Clausen in the Hausen & out in the Garden: April 2013

It has been three years. Since Dr. O performed a valgus osteotomy to medium boy's right hip.

In February, Small appeared out of nowhere (or so it seemed) refusing to walk. To make that long story short, he had been climbing around on his bed and whacked it in the side board sliding off, but we didn't think it was that bad. So we waited a day or two and watched for him to begin walking normally. Two days and he did not. Refused to weight bear. At all. Lovely visit to ER and Dr. O, and a cute red "flash" cast later. He had a stress fracture on his femur above the knee and on the tibia below the knee. Huh. I mentioned to Dr. O that Medium had a pronounced funny gait and was toe walking. She said to bring him in when we came to get smalls cast removed. Fast forward four weeks.

She took a checkup X-ray of medium (while the techs removed smalls cast) and came in and stretched mediums legs a bit and announced that he should have physical therapy to stretch out the muscles and help stop the toe walk, possibly an AFO brace to help. We finished up talking about both boys and she said "let's step into the hall and we can look at the X-ray on your way out." We. Were. Done. Or so we thought. Walked up to the X-ray machine and we all looked and (it was so obvious) we all turned our heads as we looked, huh. She turns and says "we'll, we have two options". Medium turns to me and says "mom, what does she mean? " I said to him, " it means you have to have surgery, and there are two choices, pinning or or fusing your hip". And he takes a deep breath, sucks in the fear and says"Before or After my birthday?". What a brave little guy. Okay maybe the conversations were a little longer...that was the summary. Now, on to the real story...

The surgery story...
Whirlwind. Blur. Funny how sitting and waiting is so tiring.

Arrived at hospital (Mercy) at 7 am. Checked in, got medium ready, talked with doctor and staff, he went back to surgery, got update calls from operating room, I updated FB frequently, talked with doctor, went to recovery and then straight up to room.

Surgery went well. Took a good hour longer than expected, simply due to Dr. O having a very hard time chipping the old plate out. Medium also lost a lot of blood due to plate removal. Noted in my brain. Wished at this point I had donated blood, Dr. O said it was too late now, b/c it takes two days+ for them to process and be able to use mine. (now I wish I had gone and done it Wednesday, perhaps Friday he could have had it!) It is explained to me that the blood loss has given him low hemoglobin and crit counts. Dr. O tells me she wants to monitor it, and stay away from transfusion, if possible, due to risks. Tells me the lowest number she would let the bloodwork counts get, especially if it were her child. She believes medium looks good, considering. I agree. And I would not want a transfusion for him (unless I donated and then, maybe)

In room. Medium begins to throw up (probably from anesthetic) and continues to do so every five to fifteen minutes for the next. Seven. Hours. Each time sitting up (thereby bending at the hip). There is not yet a cast or a brace. They will come the next day to make an orthotic brace to protect it. He has had and is given more iv anti nausea meds. Not working. Hubby goes home to other children, I stay the night. I tend to my poor little sick guy. Nurses come in and out, giving him pain meds anti nausea meds, taking vitals, etc. I lie down, only to jump back up repeatedly and simply care for my guy. It's what we do. He is hurting and I hate that. A bigger problem is that he keeps telling the nurses his pain level is fine. I keep advising them to give him the meds anyway, that he has a high pain tolerance, but that he is hurting. Night nurse catches on when he has refused for a long time and then is shaking he hurts so bad. She passes on the info to the next nurse.

Thursday morning brings an orthotics tech to cast for a brace. The nurses gave iv meds ahead of time, to help with the pain. We are offered two options, they can stand him up and cast or do two half casts, lying down on his back first and then flip him over and then cast the other side. I heard the word "flip" and knew he would not lie on his stomach this soon out of surgery. Standing. This was his first time vertical since surgery. Dizzy and Nauseous, oh my. Little did I know that there would be two nurses, my hubby supporting him and then the tech, casting and cutting off the cast. And it turned out all wonky, because he was not supported well. (why didn't they prop his armpits with crutches?) anyway... they tell me it does the job of protecting the hip, so whatever. Orthotics leaves, Medium throws up and has more pain meds and anti-nausea meds and we make our way through the afternoon, trying to get him to keep fluids and crackers down.   Late in the day Dr. O shows up, talks with us about how he is doing. We all feel like he is progressing forward, still has okay color, another night in the hospital would do him good. I keep thinking he will keep down what he ate/drank last. She wants to check his levels again, which seem to be dropping (he was at 6.7 and 20.2). With his severe anemia, she is in no hurry to send him home. He is pale, still throwing up, he is dizzy and has a headache. Never mind the hip pain. IV pain meds should help with that. Except they cause more dizzyness and throwing up. We are in a vicious cycle of him not keeping food or fluid down and basically crying because he feels terrible. The headache is the worst part, for him. and crying does not help that either. My poor little guy. and he just wants to go home.

Thursday night brings hourly checks on pulse ox and various other things. His numbers are low and everyone is worried.   Except me. We had a word before we knew he was having surgery the "He will be fine". and I believe it. I know it is true. We had a 5am blood draw. Crit and Hemoglobin.

We expected to go home on Thursday. One night in the hospital after a femural osteotomy, that was the expectation and our previous experience. Tall had taken off work Wed and Thur to help with the other medium and small boys. Tonight I have to text and find someone to cover tomorrow day, so Tall can go to work and Hubby can be at the hospital to help with brace fitting and general care of our medium boy and be there to bring him home.

Friday morning the orthotics guy shows up early with the brace. Hubby arrives as orthotics guy is getting ready to put it on Medium. Nurses gave him iv pain meds ahead of time. Good thing, he puts the brace on amidst much screaming and crying. makes a couple of marks and takes it off (again crying and screaming). Orthotics guy leaves. Dr. O shows up. They called her with lab results. She is uber concerned. His numbers went down again.(5.1 15.9). She wanted to see him in person. He has color. Is very coherent. Talking, complaining of headache, but his hip "is fine", "hurts a bit." She asks if they took the blood from his right hand (iv for draws) or his left (iv for putting in fluids). I say the nurse could not get from the right, so she took from the left. She thinks that even though nurse followed protocol, it could have been a little weak, considering all the fluids being pushed. She is now less concerned and orders a straight draw from his right arm later that afternoon. It becomes clear that he not going home again today... Dr. O reassures us she is still in no hurry to send him home. Orthotics guy comes back after cutting and sanding the waistline shorter. Painfully puts the brace back on with two nurses holding medium and he was screaming and crying and could not breathe and panic filled. Simply could not catch his breath, He kept telling us the brace was compressing his ribs. Orthotics guy is in a hurry and leaves. Medium is crying and not a comfortable guy for the next 24 hours. The brace is ill-fitted and uncomfortable. Headache and throwing up follow every thing he eats or drinks. Noon comes and they redraw his blood. The counts come back higher. (6.7 and 18.9) They call her and Dr. O is good with them. They are going up, that is good news. It is a long day. Medicine, naps, headache and throwing up. Evening brings a little guy who seems to be keeping a little bit down. A little graham crackers and apple juice.   The pulse ox alarm went off in the afternoon and his nurse was very concerned. Started oxygen by nasal cannula. Explained to me how the low hemoglobin was causing low blood oxygen... Then the number went up and stayed up. Removed the nasal oxygen. Evening normal. As normal as it can be with everything else going on.

We have nurses in and out, but more quietly tonight. Until about 1am. The pulse ox alarm. The nurse put a new one on his finger. The reading was normal and then dropped. We raised the head of the bed a little and moved his hand. The reading stayed normal. all. night. long. Thank God. He has such dizzyness and headache. He wants to go home. I suggested that the nurse keep the oral pain medication going every 4 hours so he stays constant and we don't need to use iv pain med again.

Saturday morning. At 8 am, I realize there were No oral meds given at 4am. His pain is beyond his threshold. He is crying and miserable. The new nurse is very compassionate and does all she can to help him during her shift. He gets oral pain meds and iron supplement with crackers and juice. And he is now throwing up the oral meds and has to go back to iv pain meds until he stabilizes a bit. Dr. O comes in while he is throwing up and tells him he cannot go home because he is sick to his stomach. IF, he feels better by 5p, perhaps he could go home. She also looks at his brace, we talk about how uncomfortable he is and the things that need to be adjusted. She leaves and calls the orthotics people, there is an orthotics person in our room in a half an hour. She is kind and gentle. Removes, adjusts, removes, adjusts and all without discomfort to him. whew. We spend the day trying to get his tummy back to keeping fluids and crackers down. This whole time, he has had no appetite. Nothing. Sounds. Good. to eat. He is finally feeling a bit better that afternoon, but the headache makes him throw up. Every. Time. Ugh. Not going home again, Hubby goes home to be with boys so Tall can go to work. Another night of sleeping an hour or two at a time. Tonight the nurse makes certain she comes in and he eats graham cookies and juice before taking the oral pain meds at 4am.

Sunday morning at 8am, he has some juice and more oral pain meds, with iron supplement. It comes back up. almost immediately.   I am brushing his teeth as his doctor comes in. Did he throw up? Yes, but I think the pain meds with the iron are making him sick. Being Anemic is causing him to be super sensitive. She agrees. He is well hydrated and seems fine. He gets to go home today. I call hubby and he comes over right after work at eleven.

We take him down to the car, and he has a headache before we can even put him in the car. He throws up the entire way home. Ugh. At this point we take him into the house and spend the day trying to help him keep something down. Sierra mist. Pedialyte. Crackers. Chicken. Tummy is wore out. Nothing stays with him. He has the headache. He needs protein. He cannot eat it, yet.

Monday morning, he is lying in bed. Eats a couple of saltines. moves to the couch, drinks some pedialyte. so far so good. He has to go to the bathroom. (that is great marker) Sitting up, makes him throw up. again. Back to the couch. More pedialyte and crackers. Dr. O office calls. I tell them how he is, and that I will call back if I cannot get him to keep anything down today. The day goes by... he is able to eat a saltine here and there and keep the pedialyte down. Hours. Yes. He finally eats a banana at lunch. Yes. We give him liquid iron. In the afternoon, he has a cheerful personality for a short while and a little color in his cheeks. He eats a little rice at supper. Crackers and Pedialyte. This is working. He has water before bed. No problem. His output is a little low, but consistent.   His headache is severe enough at bedtime, he asked for pain medicine. He falls asleep before taking any.

Tuesday, crackers before we move him to the couch. Pedialyte. He uses the bathroom again, not much and his urine is very concentrated. I spend the day pushing pedialyte and crackers. He eats toast at lunch and a banana. We give him liquid Iron with honey so it tastes okay. We are having success! He is keeping everything down. He is hydrated. For supper, he eats rice and about 1 oz of grilled chicken. It stays with him. He has to stay horizontal or the headache is unbearable. He is still cold. He barely has an appetite. All three symptoms are from the severe anemia.

It has been a week since the surgery. He has only been home for three days. This surgery and this recovery are a way bigger deal than ever before.

Wednesday brings a cheerful boy who is hungry. He still must stay horizontal to keep the headache to a dull roar. He is drinking water with no problems. He has normal output. He is still cold. He is still rather pale. He does have pink nail beds on hands and feet, that's good. He starting to get bored. That is a great sign. He able to eat an ounce of grilled chicken wrapped in a tortilla for lunch. We are on the upswing. No idea how long the anemia will last, but he is having steak for supper. Nice. Rare. Steak. :)

We see his doc for a checkup on Saturday. Hopefully, he will be able to handle the car ride. We plan to recline him and see if that and Sea Bands help.

The nurses at Mercy were all fantastic and helpful and very sweet to Medium! We are happy with all the great care he got there.

Thanking everyone for their prayers!