Hi everyone! Sorry again for the lack of updates ! Unfortunately we are still inpatient! Tys drains around the heart were removed on Sunday. The echo from that morning showed essentially little to no fluid around his heart. The plan had been to give him a day or so with no drains in and continue with steroids, then recheck yet another echo today. Sunday and Monday night we dealt with nosebleeds that wouldnt stop. Sunday after holding pressure forever it seemed, the bleeding stopped. Last night however we could not get it to stop, so the doctor put topical thrombin powder up his nose to form a clot. This worked well until this morning when he was messing with his nose and pulled a huge clot out. The bleeding has been a slow off and on drip since then. It is more annoying than anything right now. He did need to get platelets this morning too because those had dropped back down to 36,000. It is SO dry in the hospital and that is most likely irritating his nose--they added nasal saline, Vaseline , and afrin to our regimen to see if it will help. They just had to do thrombin again as I am writing this. The bleeding picked up again and he was spitting up clots and getting pretty nauseated. Back to his heart.... Ugh! Do u ever have those days where you want to just throw yourself on the ground and have an all out tantrum??? Maybe thats just me. Well today is my day! Tys repeat echo this morning showed a substantial reoccurrence of fluid around his heart---especially the back of his heart. This was my fear but the cardiologists were very determined that the tubes came out on Sunday due to high risk of infection....now a whopping 2 days later it is probable they will be putting them back in. It does not make sense to me ! This is so frustrating sometimes! I know so many others are dealing with much bigger issues but Ty is getting super down in the dumps--we need to catch a break! He wants to go home SO bad!! Tomorrow he will have a repeat echo to see the extent of increase in fluid overnight. Then cardiology will consult with the BMT docs to come up with a plan. Today is day +70.....we are supposed to be able to leave around day +100...even though this is best case scenario, it is the number weve always focused on. As we are getting closer it is getting ever more real that we are very unlikely to be going home on schedule---I guess the OB that I am seeing here isnt as crazy as I thought!! She wants to schedule my c-section (in April) up here--just in case. As much as I dont want to even consider this, it is a real possibility. That is all I know for tonight! Ill try to update more tomorrow after cardiology comes up with a plan. Have a good night! Hoping everyone is staying safe and warm! It is cold here but there isnt much snow...maybe a couple inches. Thank you for checking in on us!
Posted on: Wed, 07 Jan 2015 02:15:12 +0000
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