sounds like she is coughing her trach out.  And it gets hard to suction her.  I had suspected for a while that her Tracheomalacia had either come back or just gotten worse.  A little history,  Hannah aspirated right after she was born.  That resulted in a NICU stay of three weeks and her first helicopter ride.  that was the beginning of many aspiration pneumonias.  When she was 3 1/2yo she got her trach.  The next year we changed hospitals to AI duPont in Wilmington.  We were still in the hospital all the time for aspirations no matter what we did. We almost lost her several times.  Finally the pulmonologist (that we didn't like) suggested having a laryngotraceal separation surgery done.  It was a scary decision and I got in touch with our old ENT who had left U of MD and we trusted.  He said that he had even suggested having that done after she got her trach.  the next time she was admitted for an aspriration we had another pulmo (Dr C) that we had seen a lot...he gave me some good advice and we decided to do the surgery.  After that she never had another pneumonia!  While there a 3rd pulmo listened to her and asked if she had tracheomalacia since it sounded like that to her.  the next time we saw our pulmo I mentioned it and she said that no she DID NOT have it.  She did  a Bronchoscopy on Hannah.  When she came out she said she had very severe tracheomalacia!  That is when she put her on CPAP.  She had no bedside manner at all and I just didn't like her attitude.  We saw  Dr C again and I asked him if he would take Hannah as a patient and explained what had happened. He was more than happy to take her as a patient.  He is now one of our fav drs!  He put her on CPAP through the vent and I kept her on it most of the time.   Earlier this year I  decided since she was doing so good and her bronch looked good to not use the CPAP as much during the day.  Now, it looks like the tracheomalcia is getting worse so he wants too a bronch on her and see if we can put a bigger trach in.  He did stop a couple of her neb treatments, since her lungs stay clear most of the time.  But is that because she gets so many neb treatments ?  that's the question  LOL
  we also saw nephrology  and he did reduce her ferrous sulfate a little ( I am tired of that making her bms black and sticky) 
  Hannah keeps getting  splotchy spots and sometimes hives on her belly and groin area, it seems to be getting worse so I am going to make an appt with Allergy.  The nephrologist was concerned about that and we went over her meds again and still can't figure it out.  Leave it to Hannah to make everything hard to figure out :)   I have a pic on my cell but for some reason can't get it on here.

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