Getting Lots of Attention Today!

We got the lovely news today that her infection IS in her blood. To put it nicely, AWWW CRAP!! So, because of that, she now is the proud owner of two new peripheral IV's, another antibiotic, and we said our goodbyes to her PICC line that she has had since February. Good job Dr. Bocks for putting that good line in! It lasted ALOT longer than typical. We are hoping that the new IV's last at least a couple of days so that her blood can be sterilized through the new lines and then we can send her to the cath lab to get another one. grrrrrrrrr. Crappy, but something we have to do since she is still on IV lasix and getting a load of antibiotics. Praying for those lines to hold but will be difficult since some of the antibiotics are so harsh and should really be administered through a stronger line, like a PICC. So, prayer warriors on high alert! Pray for the lines to hold there own, the antibiotics to do their job and fight this infection, and for Lindsay to start feeling better. Speaking of that, thank you all for the great comments about Lindsay's new blog photo. I do have to tell you though that that is not her right now. This is one of Patti's wonderful shots of her from just a few days before transplant. Unfortunately, she is not that happy right now and is just plain wiped out. Trust me, I wish it was!
We had some visitors today and had great visits with them all. Aunt Carole and Uncle Robb stopped by for a while and as always, so good to see! We also had a visit from Becky, Layla, and Zelly Muhammad(flew in today from Arkansas) and Cindy Fogg. We had a yummy dinner with them and it was a great distraction from the day that we had......or should I say, that Lindsay had. ;-) Thank you again! We had a great time.
All for now.
Love, Suzie

Infection.....

From the blood cultures taken yesterday, one of the lumens coming from her PICC line tested gram positive. The weird part of it all is that her white blood cell count was lower today than yesterday BEFORE the antibiotics started. Things that make you go hmmmmmmm. (remember that song??) ha ha So, today they went ahead and took a urine sample as well just to make sure the right antibiotics are on board. Lindsay also had ALL of her stitches removed today. Three chest tube sites and her canulation site from being on ECMO. One step closer everyday............
The antibiotics will last 2 or 3 days and hopefully they won't have to pull that PICC because we still need it for diuretics (which they will start to ween starting tomorrow or so), now antibiotics, and for lipids. Her feeds are going fairly well now and she is back to 35 cc's per hour and her goal is 40. The other change that they made was changing the frequency of her Valium dose. She will now be on a 0.1 ml dose (very small but it works great!) every 8 hours instead of every 4 hours from 9a until 9p and nothing at night. With the other, she was snowed all day long and just slept instead of doing physical therapy, etc. Today has been much better and we have seen many more smiles! Praying for even better days ahead!
Love, Suzie

The last few days

The last few days have been pretty low key. Just trying to keep her comfortable and trying to get her to tolerate feeds when we get to the higher rate per hour. X-ray indicates that she has some barium (sp) in there somewhere from the swallow study and really don't want that to get stuck and then bind her up. So, basically, trying to get her pooping so that she will pass that. Then maybe her belly problems will be over. Let's hope so because that is one step closer to blowing this pop-stand!!!!!!
Labs indicated this morning that she had an elevated white blood cell count so they drew blood cultures to see if anything is brewing. She does not have a fever, but has been sleeping more than normal. Let's just pray that she is just healing and not trying to fight off anything. If she is, they are on top of it and then she starts IV antibiotics. If anything, I'm thinking a UTI. hmmmm. Let's hope that I am wrong! Otherwise, all is well and she is gaining every day.
On a sad note, a heart baby passed away here yesterday. Ethin Twigg was born in January with HLHS. He has had a tough road and unfortunately coded yesterday and they could not resuscitate him. Please pray for his mom, Jessica, and the whole Twigg family. We are just heartbroken.
I will update more as we get results. The praying continues......
Love, Suzie

Praying from the South Carolina coast!

Thanks for the photo Kerri! (Mary Clare's mom. Mary Clare is another heart sister of Lindsay's and linked to her page.)

Versed.........drug of choice?

OK, I will explain that title in a minute but first we have to tell you that Lindsay has not one, not two, not three, but four teeth trying to pop through!! OUCH!!!!! One of them being a molar! So, that explains her being irritable.....hopefully. Around 5pm, JR and I ran to Walgreen's to get some teething meds (hospital doesn't carry those....go figure!) for Lindsay to try. They worked for a bit and then we decided to give her a little more relief with stronger drugs. This is where the versed comes in. 1/2 of a dose and she started to clam a bit. We laid her down and she was just starring and admiring her daddy. Yes people, she focused on him and then proceeded to grab his nose!!!! I can''t even begin to tell you how excited we were with that. But, that's not all! We then witnessed her smiling behind that pink passy of hers. Nurse Jen pulled the passy out so we could see that beautiful smile! I sat her up and all within about 5 minutes or so, Lindsay giggled, wrinkled that cute little nose, waved (backwards of course!), smiled some more, played with her PICC line tubes, held her head up without help, grabbed her fabric covered flower that she plays with and swung it around a bit, and actually smacked her lips as if giving a kiss mimicking Jen after she did it to her!!!!!! Can I say that we had a great night!!! This was so exciting because with most of these happenings, she was focusing a bit and we could tell that she could see us! We were watching through tears, but we saw it all! Hopefully the only thing slowing her down right now is her teeth. She will still be getting vigorous physical therapy and her swallow study will be tomorrow morning. This will be interesting to see where her food actually travels to. She will also be getting an echo tomorrow as well. Talk of her biopsy will be next week some time and we are probably moving to the floor or moderate care tomorrow as well. The other highlight of the night was that we were able to dress her! Yeah to getting to wear clothes now! Do you think that I can find something PURPLE to put on her?? ha ha
Here's to miracles today! Keep those prayers coming!
Love, Suzie

Results

Well, MRI results really just showed what we pretty much already knew but also didn't show anything that we didn't. Does that make sense?? In other words, no real surprises. That is good but we for sure now know that she does indeed have damage. The damage is in the part of her brain that controls vision. The MRI also showed other little damaged areas that will effect her motor skills. However, we and the doctors think that is really not a huge issue because she is moving her legs, arms, etc. just fine as of right now. This will just take physical therapy everyday now instead of 2 or 3 times per week as she was before. Back to the vision. We know from just watching her that her vision is definitely impaired. We have been told that her age is definitely on her side and as time goes by, the other side of her brain should compensate and things should be close to normal again. Just later on at some point, she just need glasses. If that is all that she needs after this, get her 5 pair!!!! ;-) Every one is different though and we have to get into the mind set that this may not return as one of the possibilities. By examining her, she is definitely just near sighted if any. Her peripheral vision is not at all as far as we can tell. Praying that time means healing. She is still very weak and to top it all off, she is cutting a top tooth! Poor baby! She was uncomfortable tonight before we left so we broke down and gave her a 1/2 dose of morphine so that she could sleep. Praying that that happens.

I have finally updated photos, so scroll down to the previous posts to see them. Some are not pretty, so I am warning you in advance.

All in all, we have had a good day and look forward to another small improvement tomorrow. Maybe even a ride over to Moderate Care??? I will keep you posted.

Love, Suzie

PS I can't end without saying a big "THANK YOU" to Hearts of Hope! A few of the members brought quite the spread to the hospital last night for dinner and we were very grateful. Thank you again and so nice to finally meet some of you that we have heard so much about.

Uneventful Day.......and Eventful Day

These are the days that we like along with a little progress! MRI is scheduled for 11am tomorrow morning. Please pray that everything turns out fine and that all we need is time for our baby to return to normal. We HAVE time! Otherwise, she is tolerating 10 cc's per hour feeds and all she needs is tylenol to stay somewhat comfortable. AMAZING!!!
Ok, now for the big news around Mott today. Tommy Shomaker, I'm sure, had one of the best days of his life. If you just happened to watch our Detroit Tigers play this evening, you saw Brandon Inge sporting a new "tattoo". Well, he made a special trip to Mott today to see Tommy because the last time he was here at the hospital, Tommy got his angel heart and was unable to see him. Brandon somehow heard that story and made a special visit for him! Anyway, during his visit with Tom, Brandon asked to get HIS autograph. He had Tommy sign his arm so that when he was up to bat, everyone watching would see it. So cool, I KNOW!!! Anyway, Brandon arranged to have it announced to everyone explaining his new "ink". Well, Brandon hit a home run tonight. Here is the link so that you can see this emotional and incredible moment. http://www.bus.umich.edu/Video/Play/?file=other/IngeHomer1&height=513&vol=200

That one was for you Tommy! Tommy probably has perma-grin while sleeping tonight! Love you buddy and we are so happy for you!
I will update when we here results of the MRI tomorrow. Praying..........
Love, Suzie