Showing posts with label The Floyds. Show all posts
Showing posts with label The Floyds. Show all posts
Monday, April 1, 2013
Thursday, February 16, 2012
Long Week...Post Op infection Picture...
I think time has actually stopped!
This week is going on forever! I just want to go home!!!!
Ben's infection is finally starting to clear after 4 days of IV antibiotics. Even though the picture still makes the sites look angry and down right nasty, it is a million times better than what it was! Auntie ACE this picture is for you, by the way! I emailed it to you this morning but just in case you don't get it, I thought I would put it on here as well.
Ben's infection is finally starting to clear after 4 days of IV antibiotics. Even though the picture still makes the sites look angry and down right nasty, it is a million times better than what it was! Auntie ACE this picture is for you, by the way! I emailed it to you this morning but just in case you don't get it, I thought I would put it on here as well.
As far as pain control, Ben is on a whole cocktail of medications. The morphine seems to be working quite well in addition to his IV anti-inflammatory. The poor kid hasn't had much sleep so it is a blessing that the medications force him to sleep.
His feeds are going well and this morning he was up to 4.672 Kg. The NG is long gone and all feeds are more or less on demand by mouth.
Child Life brought in a bouncy chair for Ben to use, since he can now sit up and enjoys looking around. Child Life also arranged a visit from Buddington the therapeutic clown, for Harrison. Harrison loved watching the clown blow bubbles and sing songs with him.
We spent Valentines day in here with Ben and Harrison. Ashley got a Chinese takeaway and we watched TV and played with the boys. Romantic AND exciting no??
The decision was made this morning to keep turning the screws at least one more day and to "hang on to us" until Ben's pain is being managed a bit better, not to mention the infection needs to clear a bit more.
I just want to go home! It will be so nice to put Ben in a regular car seat and drive off to the normal world and be able to stop feeling like a permanent hospital resident!
Just think in a few weeks we will be readmitted to have the hardware remove and all this will start again....OH JOY!
Tuesday, January 17, 2012
Frustration
Today marks another day of frustration. It was the start of the overwhelming set of appointments we have for Ben this week.
Ben's weight gain was non existent. Dr.Cogswell however did not seem concerned. While his weight is identical to what it was last Tuesday he has put on over a centimeter in length. The doctor reassured me all of his other growth measurements are fantastic...he just isn't putting on weight.
I am not sure there are words to express my frustration adequately. I honestly am not sure what more can do. I have increased the amount offered to Ben at every feed ( even if he doesn't take it) and I am making sure his feeds aren't spaced out too far. I wish I knew what to do.
Ben's weight gain was non existent. Dr.Cogswell however did not seem concerned. While his weight is identical to what it was last Tuesday he has put on over a centimeter in length. The doctor reassured me all of his other growth measurements are fantastic...he just isn't putting on weight.
I am not sure there are words to express my frustration adequately. I honestly am not sure what more can do. I have increased the amount offered to Ben at every feed ( even if he doesn't take it) and I am making sure his feeds aren't spaced out too far. I wish I knew what to do.
Dr. Cogswell seems to agree with his local pediatrician that he is doing well in all other aspects other than the weight gain and perhaps a special prescription for a human milk fortifier may help to increase the calorie content enough for him to thrive and gain the much needed weight. We will be seeing his pediatrician, Dr. Hilliard, tomorrow to discuss this option.
On the plus side Dr.Cogswell felt Ben's airway management was much better and that he was very content and not as distressed as his last visit. His lungs were clear and he was able to have his second RSV injection today (right on schedule!) which was a huge relief.
Thursday we have the outpatient cleft palate team appointments. We will be seeing several doctors, surgeons and specialists along with the feeding team, and finished off with an appointment with the geneticist.
To be honest the whole situation is getting overwhelming and makes me feel more than a bit sick. The situation lends itself to making one feel like a bad parent even though no one has come right out and said that. I know it seems bad now but I can't imagine how bad it would be should he require readmission and an NG tube or worse. I know Ben will be having surgery within this next year or so and I don't know how I will mentally cope with that. I just hope this whole medical situation resolves itself sooner rather than later before Ben is old enough to remember any of it.
He is a VERY strong little boy....I honestly wish I was as strong.
Sunday, January 1, 2012
Sunday, December 25, 2011
Saturday, December 24, 2011
Day Dream?
I think I must be dreaming....we are getting a 30 hour pass to go home for Christmas!!!
Ashley packed...I got myself and Ben ready...we went to the NICU and had the nurse check Ben and the straps in his car bed.
Ashley took a load of things to the van...and then we left. I kept thinking someone was going to stop us. We went through both set of NICU locked doors and no one did. We made it to the elevator, then the lobby. We handed in the registration of live birth form and got in the van.
While we were driving away, I watched the hospital fade from view. No one stopped us. We were really going home...even if only for 30 hours. We were going to have Ben, Harrison and Victoria all in one place for the first time. No doctors, no nurses, no alarms, no monitors...I get to sleep in my own bed tonight and have a shower in my own bathroom with a towel that smells like fabric softener not "hospital". Suddenly the fact I didn't get all the shopping done I had wanted to didn't matter, the fact nothing is wrapped and under the tree doesn't matter, nor does it matter the BIG family dinner at my place isn't going to happen tonight. All that matters is we are all going to be home.
I keep expecting this to be a dream and wake up in the room that is always dark no matter what time of day. If this isn't a dream I am going to get what I really wanted for Christmas, my husband, my kids and myself all at HOME for Christmas.
Ashley packed...I got myself and Ben ready...we went to the NICU and had the nurse check Ben and the straps in his car bed.
Ashley took a load of things to the van...and then we left. I kept thinking someone was going to stop us. We went through both set of NICU locked doors and no one did. We made it to the elevator, then the lobby. We handed in the registration of live birth form and got in the van.
While we were driving away, I watched the hospital fade from view. No one stopped us. We were really going home...even if only for 30 hours. We were going to have Ben, Harrison and Victoria all in one place for the first time. No doctors, no nurses, no alarms, no monitors...I get to sleep in my own bed tonight and have a shower in my own bathroom with a towel that smells like fabric softener not "hospital". Suddenly the fact I didn't get all the shopping done I had wanted to didn't matter, the fact nothing is wrapped and under the tree doesn't matter, nor does it matter the BIG family dinner at my place isn't going to happen tonight. All that matters is we are all going to be home.
I keep expecting this to be a dream and wake up in the room that is always dark no matter what time of day. If this isn't a dream I am going to get what I really wanted for Christmas, my husband, my kids and myself all at HOME for Christmas.
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