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.

 

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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Superkids

Yes, I have a special needs child, who is one of three. Yes, my life is hectic and stressful and my to-do lists never seem to end. I have very little “me time.” My needs almost always come last and I’m generally exhausted. But my life is also beautiful and blessed and I wouldn’t change it. But I digress from my point, which is this: I am not a hero, I am not amazing, I am not incredible. I am just a mom. I am just doing the same thing any other mom would do if she were in my shoes. You don’t know how I do it? You know what? Some days I don’t either. You just do what you have to do. When you have 3 little people depending on you, you don’t have much choice. I get through the day the best I can. Some days I do better than others. Some days I have very little patience, and some days I am calm as can be. Some days I laugh, some days I cry, some days I scream. But I am not superhuman. Most days, I’m just doing the best I can. Every mom wants what is best for their child(ren). I am no different. It is not always simple to meet the needs of a special needs child or even a “normal” child when you have more than one, but that’s what mom’s are for. Taking care of our kids is what we do best. And that’s really the point – I am just a mom, doing the best I can and hoping that it is enough. I worry that I neglect Addison because Violet and Oriana are more vocal and mobile. I worry that I haven’t had the time to do therapy exercises with her or put her braces on. I worry because there are days I don’t get to sit and hold her and she likes to cuddle. I worry that I neglect Violet and Oriana because simply feeding Addison and giving her medications is so time consuming. She needs positioned, she needs to stretch, she needs her braces put on, she needs to do tummy time, she needs a lot. The vast majority of the time it feels like nothing in our lives is simple. Doing anything with three little ones in complicated. Plus, we have to time things around Addi’s tube feeds or take all her feeding supplies with us. She sees a whole team of specialists every three months, plus regular pediatrician appointments and weekly physical and occupational therapy. Like I said, the to-do lists never seem to end. But seeing that little girl make even just a little progress is totally worth it. Plus, there’s nothing better than when she looks right at me and gives me one of her rare smiles. Seeing all our girls grow from tiny little preemies to mostly healthy, and definitely happy, almost 2 year olds has been amazing. So, the point is, my kids are awesome and inspirational; I am not. I’m just hanging on by a thread, hoping to make it through another day. Don’t take this the wrong way; I know people mean well when they say these things. These are just some of the things that run through your brain when you hear theses phrases said all the time. I’m just telling you how I feel about it all. And it’s not me you should be in awe of.

Here We Are Again…

Well, we didn’t get to stay away from the hospital for as long as we were hoping. We thought after Addi got her g-tube, we would get a nice reprieve from spending all our free time at Akron Children’s. But, the universe had other plans. I had some lovely respiratory issues last week (cough, tightness, congestion, fever). It took me about a week to get over it and I have been worried sick ever since that the girls were going to get it. (Can you say self fulfilling prophecy?). Addison was coughing a little bit on Monday and Tuesday, but nothing major and was otherwise acting fine. Wednesday, she started to go downhill. She was very congested, she was coughing a lot, and she was sleeping a lot. When she was awake, she was fussy (very unlike herself). Her temperature ran low all morning; she never runs very high, but it was low even for her. She looked pale and sounded like she was having a hard time breathing. So we decided to take her to the ER to get checked out. And it is a good thing we did. She was a little bit wheezy when we first got to the ER, but it seemed like the longer we were there, the worse her breathing was getting. Her oxygen levels started to drop a little bit, so they put her on regular oxygen. That didn’t really seem to help, so they decided to use vapotherm, which lets them control the flow and concentration of oxygen (right now she’s on 40% oxygen and 10 liters; I know that will mean something to some of you). They did a chest x-ray, blood and urine cultures, and swabbed her poor little nose for every respiratory virus in the books. Since she required so much oxygen she got to be admitted to the ICU instead of a regular floor. She had her whole ER team worried for a little while.
The chest x-ray suggested that she might be in the very early stages of pneumonia. Her flu and RSV swabs were negative. Her urine looked good. They think she probably just has some type of viral infection. With all her chronic problems, she doesn’t have a lot of reserve left over to fight it off. So, we are basically just doing supportive care to help her through it. She’s on IV fluids, an antibiotic, a steroid, and an albuterol inhaler. They are not feeding her right now. At this point, it is kind of a wait and see what happens situation. The doctor said it is possible that this will be the worst she gets and it is also possible that she will get worse before she gets better. He said these viral illnesses tend to peak around day 4, and we are just now going into day 2. Hopefully, she doesn’t get much worse. I would hate to see her on the ventilator again. This vapotherm is causing enough flashbacks to our time in the NICU as it is. She had a fairly quiet night and was able to get some rest. Her breathing was up and down through the night. She will have a few minutes where it is normal, and then it will go back to rapid and labored again. At least she was able to rest, and she seems to be holding her own so far. We will see what today brings. I definitely see lots of coffee in my future. Thank you all for all the thoughts, prayers, and positive energy being sent our way. I’ll let you know how things are going later today.

Addison Update (March)

Addison has seen all of her specialists over the past few weeks; it has been a little busy on the appointment front. The good news is, we don’t have to see any of them again for 3 months, so hopefully it will be relatively calm until June. Here are the most recent developments:

  1. Gastroenterologist: The GI doctor and nutritionist were pleased with Addison’s growth and weight gain. We ran out of her reflux medication a couple of days before the GI appointment, so we decided to just discontinue it. Addison has not thrown up a single time since she started her seizure medications, so we don’t feel that reflux is a major problem for her anymore. She has had no problems with reflux since stopping the medication. I am all for having one less medication to give and refill. Plus, it was not covered by our insurance, so it was pretty pricey every month. They decided to increase how much formula and water Addison got each day, so we had to adjust to a new feeding schedule. She now gets 3 bolus feedings during the day. Her feeding still runs over night, it just runs a little bit faster since it’s a larger volume. My main question was whether or not we could try bottle feeding again. It has been so long since she took anything by mouth; I was concerned about her forgetting how to eat orally. The GI doctor said it was ok to try bottles and see how she does. She didn’t feel that a repeat swallow evaluation was necessary because Addison is developmentally much the same as when the first one was completed. Let’s just say, she did not get any better at eating out of a bottle!
  2. Physiatrist: My list of concerns to address with the physiatrist boiled down to a few main things this time: 1) Addison’s hamstrings have been especially tight, which we have noticed in PT a lot, 2) along with that, she has a lot of spasms in her legs, and 3) attempting to feed her out of a bottle was not going well. He decided to increase her baclofen (muscle relaxer) just a little bit. His concern was that the baclofen can make her more likely to have seizures. We knew that she could tolerate 5 mg three times a day very well, but you never know how it will go when the dose is increased. He considered starting her on a different medication (like valium) in addition to the baclofen, but we decided that the best course of action would be to see how she did with the increased dose first. If she doesn’t tolerate it, then we will have to lower the dose back down and add an additional medication. So far, she has done ok. He gave us a referral to see speech therapy again; hopefully they can help us figure out how to help her drink from a bottle this time. He also felt that she needed a splint that helped hold her fingers out straight. She currently has hand splints that just hold her thumb out, but they just aren’t quite enough. Our OT measured her for the new splints last week, so hopefully these ones won’t take two months to get here like the last ones. He also ordered her AFO’s to hold her ankle and foot in a neutral position, which should help the spasms in her legs. They came and did casts of her legs in PT this week, so those braces are in the wir
  3. Surgery: Addison had her 6 week post-op follow up at the G-tube clinic. They measured her to make sure her tube was still the correct size for her, and then we changed it for the first time. She had no problems and they said her site looked great.
  4. Neurology: Addison had another EEG and appointment with her neurologist. The EEG techs say she spoils them because she’s so good about getting all the electrodes put on. Her neurologist said her EEG was stable, no major changes from last time. He feels that her seizures are controlled (and I agree). He did not change any of her medications, and when we see him in 3 months, we do not have to get an EEG!
  5. Eye Doctor: Since Addison is on Sabril for her infantile spasms, we have to follow with an eye doctor every 3 months (because a side effect of Sabril is vision loss). She has been looking around a lot more, making more eye contact, and tracking things a little bit better. Her eye doctor agreed, so we do not have to do any further testing, unless we notice any changes. So far, she has improved with her vision and development since her seizures are controlled.

It is kind of nice to get all the specialist appointments out of the way within a two week time frame. We did not find any major issues or concerns; it is awesome when we just get to keep doing what we are doing. It is nice to feel like Addi is making some progress for a change!