Dani’s Journal

Since we have received a few calls and emails to see if everything is alright since Dani’s website has not been updated, here goes…I brought Dani into the doctor on Thursday at 1:00 pm because she is still not acting herself. She acts like she is in A LOT of pain and still is really cranky. Her pediatrician ran test after test to get to the bottom of it. At least she agreed, there was INDEED something wrong, but when each test came back normal, it became more and more frustrating. Dani was tested for an infection from surgery, bladder infection, x-rays for a broken bone, x-rays on her intestines to make sure they were working properly. Then it was decided to do a CT on her head. By this time, I called Dan and he came up to the hospital with the girls. Dani got thru the CT once again without sedatives. But then we get the call from the pediatrician that she needs to go over the results with the neurosurgeon on call (as luck would have it her surgeon is on VACATION), we knew it didn’t sound good. By this time it was 6:00 pm. Then the news came Dani has a new bleed and this bleed is BIGGER than the one that they fixed. Dan and I were numb as we gathered up our three girls and took them home. We don’t know if this means another surgery or what can be done for Dani. We thought we were fixing her problem, but it seems worse now. We will wait until we hear back from the surgeon on Monday…you don’t know how frustrating it is to know something is wrong with your baby and you can not fix it or take away her pain…

We had a nice quiet weekend at home. It was really nice after the stressful week or should I say weeks we had. On Saturday Dani had a night nurse. Talk about a small world, she grew up in Sisseton too! Dan and I had a good night sleep. It is one thing having a nurse here, knowing her helped tremendously!

Kaylee and Brianna started school on Monday. The house was really quiet, well except for the psycho cat that could use some Ritalin. I think he missed the girls because he would run up to Brianna’s room then back down to Kaylee’s over and over. He’ll look over at Dani but luckily decides to find something else to bug.

The neurosurgeon did call and we are keeping the appointment on Wednesday, but to repeat the CT next week. Dani will be getting her stitches out and we hopefully will hear what the next step is for Dani.

Dani had OT on Monday and PT today. We are working on a new website for Dani and when we get the guest book and counter to work, we will let everyone know the link!

Dani had a chiropractor appointment this morning. He agreed that Dani is crankier than usual. But at least she is not in the hospital! We are still working getting her back to her baseline. Dani still isn’t tolerating her night feedings and is up quite a bit at night. Hopefully, we get another night nurse lined up to help us out again.

DANI IS HOME, DANI IS HOME, DANI IS HOME! Dani got her ok to go home this afternoon. We were hoping to be home in the morning, but Dani decided that she wanted to stick around there a little longer. When the doctor was doing her assessment of Dani, Dani started to gag so she had to prove to the doctor she was ready to go home. Then little missy decided to run a fever once we got that settle down, then she started to cry out in pain and her heart rate jumped up again. We finally got Dani situated and got the all clear and we were home at 3:30PM! Dani will have a follow up CT on the 23rd to make sure the bleed didn’t come back and she will get her blue stitches out! Kaylee and Brianna are ecstatic that their sister is once again home.

Dani’s day started out pretty much like Friday. They are slowly trying to get her to eat again. She is getting 30 cc or 1 ounce every 4 hours. She threw up the first two feedings but started to tolerate them better in the evening. DANI”S HEARTRATE IS DOWN! Last night when she was sleeping it went down to the 110’s and when she was awake it was in the 130’s. This is a lot better than the 150-180’s she has been at. Some of Dani’s visitors this weekend were: Big sisters Kaylee & Brianna, Grandma Donna, Uncle Tony, Aunt Maria, Cousin Joana, Aunt Suzie, Uncle Kevin, Cousins Grace & Abby, and Lisa S.

Dani’s day went pretty much like last night. Her heart rate came down for a little while but then went back up again. She only threw up once, but is still gaggy . Since she didn’t think that was enough for the doctors to work on, Dani decided to throw another curve ball at them. Dani is once again peeing more than she is taking in. Dani is only on IV fluids since she is still throwing up, so she isn’t even getting formula. Her head wrap came off and she has blue stitches! She has two sets on each side of her head.

What a LONG day yesterday was!!! They moved Dani to prep for surgery at about 12:45 pm. Surgery was supposed to start at 1:30 pm. Lets stress the word was. At 1:30 pm, we got the word from the nurse that neither surgeon was there yet and both either had to be there or on their way in order for surgery to start. It was close to 2 pm before they took Dani to the OR. Her first surgery was to drain the subdural hemorrhages. We got word at 2:30 pm that surgery was underway. I believe it wasn’t until 3:45 pm that we heard that surgery was over and the surgeon was ready to talk to us. He had to drill 4 holes instead of 2 to drain the fluid. Everything went well and over time we will see if it was a success for Dani. The second surgery was underway and this was for the Port-a-Cath placement. This one went as smooth as the other surgery. Unlike her G-tube surgery, we did not get to see Dani right away. We had to wait an hour to see her chubby face again. This time, she decided she could breathe on her own and got off the vent right away! Dani is back in PICU at SVH and the rest is a breeze….

Right, what I am talking about this is Dani. She had a rough night last night. She has a high heart rate, keeps throwing up, and is in PAIN! First of all, Dani had a Nissin wrap done with her G-tube, so she shouldn’t be able to throw up, that is unless it came loose. So we are waiting for the surgeon to stop by and see what he thinks. Second of all, these were “minor” surgeries and Tylenol should be enough for pain. But Dani is crying out and whimpering in pain. Luckily, they will not let her be in pain, they are giving her morphine. Third of all, the high heart rate has them stumped. Darn, it Dani, when are you going to do something the easy way! The ICU doctor gave his “best guess” to why this is happening. Dani’s body is used to all the pressure and now it is not there and her body is trying to compensate for it being gone. It won’t be until she can handle the released pressure that we will see her start to get better…

Dani had a chiropractor appointment. We did the rest of the girls’ school shopping and then had a relaxing afternoon together. Dan, Kaylee got Dani checked into the hospital around 5:30 tonight. I stopped in after work and saw she was all tucked in. They had an anesthesiologist put in the IV and he said he got it in by pure luck. Dani’s veins are visible but you can’t feel them, so whenever she has blood drawn or IV’s put in, it is like going in blind. Grandma Donna came down to keep Kaylee entertained during the surgery. So hopefully, all goes well for Dani tomorrow.

Dani had OT today. We are finalizing the plans for surgery on Thursday and trying to get everything in order.
Brianna decided to ditch us again this week. She is staying at Cousin Gracie and Abby’s house. Kaylee wasn’t too sure she liked that idea. But Kaylee has been busy in her new ROOM! We had to separate the two mischief makers and put Kaylee downstairs. Surprisingly, it went well for Kaylee being chicken to even go downstairs. She wasn’t too fond of the fact that Brianna’s room is bigger than hers! She has a roommate, her kitten Coco. (She was highly disappointed to find out the he is indeed a boy, instead of a girl.) Kaylee also discovered the technology of Email and she spent the majority of the day emailing pretty much EVERYONE. I think I got close to 30 emails! So, beware if you email is full, it is probably from Kaylee!

Dani had her neurologist appointment this morning. It went WONDERFUL. He was more than willing to take on all of Dani’s mysteries! Even though this doctor is more than 4 hours away, Dan and I are willing to bring Dani back for him to treat her. We were so impressed on how he would try to ANSWER the hard questions. For example, will or can Dani’s brain start to grow again? He said it could but it will never be normal sized or healthy as it once was. And that Dani could regain some stuff back. But he is not taking a “wait and see” approach for Dani. Instead he offered many plans of attack to help her.

He wants Dani to go to a neuromuscular clinic to see they can figure out the Arthrogryposis and why it happened. He wants Dani to see an Ophthalmologist to determine how much Dani can see. He wants to start her on another seizure medication because he does not think Dani should have to have as many seizures as she does. (Her current goal in SF is not to be seizure free but not to have the strong seizures) He ordered Diastat for the seizures lasting 5 minutes instead of the Ativan since she had a breathing reaction from it. He took blood for a phenobarb level and to rule out two possible disorders that she wasn’t previously checked for. He wants her back in a month to have an EEG.

HE HAS EXPERIENCE WITH CHILDREN LIKE DANI!

HE IS NOT AFRAID TO FIND OUT DANI’S MYSTRIES AND HE IS WILLING TO TAKE ON THE CHALLENGE!

HE TOOK CHARGE AND GAVE US SOME DIRECTION!

When we asked if we were doing everything we could for Dani, he said “absolutely” because we are willing to bring her wherever she needs to get help. He did bring up the hard subject of when we think enough is enough for Dani. Not that he is giving up, but that we are all on the same page for Dani and we do not have to make that decision at a critical time. It was a really good appointment! I was struggling with the feeling that I was failing Dani because I couldn’t find the right help for her, but I feel confident that this neurologist can REALLY help Dani.