Cardiology

I mentioned yesterday that Peyton was to have her Cardiology appointment today.  She did, so here's a quick update on that.

Peyton had a 12:00 appointment with Cardiology.  When we arrived, the nurse said Peyton would be having an EKG and cardiac ultrasound and then we'd be seeing the doctor.  The EKG was fairly quick.  The ultrasound was 30+ minutes.  The room where the ultrasound was was like an oven.  I thought we would perish before we were through!  After that, it was back to the waiting room.

I'm not sure what happened while we were out doing the tests, but the population in the waiting area exploded and it was hard to find a seat!  We were sitting down a little before 1:00.  We were taken back and were seeing the doctor sometime just before 3:00.  UGH!  Once we were back there, things moved along quickly.

The resident came in first and then the attending.  Both assured us that Peyton's heart is not an area that we need to have immediate concern over.  She does have a murmur and a mitral valve prolapse as discovered before.  However, they are not to the extent of needing medication or other intervention.  Peyton's severe sleep apnea and having had over a year of continuous respiratory issues hasn't helped her, but she's not in any distress or having any acute problems.  For now, the Cardiologist would like to monitor her heart - see her back in a year.  He's not keen on the idea of putting her on any meds at this point in time.  She doesn't need them at this stage and she's already got so much other stuff going on that adding another med might cause more trouble than it is intended to solve!

So, it was a good appointment.  I like when that happens.  Praise God for a mostly-healthy heart!! 

Update

Where did this week go??  January??  What happened?  I can't believe how fast time is flying by!

This week started out with Peyton finally having her long-overdue sleep study on Sunday night.  She was to have had it a few months or more back, but each time the date approached, Peyton would be too sick to go.  I think I rescheduled it four times.  I was not looking forward to the study.  The process of getting Peyton all hooked up to all the wires is always a torturous ordeal for her.  I should have just had faith that it would all work out well right from the beginning, because it actually went quite well.  It takes nearly an hour to get everything hooked up and ready to go.  I held Peyton on my lap the whole time.  That in and of itself is a big challenge.  She did just fine.  She didn't start fussing until the very end when they wrapped gauze around her head to keep all the wires in place.  Once that was done, it was time to sleep.

Despite being so tired she was practically falling asleep in the waiting room before being called back, Peyton decided she was wide awake.  It was pitch black in the room and all I could hear was the sound of little fingers pulling on tape.  At some point, the respiratory therapist who was monitoring the study came in and I offered the suggestion of putting these little splints on Peyton's arms so she couldn't mess with the wires.  I just happened to have a set in her go bag, so on they went.  That solved that problem.  Peyton was not having anything to do with sleep for a while.  I think she was just too excited about having an actual bed to sleep in.  Yes, she actually slept in a real hospital bed - NOT a crib.  It was nearly brand new and the side rails seemed like they would contain her.  When Peyton sleeps, she really just stays put for the whole night.  The rails were also padded so she wouldn't hurt herself.  I didn't even need to worry about anything.  She did great in her big bed.  Now, I won't be rushing out to get her one for home - the hospital crib we have at home will be just fine for a long time to come.

It seemed like she was starting to settle when a couple RT's came into the room.  Peyton's oxygen was dropping to just 85% and she was having lots of central apneas.  She was AWAKE when that was happening!!  That's a new one on us!  They suctioned her quite thoroughly so that she'd have clear nasal passages.  She has been very congested in her nose of late, so that could have been contributing to those issues.  They put her on oxygen right then and she finally went up to 95% on her oxygen.  

Throughout the night, the RT came in several times.  In the morning, she let me know that Peyton's oxygen continued to drop during the night and she wound up being put on 2.5 liters of oxygen.  1 liter is typical at home.  Used to be a half liter.  2.5 was a surprise.  They did not try the bi-pap mask during the study.  I think they were satisfied that they could get her oxygen levels up into the mid-90s on oxygen alone.  However, I know that the pulmonary doctor really would like for her to be on bi-pap so as to reduce the strain on her heart and lungs.  So, we will continue to work on the bi-pap at home.

As for bi-pap, over the past week or so, Peyton's done very well at night.  She has slept with it on for as few as one or two hours, and as much as twelve hours overnight!  Last night was less than two hours.  We just have to keep on trying.

Peyton was scheduled for an eye exam under general anesthetic on Thursday.  However, Peyton decided now was a good time to get sick, so that was rescheduled to March 17th.  She started to get sick on Tuesday.  She had a fever and was throwing up a bit.  She was like that for two days.  Today, she's still having some vomiting but the fever is gone.  She's very, very junky sounding.  We're suctioning tons.  Poor Peyton.  It can't possibly feel good to have that much junk in your system that you just can't clear on your own.

The big news of the week was that the mycobacterium was finally identified.  It's called "mycobacterium immunogenum".  What is it??  Your guess is as good as mine.  Every search result I found when I Googled that had something to do with studies where this mycobacterium was found in relation to machining fluids used by machinists (i.e. in the automotive industry, for one).  It's apparently linked to a condition called hypersensitivity pneumonitis.  That condition isn't something that they said Peyton has.  I feel really bad - I guess I'm going to have to pull Peyton out of her shop class.  :(   Seriously...HOW on earth does Peyton have THIS in her lungs??  She wouldn't be Peyton if it didn't have a quality of mystery about it.

Anyway, this bacteria must be pretty rare as there is little information on it.  It's a non-tuburculosis bacterium.  It's penicillin-resistant from what I've read.  The treatment plan is lengthy.  It's also unclear as to whether or not the bacteria will respond to the treatment at all.  For now, she is going to be on a 2 month course of antibiotics - Cipro and Biaxin.  They aren't sure it will respond to Cipro, but she has to be covered by two antibiotics, so this is what they went with.  The idea is that if she is responding after a couple months, then the treatment plan will go on for another 6+ months!!  If it isn't responding after a couple months, then it's likely that this bacteria is not what has been making her sick and so they would just cease the treatment at that time.  I'm not sure what to hope for here - 6+ months of antibiotics and hopefully she's well at the end...or many months of antibiotics which result in nothing but horrible diarrhea and horrid diaper rashes from prolonged use of antibiotics.  Praying that this treatment works!!

In other news, Peyton had a visit from her case manager last Friday.  She did an assessment on Peyton's level of care, and she was able to put in a request for an increase to Peyton's home nursing hours.  When she was originally approved, she was approved for 56 hours per week.  In January, we had an assessment which resulted in a temporary four week increase to 72 hours per week.  As of the 30th, we were back to 56 hours.  The end result of last Friday's assessment was an increase to 84 hours per week!!  It's subject to monthly re-evaluation, but it's more or less a permanent thing since her requirements aren't going to lessen.  

Now the key is to get the staffing for that many hours.  It's awesome and we are so blessed and grateful to have this.  We know it was a struggle to get the 72 hours per week staffed - we actually never got 72 hours in a single week until the last week of that temporary increase.  We know it's hard to staff so many hours and expect it to take a while before we can get onto a good schedule.  We're not off to a great start for February, hitting 60 hours this week and not quite to 56 hours the next couple weeks.  We'll just be patient and pray that we can get the hours.  Anything we get is a huge help, so it's all appreciated.  Now to come up with a plan on how to use my time whenever we do get the 84 hours covered!! 

That's about all that is going on right now.  Lots of stuff happening.  Praying that whatever illness Peyton has going on right now clears up soon! 

Surgery

What a day. We went to see Peyton's Neurosurgeon for a follow up to the MRI she had last week. Back in November, her MRI of her brain showed something at the base of her skull/top of spinal column that they wanted to keep an eye on. Unfortunately the MRI cut off right at about this point. The problem was a new one so they weren’t expecting to need to see further down her spine. Last week’s MRI went further so they could get a look. The tightening that they noticed at the top of the spine has gotten worse and requires surgery. It’s one of those things that could be done now or could wait a bit, but then if you waited…what if something happened?? The big concern (one of the concerns) is that the sleep apnea she has is very likely caused by this problem and could get worse. The area of the brain above this problem area controls respiration. We didn’t delve into the “what ifs”, but decided that urgent surgery is the order of the day. She is scheduled for Thursday. We have to be at Texas Childrens for 6am on Thursday. He said the procedure is fairly simple.  Ok, I’m not the neurosurgeon, so perhaps that it is not actual “brain surgery” maybe makes it “simple”! It’s about a 30 minute procedure – decompression is what he called it. She’ll be in the hospital 2-3 days. They have to keep a close eye on her because of risk of infection, her apnea and generally because of her other issues.

So now we wait anxiously for Thursday to be over and done with. I will keep everyone posted as soon as I can once she is out of surgery. We appreciate your prayers!

ENT Update

I am back from the ENT doctor with Peyton now. This was a follow up to her visit 7 or 8 weeks ago. That visit was a consultation regarding her sleep apnea. However, in the process, he discovered she had an ear infection. She developed another ear infection a few weeks ago. That makes at least 4 ear infections since January. The doctor has decided she is a good candidate for having tubes put in her ears. He also felt that her adenoids should also be removed. So we are scheduled for surgery on August 24th.

Since the bulk of her hearing loss and sleep apnea are neurological, the surgery probably won't help too much with those areas, but it's possible that her hearing might have some improvement - at least perhaps what little bit she can hear unaided might be clearer. The adenoid removal might reduce some obstruction as far as the apnea goes, but probably won't do too much to help there. Hopefully after this surgery Peyton will be in better shape for having such things as her MRI and eye exams which require sedation. These keep getting rescheduled because she's gotten sick and can't be sedated. Hopefully if we can reduce the number of ear infections her immune system might stand a chance at clearing up the other issues.

More appointments this afternoon - will keep you posted.

An Overdue Update

Wow. I can't believe how long it's been since I updated this journal. The time has flown by and it hasn't been uneventful!

In mid-June Peyton had a visit with her ENT doctor to discuss her sleep apnea. In the course of the appointment, he discovered she had an ear infection. It was treated. It returned. She just finished her second round of antibiotics and will return to see him next week. I'm afraid we're probably getting close to having to have tubes put in her ears. The ENT didn't want to allow her to have too many ear infections that could further compromise her hearing. She's had 4 or 5 already since December.

A visit to the ophthalmologist a couple weeks back revealed some flakiness around/in her eyes. Possibly excema. On the same day, she had an appointment with her pediatrician, so we were able to discuss the matter with both doctors. In addition to her eyes, the mild flakiness sometimes appears elsewhere on her face, but she will also get a rash periodically. The doctor thought it might be a heat rash, excema or something in between. Peyton was prescribed eye drops, an ointment for her outer eye, and a steroid cream for the rash.

In news this week, Peyton appears to have developed an allergic reaction built up over time to the eye drop she was prescribed. She has taken that particular drug several times in her life. It's the drug of choice following all her surgeries and for most problems she's had with her eyes. The inside of her eyelids were absolutely blood-shot yesterday and had several raised bumps on them. Turns out she has several styes and some advanced styes. We cut out that eye drop and ointment and have her on a new eye drop. Hopefully that helps.

Peyton had her annual review with her Early Childhood Intervention (ECI) team on Thursday. Her coordinator, developmental services, nutrition, occupational therapist, speech therapist, and hearing teachers were all present. Everything will remain pretty much the same except we dropped nutrition from her service grid. Sad to say good-bye to her nutritionist who has been wonderful, but if you could see Peyton now, you'd definitely see there's not much of a weight issue now compared to just a few months ago! Way to go Peyton!!

Peyton's physical therapist was not present, however we had a visit with her earlier that day. We're looking into various pieces of equipment that we can get for Peyton to allow her to be better positioned. We're looking at a few different seating options which would get Peyton up off the floor and into a sitting position to do things. We got her in her high chair for the first time. I've been very hesitant about putting her in it because of support issues she has. Now that I see how to do it properly, we'll be doing it all the time now!!

Peyton saw her orthopedist on Friday. It was a follow up after having the problems with her hips at birth. She had x-rays done and everything appears to be developing normally. She has very low muscle tone, so we were concerned that perhaps she might not be. However, things are looking good. We will see him in a year or one month after she starts walking - whichever comes first.

It's been a very busy past few weeks. Peyton is doing well. She's really taken to her new babysitter. She's gained more weight - she's almost 21 lbs now at 14 months! Moira is also doing fantastic in her new daycare. She keeps us on our toes!! Ron was away for work in Dayton, OH on Monday through Wednesday of this week, so I got to handle both kids myself during that time. I need a vacation!! They were both good girls for me but I'm happy to have my helper back!!

We're crazy people and are heading off shortly for a little weekend jaunt to Albuquerque. I think it's about 14 hours...and we're driving. Leaving shortly and will be back Tuesday night. We just wanted to see something different. Hopefully all goes well. Will keep you posted on Peyton's progress next week.

ENT & An Eye Infection

Peyton saw her ENT yesterday regarding the obstruction part of the sleep apnea problem. He checked out her tonsils and they were normal. He checked her ears and found lots of wax, which he cleaned out. Then he found she had an ear infection in her left ear. We need to see him again in 6-8 weeks for that. It came as a surprise to us that she had an ear infection, so I'm very glad we saw him. He doesn't want to compromise whatever hearing she does have be letting an infection linger, so that's why we need to follow up. If she has more than a few infections in the next 3 months, then he might wind up putting tubes in her ears. We'll cross that bridge if we get to it. After all of this, he put numbing drops in her nose so that he could put a scope up her nose and into her throat. Her adenoids are normal and she appears to have a clear airway. There's a little excess saliva but probably because she may have some swallowing issues. Nothing to worry about from his point of view, and certainly nothing to do surgically. He went over the sleep study and told us, unfortunately, the bulk of the problem is with the central apnea which is related to the brain. We need to follow up with the doctor who did the study, but he said that there's probably little they can do to "fix" it. Maybe certain medications might help, but probably nothing they can do surgically.

Peyton's eye has been runny for the past few days, but by the time yesterday afternoon rolled around, the skin around the outside of her eye was very red and very irritated. While I was waiting in the ENT's office, I called Ron asking him to call her ophthalmologist. He left a message. When he got home, someone from her office called back and as he was explaining the problem, without actually looking at her or having seen her since the morning, I brought Peyton out to help aid in the description. As he was talking, I whispered "can we email a picture???" It was after 6pm and that particular doctor doesn't have clinic hours on Fridays. Sure enough, the doctor was still in the office as Ron was talking to the secretary, so he got the doctor's email address. Within minutes, I'd emailed a close up picture of Peyton's eye. Mere minutes later, Ron's phone rang and it was the doctor calling back. She said it was likely just very irritated from all the drainage coming from her eye. The drainage might be a viral thing or perhaps related to the ear infection somehow. She called in a prescription right away and we were good to go. Talk about great service!! I guess it pays to have such a great relationship with the doctors. Saved an office visit, having to take more time off work, a $30 co-pay, mileage/gas/parking for the car, etc. Now we can cruise on into the weekend will all medications in hand and hopefully without anything arising over the weekend. Doesn't it always seem to happen that way??

Daycare Dilemma

What a whirlwind the past week has been. My mom and dad came down for a short visit for Peyton's birthday party. It was great seeing them. I just wish it had been for longer!

Peyton's birthday party was very nice. We had ourselves plus 11 others who came. It was a Baby Einstein theme. Thank you to those who were able to attend!

Last Thursday, Peyton went to her pediatrician for her 1 year check up. The doctor said she seemed a million times better than she was while she was sick. She spent a lot of time discussing a lot of issues with me. She is the greatest doctor. You never ever feel rushed. She always takes as much time as you need with her. She also makes you feel like you and your family mean a great deal to her.

One of the items which we discussed was the fact that we ought to be looking into a child care situation for Peyton which handles children with disabilities. She was thinking by the time Peyton was 18-24 months would be appropriate. She recommended a place. There aren't too many like it, so it's not necessarily as convenient as where the girls currently are, but if this is the place Peyton needs to be, then we'd just make it work.

Part of what prompted this recommendation is that our daycare, which both girls attend, has stated that Peyton is scheduled to move up to the 1 year old room on July 15. We had always said to them that we didn't know if that would give her enough time to be ready to be moved up. About a month ago, it was mentioned to me and I asked what we would do if she wasn't ready. The response was basically to put the answer off by saying we'd cross that bridge when we got to it. Last Thursday, she mentioned the same to Ron when he dropped Moira off. He raised the same concerns and was basically told that they were moving her July 15 as they have already given her spot in the infant room to another family who already has another child in one of the older classes. Long story short, what was discussed really made us angry and sad, really, which is why I brought the situation up to the pediatrician.

Last Friday, since my parents were going to watch the kids, I called the daycare to let them know they would not be there. That was all I wanted to discuss. I was still upset about the previous day. However, I was cornered into a discussion about the same thing. It went on for at least 30 minutes. The owner said she guessed we needed to have a conference in person. I cried for about 2 hours after this conversation because it was so hurtful, upsetting, and stressful for me. The bottom line is they have a business to run and, although they claim to be acting in all the families best interests, it appears to me that they are choosing to bump us in favor of a family who causes much less inconvenience to them. Discrimination, anyone?? This prompted a phone call on my part to the State and the local Child Care Licensing Agency to find out if what they are trying to do is legal or even appropriate.

The regulations on child care for a child with special needs are basically that they need to meet minimum standards of care and that the child must be fully integrated in the class. All activities must include all children, whether they adapt the activities so she can participate or adapt the other children to something that Peyton is able to do. The "gray area" is that while they are required to meet minimum standards, they may choose to use the developmental or emotional age of a child upon a doctors recommendation in determining the child's placement in the facility. They recommended that I get a letter (which I was already in the process of doing), have the conference, and if we were not satisfied with the outcome, we could call back and file a complaint. At this point, they would send out an investigator to determine whether or not the minimum standards of care are being met for Peyton. After this call, I began writing a list outlining my discussions with the daycare regarding every one of our concerns. The list is 7 pages typed.

Ron called on Friday to set up a conference but apparently whoever he spoke to couldn't set it up. He did not have a chance to do it yesterday. He is concerned about me and my stress level, so he wants to handle the conference himself, discuss it with me, and go from there. That said, yesterday when I picked the girls up after work I was cornered again by the owner. I'm thinking, if you want a conference, have your conference and until then, leave me alone! I was in no mood for the conversation, so whatever I wound up saying to her, she had it coming! She has been a tad condescending and has said we obviously don't know what is in the 1 year old room and we don't know what's available. And she doesn't get how the doctor can possibly determine the 1 year old is inappropriate considering she's never seen it. And I can say obviously after all this time, the daycare hasn't got a clue what they're dealing with as far as Peyton goes. She showed me the 1 year old room. She had stated when they go outside, we could leave a stroller there for Peyton to sit in and be moved around in while the kids are playing. That's fine - if she could actually sit in a stroller! She actually went online to find infant strollers. She printed the list out to show me the pictures. They were all forms of umbrella strollers. Some were quite nice and I'd like to have some of them, but the bottom line is it isn't appropriate for her. Bottom line, we cannot put Peyton in a situation which is inappropriate. The daycare seems to be refusing to keep her in the infant room because they've promised it to someone on the waiting list. I thought a waiting list was just that - a place to wait til a spot opens. Not a place where you tell people they definitely have a spot come July 15.

Anyway, the discussion went badly last night. We were very upset. The bottom line is that we are now in an urgent search for child care. And who knows what we can get. The special school for Peyton may or may not have a spot for her come the start of their school year in August. They also cost for one person more than what we currently pay for the two girls combined. The daycare threw in comments about Moira which were completely inappropriate. I don't want to leave Moira there when Peyton is taken out. If they are going to treat us this way over Peyton's situation, they don't deserve any of our business. I absolutely hate creating more upheaval in Moira's life. But I can't leave her there.

Question - Does anyone in the Houston area know anything about nanny agencies or anything that might help us out??

So, this past weekend, Peyton also had her sleep study. It was supposed to be on Sept. 6, but the pediatrician was quite anxious to move it forward based on her oxygen levels while she was sleeping when she was in the hospital a few weeks ago. She spoke to the director of the sleep center and they got us in this past Saturday. Mom came with me and Peyton. I think it was more like a sleep deprivation study. It was torture for Peyton. Poor baby. She did bravely, but it was not a fun experience.

The pediatrician called me last night. She got the results of the study. Peyton is desaturating 30+ times an hour while she is sleeping. Her breathing either becomes very shallow or she stops breathing. It's central and obstructive sleep apnea. The central part means her brain is forgetting to breath. This accounts for most of the problem. The obstructive part means something is blocking her airway - enlarged tonsils, adenoids, or perhaps a structural defect with her airway. They gave her oxygen during the sleep study and this help greatly. So, last night they got us set up with oxygen for use at night while she is sleeping. The doctor will have the final report on the study by the end of the week and will determine if she needs oxygen during the day during naps.

So now we have a new problem. Oxygen. I said to the doctor I could hardly wait to tell the day care. She said lets not go there just yet. For sure wait til the final report is in. However, if she has to have oxygen during daytime naps, we now have no child care for Peyton. I can guarantee they will not be accommodating as far as this goes. So again, does anyone local know of anything that would help us find appropriate care for her????

We need to make an appointment with her Ear, Nose & Throat doctor to see about the obstructive part of the problem. The pediatrician spoke with her neurosurgeon (the 2nd one we saw for the 2nd opinion a month or so ago). They are concerned there could be a neurological component to this. She has a Dandy-Walker cyst - it may or may not have something to do with the problem. They're going to look into it. She also wants to determine if something should be done to surgically aid the problem.

At this moment, I have no idea how we are getting through all of this. I can't believe the events that have unfolded - especially with the day care. I don't even have a clue what we're supposed to do. The medical stuff is easy. We just do what they tell us to do to help Peyton. I don't care if we have all the appointments we have to keep Peyton's life progressing in the best possible way. I DO care that my child is the subject of what appears to be discrimination and that she appears to be an inconvenience to the people who have provided her care for nearly a year. I've toughened up a little more the past week or so. I am not afraid of them. I am NOT afraid. I WILL report them to the licensing agency when this is all said and done. I'll throw in that they never keep her hearing aids in as well. That'll be nice. All I know is that Ron and I are Peyton's best advocates. What happens to her is OUR decision, not the day care's. If we don't stand up for her, no one else will in this situation. We'll do what is best for her. And we have a pretty good team of people who stand behind us on our side of the issue, so I don't feel so alone in all of this.

Sorry for the length of this post. Believe me when I say it IS the short version!! If you can say some prayers about all of this stuff that everything works out ok, that would be much appreciated!! Thanks.