Hemangioma Post-Op

by Kayte

We were supposed to go to the doctor’s office for Max’s post-op followup, but Brody’s work schedule got messed up and we wouldn’t have been able to get Max to the doctor without also pulling Lola out of school. The doctor’s office offered to do the post-op over the phone, so I snapped a few pictures of Max’s recovering scar and emailed them to the doctor who said everything looked great. I spoke with a nurse on the phone who went over all the technicalities, including the fact that the biopsy of Max’s hemangioma came back negative, and she told us that we were in the clear.

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Post-Op Recovery

by Kayte

We are 3-days post-op from Max’s hemangioma and Lola’s ear tube surgeries. Max is doing so great that sometimes we forget he had surgery and accidentally pick him up by the armpits. But he says otherwise it doesn’t hurt and hasn’t asked for any pain medication. He’ll be good to go back to school tomorrow.

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Lola has had a pretty persistent cough since Friday, and over the weekend she developed a fever that spiked at 103.8* – yikes. We called the ENT doctor on-call at the hospital, but he didn’t think it had anything to do with the ear tube surgery since it is such a simple procedure. The degree of fever doesn’t necessarily correlate with degree of sickness either, and her fever responded well to Tylenol, so we’re just watching for now. Lola’s been sleeping more during the day, but super alert and acting like herself when awake, so we’ll see. Doctors always say to look at the patient, not the numbers.


Double Surgery

by Kayte

Today was the day of Max’s hemangioma and Lola’s ear tube surgeries. We weren’t sure if scheduling them on the same day was crazy efficient or just plain crazy, but it ended up working out really well. They were both scheduled for around two in the afternoon, and we were able to all stay together during pre- and post-op. Surgery was an hour late, Max slept for two hours post-op, and we ended up driving home in rush hour traffic; so we’re really glad that we only had to do this whole thing once.

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Max and Lola were both amazing – there was no fuss and they both just went along with the flow. They each drank a shot of Versed (a sedative, aka “Happy Juice”) before surgery so that helped when it came time to take them away for surgery. Max’s medicine took effect right away and he got pretty goofy. Meanwhile Lola got super agitated and kept trying to climb out of bed (which she couldn’t do because the medicine makes them tippy). Different personalities shining through.

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Lola’s surgery only took a matter of minutes – we had barely sat down in the waiting room before the doctor came to talk to us. He said everything went well and they got a lot of thick, syrupy liquid out of Lola’s right ear. She’s on antibiotic ear drops for a few days, but otherwise back to normal activity. Max’s surgery took a little longer, but only about a half hour. The doctor said the incision ended up being a little longer than he anticipated, but it still shouldn’t be too bad of a scar. Max’s incision is closed with absorbable sutures, medical glue and covered in a skinny piece of derma-bond so we can’t see much, but it should be pretty healed up in two weeks when we go back for our follow-up appointment. Max is supposed to stay home from school tomorrow and take it easy, but back to regular activity after that.

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Very glad to have these two surgeries out of the way with relative ease!

Max
Weight: 37lb 8oz
Height: 41 inches

Lola
Weight: 29lb 11oz
Height: 40 inches


Flat

by Kayte

Everyone got an amazing night’s rest last night. Lola went to sleep at her usual bedtime and slept through the night. Max actually cried more than she did. I know Lola has been through an exhausting ordeal, but I expected at least a couple nighttime interruptions. Maybe we won’t revert as far back the timeline as I originally thought.

One of the most challenging things has been following the doctor’s order to keep Lola lying flat all weekend. They don’t want her to sit up and cause a drastic pressure change in her head. It’s a little disconcerting because her fontanelle doesn’t feel sunken like it has after past surgeries. Since that’s always been our reassurance that the shunt it working, it’s making us a little nervous. But this was a different kind of surgery, and maybe a less drastic change is a good thing.

Lola is sick of lying down and desperately wants to be allowed in a different position, but not until tomorrow. Until then we’re finding creative ways to keep her horizontal while still doing normal things. We surrounded her with toys for playtime, reclined the stroller to take her for a walk, and created a mess-zone for eating. She’s got a good appetite for both bottles and solids, but it sure isn’t easy to feed her lying down. Just a few more hours to get through until Monday.


Homeward Bound

by Kayte

We got our discharge orders this afternoon and were on our way home by three. We spent thirty hours overnight in the hospital for brain surgery. It’s a little dizzying to have her back in our care so quickly after such an ordeal.

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Of course we’re glad to have everyone back under one roof. We just hope she continues to do well. We have a couple followup appointments scheduled so the responsibility doesn’t feel as overwhelming. We see the pediatrician this upcoming Wednesday and neurosurgery the following Tuesday.

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She’s Back

by Kayte

I don’t know how this girl can be so happy having just undergone surgery, but Lola is one smiley, giggly little baby. 20130720-113955.jpg
We both got a pretty decent night’s rest, considering the location. She’s taken a few bottles, and we’ll try solids soon. Neurosurgery came by and though she was doing great. Things are looking good for a smooth discharge. 20130720-114244.jpg
We had a little FaceTime with Max & Daddy this morning. Hopefully we’ll see them in person very soon!


Sleepover

by Kayte

We finally made it to our room. They said we were lucky – some people didn’t get beds tonight. And it’s a nice one too. Totally private with its own bathroom and shower.

Lola is doing amazingly well for being just a few hours post-op. We’re having a regular giggly girls’ night over here.

Meanwhile I’ve been up since 5am dealing with stressful hospital/surgery stuff. Time for some well-deserved rest. Goodnight!

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Recovery Floor

by Brody

Lola is out of surgery and on the recovery floor. We’re waiting for a room to open up, but the hospital is really full today so it might be awhile.

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We spoke to the doctor and he said everything went well. He was able to make four holes in the cyst(s) walls. The catheter in her head wasn’t draining at all – he thinks the cyst wall got sucked into the end and was blocking it. The tube in her tummy was draining fine so they just left it as-is. Only one incision – whew. That’s our definition of minimally invasive.

The doctor said the cyst walls are currently like tissue paper floating around in water. In time they should shrink back and attach to the walls of ventricles. In the mean time we have to be on the lookout for the the “tissue paper” blocking the shunt. He didn’t sound very certain that we wouldn’t have to do a shunt revision in the future, but we hopefully took care of the root of the problem. Which is a good start. Or a restart. For now we’ll just let her recover and do another MRI in a month or two to check things out.


The Waiting

by Kayte

20130719-150953.jpgWe got to Children’s Hospital at nine this morning.

20130719-150959.jpgChecked into admitting and did all of our pre-op labs.

20130719-151004.jpgThey took her into the OR around 1:30pm.

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Endoscopic Fenestration

by Kayte

Lola is scheduled for surgery at CHLA next Friday. They are going to perform a procedure called endoscopic cyst fenestration (ECF). Using the existing shunt tract, they will insert a tiny camera/instrument into her ventricles and create holes in the cysts (yes, there is more than one). This will allow the trapped cerebral spinal fluid (CSF) to flow freely within her ventricles and out through the shunt. Think of the cyst like a water balloon in a glass of water, and the shunt like a straw in the glass. If you try to drink out of the “straw,” you can only drain the “water” in the glass on the outside of the “balloon.” The neurosurgeon is going to create holes in the “balloon” so all the “water” will be accessible to the “straw.”

Although the two neurosurgeons we met with had different opinions on the matter, we feel that ECF is the less invasive procedure, and the one more likely to be successful in the long run. ECF will directly address the problem(s), whereas a second shunt would only be managing the symptoms. And because ECF will be using the existing shunt tract, hopefully there will only be one incision on her head (as long as they don’t have to adjust the tube in her belly). A second shunt would require at least two incisions (head & abdomen) and drilling through bone & brain matter. Not to mention that the second shunt would leave us with the uncertainty of additional permanent hardware.

There is always the risk that the cyst could heal itself and reform, at which point we would have to decide whether to try ECF again or to place the second shunt. But if we did the shunt now, there is always the risk that it would malfunction and we would be back in surgery anyway. There are no certainties, and no right answers. We just do the best we can with the circumstances we are given.


Dualing Surgeries

by Kayte

What a crazy morning. Woke up at 4:00 and on the road by 5:15. Dropped Brody off at St. John’s an hour early at 5:45 and rushed to UCLA in case they actually took her down on time. Lola was scheduled for 7:30 and Brody was scheduled for 8:15. Of course both surgeries were late. Got to hang out with Lola and hold her for an hour. Finally took her down at 8:15 and Brody went in at 9:00. They were both finished around 10:00. Quickly saw Lola when she came back up before I ran back over to pick up Brody.

Both surgeries went well and both patients are sleeping. Lola is intubated for the time being – they’ll work on getting that breathing tube out over the next day. Brody is pretty groggy and still figuring out the crutches. It’s going to be a long six weeks.

Eating lunch and pumping now. Maybe a shower? Then off to visit Max. More later.


Back to the OR

by Kayte

Can we just go to sleep and someone wake us up when this is all over?

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At midnight last night Lola’s nurse noticed that the wound on her head had separated and the reservoir was exposed. This morning Lola was re-intubated, anesthetized and sent back down to nuerosurgery. Since the incision site had been compromised for infection they removed the entire reservoir. While they were in there, they drained 25-33ccs (about an ounce) of fluid from her brain. They’re hoping that will buy us enough time to get her up to 1,800 grams (4 pounds) when she’ll be big enough to have the permanent shunt placed. They sent the CSF (cerebral spinal fluid) to culture for infection and noticed that it contained organisms. We’ll have final results in 3 days. She’s still on antibiotics and her white blood cell count was better today. Lola came back from surgery wide awake and stable. She was supposed to get her follow-up eye exam done today, but they re-scheduled for tomorrow morning. If the ROP has gotten worse they may do the laser surgery right then, which will be easier since she’s already intubated. She was back on half-feeds (4.5ccs per hour). They’ll probably extubate her tomorrow if she’s doing okay.

Max is up to 5 pounds – big boy! He was doing pretty well on the vent, just resting and letting it do most of the work. He’s getting 30bpm at 28%FiO2. He hasn’t had any more of his bronchospasm episodes. He did have a few severe desats (into the 40%s) and has lots of secretions in his lungs. A tranchea culture showed that the eye/nose pseudomonas infection is also in his lungs. The lung x-ray looked very hazy and it’s possible that he has pneumonia. The antibiotics he’s already on should treat everything, but it’s making breathing hard. His hematocrit had been low and they finally transfused him today – 33ccs. Afterwards he didn’t have any more severe desats so we think it helped. They started him back on small feeds, 10ccs every three hours.


Ommaya Reservoir

by Kayte

Lola’s surgery today was a big success – the ommaya reservoir is in place and her excess brain fluid can now be tapped safely and at will. She handled the surgery like a champ and has been doing really great all day. Heart rate is down and all of her other clinical signs look great. They did a couple chest x-rays which continue to improve each day. She really looks and seems so much healthier. Now time to catch up to her brother!

Max is still extubated, though struggling. Clinically all of his vitals are good, but the CO2 in his blood gases has been creeping up. Despite that they’re pressing forward thinking if he can just get over this hurdle he’ll make it this time. They’ve played with his vent settings to give him extra help as he needs it and are watching him closely. One of the main benefits of being extubated is that his mouth is free to suck on a little preemie pacifier. He loves it and looks so cute with it in his little mouth. Sometimes babies can’t handle the coordination of sucking and breathing at the same time, but he seems to be able to multi-task. Feeds are still going well and he’s up to 5ccs every 3 hours. He’s on a record 36 hours extubated and 4 days in a row of feeding. Go Max go!


Success

by Kayte

Lola is back from surgery! Everything went really well. They got about 10ccs of fluid during the procedure which is about the max amount they would ever take at one time. That means there was a little bit of pressure, but not too much. She’s still heavily sedated but looks peaceful and is getting some well-deserved rest.

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Neurosurgery

by Kayte

They just took Lola into the OR – it will be a few hours. Be strong, babygirl!

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Oh, Thursdays

by Kayte

We’re 0 for 4 on Thursdays so far… 1) Emergency c-section, 2) stomach perforation & surgery, 3) swollen ventricles & transfer to UCLA and now 4) PDA surgery. *sigh* Maybe we can find a way to skip this day of the week from now on.

At least the doctors were very pleased with how Max handled the surgery. They said his levels stayed stable like a champ. When they got in there the ductus was even bigger than before so it’s a really good thing he had the surgery – it never would have closed on its own. Max has a couple days of recovery on pain meds (fentanyl) and antibiotics, then hopefully he’ll be able to make some good progress on the ventilator and feedings. As you can see in the photo below he’s got a pretty good battle scar going on, but the nurses said it won’t be too noticeable when he’s bigger.

Since of course this is Thursday, Lola had a pretty bad day. This morning her heart rate shot up in the 200s and gave the doctors a scare. They weren’t sure why it happened, but gave her a blood transfusion which seemed to help a little. When I visited her in the morning she still seemed pretty agitated – twitching around and levels all over the place. Brody visited her this evening and she seemed to be doing a little better. My poor baby girl…we need her to get bigger and stronger like her brother.


Patent Ductus Arteriosus

by Kayte

Max hit another snag today. The open valve (PDA) in his heart never closed like they were hoping, so they have to perform surgery tomorrow. We met with the cardio-thoracic surgeon (“The Man” according to the nurses) who explained that he will put a titanium clamp on the valve to close it and correct the blood flow. This is another common procedure with preemies, but again that doesn’t make it much easier when it’s your little guy. The PDA is affecting things like Max’s breathing (fluid in the lungs) and feedings (not enough oxygen to the intestine) so once the procedure is done we will be able to move forward with progress like taking him off the ventilator and feeding him breastmilk.

Lola is about the same. Her head circumference hasn’t increased (yay!) and they’ll do another head ultrasound tomorrow. Today was her last day of antibiotics and if her blood cultures come back clean in the next couple days she’ll be done with those. She’s tolerating the breastmilk very well and they’ll increase her feedings to 2ccs every 3 hours tomorrow if everything still looks good. Let’s hope she stays stable over the next couple days while we focus on Max.


Peritoneal Drain & Broviac Catheter

by Kayte

Well we had our first “setback” day today. As advertised, it sure wasn’t easy, but all four of us got through it a little better for the wear.

We got a call from the NICU this morning that Max hadn’t tolerated the breastmilk very well and his tummy was distended. They suspected the cause was a small hole in the intestine that was leaking air and fluid into his abdomen. They called in a specialist from UCLA who made a small incision in his tummy and inserted a drain tube to get all the gunk out. They will leave the drain in for 1-2 weeks and monitor the drainage, hoping the hole in the intestine will heal on its own. In the meantime he won’t be getting any more breastmilk but will be “fed” all his nutrients through an IV. Both the ailment and the procedure are fairly routine and normal, but that isn’t a whole lot of comfort when it’s your little guy who’s suffering.

While we were dealing with all of that, they informed us that Lola’s PICC line was unsuccessful for the second time yesterday. After the UCLA specialist was done with Max, the ended up doing a broviac catheter for Lola in a bigger vein in her neck. It sounds scary, but is also fairly routine. The most important thing is that the procedure was successful, which means they won’t have to keep sticking her for new IV lines every time they need to administer/withdraw fluids. They said the catheter will most likely remain there until she goes home.

I just got off the phone with the nurses (who are amazing, btw) and they said both babies’ vitals are good, which means they tolerated both their procedures very well. Max had to have a small blood transfusion to replace some of what was lost during surgery, but other than that they’re both doing well considering they had such a rough day.

Things I am thankful for today:

  • They caught Max’s distention ASAP and were able to get the drain in before anything bad happened.
  • Lola now has her permanent IV line which will make a lot of things much easier (and safer) for her moving forward.
  • Both of these things happened on the same day so we only had to deal with ONE bad day instead of two.

Here’s to hoping tomorrow is a “stable” day – no news is good news!