Long overdue update

In some ways, the fact that this blog doesn't get updated very often is a very good thing. It was started initially during the days when we weren't sure if Hope would be with us the next day. That was a time of sometimes hourly tests and procedures and life-threatening surgeries and illnesses. We counted the time by the hours not days. We counted her weight by grams not pounds. We fed her only a few milliliters not ounces. It is so good to be in a much calmer place than those days. I know I am certainly thankful for it.

That being said, it has been a long time since the last update. Truthfully, not a lot of big things have happened since then.

We met with her ENT to discuss the options for getting the trach out. Basically, all of them involve surgery. The options include (in no particular order):

1. Using absorbable plates to "stabilize" her trachea. These plates are normally used in kids with facial bone fractures. The plates would be absorbed (much like absorbable stitches are) with the hopes that scar tissue would form around them permanently strengthening her trachea.
2. Using cartilage from Hope's ribs to "stabilize" her trachea. This is a procedure that is often done but is rather invasive. There would be the incision to her airway and also an incision to her abdomen to retrieve the cartilage.
3. Some combination of 1 & 2 - using both absorbable plates and rib cartilage.
4. Removing the "floppy" portion of her airway and reattaching the ends (from where the floppy portion was removed) together.
5. Leaving the trach in. At this point we assume that Hope has outgrown all the floppiness that she can outgrow and this floppiness comes from actually having the trach so it is unlikely that time would solve this issue.

We have preferences among this list but our biggest issue comes from the fact that her doctor/surgeon has never actually done these procedures. He's used the processes in other surgeries (facial surgeries) but never on an airway. Our plan as of right now is to get a second opinion from Cincinnati Children's Hospital as they appear to be "THE" hospital to go to when it comes to airway reconstruction.

Recently, Hope has also been seen by an orthotist and now has some AFO wraps (braces) for her legs/ankles. As you can tell, she loves them..... ok, not really.


At least she was able to get them in pink with pretty butterflies on them. She doesn't have to wear them all of the time, which is good because at this point her tolerance of them is about 6 minutes. After that if she isn't good and distracted she has a major meltdown. The reason for her wearing these (and the reason she hates them) is because of her Cerebral Palsy she has a tendency to point her toes and keep them pointed. At this point she has great range of motion but if she were to keep her toes pointed all of the time the muscles and tendons in the back of her leg could shorten and that would make it extremely difficult for her to NOT point her toes.
After we picked up the braces from the doctor we headed straight to the shoe store and got Hope some spiffy new shoes that fit over her braces. In my opinion with the shoes on you can't really even tell that she is wearing the braces. She wholeheartedly disagrees with me. She can tell perfectly well :)

On a happier note for Hope, the beautiful warm weather (it was almost 80 here yesterday!) means that she gets to go outside and play more. Yesterday we put her tree swing back up and she played in her swing until she fell asleep. All that sun and fresh air wear a kid out. She is napping right now but I think the plan is to go for a wagon ride once she wakes up! :)

Not Ready Yet

Well, this week hasn't gone exactly according to plan. Late last month Hope's trip to Ann Arbor to get her trach out was rescheduled from January 12th to January 9th so bright (well actually really dark) and early on Monday morning we (Hope, Grandma Robinson and Mommy) packed up the car and headed to Ann Arbor. Hope was scheduled to check-in to pre-op at 9am. They took her back into pre-op around 9:45 and then back to the operating room around 10:15. By 11:15 she was in recovery and we met with her ENT dr. He said that he removed a piece of scar tissue from her airway and after he did that her airway looked perfect. He was ready to proceed as planned - cap her trach overnight, observe her and if she did well then on Tuesday morning we would pull her trach out.

A few minutes later we were able to join Hope in the recovery room. She was pretty groggy and was slowly coming out of the anesthesia. The recovery room nurses worked on getting her ready to go to her room in the ICU, but when they called up to the ICU they said they didn't have a room available at the time. They weren't sure when they would have one. Since it was likely going to be a while the nurses got a dvd player and some movies for Hope to watch.

Hope watching a dvd

Since the bronch looked so good the next step was to cap her trach. After a couple of hours of waiting in the recovery area her doctor came by and decided to cap her trach before we got to a room (since it was taking so long). It didn't go well. Once they capped the trach Hope started struggling to breath. She has had her capped for many months at home now and her doctor thought she might have been struggling because her airway was swollen and irritated from the bronch. They took her trach out and looked at her airway with a scope to see if a clot had formed from taking the scar tissue out but the airway looked good. They decided to give her some time and try the capping again later.

Well, 10 hours after arriving in recovery, yes, 10 HOURS - we finally had a room for Hope. Because she was being observed in the ICU we were not allowed to be with her while they settled her in the room, we had to wait in the waiting room. About 10 minutes later we were allowed to go into her room and when we arrived her nurse told us they had tried to cap her and that "she had failed". We were livid! We were not told they were going to try to cap her at that point, we were not allowed to be present and the nurse and respiratory therapist who did the capping did not know about any of Hope's issues (she struggles sometimes with the capping if her head is not positioned well). After getting very irate with the nurse the doctor was called and we tried capping again. This time Hope did well with it and continued to do well the rest of the night.

In the morning we talked to the doctor and he was comfortable proceeding with the trach removal. A short while later several doctors surrounded Hope's bed and removed her trach (this is a non surgical procedure where the trach tube is simply unhooked and removed). Hope immediately began to struggle and panic so the trach was put back in. We believe that this was partly because Hope was not ready to have it out and partly because she felt frightened and agitated in the situation.

In any case, the doctor is not comfortable with the trach being out yet. He thinks that while her airway looks perfect perhaps the exterior structure of her trachea is weak. We are meeting with him on January 27th to discuss what the next step will be. He says that ultimately getting the trach out is still the plan. We will keep everyone posted.

Hope and Daddy

Let's play a game

I think most people have heard of the game 5-spot, or simply "Spot the differences" where you look at two pictures and pick out five things that are different between the two. Let's play a game of that with these two pictures....

Okay let's see, what's different? What's that? Why yes, THE VENTILATOR IS GONE!! (Ok, well it's actually in the closet not GONE gone) and not just for the picture! Hope has successfully weaned off of the ventilator! She hasn't been on it at all for over a week now. She's done absolutely great with the weaning process and doesn't need it at all any more.

The next big step will be getting the trach out (likely this fall). Our next appointment with the pulmonologist is at the beginning of September, and we see her ENT doc in August so hopefully they will both give the go-ahead for getting the trach out!

Oh, and for those of you who really wanted to play the game, there really are 5 (ish) differences between the pictures :)

Daily Dose: Tuesday, September 22

Hope has been doing well!! She had a very busy day today with lots of appointments but everyone survived the busy day.

Hope saw her ear nose and throat doctor, he was happy with how everything was going and said she doesn't need to come back for 4 months!

Hope also saw her nephrologist (kidney doctor). Last time Hope's bloodwork wasn't quite what they wanted to see. It turns out that her baseline indicates some sort of chronic kidney disease. She is going to have more blood drawn in a week or two to see if things have improved now that Hope has made it through her antibiotic course for the last UTI she had.

And the big news for the day..... Hope got her hearing aids today. They will be started out on the lowest setting, then depending on how she responds they will be "cranked up" every 2-3 weeks. Hopefully in the next few days we can get a pic of Hope with those hearing aids.

Until next time....

Daily Dose: Monday, August 17

Hope had a good weekend and a good start to this week. Her ENT (ear nose and throat) doctor took a look at her ears today and didn't see anything obviously wrong. Before Hope goes home the ENT plans to put her under sedation and check to see if there is any fluid behind her ear drums. If there is a significant amount of fluid then likely Hope will get tubes in her ears. During this process, while she is sedated, they will run another diagnostic hearing test.

The countdown continues...... only 8 DAYS until Hope comes home!!!!

As you can see from the pictures above, Hope's room is finally all ready for her. It is pink (because apparently that's what little girls like) and has lots of ladybugs. Hope is very excited to come home and play with her ladybugs and her new toys and everything else!!!