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Wednesday, November 28, 2007

"Just because my shirt says 'Smile' doesn't mean I have to do it"

This litte girl now weighs 14lbs. 9.5oz and is 26.4 inches tall.

Sorry it has taken so long for me to post since the last post - we've had a lot going on! But, I can safely say that we're now getting used to having Mr. Trach in our lives...kind of. We wouldn't be close to this point without our families. Both of our families came in town (at different times) over the week of Thanksgiving and they all really helped us get our home back in order. We are so grateful to them! They did everything from deep cleaning to errand running to Christmas decorating (Jack and Mel even washed windows). They also helped keep an eye on Caro, so Bryce and I could get more rest - we really miss that:).

Anyway, thanks again to all of them!

(Also, an extra special thank you to my Uncle Jeff, who gave us a very posh Thanksgiving day - any more details will make everyone green with envy.)

Living with a trach

Sunday, November 18, 2007

The last few days since we've been home from the hospital have been very stressful. Getting used to her new trach with all of its equipment has been awful. Plus, Caroline really hasn't been herself lately - not as animated or strong, drooling more, kind of listless, and she still needs oxygen, which is frustrating because we were told before that she only needed oxygen because her throat wasn't providing a strong airway. We're now being told that she may be off of oxygen in 4-6 months. We're trying to be patient and hope that all of this will sort itself out for the best.

We have a lot of new equipment to get used to: (From L to R) oxygen concentrator (purifies the air into pure oxygen to go into her tube), oxygen saturation monitor, nebulizer, portable suction machine (the trach, like any other airway, gets mucous in it so we suction it out every couple hours or so) -- not seen here is the humidifier (see post from a few days ago for the picture)

The medical supplies needed for one month.

It's all worth it for...

this little beauty (one of her first smiles since the hospital).

The Backyard

The Backyard

Bryce's BBQ on its patio, lovingly made by Bryce

Bistro Table (the only thing not put together by Bryce [by my dad instead]) on a patio put in by Bryce

Another view of the backyard (the second plant in on this picture is actually a small lime tree)

Front yard plants

Side yard (the plants are sage and the ground cover is cedar bark)

Well, after a year and a half of planning and slaving away in the hot Las Vegas sun, we are finally done with the back and side yards. As you can see, we've put in a brick circle patio, a cement paver patio, a small lawn (w/automatic sprinkler system), flowers, bushes, vines and trees (w/automatic drip system), and by "we" I mean Bryce. Bryce did almost every bit of this whole yard (with help from law school friends on installation and my dad with the bistro table). I'm so proud of him for sticking with this - great job, Bryce!
(PS - Don't tell him, but I still have a few more things to add in the spring: more flowers, a tree or two, tomato plants...)

She's Home

Wednesday, November 14, 2007

We brought her home tonight...very hectic...tons of equipment...none of it worked as it should. Will post more when I come up for air. Glad to have her back though!

A Rollercoaster Week (now weeks): Days 9-14 - Trach Change, Training, and Waiting

Sunday, November 11, 2007

This place bores me.

Well, this past week has been primarily recovery from the tracheostomy and getting to know everything about handling a child with a trach. On Wednesday night our ENT changed the trach with no complications. This was an important step in her healing as the first trach change is when the ENT removes the sutures and examines her new airway. In our ENT's words after the first trach change, "the site is healing nicely."

Our ENT also stated on Wednesday night that we would probably go home "within a couple of days." We were also promised on the day of the extubation and tracheostomy that we would go home within 3-7 days. Well, my math skills aren't the greatest anymore, but according to my calculations, that would have put us home sometime between Tuesday and Saturday. Hmmm . . .

Well, seeing how we are still here, (I am actually writing this post from Caro's hospital room), once again we have been deceived by Caro's medical providers. Maybe they just really like her and want her to stay (her hair is quite an eccentric cloud of curly fun). Or maybe the hospital staff find my conversation witty and entertaining. Or just maybe there is a conspiracy between the health care providers to keep her here since we have good insurance benefits and they will certainly be paid (I have noticed that most of the rooms here are empty). Either way we're still here.

That said, things have improved dramatically for us all since we moved downstairs to the Pediatric Unit (from the Pediatric Intensive Care Unit) on Saturday. Our new room has a private bathroom with a shower, a nice bench/couch/bed for hanging out and sleeping on, a door that the staff do not keep propped open at all times during the day and night, less intrusive hospital staff that understand that 4:00 a.m. is a time for sleeping for most people and not for loud conversations in the halls or in your room, more storage space for our stuff, no visiting policy - the number of guests and the times they can visit are not regulated, and most importantly, Internet accessibility (I was able to catch up on some much needed work from 9:00 p.m. until 3:30 a.m. Saturday night/Sunday morning as well as post this blog today as a result).

Besides the drop down to the Peds floor this week, we also had CPR training with a trach, read mandatory manuals and watched a video on trach changing, and Erika even successfully changed Caro's trach on Friday for practice (I will be changing it later on before we leave). We also had all the equipment required for a trach (suctioning machine, humidifier, suction catheters, saline bullets, extra trachs, attachments for the trach, etc.) delivered to our home on Friday. Erika was trained on the use, maintenance, and care of each machine at our home.

We asked for the next gen/top-of-the-line equipment. However, as you can see from the pic of the humidifier below, I have determined that in medical-speak, I should always use the opposite word of what I actually intend to mean. I'm not sure why I had not caught on to this before given that we all know that in medical-speak, if you test "positive" for something it is always bad (negative), and if you test "negative" for something it is always good (positive). Regardless, good luck Erika hauling this monstrosity (weighing in at a hefty 40 lbs.) up and down the stairs with an oxygen tank and Caro.

This humidifier probably had its first use in the '50s.

Anyway, as late as Friday night we confirmed with the docs that we would probably be going home on Saturday or Sunday. I should have known, however, that in medical-speak the word "probably" is synonymous with "unlikely/ain't gonna happen" because on Saturday morning, the doc told us that he would never let a patient go home after a tracheostomy any earlier than 10 days after the operation. Best case scenario, he expected us to go home this Wednesday.

So they are basically just monitoring us now (Caro is stable) to ensure that we are comfortable with everything, despite our best efforts to prove that already. A quote from Angela on The Office comes to mind: "I love being judged. I feel that I can hold up under even the strictest scrutiny."

Except that we are getting tired of being judged. We are asked no less than eight times a day now by doctors and nurses alike, "so, do you feel comfortable with all of this equipment?"; "this is a lot of stuff, are you sure you understand?"; "I heard a report that you were overwhelmed by all of this, are you sure you can handle taking her home?"; "you understand the importance of the humidity, don't you?"; "can you suction her?"; "do you come from a medical background?"; you get the idea. We just want to take her home and it seems that unless we pass some unwritten, unspoken of test created in the minds of the practitioners here, we won't be able to. So that's my rant about that.

The silver lining in all of this is it allows us to have time to adjust to all of the changes that have occurred with Caro and become extremely comfortable and prepared for the new schedule of breathing treatments, oral medications, and everything else that goes along with having a trach and a child post-op coming home from the hospital (I counted six new prescriptions for meds that Caro will be on when we get home).

Hopefully we will be able to come home sometime this week (Wednesday is the day being mentioned most).

A Rollercoaster Week: Day 7-8 - Monitoring, Weaning, Training

Monday, November 5, 2007

Sunday morning, I arrived at the hospital to find that Caroline was already off the ventilator that was attached to her trach and was breathing slowly and deeply on her own. She was also rather fidgety and seemed uncomfortable (but not in pain). We asked the ENT and others that came in to see her about her fidgetiness and they said that because she had a foreign object in her body now (the trach), it would take her a couple of weeks to adjust to it. She would also have a lot of secretions (clear mucous, like the kind that comes out of your nose) through her trach and need frequent suctioning. She had a loose mask over the trach that gave her warmed, humidified air and oxygen.

Sunday afternoon we were finally able to hold Caroline, after not being able to since Monday. She is such a little doll!

Today we held her more, including Erika’s mom who held her for three hours in a row! Caroline looks beautiful without a nasal cannula in now and she can also lie on her back without having to move her head to the side to get air. We hope that the trach will help her to develop faster and maybe even sleep better. We also hope that she will be able to get weaned off of the oxygen entirely, although at this point she is still on 35% oxygen – whatever that means (no one has given us a satisfactory explanation yet).

Now we just have to wait until Wednesday when the ENT is expected to change out her trach for the one that she will go home with. We will also need to be trained on how to suction the trach and care for it ourselves. We expect to go home sometime between Thursday and Sunday this week depending on Caroline’s recovery time.

We can already tell that having a trach is not ideal and will require additional equipment to carry around with us whenever Caroline goes out or moves rooms in our home. It is also scary to think that like her G-tube, she can pull the trach device out of her neck at anytime. But unlike the G-tube, we cannot cover up her trach with clothing to prevent her from grabbing at it. Admittedly, I am not happy at all about her having to have this trach, especially given that we came to the hospital on merely a ¼ liter of oxygen. Caroline does not seem to mind it much though, and we are certain that this is the best thing for her right now. We just hope that this does not turn into a permanent thing. We also hope that she will be able to come off of her oxygen given that we thought her airway blockages were the reason for the oxygen in the first place.

A Rollercoaster Week: Day 6 - Trach Day

Well, the day had finally arrived, when we could finally find out if we were ever going to start moving towards leaving the hospital. Caroline slept most of the morning (w/o sedatives) in anticipation of what would happen that afternoon. She also went off of her feeds at 7:00 a.m., given the possibility that she may need surgery. The operation was scheduled for 3:00 p.m., however, at approximately 12:50 p.m., we overheard someone tell the nurse that the transport team was on their way to take Caroline down to the OR. Apparently, this was also news to the nurse as she began rushing to get Caroline ready by making all of her monitors portable and taking her off of her IVs. By 12:55 we were on our way down to the OR.

Just outside of the OR, Erika and I spoke briefly with the ENT and the Anesthesiologist before Caroline went in. The ENT assured us that he would go forward with the original plan to attempt to extubate Caroline and, only if that did not work, would he go forward with the tracheostomy. The time to determine the extubation was approximately 30 minutes and, if a tracheostomy was needed, that was also expected to take 30 minutes.

We waited impatiently in the waiting room for an hour and a half before we heard anything. A nurse that we recognized from the OR came out and she had tears in her eyes. We were worried that something terrible had happened, but she was only sad to report that the tracheostomy was needed and that the ENT had begun that procedure. We had mixed feelings – we were glad that Caro was okay given that we had waited so long, but we were sad that she was going to need a trach after all (making this her third surgery this year and second surgery this week). Another hour and a half passed before we heard from the ENT that the tracheostomy had been successful and that Caroline was waiting for us in her room up in the PICU.

Caroline was on heavy pain medications and slept most of the rest of that day.

A Rollercoaster Week: Day 3-5 – The Long Wait

The doctors decided to wait until Saturday (Day 6) to reattempt extubation. They hoped the 72 hours would allow any swelling to subside. To make that happen while the tube was still in place, they pumped her full of steroids to decrease swelling, which in turn caused her blood sugar to zoom up to 366 (steroids = Caro’s Halloween treat)! So, they also gave her insulin to counteract that – sometimes doing so too much, bringing her sugar levels down to the 40s. They also kept her on sedatives (Mommy and Daddy’s Halloween treat) to keep her from getting too upset about the tube.

This time, the ENT would attempt extubation using special sprays and scopes, to prevent any spasms and to see what was going on with her throat respectively. We really like her ENT and felt that he would do his utmost to keep her off of a trach. (He’d seen her prior to this hospitalization and knew that she had done just fine without a trach, a fact that most of the nurses and doctors here just couldn’t grasp).

The ENT did say that, if she couldn’t do well with this extubation, they would place a trach in the OR right then. So, to help prepare us just in case, he explained more about a trach and allayed some concerns.

He told us the following:
1) A trach is not permanent; it can be taken out when the doctors think she’s ready for it to go. Ninety percent of kids get their trachs out when they are three years old or 30lbs.
2) If a trach gets put in, it would be left in until a) swelling goes down (not long), b) all scheduled surgeries performed (by January), c) the winter (RSV season) is over, and d) her airway gets more structure and strength (???).
3) With a trach, she could still do everything she still does now – bottle feeds, physical therapy, tummy time, etc. Just no swimming.
4) A trach would not cause her to get sick with a cold or something more easily. It may get infected, but she could be given antibiotics for those infections.
5) Once the trach is removed, the scar left is very slight.
6) The trach comes with additional equipment (for suctioning and humidifying her airway).
7) With a trach in, performing her head surgery will be much safer, should we decide to go forward with that, because her airway will be more secure. Her recovery would also be faster (because it won’t be nearly as difficult to take her off the vent).

With that information, we spent a lot of time preparing our minds for either outcome on Saturday, and we began to pray for the outcome that would make her the strongest the fastest.

A Rollercoaster Week: Day 2 – Re-Intubation

The next day, doctors and nurses monitored Caroline closely. To monitor a child who is intubated (when a breathing tube is placed through the mouth to keep the child breathing), the doctors keep a close eye on her blood/gas test results. They get these results by taking a little bit of her blood every so often to check the amount of oxygen, CO2, and other gases in her blood. (She’s always hooked up to monitors that give them a general idea, but the blood tests are more accurate.) As the numbers look better, they allow her to breathe more and more on her own, and when she seems ready to take over breathing completely, they pull the tube out.

So, her blood/gas test results stayed strong throughout the day, and she was breathing more easily. She also remained somewhat sedated (standard operating procedure for an intubated kid because the tube usually bothers them so much otherwise). During the day, her pulmonologist (lung doctor) evaluated her. We asked him about the trach issue from yesterday. He said he wasn’t positive Caro needed a trach. He said that it may be something we need to look at in the future but not during this hospitalization, unless, for some reason, we couldn’t get her off the vent.

That night, the attending doctor (a different one from the night before) told us that they thought they could extubate (take the tube out) her that night. We approved and watched as the nurses and doctors again took the tube out. She only went for about a minute before her skin color and her monitors made it clear she needed to be re-intubated.

We were baffled and hopeless. What could be causing her all of these problems? When we brought her in, she wasn’t even close to requiring ventilation. The attending doctor said (and this was later confirmed) that he believed the vent tubes irritated her throat to the point where it was extremely swollen. Because her airway is already weak, this causes severe blockage. He said he’d work out a plan of action with the ENT (ear, nose, and throat) doctor and the pulmonologist.

On a positive note, her cardiologist came in to check on her again, and her ASD remained nice and closed, so at least the procedure was a success (a fact that was difficult to remember…strike that…was completely ignored that night).

A Rollercoaster Week: Day 1 - ASD Closure

Sunday, November 4, 2007

We arrived at the hospital at 6:00am (?!?!)...

and, after waiting for an hour...

a nurse brought us back to a surgery prep room and got Caro ready for surgery...

We picked her up, went with the doctor and nurses into the OR, and kissed her goodbye...

The procedure lasted 3 1/2 hours (they told us it would take about 2 hrs.), and, just as we were about to tear into the OR to get answers, the OR nurse came out to tell us that the doctor closed her ASD (hole in her heart) using the catheter procedure! No open-heart surgery needed! The doctor said it took him awhile to close the hole, and he was worried the device wouldn't hold. But, after checking and re-checking, the doctor determined the device would indeed hold.

They decided to have Caro recover in the PICU (Pediatric Intensive Care Unit). We went up to see her around 11:30 am. She was off the ventilator that they had had her on for the procedure, was breathing hard and her heart rate was high. The cardiologist and anesthesiologist were concerned but decided that she would recover. We always knew she would take awhile to recover, so we weren't worried.

The PICU attending doctor however came in and seemed concerned- too concerned given she had never seen Caro before and had only been observing her for about an hour. She asked Bryce if we had ever been talked to about putting a trach on Caroline. The answer was no, no specialist has ever mentioned that to us. Before we came in for the procedure, she only needed a small amount of oxygen given through a cannula. I tried to push aside the doctor's question, but it kept annoying me that she brought that up. We asked other doctors on the unit about her question, and they said not to worry about it.

Unfortunately, as the day went on, she kept breathing harder and harder. We thought she might have to go back on a ventilator, which, while serious, was not that big of a deal to us - we knew her recovery would be difficult.

Then, the PICU doctor then came on and started telling us all of the reasons why Caroline should have a trach. And we were like what?!? Are you seriously talking to us about a hole in my daughter's throat right now?!? Basically the lady had no tact/bedside mannner - no one, let alone a doctor who had never seen Caro before that day, should've brought that up the night of the procedure - something that I made clear to her a few hours later (in front of another nurse, Bryce, and my was late:)).

After that discussion, Caroline actually started to breath easier. We got less and less worried. However, the nurse then took her temperature, and it read 103. I had been holding her, so, with Bryce's help, I put her back in her crib to help cool air circulate around her. As we got her situated, she stopped breathing and turned blue. The nurses and doctor did an emergency intubation (put breathing tube back in). After that, with the help of sedatives, she calmed down a lot and was able to rest.

To be continued...

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