Going to Help in Haiti

I am leaving on Sunday, January 24 to go to Haiti to help earthquake victims. If you would like to donate toward this cause, please click on my PayPal link in the right sidebar. Our team has already purchased a $2000 water purifier to leave with the Haitian citizens, and I will be taking a suitcase of clothes and whatever money I receive directly to Port-au-Prince. This is a great avenue to not just provide for immediate supplies, but to give emotional support and hands-on help to those in need.

I hope to be able to write a bit about what happens when we are there, though I don’t know if I’ll be able to contact the outside world until I return. If so, I’ll post something, but if not, I’ll do it when I return. Please keep Amy and the kids in your prayers as well during my time away. It won’t be easy, but it will be good.

Thank you ahead of time.

Olivia’s Update: 2 August 2009

As of last night, Olivia is in the PICU again with excess fluid around her heart and lungs. The medical staff is trying to get that fluid out of her body by medication instead of drawing it out with a needle. So far it is working, but we were told we'd be here for another two or three days as they monitor her.

Thanks for keeping her in prayer!

Olivia is Home!

Sorry for not posting, but we were able to go home the afternoon/evening of the 21st and it has been maintenance mode since then. Here’s what happened in the meantime.

Olivia’s 12th Day: The day began at 3:30am with lots of people coming and going, full assessments, vitals, meds, the leaking neck IV had to come out, x-rays, projectile vomiting, removing the drainage tubes (very painful), more x-rays, and lots of tears and screaming. But because her drainage has decreased and the tubes are out, she could be going home very soon. Incredible!

Monday Afternoon: After a few rounds of x-rays, they saw a large pocket of air trapped in her chest that needs to be absorbed or dispersed. She’s back on oxygen and an O2 monitor whenever she is in bed. We’ve been trying to keep her moving and walking to deal with the trapped air. Amy is on the way to the hospital with the kids for play/interaction time!

First Evening at Home: At some point in the evening, Olivia was apparently standing between Kayla and the show on TV. Instead of asking her to move, Kayla kicked her in the chest. A long, serious chat ensued.

We returned to the hospital two days after leaving to take the stitches out and get more x-rays. The stitches didn’t hurt coming out and the x-rays show no change: still a pocket of air in her ribcage area, but it is not alarming. Olivia complains of leg pain and sensitivity at times, but she is mostly good. Mornings seem to be the worst because she hasn’t had any pain medicine through the night. At the appointment they said we could take her off the ibuprofen, but she still needs a little something throughout the day. We’re gonna keep her on it.

We have been blessed by such an overwhelming show of support these last few weeks. Thank you to all who have prayed and served us in the hundred practical ways! We are so grateful to see everyone’s heart for our little girl and we appreciate all the prayers. Thank you!

Olivia’s Tenth Day

Olivia is napping at the moment. Over the past few days we have had many conversations about which labs to draw, if any, and when and how to draw them. The options of a mid line or a PICC line have been discussed at length, but we have found other options that did not involve poking her again, so we have chosen those. Her one and only IV, which is in the left side of her neck, has held up so far. I did notice today that is has come out about one-quarter inch, but it is not leaking so I hope it will still hold for however long we need it. The options are not fun.

Amy has come out every day and played with Olivia a lot. Yesterday they got out of the room and spent the day meandering the hospital. There are lots of lights and colors, a toy train that rides on an overhead track, and large Seuss-ish plastic creatures that hang from the ceiling and slowly turn. These seem to keep her attention pretty well and take her focus off how she feels at the moment. Olivia loved being carted around so much yesterday that she was quite unhappy to be put back into her bed that evening.

Design thought for a children’s hospital: putting fun things just out of reach is a great way to get kids up on their feet and working their bodies in a way they haven’t done for a little while. It’s just enough motivation to encourage movement, which helps the healing process. Good job, Children’s Mercy!

In just a bit, Amy will be arriving here at the hospital with Kayla and Maddie. I’ll have the three girls in the hospital for a few hours. We’re gonna play a few games, have a small meal, and allow them to be around each other for a bit.

I spent time at home with the other kids yesterday; first time in nine days. While Amy was with Olivia at the hospital, I came home at nap time and stayed until all the kids were asleep. The kids were having emotional meltdowns so we thought it would help for Amy and me to switch spots for a few hours. However, it seems that they now know exactly what they were missing, whereas before it was only a generalized frustration without knowing what was missing. It’s very hard to know what the right strategy is in this situation. Should Amy and I switch places every few hours or every few days, or is it better for us to stay in our separate locations until it’s all over? There is not a definitive answer in this situation.

The schedule is going to get real crazy starting today: I still have school, Amy needs to work, I need to work, the kids need attention from both of us, one of us has to stay with Olivia at all times, the lawn and housework needs doing, etc. Many, many people have already pitched in and we are exceedingly grateful to all who have helped already in what ever way they could. Thank you so much!

Blowing It (Veins, That Is)

Thursday Morning, 2am: And things were going so well. Out of two active IVs, the one in her hand just blew to smithereens. [Notice knuckles and forearm in the picture.] I wish I had known that potassium has a tendency to degrade veins in “heart babies.” It would have come in handy three hours ago before we gave it to her. Especially since we’ve had such a hard time getting IVs in and keeping them working.

I hate to do it, but the PICC line must go in pronto tomorrow. In the long run, it will save Olivia more heartache and needle sticks than the alternative that we have been trying to do.

Olivia’s Wednesday Night Update

We were moved to a single room today. Olivia has been through so much, she was convinced we were going back into surgery. It wasn’t until we actually got in the room and got settled that she started to calm down—just in time for more assessments, in-processing, blood draws, a breathing treatment, and visits from every medical personnel on the floor. Okay, not every. Moving floors is a tough afternoon.

The nurses took out the feeding tube that went down her nose (nasogastric, or NG tube) and unhooked her from the vacuum drainage system for her chest. She still has three tubes (called Blakes) coming out of her chest, but they are attached to individual compressed bulbs that continue the suction on a lesser level.

There were issues with drawing blood again; seems to be the theme for this round of surgeries. Several “professional blood-letters” were called in and we even used a sonogram to locate a good vein. After a needle poke and a lot of fishing for the vein, I called it off. Drastic options were considered (anesthesia team, mid-line, PICC line), but we finally settled on calling in the transport team—the Red Cross meets the Navy Seals of Children’s Mercy. They managed to salvage an IV already in place and within three minutes we had the blood samples needed. Olivia didn’t feel a thing.

The samples came back with the same results I’ve heard several times: her values are on the low side of good, but not decreasing in any way. Awesome. We’ll take it.

I met the night nurse and we discussed the schedule. She’s all about keeping Olivia comfortable and minimizing the interruptions so she can sleep more than she has to endure interruptions. That’s a good nurse, people: do what is necessary, but do only what is necessarily beneficial.

A few friends dropped by the room with gifts and hugs for the three-year-old super trooper. Bubbles, stickers, and balloons are today’s winners, but Amy was the MVP. The mother’s presence, her songs, and reading to her recovering daughter have no equal. I think that’s in Proverbs. Probably chapter 31.

Olivia is sleeping well now and will only be interrupted once before the sun comes up. It’s a far cry from what the norm has been for the last week.

Here’s two pictures: one right after the first surgery this week and the other this afternoon as she hid from the falling bubbles.

Hospitals are Weird

Hospitals are weird.

The TV that is paid the most attention to is the one with no entertainment. Ladies with bright colored outfits are expected to interrupt every two hours. Night time in the worst time to try and sleep. A very uncomfortable chair is the best bed in the house. Showers are a luxury. Everyone is in pain, but no one talks about it. The rudest professionals are the best at what they do. Asking a question may get you an answer, but understanding it is a whole other conversation.

Olivia’s Wednesday 9am Update

From blood work this morning, all values are steady, x-ray is same as the last two days, and her drainage isn’t doing too bad. We will be moving her to the regular recovery floor any time now.

Just gave her some chocolate milk—first drink that is not water or apple juice. She really likes it. Gotta work her back up to solids after not having anything but juice for the last six days. Nothing like forced hospital fasting!

I have been able to help out a bit with her care. Yesterday I got to help with switching out a catheter in her left jugular artery and with taking out her foot IV. Good experience—and a good way to get over being nauseous—for when I actually start working in the NICU.

Olivia’s 1am Update, Wednesday Morning

Well, we were moved into a room with another patient today. They are generally quiet, which is nice, but of course everyone would like their own room.

We will almost certainly be moved from the PICU to the regular cardiac recovery floor tomorrow. Blood work, x-rays, and how she is handling recovery will determine that. So far, her levels are on the low side of good, but that doesn’t appear to upset the surgeon or the medical staff at all. It’s just a matter of her body working back up to its normal state once again.

Amy was here for quite a while today and Olivia loved it. Amy read to her, sang songs, played with stickers and balloons, and prayed with her before she left for the night. She’ll be back early tomorrow morning while I go to school for my summer class, after which I will resume my bedside position.

A video of Olivia playing with a balloon, obviously feeling better.

Olivia’s 9:30am Update

’Twas a bit rough last night. Olivia cried whenever anyone came near her; the first time this has happened consistently. I’m sure the the nurse didn’t feel too great about that.

This morning’s X-rays came back with a bit of swelling from yesterday’s surgery, but seemingly nothing out of the norm. Blood work was drawn again this morning, but they returned some slightly off values. More blood, calcium, and platelets are being given.

She is very sensitive to having the chest tubes emptied. To do this, the flexible tube is held with one hand at the end closest to the body while the other hand pushes the blood away from the body and down into the collection unit. This creates vacuum pressure inside the abdomen and can be painful if done too quickly. Releasing the still hand slowly is the key to not increasing the pressure too fast.

They wanted to move her to a regular room, but I discussed my concerns with moving her too quickly. I’m trying to finagle one more day to have more focused and constant care in Pediatric ICU. Some of the issues that have arisen over the last several days have done so quite quickly. I feel more reassured in a “constant care” type of environment with one-to-one care than I would on a floor with one nurse for four or six patients.

I have fallen into a pattern of discussing two issues with each nurse at the change of shift: (1) Keep pain medications on a steady schedule so her pain doesn’t get overwhelming, and (2) cluster the care whenever possible. If respiratory therapy and radiology are coming soon, and the nursing assessment must be done around the same time, I'm trying to get them to all come in at the same time rather than interrupting several times over several hours. If they can, they are more than willing to work with that request than most people think.

Olivia’s 1am Update

I’ve been trying to monitor the whimpering that Olivia has done. There seems to be a correlation between how much vacuum pressure is present in the drainage tubes in her chest and the amount of moaning she does. After a surgery such as this, there are small, flexible tubes stitched into patient’s chest. These tubes are hooked up to a powered hoover-like contraption (or, Dyson-like, for the younger, cooler folk . . . except not as powerful . . . so I guess it’s closer to a dustbuster. Anyways . . .). The machine creates suction that pulls the extra blood and fluid from the open abdominal cavity so infection is less likely, distention is minimized, and the healing process is pushed along. Of course this vacuum creates internal pressure, which is not comfortable. Hence the moaning.

I noticed some duskiness (grayish-blue coloring) creeping back into her face and something that looked like a section of capillaries which had burst at Olivia’s neckline. I talked with the physician and we ran a bunch of lab tests. We found out her hemoglobin and hematocrit (H&H) levels were fine, but on the slightly low side of fine. Not a problem. However, we found that her blood was too thin so we added two helpings of platelets. This will thicken it up a bit and assist with coagulation. We also found a need to increase some electrolytes, so calcium gluconate was given. Her color looks better now and the neckline issue has basically disappeared.

She has some pain meds on board, so she should be able to sleep decently for the next several hours. A few moans here and there, as far as I am concerned, are more than allowable right now. Her breathing treatment is done for the night.

Even in the midst of her pain, Olivia smiled a few times tonight, which is great. And she really loves her juice. She asks for it at every opportunity—and I give it to her.