We got a little bit of a surprise on Monday morning. I took Lexi to her therapy and realized she was sounding really wheezy. So we checked her pulse ox and it was in the low 90s. I called the hospital pedicatrician and they agreed to see her in the ER. After a series of testing, bloodwork and X-rays, it turns out poor Lexi Mae has pneumonia and RSV (a virus that attacks small children's respiratory system). With Lexi being a heart baby, this becomes a bigger deal. She is at Blanchard Valley Hospital on the ICU wing.
Today, she is just having a rough time "turning the corner" to feeling better. The pedaitric hospitlists said he's heard 80 year old women who have sounded better than Lexi. They are giving her treatments every 3 hours today to try to knock this out of her and also have her on steroids to help her lungs. Every time they try to take her off her oxygen, her pluse-ox drops into the 80s (it's supposed to be 100). Pleaase pray Lexi will show big improvements today!
As far as her brain surgery goes, we spoke with the cardiologist and neurosurgeon yesterday. They are post-poning her surgery until May 12th as she needs 2 months for her lungs to heal. We're actually thankful that they are post-poning the surgery because after this unexpected stay. I can't imagine turning around and being in the hospital for 10 days next week.
Please keep Lexi n your prayers. Please also pray for my family as they are once again juggling the twins around. Jon is working during the day and coming to the hospital in the evenings so I can run and see the twins for an hour or so before he comes back home and puts them to bed. We are hoping to come on by Friday, but it's completely up to Lexi!
Thank you for your prayers!
Wednesday, March 17, 2010
Saturday, March 13, 2010
Saturday, March 13th- Decision Made
After a lot of research, talking with many doctors and tons of praying, we have decided to move forward with brain surgery for Lexi. (Discussing it usually brings me to tears). We spoke with Lexi's neurologist and the neurosurgeon several times this past week, as well as her local hospital pediatrician and all 3 doctors feel it is best to move forward with Lexi having surgery. Lexi has some unexplained bouts of vomiting and fussiness, especially at night. She also has a significant chiari malformation (9-10mm) and the herniation is actually touching her first vertebra. The concern is, if we wait and do nothing, we may run into an emergency situation. With Lexi being a heart patient, she needs a special team, headed by a pediatric cardiac anesthesiologist, to do this surgery. Doing the surgery now ensures we won't run into any unplanned circumstances and that Lexi will receive the best and safest care possible.
Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.
Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!
Lexi's brain surgery is scheduled for Wednesday, March 24th. She will be the first patient of the day. The surgeon will remove about an inch of a block of bone at the base of her skull and, most likely, the first vertebra as well. If needed, they will also put a small mesh covering on her dura (covering of the brain) if removing the bone alone doesn't get rid of the pressure. She will be in surgery about 4 hours. The doctor is estimating her to be in ICU 3-4 days and in the hospital pediatric unit about 7-10 days.
Prayer Requests:
1. Pray for the team of doctors as they prepare for Lexi's surgery. Pray that the right people are put on her team so she will receive the best care possible. Lexi is "quite a bit younger" than most of the chiari patients that are operated on- and she is only 18 lbs. Please pray for steady hands for the neurosurgeon!
2. Pray for our fears of Lexi going through a second MAJOR surgery (and her 4th total surgery in 16 months). Her heart surgery was a nightmare and we are terrified for her. Please pray that everything goes according to plan! We would love to be home in time for Easter. Even if we can't be at church or with family, we would like to spend it at home with the twins!
3. Pray that we will be able to get a room at the Ronald McDonald House. I will be staying in the hospital room with Lexi, but Jon and my other family members that will be rotating help will need a place to stay. Otherwise, the cheapest hotel at Cleveland Clinic is at least $125 per night. Along with our meal expenses (the cafeteria is good but VERY expensive), this could become a very pricey 10 days. Unfortunately, the RMH at the Clinic goes on a first-come basis. We will not know if we have a room until after 2pm on the 23rd.
4. Finally, pray for the twins, Aleah and Elizabeth, as they will once again be gone from Mommy (and Daddy for part of the time). Jon will stay the 24th- 27th but has to return to work. They will also be bounced around quite a bit during the day while Jon works. Aleah is a mommy's girl and I think this is one of the more difficult parts of Lexi having another surgery- leaving my other 2 little ones again!
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