We came home from our wonderful trip to Virginia and we were exhausted. Like I said, Kurt and I just didn't adjust to the time change and we were wiped out. I guess this proved to us that neither of us had fully recovered from our health issues from the previous months.
We came home on Wednesday (July 9th) and that Friday (the 11th) Evan had surgery. He had a cyst on the bottom of his left big toe. It caused him pain when he ran and played and had been complaining for months so it was decided that it needed to be removed. He was such a trooper. He was nervous but was very mature during the whole ordeal. He was most nervous about the iv going in - who isn't, right? He was working up to a big crying attack and then realized it was done before he even got started. Thank goodness for a quick (and accurate!) nurse who got it fast on the first try.
He was very excited to have crutches. When they wheeled him out to the car in the wheelchair he kept asking about his crutches. We reassured him that we had them and he could use them at home. The thrill lasted about 3 times and then he didn't like them anymore. He had to stay completely off of his foot so this is what he did:
He sat on the couch for weeks. The "go outside and play" mom in me was going nuts but what could he do? Before the surgery we told him we would buy him a Wii U game that he really wanted. He had the whole thing beat in 3 days. Sheesh. We tried to do lots of different activities that didn't require him to move and that were not electronics but it was challenging.
After his 1 week check up appt I took him to Target to get a Lego set. I thought that would be a good brain using activity. He was thrilled to get to drive the electric wheelchair.
3 weeks after his surgery he was able to start walking on it but it was a rough transition. He limped really bad for a really long time. He is now finally running and playing again BUT the cyst has grown back!!! Urgh! So now we are trying to figure it out what to do. If we operate again, it could grow back again. We are going to let him enjoy his soccer season and see where we are when it is over.
The day Evan had surgery was also Trevor's birthday. We did not plan on doing anything for him because we didn't know how Evan was going to be doing. Driving home from the airport on Wednesday Trevor started telling us what he wanted for his birthday. He said "I want fire and friends" meaning candles and friends to celebrate with. Ummm . . . that wasn't in the plans.
Well, Evan was going great that afternoon after his surgery so we called some family and friends and pulled together an impromptu birthday party. I took him to the store and he picked out his candles (little dinosaurs) and the 3.
He had his fire and friends and was one happy boy!
The weeks leading up to all this Kurt had been either mentioning additional chest pressure/discomfort or had been putting his hand to his chest which I know is a sign that he is uncomfortable and feeling something. The following Tuesday (the 15th) Kurt got up early and drove to a nursery that is about 2 hours away to get some plants he needed for a job. He had felt fine when he left but once he got there, he wasn't feeling good. He called me and I was like "get your booty home now! You are 2 hours away from me and I can't help you from this far away." He decided to get the plants that he needed because he was already there and then head home. I was rather nervous, to say the least. When he was driving home his primary doctors office called to confirm an appt he had for that Thursday for something else. He told them how he was feeling and the nurse said he either needed to come in immediately or go to the ER. Well the boy did NOT want to go to the ER so he went straight to their office and I met him there. The doctor was not happy that we went to the office. Kurt was complaining of chest pressure/pain, dizziness, weakness all over, feeling very heavy, feeling like someone was sitting on him. They took his blood pressure and did an EKG. All came back normal. His doctor said "Here is where I am at. I am trying to figure out how serious this is. Do I call an ambulance to take you to the ER or let your wife drive you?" Kurt did not want to go in the ambulance so he agreed that he would let me take him immediately. So we dropped off his truck at the house and went to the ER.
The one good thing about Kurt's condition is he gets immediate service at the ER. We walked in and I told the first lady that we had to speak to that he has a dissected celiac artery with an aneurysm and he is having chest pain. Man, a ripple effect went out through the ER and they were taking him back into a room before the lady had a chance to get his bracelet on him. They started an iv immediately, drew blood, did another EKG . . . People were coming in an out of his room so fast it was crazy and scary. They all said the same thing "This never walks into the ER." Yes, we know! They all want to know everything about it and asked a lot of questions because they just don't get exposed to it. Once it was deemed that his kidneys were fine, they ordered another ct scan. After that was done, we waited for the results. The doctor came in and said "your scan is normal. They don't see anything wrong." I said "Well tell them to look again because the dissection and aneurysm are in there!" Luckily I had thought to grab a CD of his last scan in May and gave that to them so they could load it and compare the images. She said that if the report came back normal, they wouldn't keep Kurt and would send him home. So at this point, Kurt got dressed. He was DONE being in the hospital. It was torture to him. She came back a little bit later and said that the technician had modified the report and stated that it was stable and had not changed since May. Whew! That's what we were hoping for. (Although we didn't know if we could really trust this technicians report since they hadn't even seen it the first time!) Kurt was like "Great, lets go!" but the doctor said "we want to admit you."
WHAT!!!! No no no, you said if it was normal you wouldn't admit him!
They were concerned about the symptoms he was having because they could be indicators of a heart attack so now that they had concluded that his dissection was stable, they were worried about his heart. We didn't know what to do. She wanted to admit him to the cardiac unit and do a stress test the next day. We both felt very strongly that he didn't need to stay but was that because that was a prompting that we were receiving or the absolute fear of being readmitted and stressing the kids out again and all the other things that would come along with that. We weren't sure but we just felt that he didn't need to stay so we opted to leave. We had to sign papers stating that we understood the risk of death (very comforting) and the nurses that we walked past were all shocked that we were leaving. While I was
scared, terrified for him, I really felt it was the right decision to go but it was still hard to leave. I have a little level of comfort at the hospital because if something happens, they are there to help. At home, I am all by myself until an ambulance could get there and that scares me! Kurt, on the other hand, wants nothing to do with the hospital and can't leave fast enough.
We followed up with his primary who referred us to a cardiologist. We then had to wait for that to be approved through the insurance, and then wait for the appt. The cardiologist ordered the stress test which we then had to wait for that. When Kurt was released from the hospital in February they gave him some nitro pills. His primary told him to carry those around with him incase he had a heart pain, he could use those. It was a stressful few weeks while we waited. Maybe staying overnight and getting it done the next day would have been worth all the problems admitting would have caused??? Who knows. Finally he was able to do the stress test and it came back totally fine. The cardiologist was not worried about his heart at all. WHEW!
Kurt and I think it is related to stress. When he gets stressed he feels it in his chest. That must be where his body puts the stress which could be what caused his whole dissection problem to begin with maybe. Who knows. So he has been trying not to stress - easier said than done, right? He is doing a good job but trying not to stress causes a certain level of stress in and of itself.
That all happened back in July and August. He has been doing pretty good in August and September. He wants to start exercising but I won't let him until his next follow up appt. He goes in for the ct scan today and then sees his doctor in 2 weeks. Please continue to keep him in your prayers!