Still waiting
Still waiting for the growth hormone. We have an appointment with the endocrinologist on 5/8 and he hinted we might start growth hormone at that point. I’ll believe it when I see it. The problem is that Gabe produces a ton of growth hormone but is not absorbing it which is a completely different story. What’s frustrating is they do not know why this is happening and do not feel it is related to the ARPKD!! What else is frustrating is the comments I am hearing about how cute and small he is and what a peanut he is. Yesterday a woman said he was such a peanut and I turned to her and said that is because he has a kidney disease and isn’t growing. That still didn’t faze her and she said her youngest is a peanut as well and the doctors wanted to do growth hormone on her son but they decided not to. They actually got approved and tried it but her son didn’t like it and didn’t care so they stopped! Argh!!! How long have we been trying to get growth hormone and got denied once and are still hoping!!! She even said we still had time. So I said that we might not since he could go into kidney failure one day and that would stop his growth immediately. She still just kind of smiled at me and didn’t really say much. I think most people just don’t get it. They look at him and even though he is small think he looks good and is so cute so don’t realize the severity of all of this. She made a comment that her brother in law was only 5’5″ and that was fine. And maybe it was. But who knows how tall the boys will be and when you add in all of the extra medical issues I just don’t want to miss the boat on this one!
Icing on the cake
Things have been crazy for the last six months. My sister had a stroke in November because of a tear in her carotid artery. She possibly has a connective tissue disease but they are still trying to figure that out. Then Gabe had his growth hormone stimulation test and threw up for three hours straight and it turns out he makes plenty of growth hormone but isn’t processing it. But they have no idea why!!!!! And he still is not on growth hormones. As far as Max goes he’s been having a ton of stomach issues and might need an endoscopy. The meds are not working to help him. And the pulmonologist thinks his asthma is acting up and wants to rule out vasculitis.
The icing on the cake is that I have/had thyroid cancer. I say had because I had my whole thyroid removed three weeks ago. They think they got it all but I will find out more next week.
Way too much going on in my life!!!!!!!
Preoccupied
Today was the first time in my 8 year career of being a mom to kids in school that I forgot to send a lunch in for a field trip. Embarrassing and sad. Nate came home and said it was a bad day for two reasons. One he didn’t feel well and two he had a field trip and no lunch! Obviously the school provided one but I’m not one of those moms who forgets things like that.
It made me really sad. I’ve often thought over the last seven years since the ARPKD diagnosis that I’m not the mom I thought I would be. I’m not as happy and carefree as I would like. The last four months have really thrown me for a loop. Extra appointments for the boys, my sister having some health problems, and last week having my thyroid removed with a cancer diagnosis (hopefully contained). Just too much to process. As my friend Julia says “I cannot compute” and I’m a hot mess!
and the list goes on and on and on
Here is our list of doctors (mostly ologists) that the boys have seen this year:
Nephrologist
Pulmonologist
Endocrinologist
Urologist (talked to on the phone)
Gastroenterologist (also talked to on the phone)
Rheumatologist (going to on Friday)
Orthopedist (one of the few ists without an olog in front that we see)
Hepatologist (going to in a few weeks)
Pediatrician
We have been to the endocrinologist three times this year alone between Max and Gabe and the nephrologist also three times. If you add in my ophthalmologist, endocrinologist, neurologist, rheumatologist, and thyroid surgeon then we have been to a total of 15 doctors appointments and had two consultations in 2013. Wow!!!!! And I already know of at least 8 appointments coming up in the next six weeks or so plus two abdominal ultrasounds, one bone age X-ray, and one chest X-ray. No wonder I am overwhelmed!!! I need a secretary. Our nephrologist said they should name a wing after us at the hospital!! He isn’t kidding. That’s $600 of copays alone!!!!!!!!!! And its only the third day of March.
The elusive growth hormone
I know I have said this before and I know I will continue to stress about this but for the last three years or so I have complained that I felt Gabe wasn’t growing like he should be. He eats well but barely gains weight and grows height wise at a very slow rate. We are now onto our fourth endocrinologist who we have been seeing now for almost a year. We saw him today after 3 months and he asked if I thought Gabe had grown any and I said no. So after measuring him and weighing him he agreed that Gabe has not grown since our last appointment and has now totally dropped off of the charts in both height and weight. But yet he still does not want to start growth hormone. He wants us to wait until our appointment on 2/25 to do the 3 hour growth hormone stimulating test. Then he wants to wait for 2 more weeks for me to call him and to discuss those results. Then we will go from there. But even if he does decide at that point who knows how long it will take him to apply to our insurance company and for our insurance company to approve it. I am beyond frustrated at this point and do not know where to go from here. The thing that irritates me is I know so many people who have their child on growth hormone for other reasons but did not have to fight like this. I also know many people with children with a kidney disease who have or had their child on growth hormone and also didn’t need to jump through hoops like this. What’s even more frustrating is that Gabe is 7 and still wears some size 4 clothes and weighs 37 lbs!!! And is only 42 inches. This is I think more than negative 2 on the growth chart!!!!! He is 52% below the “average” 7 year old!!!!!! That is just insane to me.
Besides that the endocrinologist seems to now be more concerned about Max and his growth issues so I need to do some follow up with him. And we have already been down to the city for 5 appointments since the beginning of the year and need to go in a few weeks for a sonogram for both boys and for Gabe’s 3 hour growth hormone stim test. Besides that the nephrologist wants me to take Max to a pulmonologist and Gabe needs to see an ENT. And I need to follow up with the hematologist for Gabe and the GI for Max! And I’m having half my thyroid removed in March!!! And we have already spent $1000 on medication this year and over $300 on copays!!!! That isn’t even including our deductibles!!! Wow and its only the fifth of February!
Crazy?
Sometimes when I talk to certain people I feel they think I am crazy or overreact or neurotic. I might be all of those! But I hate the feeling I get after these conversations about my boys and their health. The thing that bothers me is that they do “look” so good on the outside I really do feel most people forget how “sick” they are on the insides. Even health professionals.
The school nurse called today from Max’s school because he is going on a class trip on Friday and he has a standing order in his file for tylenol. They need me to drop off a bottle of tylenol for the trip because they don’t have any. Now what they would have done if he came in with a headache is a whole other story!!!! So while we were on the phone I asked if the teacher had his medical file with her on the class trip and was told no that she only has a medical alert on a child and not necessarily even a diagnosis. Am I crazy to think the teacher should have all of the medical information on a child when she is going to take him on a field trip that requires a 40 minute bus trip. I said I wanted the teacher to have his diagnosis written down along with a list of his medications. Seriously. I hope nothing ever happens but G-d forbid what if the bus were in an accident. Or even if Max fell and hurt himself. But her tone of voice made me feel like I was being way too overprotective.
But….. let’s back track. I admit I am hypersensitive (as Matt likes to call me)! I have a hard time reading into what people are saying. Last Friday I went to an outlet mall with a friend that was a good 40 minute drive. At 1:15 my phone rang and it was the nurse at Max’s school that he had a stomach ache. I said I was 40 minutes away. She said she had a left me a message earlier in the day but I never received it. When I got home I saw she had called at 10 in the morning but had not left a message on my home number and had not called my cell. At 1:15 I asked if Max could walk home and she said no he would just have to go back to class. This was a new nurse so I asked if she knew his medical history and she said yes they had his file. But she made it seem like she didn’t really know the extent of his disease and only had the information in the file. I really didn’t like her attitude and said I felt she was being flippant with me. When I finally got there to pick up Max he said when he went in at 10 they didn’t even acknowledge him at first and then when they couldn’t get me on the phone told him to go back to class that there was no difference between sitting in the nurses office and sitting in class. They did not offer him water or crackers or anything and did not take his blood pressure. I was really upset about this and talked to the vice principal that afternoon. I now have a meeting set up with the nurses this Thursday.
So back to today’s conversation…. I don’t really think these nurses are too happy with me complaining about them to the v.p. But then again maybe I am just too hypersensitive.
But am I crazy for wanting Max to have all of his medical info with him on a school trip? Am I overreacting? Am I neurotic? Well…yes, but what about for this situation?
