I haven't been posting many words, because I haven't had
much time, or the thought process to be able to compose anything that
would even sound logical. Nothing about this hospital stay has been
easy to explain. Last night I started trying to type it out and
realized it was going to be an extremely long post, so instead of that, I'm going to just hit the highlights of the past couple of weeks.
On Tuesday, January 14th, he went to the OR to get the axillary balloon pump, that was supposed to allow him some mobility. He said it was brutal and the pain was excruciating. Nausea and vomiting.
Wednesday, January 15th, pump not working right, couldn't be fixed bedside, back to the OR to try to advance it and there was a clot at the graft site and they weren't able to advance it, or replace it. Pump was removed and Swan placed back in his neck, on the left side. Nausea and vomiting.
Friday, January 17th, my middle Son's 37th birthday and like last year we are at the hospital. Sorry RJ.
Saturday, January 18th, hematology told him he is homozygous (two mutated copies) for MTHFR gene.
Sunday, January 19th, still nauseous and vomiting... has been since surgery.
Monday, January 20th, frustrated, still suffering with nausea and vomiting and ended up telling off one of the doctors that talked to him about a medication addition, which Michael didn't want scheduled, only as needed. Doctor walked out of room, straight to the computer and scheduled it anyway. When his nurse told him what the doctor had done, he had the nurse send him right back in and let them have it. They agreed to do the medication as needed, which was what Michael had agreed to. The medication was to knock him out all night and he didn't want more drugs than he was already taking.
Tuesday, January 21st, the arterial line in his wrist wasn't working right and they tried to fix it. Still not working, so they inserted one higher on his arm. That one stopped working as well, so they ended up taking it out.
Wednesday, January 22nd, still nauseous, vomiting and only wanting to sleep.
Friday, January 24th, running a low-grade fever. They are concerned about possible infection. He did manage to get up, but got sick. They are planning to try him on Marinol (synthetic marijuana) to see if they can get him able to eat. Removed PICC line that had just been replaced and removed foley. (potential sites of infection)
Saturday, January 25th, to the Cath Lab to remove Swan on left side of neck and place another one on the right side. Also had to take care of a blockage. First night on Marinol. Had a horrible night, violent leg jerking, hand movements and hallucinations. Medications are a huge issue, especially since he hasn't been able to eat.
Sunday, January 26th, traumatized from episode last night, crying and barely able to explain how it made him feel. He thought he was dying.
Monday, January 27th, FINALLY HAD A DECENT DAY, THANK GOD! Medications have been tweaked, Marinol discontinued, he was able to eat some food and keep it down and WAS ABLE TO WALK. Violent leg jerking and hand motions have stopped.
I apologize for not updating and for this being long. Thank you to everyone for your kind thoughts, prayers and emails. We are hoping he can get more comfortable, regain some strength and put back on some weight, since we have no way of knowing how long it could take before he gets a heart.
Here is another photo from an amazing blogger that is fighting her own battle with cancer and is also a caregiver for her mother. God bless you, Vicky. You are in our thoughts and prayers!
On Tuesday, January 14th, he went to the OR to get the axillary balloon pump, that was supposed to allow him some mobility. He said it was brutal and the pain was excruciating. Nausea and vomiting.
Wednesday, January 15th, pump not working right, couldn't be fixed bedside, back to the OR to try to advance it and there was a clot at the graft site and they weren't able to advance it, or replace it. Pump was removed and Swan placed back in his neck, on the left side. Nausea and vomiting.
Friday, January 17th, my middle Son's 37th birthday and like last year we are at the hospital. Sorry RJ.
Saturday, January 18th, hematology told him he is homozygous (two mutated copies) for MTHFR gene.
Sunday, January 19th, still nauseous and vomiting... has been since surgery.
Monday, January 20th, frustrated, still suffering with nausea and vomiting and ended up telling off one of the doctors that talked to him about a medication addition, which Michael didn't want scheduled, only as needed. Doctor walked out of room, straight to the computer and scheduled it anyway. When his nurse told him what the doctor had done, he had the nurse send him right back in and let them have it. They agreed to do the medication as needed, which was what Michael had agreed to. The medication was to knock him out all night and he didn't want more drugs than he was already taking.
Tuesday, January 21st, the arterial line in his wrist wasn't working right and they tried to fix it. Still not working, so they inserted one higher on his arm. That one stopped working as well, so they ended up taking it out.
Wednesday, January 22nd, still nauseous, vomiting and only wanting to sleep.
Friday, January 24th, running a low-grade fever. They are concerned about possible infection. He did manage to get up, but got sick. They are planning to try him on Marinol (synthetic marijuana) to see if they can get him able to eat. Removed PICC line that had just been replaced and removed foley. (potential sites of infection)
Saturday, January 25th, to the Cath Lab to remove Swan on left side of neck and place another one on the right side. Also had to take care of a blockage. First night on Marinol. Had a horrible night, violent leg jerking, hand movements and hallucinations. Medications are a huge issue, especially since he hasn't been able to eat.
Sunday, January 26th, traumatized from episode last night, crying and barely able to explain how it made him feel. He thought he was dying.
Monday, January 27th, FINALLY HAD A DECENT DAY, THANK GOD! Medications have been tweaked, Marinol discontinued, he was able to eat some food and keep it down and WAS ABLE TO WALK. Violent leg jerking and hand motions have stopped.
I apologize for not updating and for this being long. Thank you to everyone for your kind thoughts, prayers and emails. We are hoping he can get more comfortable, regain some strength and put back on some weight, since we have no way of knowing how long it could take before he gets a heart.
Here is another photo from an amazing blogger that is fighting her own battle with cancer and is also a caregiver for her mother. God bless you, Vicky. You are in our thoughts and prayers!
