Archives for June 2010

Okay, so we actually got discharged yesterday, but it has been nonstop crazy here!

I will elaborate more later, but we are figuring things out here.  Lots of follow up appointments to be made.  Lots of supplies to be organized.  Thank GOODNESS for home nursing and our 12 hours a day for the next week (unknown what we get after that) because Hannah can only either be held or lie on the floor and have to be watched. 

I’m so glad to be home, but wow, I feel like this is a whole new world now with all this medical equipment and living by a clock for medications and things that have to be done!  My mind is racing a thousand miles and hour, and even trying to write a coherent blog post is difficult LOL.

But, after 44 days in the hospital, Hannah is finally home!!!!

Now that we have been here for over 24 hours, we have noticed a huge change in Hannah’s personality.  She is just full of life now.  She smiles a lot at us, she cries when the nurses come in (like she used to cry when people she didn’t know well came close to her), and she actually sat and watched the entire 22+ minutes of Mickey Mouse Clubhouse — twice!

They brought down her pentobarb yesterday to the unit of 4 (not sure of the dosage, but we started the weaning process at 10).  She still has bouts of being miserable because of the withdrawals, but she gets quite a bit of benefit from Tylenol.   We are going to go down 1 unit every day of pentobarb until weaned off that.   Then I believe we start the Ativan wean and finally the nighttime chloral hydrate dose (which helps get her to sleep at night).

We stumbled upon a wonderful change in that Hannah has been dealing with a lot of gassy issues since we started feeding her via Gtube and even, to a lesser degree, before her hospitalization.   It got to the point that we had to vent her tummy with her Gtube after every feeding just to relieve the pressure (Mylicon only helped a bit).

So when we got to Vegas, they did not carry the formula that we had been using (Compleat Pediatric).  Instead, they started her on Vital Jr. nutrition, their Gtube formula (nonflavored).  Her gas has disappeared!!!  We have tried venting her a few times, and there is hardly a bubble to come out!  We know now that it was the previous formula that made her really gassy (the same one we used in her bottles before all this started).   Fortunately, we only have a small number of cans left here (that we will keep as an emergency), but I think this “stumbled upon” change has had a huge effect on her comfort level!

Hannah’s chorea movements are still improving.  She finally is no longer pulling out her hair.  Up until yesterday, her movements were such that her arms would flail to her hair, and she would grab on to it (because she likes to try and grab hold of things, especially our fingers).  But because she did not have control of her grasp reflex, she could not let go of her hair, so she would end up pulling out little clumps of hair when her movements were really bad.  Yesterday, I noticed when her hand went into her hair, she grabbed it, but she was able to let go before pulling it out.

So the only areas of concern we have to watch for are the withdrawal symptoms, which we can better control at home by keeping her busy by the kids and our extended family, her tachycardia (heart rate averages 150 to 160 when awake and napping, but drops down to about 110 when deep sleeping) related to her withdrawal and high metabolism, and getting her going on PT and OT to help her regain the strength and skills she has lost (which will be set up for home by Case Management).

The amazing news is that they are talking about discharging her tomorrow or Tuesday at the latest (depending if everything can be organized in time for Monday)!   Everyone here feels that she will recovery more quickly being at home in a normal environment that being in a hospital bed, especially since she can be closely monitored with Home Health nurses and many followup visits to various doctors.  So, orders were being prepared all day today for medications, Home Health nursing, multiple specialist and pediatrician visits, and we will be working closely with the case management specialist on getting Hannah all the equipment we need to bring her home.

Hopefully, hopefully, hopefully, we can bring our baby home!!

We are in Vegas, baby!!  When the TCH transport crew came to pick us up at 7:30 am, I had the biggest grin on my face!   I was so excited to see them that I think I was talking much faster than normal and could not stop smiling.  They loaded Hannah up on the stretcher, grabbed our suitcase and bags, and we were off!

After a quick 30 minute ambulance ride to the airport, I saw the Cessna Kangaroo Crew jet.  It was awesome!  If I could find my camera adapter, I would upload the pics, but those will have to wait.  I will admit, it was pretty cool flying in a personal jet to Vegas.  The nurse and the respiratory therapist on board were fantastic and very engaging with Hannah.  She needed a bit more suctioning than usual, and they ended up giving her just a bit of oxygen support because the air pressure changes brought her O2 sats to where they hovered in the low 90s. 

I saw the most incredible view of the Grand Canyon as well.  It was so much more massive than I had ever realized!

Once we touched down in Vegas, we were met by a local EMT ambulance who drove us to Sunrise Children’s Hospital.  The “rule” is that they have to transfer ICU to ICU, so since Sunrise did not have a PCU step down unit, we were back in the PICU.   We got settled in fairly quickly!  

The rules were different than at TCH so that Ethan and Abigail could actually come into the PICU and spend time with us in Hannah’s room.  I was thrilled because they had not seen Hannah in almost 6 weeks!   We also got to put Hannah in her regular clothes instead of naked/diaper or hospital gown. 

As soon as Hannah saw Ethan (he ran to her bedside), she lit up like I have not seen since she was hospitalized!  He was making her laugh, making her want to move, and just so happy to see him!   When she saw Abby, she even tried rolling over on her side towards her!    It was beautiful, beautiful to see her not only recognize her brother and sister, but obviously she missed them too!

I also could not stop hugging Ethan and Abigail.  I had not seen them in almost a month!  Abby was attached to me like crazy, but I did not mind one bit. 

We met with the ICU attending, and he felt there was no reason to keep her in the ICU because she was doing “much better than he was told.”  His logic was that most of weaning can be down as a closely-monitored outpatient, because she would likely recover better being at home than sitting in a hospital bed all day.  At first I was very nervous about this because I was told by TCH that it could be a couple of weeks in this hospital, but then I realized that we basically just spent the days in the hospital room, never really needing any medical support or assistance other than just regular care help like getting Tylenol, getting a bath, or trying to silence the heart rate monitors that would not stop giving errors because of Hannah’s movements. 

And after seeing how motivated Hannah was after seeing her brother and sister, I know that she will do much better with a normal home life than lying in a hospital bed all day long.

So the tentative plan is to start the weaning process again at Sunrise tomorrow and use them to help us come up with a lifestyle plan for us to settle in here.   This includes a G-tube class, nutritional guidance to figure out a feeding plan, setting up PT and OT, coming up with a med schedule, setting up home medical supply services, setting up home health services, finding follow up physicians, etc.   Fortunately, we took all our trach care and change classes at TCH, so that is off the list!

If all goes as hoped, we could get Hannah home in less than a week!!  

As for me, I am now sitting in my new home in my new office on my computer I have not touched in a month and a half.   My father-in-law came to the hospital to sit with Hannah so that Daddy could drive me to our new house, give me a quick tour, and then he was off to spend the night with Hannah at the hospital.  My inlaws took my kids for the night so that I could just crash and relax.

And I did.  About 5 minutes after Daddy left, I went upstairs to my new bedroom, crawled into bed, and went right to sleep.  I just woke up a bit ago after a 7-hour “nap.”  Of course, my days and nights are still off too, but hopefully I can get some more sleep later today.   So for now, I am just vegging at my new house, having quiet “not having to worry about beeps and monitors” time, and trying to decompress.  After 6 weeks in a hospital and coming to a new home, I feel a bit out of place, but I will get over it.

We are “home” now.  In Las Vegas.  Our family is back together in the same city.  If all goes as hoped, we will all be back under the same roof soon.  Hannah has a long, long recovery ahead of her to get her back where she was, but if her attitude she had when she saw Ethan today is a sign of anything, she will get there!

It is now 5 am on Saturday morning.  Hannah fell asleep (as did I) at around 9 pm, and she woke up at midnight.   Her nurse and I got her back to sleep a couple of times, but that lasted only 10 to 15 minutes.  I have been up since midnight.

Barring any emergencies (like the Kangaroo Crew needing to transport an emergency patient), they are coming to pick us up at 7:30 am.  2-1/2 hours!!!   They want to be out of the room by 8:05 am.  Why the :05, who knows.  Just get me on the plane and get me to my kiddos!

I spent yesterday saying  ‘goodbye.”   We had good bye visits from Dr. Eng (Hannah’s TCH genetics doc) and Dr. Roy (Hannah’s ENT).   I gave thank-you cards to the PICU nurses, the PICU desk staff (who automatically put my name on the Ronald McDonald house list every morning so I could sleep in and not be down there at 7 am), and to the Ronald McDonald staff as well.

I told Dr. Roy that doctors like him and Dr. Bhakta really have spoiled me, and I have come to expect so much now.  Unfortunately, I am learning that doctors like them are very rare, and we just got very lucky.   It was also great therapy for me to be able to talk to him about what I am truly feeling about this whole situation and experience and get his very honest opinions as well.   At least he can’t get rid of me — we plan to keep in touch by email and phone, and he offered whatever assistance he can give.   We will look into removing the trach in a few months, but I just know in my heart is isn’t going to be a yes/no decision, as we still have the Gaucher type of progression in the back of our minds.

What we have left to deal with is — weaning from the Ativan (supposed nightmare), continue weaning the pentobarb and the chloral hydrate, chorea movements, seizure issue, possible worsening reflux (on Zantac now, but arching her back a lot!), and gas issues (perhaps need new formula?).   Hopefully they will continue daily PT and OT there, and as soon as we get settled there, I want to talk to the social worker to see what programs Hannah qualifies for and hope to get the process started for the Katie Beckett program (similar to Texas’ medically dependent children’s program).

I hope, hope, hope we are headed to the airport in a few hours.   The “plan” is to have us at the new hospital by 11:00 am-ish  Vegas time.   Shortly after that, major hug time for Ethan and Abigail (and Daddy will get a couple too!)

Yes, we are still in Texas.  Why you ask?  Because the plane had to be taken in for maintenance today, so therefore we are “scheduled” for tomorrow (Saturday) to be transferred to Vegas.  I say “scheduled” loosely because I got my hopes up to be leaving this morning, and found out about noon yesterday that we had to be postponed for another day.

I am SOOOOO ready to get to Vegas.  I am sitting here counting down the hours right now until tomorrow comes, and it is not even 10 am right now!!  GET ME OUT OF HERE!!!

Hannah seems to be doing better overall.  Her chorea movements have improved to the point where I would probably rate them a 3 out of 10 now where she was 10 out of 10 at its worst.  She is actually sleeping during the night now, about 6 to 8 hours (interrupted a few times).

Also, for the first time ever, she is actually taking a nap RIGHT NOW!  She has not napped during the day, a good nap, since we moved up here!  She has now been asleep for 45 minutes!!  PT has walked by twice to see if she was ready to play — nope!

Bad news is that Hannah failed the swallow study yesterday.  She aspirated the liquids and sometimes aspirated the thicker, pudding-like foods.  The thought is that because the chorea movements affect her tongue movements, she can’t control her swallowing mechanism that well.   Hopefully this will be temporary — good thing she will get another swallow study at the NIH in September when we go back.  Until then, she will be fed via Gtube primarily.   We were told we can try thicker foods like the pudding and refried beans on a “special times” basis, but for the most part, we are to let her just keep chewing on toys.

That is the one thing I have a hard time wrapping my brain around.  She was such an oral child.  She lived on the pacifier.  She loved her bottles.  She always had a Little People or other toy in her mouth.   Now she can’t even control her hands even to hold a toy, let alone put it in her mouth.  She can’t even suck on a paci right now because she can’t get her tongue to do what it needs to.

Rounds are hopefully going to start soon, and my little girl is starting to wake up.  Maybe she heard me typing and thought that 45 minutes was long enough to nap?

Hannah got a decent night sleep last night, finally!  She fell asleep at 5:30 pm (as did I), and she slept off and on for about 8 hours within a 10-hour period!  That is the best sleep she has gotten since we have been starting to get her off sedation!   And even right now, it is a bit before 9 pm, and she is finally asleep.  I hope, hope, hope that she does just as well tonight as she did last night.  Since she is not napping, this is the only time her body really gives herself time to recover.

Hannah met with her OT today who worked on spoon and bottle feeding again.  She was working with the butterscotch pudding, swallowing it (when it was put on the side of her mouth), but then she coughed up a bit of it into her trach HME (container that collects secretions and humidifies incoming air).  This is not good.   It means that she aspirated the pudding into her lungs instead of it going down the esophagus.   Needless to say, a swallow study is scheduled for early tomorrow morning to see if we now have an aspiration problem where we did not before this whole mess.

I changed out Hannah’s trach for the first time tonight.  We had done the CPR and trach change classes, practiced on dummies, done the daily trach care (changing out the collar and cleaning her neck).   That is the last thing to check off the list in terms of the things parents must do before they are discharged.  It was funny because I was so nervous because I had never seen Hannah’s stoma (hole) before, but it was really not a big deal.  So now she has a Shiley no-cuff trach, size 3.5 (for other SN moms).

Earlier today, Hannah’s attending came to visit us (which was so unusual since he had never done that before).  He wanted to let me know that Hannah and I “have our plane ticket,” and we are leaving at 8 am on Friday morning for Las Vegas!!!   What makes this cute is the transfer coordinator came by later in the afternoon asking me if the attending came by.  Apparently he was very excited for us, and he wanted to be the one to share the news.   She joked that he “stole her thunder,” as she likes being able to give good news.

But we are ready for transfer on Friday morning.  To say I am excited is an understatement, a huge understatement!!!   All the coordination is being finalized, and there is an attending there who will be there on Friday to take over Hannah’s care.

I am so close to seeing Abigail and Ethan, gosh I miss them so much!  On a separate note, I am so proud of them — they got their report cards… Ethan got all A’s (in the gifted and talented class no less), and Abby got mostly S’s (obviously talking too much and not listening is not her strong suit yet!).

It is 9 pm now.  Hannah is asleep, and soon I will be too!   My schedule is so off too — I have been up since 3 am this morning!!