Hip Surgery (Day of Surgery)

After a long five month wait, Addison had her hip surgery this morning (Thursday the 21st). Thanks to the many, many abdominal x-rays she had in March due to her feeding tube issues, we found out that her hips were dislocated. We had known for quite some time that she was at risk for this due to her increased muscle tone. She had her first appointment with the orthopedic surgeon in April. After a lengthy discussion with him, and a couple of her other doctors, we decided to go ahead and schedule surgery. We felt that it was definitely worth it to be aggressive. Leaving her hips dislocated could have potentially caused more problems down the road (such as problems with her spine and reduced cartilage in her hip joints – which would have made fixing the problem in the future impossible).

Both of Addison’s hips needed to be relocated. We were very fortunate because she ended up requiring the less involved procedure. Basically, the surgeon only had to adjust the femur to get her hips in proper position, and did not have to do a larger incision to get to her pelvic bones. This also meant that she did not have to have a lower body cast, which definitely makes our lives and her recovery much easier. They lengthened some of her groin muscles so that they don’t pull on her hips.

Surgery itself went well, it only took about three hours (she was orignally scheduled to take about five). She was able to come off the ventilator in the recovery room. She still ended up in the PICU, because it is her home away from home. Seriously though, she has an epidural to help control her pain and with her history of breathing issues, we all figured it would be the safest place for her. She has been fairly stable after surgery. She was originally on plain oxygen, but was having some troubles with airway obstruction and apnea and after trying a few other things, she ended up on the trusty vapotherm. She has a PCA pump in addition to the epidural. She pooped all over herself at the end of surgery, so she’s getting some antibiotics just in case. Addison decided she needed to add a drug allergy to her health history, so right after they hung clindamycin, she broke out in a rash. She earned herself a hefty dose of benadryl and a steroid. She definitely doesn’t like being bothered, but she’s at least fairly comfortable. It was a pretty eventful 3-4 hours after she arrived in PICU, but hopefully she will have an uneventful night as it seems she has finally settled down a bit. Violet and Oriana had a fun day with Grandma and their first demand when we video called was to see Addison. Their biggest concern throughout our discussions about Addison’s surgery has been confirming that we will bring them to visit her. We have, of course, reassured them that we will do so and that they can see her on a video call every day. It’s been a long day, so I’m off to see what sleep I can get on the lovely couch in Addison’s room.

 

 

 

 

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Birthday Number 3

Sooo, I don’t know if y’all heard about this craziness, but the girls turned three a couple of weeks ago a month ago. I’m way behind on the blog and even on facebook updates; it’s been pretty crazy around here since May, but that’s another post. THREE! How is it possible that these girls are three?! It feels like three years have flown by, yet at the same time it feels like the past three years have taken forever. It was really fun to celebrate their birthday this year, because Violet and Oriana really started to get what it was all about. They were so excited to have a party (parties are their new favorite thing). They are slightly obsessed with the color pink right now, so we had a pink party. Since things have been so crazy, we kept it pretty simple – pink balloons, streamers, plates, cups, utensils, pink icing on the cupcakes. The girls all had pink flower clippies for their hair and we asked their guests to wear pink if they wanted to. They had a great time with all of their favorite people. Plus, they got to eat pizza and cupcakes, so they were pretty thrilled. Mother Nature cooperated and even though we had thunderstorms and hail earlier in the day, it cleared up and we had a beautiful evening for a party. They got lots of wonderful gifts. They have amazing, caring, generous people in their lives and we are extremely grateful.

They got to eat donuts for breakfast on their actual birthday, and then we took them on a walk to the park to run off all the sugar. They also got to go out to eat for dinner, which is one of their favorite things to do and something that we don’t frequently get to do any more. Violet and Oriana got to have their favorite meal from Grinders (chicken fingers) and we experienced the generosity of strangers when the table behind us paid for most of our meal. It was a really nice surprise and we appreciated it very much. It’s so easy to think about all the negative in the world and it is so nice to be reminded of kindness and good things.

I think we managed to give our little ladybugs a pretty awesome birthday weekend. They still talk about it occasionally. It’s so much fun to see all these experiences through their eyes. Thanks to everyone who helped make their birthday great!

Another PICU Stay

Well, the shit show that has been our lives since February continues. Another hospital stay. I’m so tired I can’t even think straight any more. I’m tired of the four walls of this hospital, I’m tired of shitty cafeteria food, I’m tired of our lives being in total turmoil, I’m tired of listening to my child cry, and I’m tired of not getting any answers. I’m not sure I even know what our “normal” lives were like any more. Addi has landed herself in the PICU again – I’m pretty sure it’s her favorite place; it’s starting to feel like our home away from home and we know far too many people here. Which is nice, but getting to know the ICU staff is not really a life goal that you want to strive for.

 

Addison had her adenoids removed on Friday April 28th. She did great the day of surgery and for a couple of days after. By Sunday night she was crying a lot and acting like she was in pain. She was difficult to get to sleep and she was only comfortable if she was being held. We figured it was just pain from the surgery and she just needed a few days to feel better and for all the inflammation to decrease. Monday through Wednesday were much the same – lots of crying/screaming and difficulty getting her to sleep or settle if she wasn’t being held. Thursday she slept literally all day and only really woke up in time to be fussy around bedtime. Friday I got her to take a short nap in her crib, but she woke up screaming. By the time Saturday rolled around, she was screaming and writhing in pain and was inconsolable. So we brought her to the ER. They found that she had an elevated white blood cell count, but they couldn’t figure out where the infection was – her urine was negative, neck CT was negative, chest x-ray was fine. They gave her morpine, which did nothing and versed, which worked long enough to keep her still for the CT. She had to be put on a little oxygen because all the crying was affecting her breathing and making her sats low. By the time they were finally ready to send us up to the floor, they had pretty much ignored her for a few hours, during which she had been screaming her head off because nothing I did made any difference. By the time we got up to the floor, her breathing was crap (she was retracting and working really hard), her sats were even lower and she needed more oxygen and she was still inconsolable and hysterical. They quickly called the ICU down to come evaluate her and we ended up in PICU within 30 minutes of our arrival on the regular floor. In PICU they could better medicate her and because the crying/screaming was affecting her breathing so much, she ended up on the vapotherm anyways. Basically, they have been sedating her to keep her comfortable while we try to figure out what is going on. She has as needed pain medication and IV drips of two different sedation medications. Thus far, we have not been able to figure out what is causing her pain.

 

To say that we are extremely frustrated does not even begin to cover it. It’s horrible to watch your child be in so much pain and to not be able to comfort her at all. It’s torture. We have done so many tests, but nothing has been the answer. It has been an incredibly frustrating, exhausting, emotional experience. I just want to find a reason why so we can fix it and get our calm, happy girl back.

We know a crap ton of things that this is not. It is not:

  • Reflux, EGD was normal, plus she’s been on two reflux medications for over a month now
  • Seizures, EEG was not changed
  • Even though her hips are dislocated, ortho says they are not causing this level of discomfort
  • Pancreatitis
  • Intestinal obstruction or twisting or constipation
  • Kidney stones
  • Any random fractures in her lower extremities
  • Increased fluid/pressure in her brain
  • An abscess or infection in her neck from her adenoidectomy
  • Low vitamin B12 level

 

There are two main theories we are working with now. The first is keppra rage. Apparently keppra can make you angry/irritable. This is treated with vitamin B6, so they started that a couple days ago. To me, she acts more like she is in pain, but I guess we will try it for a few days and see what happens. There is no information out there on how long people are on keppra when this “rage” starts. I asked the doctor to look into it and she was unable to find anything. When I attempted to google it, all I could find were a bunch of forums of people who are/had been on keppra discussing it, but nothing scientific. I need scientific. The second working theory is that with the damage she had to the white matter of her brain (way back in her NICU days), she could have trouble processing sensory input – everything is just too much for her to pay attention to/sort through so she is basically overwhelmed by it. There is talk of doing an MRI to see if there have been any changes since her last one, which was a year and a half ago. However, that doesn’t really change the treatment plan, so we are holding off for now. Finally, the only part of her body that hasn’t been x-rayed or imaged at all is her arms, so I asked about getting x-rays of her upper extremities just to be sure there is nothing going on there. We have been in the PICU for a week and it feels like we are no closer to the answer. She is still on the vapotherm because when she gets worked up, her breathing becomes a problem; we have been able to wean her flow a little over the past couple of days and she has been on room air for the past couple of days as well. At this point, I just want to find the cause so we can figure out how to treat it and get back to our normal. It’s crazy when you start hoping something is going to come back abnormal. She’s been miserable for so long, I would love to see her happy, content, and smiling again. As always, thanks for all your thoughts, prayers, and kind words. If you have taken the time to text or message Ryan or I, know that it is greatly appreciated.

 

Update on Addison: Take 2

Here’s a quick summary of what has been going on with Addison over the past week. I am going to attempt to hit the highlights and not get too detailed. She was extubated last Saturday (the 18th). It was a rough first few hours off the ventilator, but she worked through it. She was on vapotherm until late Wednesday night, and has been on room air since early Thursday morning. They had to treat her for withdrawal from morphine and versed; she is no longer on a narcotic, but is still receiving Ativan. It is being weaned and she will be off it soon. They have also been weaning her off the medication for pulmonary hypertension, as our insurance would not approve it and her echocardiogram was normal. She probably had some component of pulmonary hypertension exacerbated by her viral illness, but it is not a problem that they think she needs medication for at this point.

They have been questioning from the beginning of her stay whether or not she is silently aspirating her tube feeds. The doctors felt like when they restarted her tube feeds, her respiratory status worsened (they also weaned her vapotherm a lot that day, so who knows for sure). They were pushing for us to convert her g-tube to a j-tube (which bypasses the stomach and goes straight into the intestines and means continuous feeds). We were not convinced that aspiration was the problem, considering she has been doing great with her feeds at home and doesn’t regularly vomit or get pneumonia. I put my foot down and told them they had to prove to me that aspiration was truly a problem before I would consider the j-tube, as it would make our lives that much more challenging and I’m not willing if it is not necessary. We finally got them to consult GI. It basically came down to this: whether she is having delayed gastric emptying and reflux/aspiration all the time or whether it is simply due to her illness, we cannot be sure. So we decided to try a medication that helps her stomach empty faster. That was started Friday afternoon and Saturday morning she was started on slow continuous feeds. She did well for a while, but then she vomited early Sunday morning. The GI doctor suggested that we try to increase the dose of her medication and go slower with continuous feeds Sunday as she wouldn’t be able to get converted to a j-tube until today (Monday) anyways. He thought we might as well try it while we were waiting – if it helped great, if not fine. She only lasted a few hours before she vomited everything back up, so she will get a j-tube placed today. GI feels that it will be temporary, just until she fully recovers from her illness and then we will be able to trial and hopefully resume g-tube feeds. Right now, the j-tube is the safest thing for her. It will prevent aspiration and allow her to get the nutrition that she needs.

Pulmonary also finally saw her and they think she has asthma, so they have started her on an inhaler to prevent asthma attacks, and she will have a rescue inhaler and possibly steroids at home for when she does get sick. We are also looking into getting some home equipment to help us manage her at home when she’s ill and maybe keep her out of the hospital a little bit more. Violet and Oriana have been able to see and talk to Addison on video calls, which has made them super happy. They still want her home of course. Hopefully we will be transferred out of the ICU today once she gets her j-tube since she will just need monitored for 24 hours to ensure she tolerates her feeds through it. It has been a very long two weeks for all of us, but there is a light at the end of the tunnel. Unless something (else) crazy happens, it is now only a matter of days until we can all be home together again. Once again, thank you for all the thoughts, prayers, and positive vibes. They make us feel so loved and we definitely needed that over the past couple of weeks.

Update on Addison

Addison is doing much better. She still has a long way to go, but she is taking baby steps in the right direction. She has been off nitric oxide for over 24 hours now. She was started on an oral (or technically g-tube) medication that has the same effect on her lungs as the nitric oxide and they increased the dosage of that today. She is still intubated and likely will be for at least a few more days. They discontinued her paralytic yesterday, but she is still sedated. She has woken up off and on and is moving a little bit. Since she is no longer paralyzed, she was also able to get rid of the continuous EEG. She was extremely swollen from all the fluids they gave her, so she’s on a diuretic drip; that has helped a lot. Her foley catheter also came out yesterday. She is still on an antibiotic. She has been getting her home feeds (minus a little water) and tolerating them well. She was started on a course of steroids yesterday. She has ranged from 40 to 60% oxygen. They made some minor changes to her ventilator settings yesterday and had to increase her oxygen as a result, but overall she has tolerated them. They want to keep her oxygen at 50% or lower today. Her chest x-ray this morning was back to looking normal. Her wonderful nurse yesterday gave her a bath and got as much of the glue out of her hair as she could. Violet sent Addi a hair clippy the other day, so she has that in. (Because when you have three girls, hair accessories are very important; they can make or break your day).

 

Now, I’ll try (and probably fail miserably) to explain why all this happened and what they have diagnosed Addison with. I’m still trying to understand everything myself, so I’ll just hit the highlights. They think she had components of both brochopulmonary dysplasia (BPD) and pulmonary hypertension going on. From what the intensivist says, they are recently finding out that there are two types of BPD. The first type is what Violet had, where the ventilator and oxygen do damage to the alveoli. The second type is apparently what Addison has. In this type, the alveoli are not as damaged and they typically look like those in a normal, healthy newborn, but there is inflammation in the lungs. It is frequently occult for a while and shows up later on. She had an echocardiogram that was normal, but since she needed the nitric oxide, the doctor says that means she has pulmonary hypertension or at least some type of pulmonary vascular reactivity (treated the same). She was started on a steroid yesterday to help with the inflammation. Apparently both of these problems are something she will outgrow. Most children on this medication for pulmonary hypertension are off of it by the time they start kindergarten. The most important things for Addi are to: keep her healthy and avoid exposure to illness as much as possible; make sure she’s getting enough calories and growing well (which she has been); and prevent any type of aspiration. They have been questioning whether she has had some silent aspiration. She has been off her reflux medication for almost a year because she stopped throwing up and was doing well without it. She has been placed on a reflux medication in the hospital and I’m sure will have to continue it at home.

 

I’m glad to have some answers. She got very sick very fast and it was terrifying. It’s frustrating that we just saw a pulmonary doctor less than a month ago, and she said Addison’s lungs were fine. And apparently, at that time there was no way to tell that they weren’t. It just seems a little crazy that something so serious was able to sneak up on us and all the specialists she’s seen (not to mention all the time we have spent in the PICU over the past year). I’m thankful that she’s moving in the right direction. She is taking baby steps, but they are baby steps towards getting better. She’s doing everything right, we just have to let her take her time. Again, thank you all for your thoughts, prayers, encouragement and offers of help. It means a lot.

Home Away from Home

I hardly know where to start with this post. So I’ll just start. I’ll try to be coherent through the stress, anxiety, and exhaustion. The girls all got colds this past week. Oriana started it, and like always, she had a runny nose for a day or two and was pretty much over it. Violet always seems to get hit harder and longer. Of course, we were just waiting for Addison to inevitably come down with it. It hit her Saturday morning; she woke up with a super snotty nose and started spitting up lots of secretions. We attempted a tube feed, but she vomited it up pretty much immediately. I did manage to get her medications in her (which is really the most important thing). Other than the coughing and vomiting/spitting, she wasn’t doing terribly. Her breathing was fairly easy. We kept a close eye on her. Around 4 pm, she took a turn for the worse. She was really starting to struggle to breathe. I had packed our bags for the hospital that morning, so I threw everything in the car and Addison and I drove to Akron as fast as we could.

 

In the ER, her oxygen sats were low, so they tried her on a couple liters of oxygen, but she was still working too hard to breathe and her sats would not stay up. So Addison got put back on her trusty old friend the vapotherm. Her breathing kept getting progressively worse, she was really struggling and they had to keep increasing the flow on her vapotherm. By the time we got up to the PICU at about 9 pm, she was on a vapotherm of 20 liters and 100% oxygen. To attempt to avoid intubation, they tried her on bipap, but it did not help. She earned herself the ventilator. She was totally exhausted at that point, but she was still fighting them even though they sedated her for the bipap trial.

 

It was a very long night. She was on 100% oxygen for quite a while and it took a long time to find the vent settings that she liked. The doctor didn’t leave her bedside for a solid two and a half hours, and the nurse practitioner was with her even longer. It seemed like no matter what they did with the vent, she just wasn’t oxygenating well. They started her on inhaled nitric oxide to help dilate the blood vessels in her lungs and improve her oxygen level. It did help and she’s still on it. They finally found some ventilator settings she liked. It took a long time and multiple tries, but they were finally able to place a triple lumen catheter in her groin and an arterial line in her wrist. Her chest x-ray looked like she has a viral infection, and her swab just came back positive for rhinovirus and enterovirus. Her perfusion and urine output have been poor off and on, so she’s gotten several fluid boluses and she’s very swollen. As of this morning, she is finally down to 45% oxygen. She has made some improvements, but she still has a long way to go.

 

I cannot even begin to process everything that has happened. I have not seen her this sick since she was in the NICU. I have never seen her breathe like she was before they intubated her. I’m not sure in all my years of nursing I have ever seen anyone breathe like she was last night. It was horrible. I figured we were in for our usual couple days in the PICU on vapotherm, a day or two on the regular floor for monitoring and restarting feeds and then home. Needless to say, I was completely stunned by how incredibly sick she got so incredibly fast. She was fine and then she wasn’t; and it just kept getting worse. She’s at least resting comfortably now, not that she has a choice, with the fentanyl and versed drips, but she was so uncomfortable for so long, she needed a break. This gloomy weather sure seems appropriate for how we are feeling.

Another Day, Another Specialist

After Addison’s stay in the PICU in December, we finally got a consult to a pulmonary (lung) doctor. (Hey, it only took four hospital stays in nine months). They got us an appointment for the middle of January. I did like the doctor a lot. While she agreed with us that Addison’s breathing was abnormal, she did not think it was her lungs that were the problem. Her oxygen saturation, chest x-rays, and lab work are good. Basically, she said she manages to compensate for whatever is going on. She said we needed to see an ENT (Ear, Nose, Throat) doctor. (Not a surprise for me). At first, she wanted us to go to Cincinnati and see the ENT’s there because they are supposed to be the best in the country. However, she decided to do a soft tissue x-ray of Addison’s neck first. She said it was a good starting point and it might show us something. It did. The x-ray showed that she doesn’t have a lot of air moving though her trachea. They thought it was likely that her adenoids were enlarged and blocking air movement. Since it seemed to be something fairly simple, we decided to see the ENT’s at Akron Children’s. I was happy to be able to get her an appointment within a week and we saw the ENT a couple of weeks ago. He said that her adenoids are very enlarged, to the point that they are probably completely blocking her nose and forcing her to breathe through her mouth and causing the snoring sound that she always makes. Her tonsils look fine, so she just needs to have her adenoids removed. Unfortunately, we have to wait three months, as the first available date for surgery is April 28th. At least we have some answers and the process is finally started. I’m hopeful that this will help her breathing a lot. I’m hopeful that if she can get more air in and breathe easier at baseline, then when she gets sick, it won’t be such a big deal. Hopefully in the future, a cold won’t mean a hospital stay and time in the ICU. Hopefully, with her breathing being less of an issue, she will simply feel better on a daily basis and do better with all her therapies. I feel as if her breathing has gotten worse over the past month or so and that it is really affecting her energy level and her sleep. This surgery cannot come soon enough for me. I am optimistic that it will make a huge impact on Addi’s everyday life.