There's No Place Like Home

First things first. I can now attest to the fact that there is a 3rd floor. And yes, it is nice. Alondra's room had a very large picture window looking out over the Minneapolis skyline. We rested and watched the sun come up together. Even though it was a cloudy and cold sunrise, it was still pretty and peaceful.

Now for the even better news. We're home!

Yes, these pics were taken only a few minutes ago. Alondra is so happy to be home as are we to have her here. We were able to get home just in time for me to pick the older kids up from band practice. The plan was to go straight from there to the hospital where we'd order pizza or something for dinner. So the kids got in the car and asked if we were going to the hospital. All I said was we were going to see Alondra. Lauren got suspicious as we were getting close to home. It was a very nice surprise.

Alondra is still a little sleepy, she's very hoarse, and she does sound a bit gunky from time to time. But between naps she does wake up and play. As you can see. Thanks again for all your prayers.


The Mythical 3rd Floor

The day started out differently than I had expected. I arrived in the PICU to find Alondra sounding pretty bad. The nurse confirmed that she heard some inspiratory strider. Dr. Kerchek came by and didn't like what he heard either. He wrote orders to discontinue oral feeding anticipating a bronchipscopy may be necessary. I patted her back (she was still trying to sleep) until Dr. Soumkh arrived. He was also surprised to hear the way Alondra was breathing. Though he had an idea. He asked if she had been laying down for long. The night nurse confirmed she had been laying down all night - afterall she was asleep. I was instructed to get her up and see if that made a difference. It did. Dr. Soumkh proceeded to have me lay her back down and hold her head still so he could remove the stitches. That really got Alondra mad. The crying did help clear her airway and through the morning she sounded better and better.

I wasn't in much of a mood to go to work after spending a couple hours worrying, and by then Deanna was there and she really wanted some help. So I decided to stay at the hospital until the older kids were due home and needed me to taxi them from sporting event to sporting event.

Alondra was pretty out of it most of the morning. But as we got into the afternoon she started to come out of it. In the morning she only wanted to be cuddled, but after lunch I could put her on the bed to play with toys. We gave her a nice bath and she even put on her PJs and had some applesauce. Just before I had to leave I offered my fingers as she was sitting on the bed. She went for them and lifted herself to the standing position. Deanna wanted me to sit her back down right away, but Alondra had a big smile and clearly wanted to stand. I told her how proud I was and helped he back down.

As the morning progressed, we were threatened with the mythical 3rd floor again. We had heard stories of this unit on the 3rd floor. A very nice unit by all accounts. In the time we've spent in PICU, we've seen many children and their families leave the PICU for the 3rd floor, never to be seen again. We had even been told Alondra would move the 3rd floor back in May. But instead we were sent home. So as the mythical 3rd floor was mentioned again, I was skeptical. Then it was scheduled. Alondra would be moved to the 3rd floor at 1:30. Right. 1:30 came and went. Still no 3rd floor. Then I had to leave to play taxi driver.

We had a successful sports evening. The soccer team started it off with a 3-2 victory over Epiphany in a cold rain. Then in a nice and warm gym, the volleyball team lost in a nail biter to St. Vincents.

I've spoken with Deanna since I left. She says she's calling from the mythical 3rd floor. Alondra is feeling better. She even played on the floor for about 45 minutes. She still sounds gunky, but hopefully she'll work that out soon. As for the 3rd floor, call me doubting Thomas. But I'll believe it when I see it.


Great Day in PICU

I arrived bright and early to find 3 nurses trying to hold Alondra still. They had just gotten orders to cut back on the meds so Alondra knew that meant it was time to wake up. After a half hour of fighting with the baby while the team got everything in order, the tubes came out. She immediately turned over and arched her back with that horse cry trying to get comfortable. But the breathing was great which is the important thing. For about the next hour there was no position that was comfortable. She'd find her thumb for about 5 seconds and then have to roll over again. We got her into my arms as quickly as possible, but I wouldn't call what I was doing holding her. Rather it was catching her as she jockeyed for the next position that was only comfortable for about 5 seconds. Soon Mom arrived and took her turn. We lost an IV in the process, but the backup Lori put in earlier in the week was waiting.

Now Alondra is able to rest. I think she got enough of the drugs out of her system. She still hasn't slept for more than a few minutes at a time. But she is starting to drink clear liquids. At first she was pushing the bottle away - it must've really hurt to swallow. But she's getting more comfortable with it all.

We saw Dr. Soumkh just before lunch. He's very pleased with how clear Alondra's lungs sound. There's still a lot of gunk that she needs to cough out, but her airway is clear and wide. He said all goes well and we should be able to bring her home in a few days. I asked why he kept saying 3 to 6 weeks and he went on and on about how difficult it is to predict how well the kids will do and that he was thinking she'd need the posterior and the anterior graft, blah, blah, blah. Anyway, we're very thankful she's doing so well.

The baby in the next room was extubated soon after Alondra. He's only a few months old and just had a heart procedure. He's doing well too. And somehow the Vikings found a way to beat Carolina. So it's a great day.


Countdown to Extubation

Alondra is still behaving herself in the PICU. She had another quiet night and we're just holding tight until tomorrow when she comes off the vent. They are still cutting back on the meds as they want her awake for the extubation. So at 11am this morning they started her on propofol. It's a sedative that works nearly immediately and doesn't stay in her system. She can be alert within minutes of taking her off that medication. Alondra was resting soundly on the propofol when I left her room just after lunch.

Prior the propofol, she was really fighting the meds. I think she's tired of laying there and wanted to be awake. A couple times she even opened her eyes and focused on my face. I could get her to rest by holding her hand and giving her head kisses. The head kiss is something Alondra invented - next time you see her ask us to demonstrate. But nurse Carol kept threatening to jack up the meds if she didn't settle down. So we did our best to keep quiet.

Deanna brought Matt and Lauren in to see Alondra about lunch time. We visited for a while, had some lunch and then the older kids said their goodbye's. Deanna is going to spend the afternoon visiting. Tomorrow will be a big day.


Just Chillin in the PICU

Alondra has had an uneventful stay in the PICU. I saw the scar on her neck again this morning and it's healing very well. I also got to help Lori get another IV going. The one in her left arm closed off yesterday afternoon so she was down to one in her left foot. Lori is the cautious type and always likes to have 2 good lines for patients on a vent. It's not easy to get one going with chunky little ones like Alondra. But Lori got the job done. Took a little messing around, but it's in. As for my part, I held her foot steady.

The plan is still to extubate on Sunday. The process of weaning Alondra from the drugs is well underway. She's moving her arms and legs a little and occasionally trying to open her eyes. But she's still not allowed to move her head so we try to keep her quiet so she doesn't need more drugs.

It sounds like Alondra will spend at least 1 day post extubation in the PICU and then get to move another unit. So that would happen Monday at the earliest. Then Dr. Sumac is still giving us the 3 to 6 week line, but I asked Lori about that this morning. She said she'd be very surprised if Alondra needed to stay the full 3 weeks. A week after getting to move upstairs is likely, but not much more than that. It sounds like the biggest deal will be to get her eating again. That's never been a problem for her before.

So all is well at the hospital. I had a good laugh with Matt after soccer practice the other night I can share. The coach called a parents only meeting at the end of practice to let us know there would only be 1 boys team this year. The just didn't have enough players to fill the JV roster. He was concerned about the smaller boys (like Matt) in that this would cut into their playing time and wanted the parents to break the news. So on the way home I told Matt, "Dude, you made varsity!" He does his best Napoleon Dynamite "Yessss!" Then I tell him that everyone made varsity. He took it well. Varsity has nicer uniforms.


PICU Day 2

Alondra had a very quiet night. That's just what we want. She needs to be still and sleep so her airway can heal. Dr. Brown made his rounds early (he's the ENT that assisted with surgery yesterday). He changed the bandage on Alondra's neck and I got my first look at the incision. It is smaller than I expected, and hopefully it'll heal well so the scar isn't visible. There's a small flexible tube still in the wound to help drain any fluid that may want to collect under the skin. Dr. Brown said it looks great and they'll likely remove that tube tomorrow.

The on duty PICU intensivist made several unsuccessful attempts at inserting her NG-tube yesterday. The NG-tube is a small feeding tube that needs to go through the nose and all the way past the stomach into the intestine. It takes several hours between each attempt because they want to check that the tube is in the right spot with an x-ray before they can start using it. Overnight Sue (Alondra's night nurse) got the job done. When I arrived this morning she had a big smile on because she had her first look at the x-rays confirming she had done it. Of course they can't start using the NG-tube until a doctor reads the x-ray. But there was quite the end zone celebration between Sue, Lori, and Jen at nurse shift change. Nurses 1, Doctors 0 - not that they're keeping score or anything. Anyway, Alondra should be getting her formula by now.

Lori and Jen are watching Alondra today. Jen is Lori's trainee and Lori was one of Luke's primary nurses in the PICU. Lori asked to be assigned to Alondra this week. When I left Jen was settling in for a long boring day (just what we want) while Lori and Deanna were catching up. As long as Alondra is able to sleep with all that talking, it's all good.


Surgery Day

Surgery was scheduled for 7:30am, so we were up early. Alondra showed up at the hospital in her PJs and a good mood - right on time. They have a new security procedure at Childrens Hospital where you get a name tag sticker to put on your shirt at checkin. Alondra spent most of the pre-op wait trying to pull Dad's sticker off. When it was time, she happily went off in the anesthesiologist arms. Afterall, he had a fun surgical mask she could try to pull off his face.

The first good news came before we had spent an hour in the waiting room. The bronchioscopy revealed that Alondra's trachea now measured a 3, up from 2.5 this summer (4 is normal for a 1 year old). So all she'll need is the anterior graft. The scope also showed that her lower bronchial tubes, though still a little floppy, are firming up as we had hoped.

A couple hours later Dr. Sumac (I know I'm spelling that wrong - Deanna will correct me) showed up at the door of the waiting room with really good news. The procedure went beautifully and Alondra is now resting with Mom in the PICU - with a size 4 nasal tube!

The procedure takes a piece of cartilage from one if her ribs and grafts it to her trachea to widen the airway. Had Alondra's airway still been as narrow as it had measured this summer, she may have needed both a posterior and an anterior graft. But with the growth over the summer, she only needed the procedure with a single graft. The incision made on her chest to get the cartilage is much smaller than I had expected. Her neck however is covered by a large bandage so I'm not sure what that scar will be like. The doctor in the PICU assured me it's likely smaller than I think.

The plan now is to keep her on the vent, sedated until Sunday to let her trachea heal. On Sunday, they'll try to take her off the vent so she can begin the next phase of recovery. It'll take some time for her to adjust after all the drugs. And then she'll have to re-learn to swallow and such. At this point, we're still planning on a 3 to 6 week hospital stay, but hopeful Alondra can come home soon.

Thanks for all your prayers. They do make a difference.


Alondra 1.0

A video covering year 1 with the newest member of the family.

Yeah - I'm in one of those sentimental moods. I think it has something to do with the upcoming surgery. This was a good excuse for that tear in my eye. They can't all be as light hearted as the mentos / diet coke thing.


Ranger Paul's Mentos Challenge

Even he admitted the bar was set pretty low (you have to scroll down past the whale bit). Even so, we give it a go and simply destroy the competition.

(sound added to video 9/8)

In the spirit of full disclosure, the mentos loading procedure was the idea of one of the neighborhood kids. So how does it feel to be outdone by a 12 year old kid Ranger Paul?


Summer's Over?

Though the forecast was for rain, it turned out to be a pretty nice day. My first attempt at a slow cooked BBQ Beef Brisket even worked out. Alondra celebrated the big birthday #1 surrounded by family. With the encouragement of a certain cousin, she decided not to wait for the cake to be cut.

Alondra says thanks for all the wonderful gifts.

Surgery is on for 7:30am on the 12th. A little over a week away. We're planning a 4 to 6 week stay in the hospital. I'll keep everyone updated on how things are going with this blog.