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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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.

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.

She’s a Fighter

I have been thinking a lot about Addison and how far she has come this past week. The month of October always makes me think about our little peanut and all she has been through. Two years ago, she was extremely ill and was transferred to Akron Children’s from the NICU at Aultman. In some ways, it has been a very long two years. She has been through so much since she was born and I am so proud of her and all the progress she has made. She’s a little fighter and she just keeps powering through everything that life throws at her. As I sit at her bedside typing this during yet another hospital stay for respiratory problems, I am just amazed by this girl. This is day number three of her not feeling well (wheezing, coughing, labored breathing, etc). We came to the ER at 7 pm Thursday and she didn’t get settled and get to go to sleep until midnight. She missed a feeding; her meds were way overdue. Between 7:30 am and noon Friday, she had projectile vomited, been deep suctioned twice, assessed at least a dozen different times by doctors and nurses, given a breathing treatment and inhaler, and just generally irritated and not left alone, and yet she was still smiling at me. She has always been such a sweetheart.
Addison was transferred to Akron Children’s on October 6, 2014. That day (and the surrounding days) were some of the worst days of my life. I can honestly say, I have never been so terrified as I was during that time period. Addi was so sick and my heart just dropped to my feet the moment NEC was mentioned. Knowing your child’s life is in danger is the worst feeling; there are no words to describe how that makes you feel. I don’t think it even fully hit me how terrified I was and how very ill she was until after her surgery. I remember the surgeon coming to talk to us about the surgery and he walked us down to the NICU so that we could see her. They were still getting her settled so he left us in the hallway to go check on her and see if they were ready for us, and I remember I completely lost it at that point. I just started crying hysterically. I was so relieved that she made it through the surgery and he was able to find and correct the problem. In that moment, the switch flipped and all those emotions I had been holding back came rushing in. It was a long eight weeks after surgery until she could go back and have her ileostomy reversed. She struggled with feeds and dumping all her nutrition out through her ileostomy. The ileostomy constantly leaked; it was impossible to keep a good seal around the bag. She went through morphine withdrawal. We all made it through and she learned to take bottles very quickly. Of course, being so premature and so ill did not leave her unscarred. She’s made it through it all like a champ though. She has always been a happy, content baby. The only time she cried a lot was when she had undiagnosed seizures. She’s taken it all in stride: vomiting, surgeries, NG tubes, radiology tests, bloodwork, muscle spasms, physical therapy, occupational therapy, seizures, and hospital stays. This girl has to work so hard for simple little things like holding her head up and standing. Every little grin she wears makes my heart so happy. I am so proud of her and how far she has come in two years. Two years ago she was on the ventilator, in an isolette, trying to recover from her first surgery and having a rough time of it. While we are in the hospital yet again two years later, she is in a big girl crib and cooing and smiling at me and just generally being adorable and getting all the nurses to love on her. She can hold her head up so well lately. She can stand with her leg braces on in a stander and she can take baby steps in a gait trainer. She loves doing speech therapy and getting tiny little tastes of different things. She makes eye contact and loves watching her sisters. These may seem like such little things, but for her, they are huge steps. She just keeps going and trying and smiling. All our girls are miracle babies and I’m so incredibly proud of them. Addison has just had an unfairly difficult life thus far, and I hope it keeps getting better for her. I hope that in two more years, I will be able to look back and see an incredible amount of progress again. I’m incredibly grateful that she has been able to overcome so much. I’m thrilled that this was a short hospital stay and that I get to take her home today so that we can feel like a family again. Mommy loves you Peanut.

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Addison after her first surgery two years ago. She looks so awful.

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Addison during this hospital stay.

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Update: November 9th-December 8th

I don’t know about you, but it has been a crazy month for us! Mostly little Miss Addison keeping us hopping as usual. We saw her physiatrist on the 4th. We had been questioning whether or not she was having seizures for a few weeks at that point. After explaining what she was doing and showing him a video we had recorded, the physiatrist felt that there was a strong possibility that she was having seizures so he ordered an EEG. (Of course, her neurologist had been out of the country, and they had to reschedule our December appointment for January. I figured that they physiatrist was as good a place to start as any). Addison also had a GI appointment on the 11th. She is gaining both weight and height. She had still been throwing up almost every morning though. We decided that a g-tube with a nissen surgery to stop her vomiting would probably be the best option for her right now. The GI doctor said that even though she’s growing, we don’t want her throwing up so frequently due to the risk of aspiration. We just needed to see the surgeon to see if he agreed with a g-tube/nissen and to get everything scheduled. I was super excited because we were able to schedule an appointment with her surgeon for the following Monday (the 16th). Mommy is definitely sick of this NG tube! Addison had her EEG on Thursday the 12th. She did really well with getting all the electrodes put on. I was hoping we would get the results quickly, but we got them much faster than I bargained for. I got a phone call from her neurologist at 9:30 Friday morning, telling me that her EEG was abnormal and we needed to bring her to the hospital to be admitted. (It is never good when the doctor is the one who calls you)!

 

I feel like there was a ton of information thrown at us while we were in the hospital. It basically boils down to this: Addison was having a particular kind of seizure called infantile spasms. From what I understand, this is a relatively rare diagnosis. Infantile spasms do not respond to typical seizure medications; they are treated with steroid injections or an oral medication call Sabril. Of course, the steroids have all kinds of nasty side effects, on top of requiring injections. The Sabril is a fairly new medication and its main concerning side effect is loss of peripheral vision/tunnel vision. The doctors thought Sabril would be the best starting point for Addison. There was a lot of paperwork we had to sign due to the risk for vision loss. At first, it was terrifying to think about giving our child a medication that could affect her vision, but after doing a lot (and I mean a lot) of research the day she was admitted, we felt much better about it. The chance of losing some peripheral vision is an acceptable tradeoff for protecting her brain function so that she can learn and develop. The Sabril has the potential side effect of drowsiness as well, so they increase the dose slowly and they wanted her hospitalized through the first dosage increase so they could monitor her response. She had a couple of days where she was high as a kite and would just lie in her crib and smile at everything and nothing. That passed, and she has responded very well to the medication. It does not make her drowsy and her seizure activity has lessened a lot. She is also far less irritable and much more content. She has to have regular eye exams while on the Sabril. I think she will be on it for about 6 months. Since she will also be at high risk of difficult to control seizures after we treat the infantile spasms, she was also started on keppra while we were in the hospital.

 

We, of course, will be following closely with her neurologist. Today was her first follow-up EEG and neurology appointment. Her EEG was still abnormal. I don’t think it was quite as bad as the first one, but the doctor said that she had abnormal brain activity while she was sleeping, and none while she was awake. Her seizures have decreased a lot, but she does still have them occasionally. He increased the dosage on her keppra in the hopes that it would help a little. He said if necessary, we can increase the dose of the Sabril. She will have another EEG and doctor’s appointment in January.

 

We had to cancel the appointment with her surgeon because she was in the hospital. I am sure that we won’t get a g-tube until the New Year now. We did check with the neurologist today, and he said neurologically there were no contraindications for surgery. The good news is that Addison has only thrown up once since we have been home from her hospital stay. These seizures were affecting her in so many ways. Hopefully, now we will be able to just get a g-tube and there will be no need for the nissen surgery. Did I mention that I am so done with the NG tubes?!?

 

Violet and Oriana are still cruising right along. They are getting very close to walking. We see the pediatrician next week and should be taking them off formula this month. I am planning on doing a little individual post on both Violet and Oriana, so more to come soon.

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Addison

Hey everybody. Quick update on Miss Addison. We had suspected for a couple of weeks that she was having seizures. When we saw her physiatrist, we explained our concerns and showed him a video of one of her episodes. He felt that seizures were a strong enough possibility (especially considering her history) that he ordered an EEG. We had that done yesterday (the 12th). I was getting more and more concerned because her “episodes” were getting worse and more frequent. I got a phone call this morning from her neurologist. It’s never good news when you answer the phone and it is a doctor calling. He said her EEG was abnormal and that we needed to bring her to the hospital to be admitted. So after running around like a crazy person to pack a bag for me, a bag for Addison, make phone calls, take a shower, and find someone to watch Violet and Oriana, we got ourselves a room at Akron Children’s. I’m just going to hit the highlights here; more details to come at a later date. The neurologists think that she is having a specific kind of seizures called infantile spasms. They do not respond to typical seizure medications. There are basically only two options for medications; of course both have concerning side effects. One is a steroid injection and the other is an oral medication. The side effects for the steroid are much more serious, so they recommended the other medication and that is what we have decided to try. Because of the possible side effects, there is only one place in the country that distributes this medication, so we had to fill out a bunch of paperwork and the medication has to be overnighted to the hospital. She will start it tomorrow. We will most likely be here for at least a few days to see how she reacts to the medication. The most important thing is to stop the seizures so that her development and brain are not negatively affected. It is so difficult to decide to risk serious side effects, but it is a chance we have to take to protect her brain. Hopefully this medication works and we don’t have to try the steroids.