The journey continues

Cut, Copy and Pasted from Caringbridge..

WEDNESDAY, MARCH 31, 2010 6:24 AM, CDT

Lindsay had another rough night. (this means mommy did too) She has had a lot of vomiting throughout the night. We do not know if this is due to the meningitis or due to the increased pressure or due to both.

Around 4:30am I went to suction Lindsay's mouth and she felt warm to touch. From 4am-4:30am she went from 37.0-39.5 (98.6-103.1). Our nurse called neurosurgery and they think that Lindsay may have pneumonia. (Which now I remember them telling Darren that she vomited as they were putting her under for surgery) So, now we wait to see what happens. Hopefully the antibiotics are working....

I will update later-
Love to all-
Michelle

Wednesday March 30, 2010...

TUESDAY, MARCH 30, 2010 5:40 PM, CDT

It was a long night and the morning started off long. We were unable to break her cycle of pain. It seems by adding another anti nausea med we broke the cycle of vomiting however she is still extremely nauseated.

She went down for a CT of her head today. They wanted a baseline of what her ventricles look like now to monitor for hydrocephalus. The Neurosurgeon said that since we pulled her shunt this could develop. So we will continue to watch her for increased neuro symptoms.

Her pain is not well controlled. We are trying. After her CT they changed some meds. They changed her to a stronger pain med, started a strong anti-inflammatory and more GI meds. The first dose helped. Whether it helped or if the fact it knocked her out and let her sleep for a bit... but since then she has not received relief from the increased pain meds.

We moved to the 5th floor to a neurosurg bed this afternoon. Since then she has declined. She is having more symptoms of meningitis. Her neck is really stiff and she is not turning her neck and her head pain is horrid. We are in a dark room. She even went so far to tell her nurse that she wanted to die her pain was so bad. So we are waiting to see what neurosurg wants to do.

Yesterday we found out that Linds was growing Gram positive cocci in chain, clusters and pairs. Which infectious disease informed us could mean that she has more than 1 type of bacteria growing. This morning we were informed by the PICU that she was growing Staph Aureus. ID said that we would need to wait the full 72 hours before we could say that was the only thing that she was growing in her CSF. And yes that was what she was growing when we were here last.

I have had some questions about her appendix. Upon doing the ultrasound they found out that it was normal. The abdominal pain was inflammation to her peritoneal caviety. (peritonitis) The abdominal pain is better. The pain is only severe when her abdomen is palpated. So in that respect, that is doing better.

Infectious Disease was just here. We will have a game plan tomorrow after the cultures show sensitivities. We are looking at at least 14 days of antibiotics to treat the meningitis. Anything that we use to treat the meningitis will cover if she has anything in her abdomen (aka abcess). So now we take 1 day at a time.

Again, thank you all for the wonderful emails, messages on facebook and comments here. I have read them to Lindsay and she said: "Thank you so much for loving me!"

Love to all,
Michelle

One year ago...

Cut and Pasted from caringbridge:

MONDAY, MARCH 29, 2010 12:59 AM, CDT

We made it to Comer and are currently on the 6th floor. We saw Gen Peds, Peds Surgery and Neurosurgery. Everyone has assessed Lyns and she is NPO. Shunt X-rays are done, Shunt tap is done and bloodwork is done. NS has spoken with the attending on call, but he is not overly familiar with Lyns and the thought it would be best to touch base with Dr. Frim. I am very comfortable as one of my favorite residents is on call toni

ght and is

making sure that things happen. There have been some discussions on how it would be best to proceed with Lyns but we have to wait for lab work to return. When they tapped her shunt Lyns has no measureable pressure per Nassir...."Very low pressure". Nassir had to disconnect the manometer and use a syringe to pull some fluid out of her reservoir. He was able to pull fluid...but it never would flow willingly. I have been informed by neurosurgery that we will be moving to Comer 5 tomorrow. Neurosurgery is going to manage her case. I will say that I have received exceptional care on Comer 6. :) We have a kick butt awesome nurse. I know that I am forgetting something...But I am too tired to think straight. Love to all, Michelle

MONDAY, MARCH 29, 2010 4:03 AM, CDT

Good Morning All! At 3:20am Nassir woke me from my much ne

eded rest and my wonderful sweet dreams to inform me that Lindsay was being moved to the PICU. His exact words were more like, "Mrs. Hartman. Good morning. She has bacteria in her CSF." Nassir m

ust have known in the pit of his stomach that something was going on because when he did her shunt tap late last night he chose to shave a section of hair over her reservoir "So there is no question that this is not a contaminated specimen". So as I said, we are being moved to the PICU. When we arrive there they are going to sedate her and pull the abdominal drainage tubing and I assume that they will drain her CSF that way. Nassir said that the rest of the shunt will need to come out and he is not able to pull it in the PICU at bedside, but that we can deal with later in the AM. Right now we need to get her moved and get meds

(ANTIBIOTICS) started. They ideally want to give her Vanco and Rocephin. But if you remember back to February that made her "itch like a dog with fleas" and break out into a rash. So we are trying Ancef (we were on that at home and still itched) and Clindamycin (which she has reacted to the oral meds but we are going to give it a try for now). The PICU fellow has been informed what is going on and I find myself hoping that it is Dr. Dawson. I had issues with her in the past however t

hat was addressed and she is VERY smart. I know that Lindsay will be in good hands if Dr. Dawson is the fellow. (I know Janet.... You probably just fell off your chair.... Now Super D can laugh at you...LOL) Frim is on Holiday until the 12th. They did

speak to him by phone last night. Infectious disease has already been consulted re: meds and I believe that they have already been changed from the ones I wrote above. We are getting ready to move to the PICU. I will update later. Please pray for my little girl!!! Love, Michelle

MONDAY, MARCH 29, 2010 7:45 PM, CDT

It has been a very long day. Lyns was moved to the PICU by 5am. By 6am Nassir was here and ready to remove the shunt tubing from her abdomen and chest and c

onnect it to an external drain. This drained fluid out of her head and into a bad hanging on an IV pole. I even stayed and watched most of what they did. She was completely sedated and she tolerated the procedure well. Peds surgery came and reassessed her and wanted another ultrasound of her abdomen to make sure that she was not having appendicitis also. Lyns abdominal pain came from the infected CSF draining into her abdomen. Her entire peritoneal caviety is inflammed due to it. (aka peritonitis) This is why they h

ad to remove the abdominal drainage tubing asap this morning before any other inflammation could be done. On Lyns CT at our local hospital they thought she had a bad UTI because her bladder was inflamed (they could see this on the CT) Now we know it was due to her infected CSF. By 11am to

day Lyns was taken to the OR to have the rest of her shunt hardware/tubing removed. Unfortunately as I have stated in a previous entry Dr. Frim is on holiday. This did not bode well for Lyns as she had to have one of the other peds neurosurgeon operate on her. She was NOT happy. The Neurosurgeon did not want a drain placed to drain off her CSF since she had so much grown in her CSF and he wanted to make sure that they were able to get this infection straight away. While they were in the OR they placed a PICC line. Yes...we will be goi

ng home on IV antibiotics and NO we are not even talking a date yet. Lyns was out of surgery around 2 and back to the room. She is really uncomfortable and she is getting a boat load of morphine. The head pain and vomiting are crazy and she said her head is going to explode. So now we just hang tight and focus on getting Lyns healthy. Thanks for all the thoughts and prayers. We do appreciate them. Love to all, Michelle

It is so very amazing what a difference a year can make-March 29, 2010...

March 13, 2011

Frustration...

Before Craniosynostosis Surgery #5

February 6, 2011

6 weeks post op-March 23, 2011

Not overly impressed with the outcome so far. I am very concerned that we will, yet again, see another reconstruction in the more near future than first expected. Just in case I have not said it recently, I am NOT a fan of craniosynostosis

Sleeping Beauty

I just cannot help but share. In the actual newspaper her picture was 1/2 page. We we very excited for her. :) We are four days out from show day, well 3 if you consider that we are now on Wednesday. The kids are very excited.