We were very happy with this appointment. I really like our doctor. He listened to everything, explained the difference between obstructive sleep apnea vs. central hypoventilation and how they see it in a sleep study, he had talked to Oncology before meeting with us so he already knew about Haven and pulled up her records while we were in there. It was great. We spent over an hour with him.
A few areas discussed:
Haven's breathing and where she is right now: he noted that her sleep studies were pretty good right now and that we would continue to monitor her closely for any changes. He said her last sleep study showed her highest CO2 level at 49 and when she starts to pass 50 is where the concern would be. We have a sleep study scheduled for August 15th and a follow up appointment with him on July 23rd.
He did say he didn't expect Haven would suddenly stop breathing in the next month or even the next 6 months but then reminded us that he can never say that for certainty because we don't know how ROHHAD acts in every child. At most, he said she would probably only need to go on a bi-pap machine in the next 6 months but didn't think we should worry about that yet.
He mentioned bringing Neurology in now to monitor possible seizure activity during her next sleep study. Doesn't mean she is going to have a seizure but Haven has a history and since this hasn't been monitored in over a year he would like another record of her brain in that department.
He is a bit concerned with her sleep walking and talking. More for her safety than anything plus we were sure to explain to him that although her sleep walking drives us crazy and doesn't let us sleep - it also comforts us because if she's screaming and talking we know she's breathing.
He ordered a pulse oximeter for Haven to use at night while sleeping. They said it would be set to alarm if she reaches 94....I am sure we will hear many alarms as Haven is usually around 95-96 and a little drop will cause an alarm. Kris received a call tonight about the delivery! I did briefly discuss her sleep walking and machines but he was not worried. We will have to spot check her stats - we'll have different times at night that we will have to record them.
We discussed her ABG results that were done while under anesthesia. He is almost discounting them because the readings would be altered by the intubation and oxygen given to her. So we will have to have an ABG test while awake. We did not do this today - as he wanted Haven to meet him first without pokes and it hurts a lot.
He is highly recommending us to go to Chicago to meet with Dr. Weese-Mayer. He said he has talked to her and discussed Haven. Oncology has also talked with her about Haven. He is concerned that there could be something they are missing and wants to have a full evaluation done by Dr. Weese-Mayer and then get the results back here. He also would like to have Haven's full studies in the research paperwork to help other children with ROHHAD. I have emailed the team at RUSH (thank you Julie for all the paperwork). We'll discuss this with Oncology next week.
We discussed Haven's allergy to Ketamine. He absolutely doesn't believe it's specifically Ketamine related. He told us that a ROHHAD episode (Respiratory Failure) can easily be triggered by ANY anesthesia. Haven must be required to be intubated without question at any procedure done. He told us to make sure when she does have anesthesia that we require them to monitor her CO2 levels while giving her oxygen. He said CO2 levels can rise dangerously if not monitored at the same time in a ROHHAD child. We have agreed to have her intubated on every anesthesia procedure due to her seizure activities and respiratory failure a few times while under anesthesia.
The funniest thing we heard: he said he bets that Haven can stay under water for a couple of minutes and have no problem at all. She lacks the function of panic that would tell her she needs to get to the surface to breathe. She can withstand a high level of CO2 - which a normal person can not and they would rush to the surface. We didn't take him up on the bet!
We went to Oncology following Pulmonary. Haven needed to have her levels and blood work done. When we met with Cardiology yesterday he wanted to have her tested for Anemia. So this was done today as well. We will not have results back until next week. Everything went as planned here.
Child Life talked to us about Sunrise Camp for Kids with Cancer. So we are going to sign Haven up in the 5 year old camp. It's a daily camp (she doesn't stay over). It's only for kids with Cancer. There are Pediatric Oncologists and Oncology nurses on site. Our own Nurse Katie volunteers at the camp and Kim at Child Life is there. We think it will be really good for Haven. It's free for her to go and she will have a blast doing crafts. This will be in August.
Next we went over to Pediatric Cardiology to get Haven hooked up on her holter. We are monitoring her heart rate. She runs high so the doctor said he would like to see her have fluctuations and get down in to the 80's during sleep. We will get the results from him next week. He doesn't want to put her on medication because she is already on so much. He wants to have an Echocardiogram done every 4 - 6 months to monitor her.
Here is Miss Haven with the heart monitor on. She was happy it was in a little purse. We were worried it was going to be too big but they said this is the size everyone gets. The monitor is in the little bag and it hangs around her neck. She has to sleep and everything with it on.
Here are a few of the leads. These are on her upper chest. There are more that are up on the side of her neck and all on her belly area. She is doing pretty well but she keeps saying the tape is pulling. Luckily we don't have a hairy chest to worry about. She is definitely concerned about taking all of them off.
She is always concerned about someone putting something sticky on her port and messing it up. So she always tells nurses and doctors not to touch her port and to make sure stickies don't get on it. Luckily - we didn't have to have any there.
Well, this is long but it's been a long day. I'm going on my 4th day straight of a constant migraine. I hope Haven sleeps tonight. And I'm super excited it's Friday tomorrow and NO DOCTORS!!!!
Love to all!