December 29, 2014 we headed out bright and early 8:20am to Primary Children's Medical Center (PCMC) Joel's apt is at 10:00 am but we had a snow storm and needed to complete paperwork. The traffic was horrible but we made it by 9:40 am. I filled out paperwork, well kinda. Most of it said Adopted Unknown. This always makes me a little sad. Once the paperwork was done they brought us back for a chest X-Ray. This gave us our first surprise. Joel's stomach and liver are on opposite sides that they should be. The doctor didn't seem to concerned by this so I didn't let it bother me.
Joel then had an ultra sound on his heart (we heard to many terms today so I forget what this was called). They showed us how Joel has only 2 Atrium's and 2 Valves in stead of 4. Very interesting to see and wonder why his little heart just didn't form as it should but also amazing to know with surgery they can make his heart work. I asked the doctor if they see this much and he said yes he sees it quite a bit. The also did an EKG, took his blood pressure, etc.
I then asked the doctor to check out his hernia and see if he thinks he penis looked ok. He said he does have a hernia and yes he will need to be circumcised because the foreskin does not pull back like it should. He said these things we would fix after his heart is figured out. I then asked if his having cavities was a problem and how soon we should address this. I am pretty sure Joel has a cavity in his front tooth. The doctor was most concerned by this and said to get it fixed right away because if it gets infected it could go right to his heart. So I got Joel an appointment to the dentist.
We then talked about needing to know more about Joel's heart so he wanted to do an MRI and a cath to get a better picture of what is going on. He also wanted blood work done, he is curious to see if Joel does or does not have a spleen. We were told he does not but the doctor wants to make sure. That would change so much for Joel if he had a spleen. I am praying some serious prayers that he indeed does have a spleen. So Joel had to go down and have lab work done. The lab lady tried in his hand and failed so called in help and they got it done in his arm. I hate that they had to poke my sweet boy more than needed but he was so good. He cried in his hand but didn't make a peep in his arm.
Joel's oxygen levels are just to low, that is why he is blue. So they ordered oxygen for him while he sleeps. If they can't get it under control they will have to have him wear it all day. Oh how I hope this doesn't happen night will be hard enough. So Intermountain Health Care came and set us up for oxygen. Joel was also sent home with this thing strapped to his chest. They want to monitor him for 24 hours. I hope he keeps it on and they get a good reading.
Today the doctor took him off his Furosemide that the doctor in China placed him on. He also upped the aspirin he is taking from a half pill to a whole pill so he now takes 81mg of aspirin a day. Aspirin is easy to give him so I am happy about this medicine change.
OVERALL, the doctor thought Joel looked great and was in great health. He was impressed that his valve was only leaking a tiny bit. At this point he needs more information before he can put together a plan but he was happy with the first appointment. He told me to get him into our pediatrician and get his immunizations started (we always re do these here because never sure what they have really received).
So today to sum it up was OVERWHELMING but much more HOPEFUL than I ever thought. Maybe now I can get some sleep I think this appointment had me more worried than I ever realized.
Walking out of the hospital I looked at my amazingly supportive husband wheeling out a tank of oxygen. I said Honey I never imagined this would be our life. But I am so glad I have him to help me get through it because together we can do this. Joel deserves THIS LIFE, the best medical care the world has to offer. He deserves a family, love health and happiness. Were BLESSED that we can be this for him, we LOVE this sweet boy!!!
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