Monday, March 23, 2009

The Cath is Booked!

As for my monthly update:

Dominic's Cardiology appointment went alright I guess. His oxygen sats would barely stay at 80%, they were 81% before he went in for the Fontan. It sucks that they have not gone up. His blue spells have not lessened either in fact sometimes I feel his lips and nailbeds go blue much more often. The cardiologist didn't act too concerned about his sats. He did say though that he didn't think they would even consider closing the fenestration until after next appointment in 6 months (August). He said we would talk about it then but that if they closed it when his sats were low that may cause a problem with his pressures but that they don't want to wait too long either because his sats are so low. He was a little concerned about Dominic's breathing and had advised that I try asthma puffers again....I have not done so yet. I really don't like the way they affect his behaviour. I don't even no how long they are good for....we have not used them in awhile. He does still cough at night and is a very noisy breather but he always recovers fine.

Anyway so I left cardiology assuming that the fenestration would not be closed for awhile and then last week we got paperwork from Sick Kids. His cath is booked for July 15th. I called Sick Kids to confirm whether this was diagnostic or the fenestration closure. They said it was for the fenestration. I then called Mac to ask if this was some sort of mistake because they had told me it would be awhile. Dr. Mondal called me back today and said that he had consulted with Sick kids and that they would be doing the cath and attempting to close the fenestration....they would balloon it first and see how his sats and pressure changed. Something like that....anyways! Dr. Mondal has a strong accent so it is hard to understand what he meant. Anyway basically they will see if the fenestration closure is a positive thing for Dominic and if it is that is what they will do...if not they will leave it for another time. This kinda sucks because it could potentially mean another cath procedure down the road.

For those who do not understand what I mean by "Cath", I will attempt to explain. Dominic will go in for a pre-cath appointment 2 days before hand....much like a pre-op it will require a lot of time at the hospital and a lot of tests. He needs to be healthy for the procedure. The "Cath" is done in the OR and Dominic is put to sleep. It is basically a mini surgery. I have a hard time looking at it like a surgery because it is so much less then open heart. They use catheters to get to his heart and normally go in from his neck and groin areas....sometimes 3 or 4 different catheters will go in. They use these to repair and messure the pressures in his heart. It will hopefully be only a day in the hospital but if we are second case it may be overnight or if there is any complications. When Dominic had his first Cath we ended up in the hospital for 4 days because of a bad blood clot in his leg. Anyway so it is a stressful couple of days and prayers would be much appreciated. We noticed a lot of wierd behaviours from Dominic after his pre-fontan cath as I think he was more sensitive to a lot of things....more so then after the actual fontan surgery. Hopefully this one will be different. Please pray too that they will be able to close the fenestration and that his heart will react well to the change. ( the fenestration is a hole that they left in his heart during the fontan surgery....this was left in order to avoid a huge pressure change in his heart because of the rerouting.)

On another note Dominic's speech is coming along. He still has a long way to go, but he is attempting to say so much more. They are actually switching his speech from twice a week to only once a month for awhile. I find this a little scary as I am so used to him going all the time. I asked about it and basically this is an alternate to going off block for three months....which means he wouldn't get seen at all for three months. So they will keep on checking in on him. I hope that they get him back in for some regular therapy though before he starts school. The speech therapist has also told me that I need to continue doing signs with him as she is concerned that his teacher will not understand him. We have dropped many of the signs and we understand a lot of what he says. It is hard to go back to the signs and I am not sure whether this is the best thing to do or not. I want his teacher to understand him but I feel if she would have to learn the signs anyway.....why can't she just learn to understand his way of communicating with just a few signs like we do? Dominic is continuing learning counting, letter sounds and names and how to write. He now prints his name all by himself and his printing it quiet neatly. A few weeks ago he also wrote Wii on a piece of paper and was quite proud of himself as I was of him too. He pointed it out to me....."Look Mom Wii" He is just a little bit obsessed with the Wii video games. Anyway academically he is doing well and I think he will be ready for school in September.

Thanks for checking in and for all your prayers!


Sunday, February 1, 2009 has been a long time!

I really should start trying to update regularly. Anyway Dominic sedated ABR came back it looks like his speech problems having nothing to do with his hearing. Now we are looking into Apraxia and continuing with speech twice a week. He is actually doing really well and I am confident that if his teacher listens to him at school she will get to understand him. Although sometimes it does seem impossible to understand him, other times I laugh at the fact that I actually just understood what he said.

Dominic has his cardiology appointment on Tuesday, so pray all looks good. Hopefully we will be able to make it as right now the van is at the shop and the flu bug is going around the house. Dominic is done with it, but if Jodi Lin is home from school or I am sick we obviously won't be able to take him. He will likely need some blood work when we go in too, since his numbers seem to drastically change when he is sick.

I was just putting Dominic to bed and as I thanked God for the doctor's who fixed his heart....he started asking questions. He pointed out his scar and said "here?" I told him yes that is where the doctor's fixed your heart. They had to fix it for you to come home with Mommy and Daddy I told him. He said "no Jodi Lin fix heart" Or something along those lines.....meaning that Jodi Lin heart did not need to be fixed. I told him no just him, he had a special heart. He then asked why? I told him God gave it to him. I don't know if that is the right answer or not. I am not sure, I don't think God necessarily purposely makes these hearts develop wrong...or does he? No one else could do it. Is it just our genetics....but God created those. I found myself quiet confused as well. When Dominic asked why Jesus gave him a special heart that needed to be fixed....he seemed as though tears were starting in his eyes. I told him I did not know. What do you say????? Dominic continued to ask questions about the hospital and his heart, but I couldn't understand what he was asking. He got quite upset and started crying. This also made me sad because he tries so hard. I asked him if it was hard to talk. He said "NO YOU!" I said "I don't understand you?" ...."Yeah!" he said. He doesn't even realize that the words sound nothing like they should or he is just so used to us understanding anyway.

So anyway I have a very bright child on my hands who can't speak like he should be able to. He can now write his name with a little leading....he can't remember the order. He knows his numbers and letters by sight and is starting to write them. He can count to 10 and just loves working in work books. He is so ready for JK....except his speech. I really hope his teacher will just get him. Anyway if you are reading this thinking "I thought she was homeschooling?" you will have to look at the other blog....I will update that too. Anyway that is it for now....if you have any answers or insight into Dominic's tough questions....let me know!

Thank you