We have been dealing with Randy waking (screaming and crying) in the middle of the night for two weeks. At first I thought he might be getting an ear infection; ears fine. Then I thought it might be reflux; started giving med at night. Then I thought that maybe he was just being a rotten piece of cheese. But last night I gave him Tylenol and he slept through the night without a peep. This was the second time in two weeks and the other time I gave him Tylenol too.
Now I doubt that 1ml of Tylenol is acting as a narcotic; especially to a baby that has been on Fentnyl, morphine, and Valium in his short life. I think my baby may be having headaches and that dose of Tylenol of enough to take the edge off while he sleeps. I have to call neurosurgery anyway for his CT scan results. I'll be sure to mention this to them.
Randy had an appointment with the opthamologist last Monday to check his vision. He had a full appointment with pupil dilation and all. The orthoptist comes in first and asks about how he is doing and check his tracking, reaction to light, etc... When she was done with his exam, she asked me if I felt there was improvement? I replied, "Yes.. he seems to be using his right eye and the patching does not seem to bother him as much."
Then they dilate his pupils and we wait. They add more drops and we wait some more (the darker your eyes, the longer is takes your pupils to dilate). The doc examines his eye. He says the optic nerve is the same, no better or worse (his optic nerve was damaged due to his brain bleeds shortly after birth). He remains slightly nearsighted, but no more than any child his age. And.......... he is using both his eyes!!!!
Mommy was right!
Now he is not using them at the same time, but he is using both of them. Prior to this he was only using the left eye. He was literally "turning off" the right eye. This is what happens when a child has strabismus (misalignment of the eyes). The child develops amblyobia (lazy eye) and begins to use only one eye for vision. The goal is to use both of them at the same time. We talked about what this means for his future eye sight. The doc fully expects that he will function as a seeing adult. He won't be a surgeon or a baseball player, but he will have enough vision to drive and do other daily functions.
That pleases me greatly. I have this strong desire for my son to be self sufficient. I have no idea how his brain injury will impact his future, but my fear has been that I will leave this earth and he will not be able to take care of himself. But I need to quit "borrowing trouble" as the old folks used to say and just take it one day at a time and remain faithful that God will make a way.
By the adorable little boy you see belowFor the last seven out of eight nights, he has managed to be held, rocked, and/or fed in the middle of the night by one of his parents. He has also managed to spend the rest of the night (er..morning) in his parents bed.
It started last Friday night when he awoke screaming as if he were being attacked. I startled out of bed and stumbled in his room. I thought I was going to find blood or vomit. Nope. Just a little boy screaming his head off. I picked him up and calmed him down. Tried to lay him down....screams again.
I said to myself, "Maybe he is hungry". He was fed dinner by his sister and others do not always have the patience to feed him enough food. Feeding him can be a long process because he eats slowly. Anyway, I go get him a bottle and we snuggle in mommy's recliner. He gets nice and full and goes to bed.
The next night I make sure he gets a good dinner. Surely he won't wake up tonight. Again I am startled awake by screams. I go get a bottle. He drinks it and goes to sleep. I remember back to one of the baby books I read and it talks about an increase in appetite when babies are going through growth spurts. They may wake at odd times through the night wanting to eat. Ahh, that explains it!!
So I am prepared the next night. I have a "middle of the night" bottle prepared and I don't even startle when he screams. I go get the bottle first, then I get him. I cuddle in the recliner with him and he pushes the bottle away saying, "all done". Okaaay. We cuddle and I nod. I try to lay him down and he screams. I am beat. Dad has gone to the couch because he has to get up at 4am. I have the next day off. Baby wins; I put him in my bed.
The next week is the same every night except one. He screams. We go get him. A few of the nights it is at 4am and dad holds him while getting ready for work and brings him to our bed with me when it is time for him to leave. I have tried all I know to do. I have started giving him cereal before bed. I switched his reflux med to nighttime instead of morning. Nothing works. The only night he slept all night this past week is when I gave him Tylenol. Who gives their child Tylenol every night before bed? Don't answer that question.
I have to admit that I have been played by a 19 month old!
The visit to the neurosurgeon was rather..... well, scary. It wasn't what he said rather than the apprehension in his voice and body language. The neurosurgeon we see is at the Children's Hospital in the next city which is about 50 miles from us. When Randy was in the NICU, he saw the neurosurgeon at the Children's Hospital here. The neuro here went out of the country for two weeks, and Randy had a malfunction. He was sent by ambulance to this other city for a shunt revision. The plan was for him to do his post op follow with this doctor, then be released back to the neuro in our city. Well last year, randy had 10+ revisions. He was getting a revision every 2-3 weeks; sometimes two revisions within the same hospital stay.
The neuro did not was to release him until he was stable. It was October by the time this happened. At this point Randy had more care under the neuro in the next city, than by the neuro in our city so we kept the care there.
Well this neuro is really good. He is young, but not scary new. He is confident, but not cocky. He is aggressive, but not reckless. And he really knows my son well. He stops to talk to him if we see him walking through the hospital for another appointment. But at yesterday's visit he seemed.........scared.
He needs to do a shunt revision. He says that the ventricle is just too large to do nothing. He is amazed that Randy is not feeling sick (this was the way he was for the June revision). But if you remember, Randy has a catheter in his right ventricle that is trapped by blood vessels. If Randy were to get a shunt infection post surgery, all of the shunt with the catheters would need to removed in order to effectively treat the infection. He said that there is a great chance of bleeding and stroke with trying to remove this trapped catheter.
So he is sending him back to the ENT to have him check his ears VERY carefully. He then wants to get another scan in two weeks (I think he is praying for a miracle where he does not have to operate). If the ventricle grows or remains the same, he will operate. If it is smaller, he will just watch it.
Randy is not sick!!! No runny nose. No draining ears. No sneezing. No fever. Only a cough late at night. I'm still holding my breath though because he is currently on antibiotics.
He went to the neurosurgeons on October 1st. The neurosurgeon looked at his current medications and said, "Does he have ANOTHER ear infection?" He asked this because Randy has been on antibiotics the last three visits. He was very upset about this. He wants to revise his shunt because the right ventricle that he is watching, continues to increase. But, he does not want to operate with him having an infection unless it is an emergency.
So he sent him to the infectious disease doctor on the following Monday. Although we spent almost two hours there, I must say that this was one of the best doctors I have ever taken him too. She explained about infections and how they respond to antibiotics and morph into different forms to trick the antibiotic (she sounded cooler and more knowledgeable when she said it). She decided to increase his dose of current antibiotic (Augmentin) to the max dose and extend it another four days. If his ear infection comes back when this cycle is over, she recommends three shots of Rocephin. The neurosurgeon should operate the day after the last shot. If his ear infection does not come back after the antibiotics, then the neurosurgeon is cleared to operate.
Randy gets another CT scan tomorrow and he is supposed to see the neurosurgeon on Thursday. Getting a return appointment to the neurosurgeon has turned into a part time job. When I left he office, I was told that the nurse would have to call me because there were no open appointments and only she could override his schedule to fit Randy in. I waited until Tuesday; no call from nurse. So I call on Tuesday and am told that the nurse is meeting with the doctor that afternoon and will call me with a time after the meeting. Still no call. I call on Friday and the nurse is not in; left a message.
So I can envision what is going to happen. Randy will get the CT scan on Monday evening. The doctor will read it Tuesday evening and on Wednesday some nurse will call me and say that I MUST get him in right away. She will give me some god awful time slot with no regard to my job. Word to doctors and nurses: NOT ALL CHILDREN HAVE A STAY AT HOME MOM!!
So much has happened this week and I did not have any Internet since Monday night. I think the wind damaged some lines. The cable guy spent three hours at our house Saturday, so we are now connected!
Before I post about this subject, I want to say that I love his pediatrician!
Randy had his 18 month check up on Tuesday. I had a long list of things I wanted to discuss. Some of the topics were: growth, bottle, therapies, infections, allergies, and about a half dozen more. The visit started off a little frantic. It was packed in the lobby with all these kids and adults wearing masks. The medical assistant was actually one of the office managers. She smelled like cigarette smoke and did not know what she is doing. The old medical assistant was dry as week old toast, but she was competent.
Anyhoo, the pediatrician looked in his ears and said, "He has an ear infection." If you remember, I had just taken him on Friday and his ears were fine. He had an infection in both ears. He was given another antibiotic (a different kind) and was told to stop using the drops. Randy has an appointment in late November with the ENT doctor, but his ped wants me to schedule it sooner. I think he is finally as sick of these infections as I am.
He then read my list and began talking about all the things on my list as he examined his the rest of him.
Did I say that I love his pediatrician?!
He thinks that aqua therapy is a great idea once the ear infections are under control. We will look into hippo therapy at his two year appointment. He wants him to be re-evaluated for speech (the therapist suggested this in March after his last evaluation). He suggested that I apply for a handicap sticker. Although he anticipates Randy walking, how soon is still to be seen. He is still in favor of daycare despite Randy being sick.
We talked about allergies contributing to the cold symptoms and thus ear infections. He said it is possible, but not completely sure. He said that we will be able to tell a little if he gets better after ragweed season. I told him that we had an appointment for Monday. He was OK with us pursuing this avenue.
I love his pediatrician!
He was all for Randy continuing with his bottle. He says that he needs the calories and he would never drink the same amount from a cup (not that he drinks a lot right now). Randy did not gain much over the last three months, and nothing over that last two months. His stats were:
Weight: 20 lbs 4 oz
Length: almost 31 inches
Head circumference: 44.2 centimeters
He is on the curve for height, but at the lower end. He is not on the chart for weight on head circumference.
Finally, he diagnosed Randy with cerebral palsy. "Cerebral palsy is a group of disorders involving movement, learning, hearing, seeing, and thinking that occur due to problems with brain development and/or injury." Cerebral palsy does not get better or worse. Randy suffered injury with his brain bleeds that occurred due to his early birth. I have only told a few people and the first thing they have done is get really silent and if we were not on the phone they would have had their mouths hanging open. LOL.
I really took the diagnosis well. My ped had talked to me at the 15 month appointment. He was preparing me. I think he would have put off the diagnosis until the 2 year appointment, but I kind of pushed the envelope with my questions. I asked what symptoms Randy was showing that would lead to the diagnosis, etc... I finally asked, "Are you on the fence as to whether Randy has cerebral palsy?" He said, "No." Then I said, "Diagnosis it now then."
Many may be wondering why I would want this diagnosis for my son? I don't want my son to have cerebral palsy. I did not want him born three months early? I don't want him to have hydrocephalus. I don't want him to have a shunt. But my wanting or not wanting does not change reality. It is what it is.
Some of you may wonder how my doctor could delay such a diagnosis? It's because we are not doing anything different now that he has cerebral palsy than we would have done without the diagnosis. He will still get PT, OT, feeding, and speech. I will still work with him at home. Nothing changes.
Then what is the purpose of the diagnosis? I'm not totally sure. I do know that it lets the insurance company know that these issues are not going away. Maybe it gives us a leg to stand on when we are asking for money for therapies and/or equipment.
All I know is that my little boy was the same when we left as when he arrived. That is what is important to me.