Looking back it is
almost surreal. I hardly know what happened when; if it wasn’t for the
record keeping I’d probably be clueless. But I’m getting ahead of
myself.
Monday we drove down to Birmingham, it was a nice sunny
day. After admission and check in we were ready for the pH probe. Anyone
who knows Squeaker, should know she HATES medical professionals. I swear
she can smell it in people. And then they whip out a stethoscope oh by
golly you have a screaming baby. By the time we got up to the GI Lab Squeaker was already pretty upset. First she had to have arm braces put on
that kept her from bending her elbows to get to her face. Next she was
strapped down to the table. As much as she kicks and screams I would
rather have her strapped down than try to hold her. The probe was then
fed through her nose and down her esophagus stopping right above the
sphincter. A quick x-ray to verify position, and an adjustment of the
probe it was securely taped down. The test had begun. The short lived
upside was Squeaker could now eat. It had been nearly 4 hours.
It was a short lived upside because of the arm braces. Squeaker could not hold her bottle; it was too short for her to get at. And of course being the stubborn child she is me feeding her was out of the question. So during the 45 minutes that she was allowed to eat Squeaker managed a mere 1.5oz of milk. Yes I said 45 minutes allowed to eat. That precious 45 minutes would only come every four hours until the test was done. And those would be the only time she could eat or drink. As if having a tube down your nose isn’t tough enough, arm braces and eating restrictions are now in the mix. Poor baby.
Oh and then there was the record keeping. I had to track when every eating time started and ended. Also what time she was sitting/standing up while she was awake, laying down while awake (all clothing and diaper changes), and the same ideas for sleeping, what time she would burp, cough, vomit or have pain. If the paperwork was not with you it can be very hard to remember when things happened.
In between eating times we’d go for walks in the main lobby. There was people playing Christmas music most of the day, wonderful decorations. And of course the stairs, the nice long stair case that was about three stories high. That was a lot of fun to watch Squeaker go up and down them. Remember she couldn’t bend her arms. So it was something to see. She would get tired after about 30-45 minutes of play. So we head up to our room.
Even though we were on the fourth floor our windows looked at the tops of other buildings. But with a TV/DVD combo Veggie Tales were easy to fill in the time gaps. It also gave time for mommy cuddles too. During meal times we could take of one arm brace to let her eat but we had to watch like hawks to make sure that the probe didn’t get pulled at.
The overnight… well that just
stunk. Squeaker is used to getting bottles to go to sleep and when she
stirs in pain we would give her a bottle to help soothe her. If you had
reflux in the middle of the night wouldn’t you want something to drink??
But I couldn’t give her anything. So we walked….walked… and we sang as
we walked… and walked (anyone get the random reference?). In total I
spent around 3 and 3.5 hours walking the halls of the hospital keeping Squeaker calm and sleeping as much as possible. Finally around 5:30 is when
I laid down to sleep, with Squeaker propped up in my arms. I woke up
around 8 and Squeaker woke up about 8:30 am, Squeaker was done!!!!
She was hungry, tired, sore, and probably angry. She screamed and cried
until it was time to eat at 9:30. Once she got her milk she was happier.
Then eggs, cherrios, and strawberries were gobbled up. In the middle of
breakfast we got a call from the lab. They had someone coming in for a
test at 11am. It would take over two hours. So they had decided that
they were going to come early to take the probe out.
YAY!!!!!!!!!!!!!!!!!!!!!
Probe was out and we were discharged by 11am.
Dr. King (the Gastroenterologist) did stop by a couple of times. And unless for some odd reason Rayne’s test comes back with a perfectly neutral pH level of 7 he will be sending her in for surgery since we don’t have another other medical options. But this test lets us know what to expect of the surgery. If Squeaker’s levels are BELOW 4 (highly acidic) a lot of the time then surgery will be a practical cure. If she is in the 4-5 Surgery is still call for but we can only expect it to be say 80% effective. So she may need mild meds to help out. But either way it would be a great improvement from the current situation.
The other reason for the test is for the surgeon. Dr. King believes that surgery (especially this one) is more of an art than a procedure. So he only likes to use the best available, who requires this test. In the long run I’d rather suffer for a day and get the best then just take any ‘just let me cut’ doctor.
Having mom there was awesome. A
complete life saver, I didn’t have a clue what to expect this time
around so she helped me figure out where everything was and who we
needed to ask for certain things. So during surgery if I’m there by
myself well I’ll know what to do. She was there to let me know I could
do this oh and she put up with me snapping at her when I was just past
exhausted.
During our stay as hard as it was I felt so blessed the entire time. At check in the girl in front of me was 17 and battling Cystic Fibrosis. In our wing there was a little girl 7 years old that was brought down that day in near critical condition with Juvenile Diabetes. She also had a 5 week old little brother that had the flu. That poor mom was having a very hard day. Then of course the next wing over was for restricted access cancer patients. Sure life can be hard with Squeaker but boy are we blessed. She is such a wonderful little girl with a great spirit and attitude. Heavenly Father has entrusted me with His daughter and I have to treat her like the princess that she is.
Update: Rayne passed and did not need surgery a scope showed another issue entirely.
 |
| walking around at night |
It was a short lived upside because of the arm braces. Squeaker could not hold her bottle; it was too short for her to get at. And of course being the stubborn child she is me feeding her was out of the question. So during the 45 minutes that she was allowed to eat Squeaker managed a mere 1.5oz of milk. Yes I said 45 minutes allowed to eat. That precious 45 minutes would only come every four hours until the test was done. And those would be the only time she could eat or drink. As if having a tube down your nose isn’t tough enough, arm braces and eating restrictions are now in the mix. Poor baby.
Oh and then there was the record keeping. I had to track when every eating time started and ended. Also what time she was sitting/standing up while she was awake, laying down while awake (all clothing and diaper changes), and the same ideas for sleeping, what time she would burp, cough, vomit or have pain. If the paperwork was not with you it can be very hard to remember when things happened.
In between eating times we’d go for walks in the main lobby. There was people playing Christmas music most of the day, wonderful decorations. And of course the stairs, the nice long stair case that was about three stories high. That was a lot of fun to watch Squeaker go up and down them. Remember she couldn’t bend her arms. So it was something to see. She would get tired after about 30-45 minutes of play. So we head up to our room.
Even though we were on the fourth floor our windows looked at the tops of other buildings. But with a TV/DVD combo Veggie Tales were easy to fill in the time gaps. It also gave time for mommy cuddles too. During meal times we could take of one arm brace to let her eat but we had to watch like hawks to make sure that the probe didn’t get pulled at.
 |
| I swear the pack weighed as much as she did. |
Probe was out and we were discharged by 11am.
Dr. King (the Gastroenterologist) did stop by a couple of times. And unless for some odd reason Rayne’s test comes back with a perfectly neutral pH level of 7 he will be sending her in for surgery since we don’t have another other medical options. But this test lets us know what to expect of the surgery. If Squeaker’s levels are BELOW 4 (highly acidic) a lot of the time then surgery will be a practical cure. If she is in the 4-5 Surgery is still call for but we can only expect it to be say 80% effective. So she may need mild meds to help out. But either way it would be a great improvement from the current situation.
The other reason for the test is for the surgeon. Dr. King believes that surgery (especially this one) is more of an art than a procedure. So he only likes to use the best available, who requires this test. In the long run I’d rather suffer for a day and get the best then just take any ‘just let me cut’ doctor.
Having mom there was awesome. A
complete life saver, I didn’t have a clue what to expect this time
around so she helped me figure out where everything was and who we
needed to ask for certain things. So during surgery if I’m there by
myself well I’ll know what to do. She was there to let me know I could
do this oh and she put up with me snapping at her when I was just past
exhausted. During our stay as hard as it was I felt so blessed the entire time. At check in the girl in front of me was 17 and battling Cystic Fibrosis. In our wing there was a little girl 7 years old that was brought down that day in near critical condition with Juvenile Diabetes. She also had a 5 week old little brother that had the flu. That poor mom was having a very hard day. Then of course the next wing over was for restricted access cancer patients. Sure life can be hard with Squeaker but boy are we blessed. She is such a wonderful little girl with a great spirit and attitude. Heavenly Father has entrusted me with His daughter and I have to treat her like the princess that she is.
Update: Rayne passed and did not need surgery a scope showed another issue entirely.
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