Saturday, March 15, 2014

Timeline of an illness & brain surgery

This is going to be a CRAZY long post. It's just for me. I don't know why I want to keep all this info...but I do. And this is as good of a place as any for me to document things. Feel free to skip it as I'm just documenting the entire illness we survived with Daisy.

03-01-14 (Saturday)
Daisy got a fever. Not a super high one. But because she's a special-needs foster child, I didn't mess around. I took her to her family doc.
The doctor did a barrage of tests. Daisy was negative for the flu and strep. The doc took a bagged urine sample. It took FOREVER because Daisy hadn't eaten a ton that day and she had just had a wet diaper prior to going to the doctor. The bagged urine came back someone inconclusive so the doctor put her on an antibiotic just to be on the safe side. My Genius Brother (the doctor) says that bagged urine is always inaccurate. It's very frustrating living somewhere where the doctors do the wrong tests in-office, or refuse to do things in-office. But there was nothing I could do about it.
The doctor filled out my agency paperwork and told me we had to come back the next day to get blood drawn again. Her white blood count wasn't particularly high. But this is what the doctor requires.
Of course, when I finally got to the pharmacy at 6:07PM, I discovered that it had closed at 6:00PM.

03-02-14 (Sunday)
Daisy woke up at 4:45AM and threw up. The day didn't improve. Like a good little foster mamma I took my charge back to the doctor's office. Of course I told the PA that saw us about the fever the day before and about the new symptoms of vomiting and diarrhea. He seemed very laid back and understood I was only there because I'm required to. I don't know why he didn't run the CBC again but I wasn't about to tell the man how to do his job. I assured him I know the signs of dehydration and that I'd go to the ER if there was any concern. He filled out my agency paperwork and sent me on my way. Daisy vomited and had diarrhea all day long.

03-03-14 (Monday)
Daisy's primary doctor had the office call me. They demanded to know why I hadn't gone to the doctor the day before. I explained that I was there for almost two hours and that I didn't know why her blood wasn't drawn. They told me I had to come in.
Blood was drawn again. The white count was down even more. Daisy graciously gave me a diarrhea filled diaper while there so the doc opted to run some stool tests.
When I got home from the doctor at noon I crawled into bed myself. I spent the rest of the day suffering from the same gastrointestinal issues Miss Daisy had suffered from. Mr. Amazing somehow made it through work for the day and came home with the same symptoms that evening. We were all three miserable together.

03-04-14 (Tuesday)
Daisy seemed better...but she refused to eat or drink all day long. I offered up Pedialyte and formula. I even made a batch of homemade rice water like the doctor had recommended. Daisy simply wouldn't take anything. At 8:30PM, after she aspirated when I offered her yet another bottle, I packed things up and took her to the ER.
They ran a bunch of tests. The doctor told me the only way he could give her an IV of fluids though is if she refused, while at the hospital, liquid from a bottle (likely a Medicaid requirement - I'm guessing a child on traditional insurance would have been given fluids and possibly even be admitted). Daisy must have decided she didn't want to be admitted so she managed to take two whole ounces of Pedialyte. The doctor discharged us around midnight. The only new diagnosis we had was RSV, but Daisy was given no medications for that.

03-05-14 (Wednesday)
Wednesday was a little better. Daisy still had diarrhea but she managed to drink about 13.5 ounces of various liquids throughout the day. The ER doc told me to not worry about giving her Pedialyte. Said it tastes like crap. If she would take juice, that would be OK.

03-06-14 (Thursday)
Daisy already had a follow-up at the family doc scheduled for the morning so off we went. Daisy's doc examined her and wrote a script for a nebulizer. She also told me if Daisy stopped eating again all I needed to do was call her and she would admit Daisy directly. No more trips to the doctor or ER. Daisy didn't eat well all day long but she ate enough that we stayed at home.

Her pediatrician told me to have Daisy checked out by the neurosurgeon as well. I (emphasis on I) thought that the head circumference measurements might have gone up. In hindsight I should have asked for a nurse to remeasure. But, to be on the safe side, off to the neurosurgeon we went. He gave Daisy a visual examination. Upon hearing the symptoms he too agreed that "no eating" was from the stomach bug and the RSV. He said her shunts looked fine. 

03-07-14 (Friday)
Daisy started the day off with a wet diaper. She had one full of diarrhea later in the morning. She even had a wet diaper around 3:30PM. But she was not eating! Not nearly enough. I didn't want to wait any longer. I called Daisy's pediatrician and told her what was going on. She said she would admit Daisy. All I had to do was stop by the office to pick up the orders.

I had Ricky drive me. Mr. Amazing stayed home with the rest of the cherubs. While in the car I called all the important people to let them know what was going on.

We arrived around 6:00PM. The hospital got us upstairs to the pediatric unit pretty quickly. They assessed Daisy, confirmed she was dehydrated, and got her started on IV fluids. The doctor also ordered nebulizer treatments.

I called the abuse hotline to report her hospitalization. In Texas being admitted to the hospital is a reportable event and it has to be called in. Then the case number has to be reported to my licensing agency. It's a minor thing now that I understand. However, I do remember when I had to do it with Pumpkin the first time it was a little unnerving.

03-08-14 (Saturday)
The day was rather uneventful. Daisy took very little by mouth. But because of the IV, I wasn't worried anymore. That feeling of relief was wonderful. However, I did have to deal with nosey nurses asking too many questions and making several stupid statements about foster care. I was extremely tired and really didn't want Daisy to be a poster child for anything.

03-09-14 (Sunday)
Again Daisy took almost no formula by mouth. She sustained life via the IV fluids.

03-10-14 (Monday)
Daisy still wasn't eating enough. The RSV didn't seem so bad that it should be causing her to not eat. She still had diarrhea but no one seemed concerned about that. The stool culture had turned up nothing. The doctor was confident it was a "normal" virus that Daisy was suffering from. Watching her demeanor and hearing all the symptoms he said again that Daisy did NOT look like she was having any problems with the shunts. But, to be on the safe side he asked the neurosurgeon to pop by during rounds. Dr. NS (NeuroSurgeon) ordered a CT scan of the brain and an X-ray of the belly to examine the shunts.

I'm pretty sure Dr. NS never sleeps. He came by late that night to tell me that Daisy had three areas of blood/fluid on the brain. He ordered some blood work to be done.

03-11-14 (Tuesday)
Dr. NS got the blood work results and ordered an MRI. Immediately I had to start jumping through hoops to get judicial permission. As foster parents we are the medical consentors for many things. However, we have to get permission for certain procedures. Anesthesia is one of them. The nurse had to type up a letter explaining the procedure that needed to be done and then fax it to Daisy's CPS caseworker. Mr. CW then has to take it to his supervisor. When there is time, they then inform the lawyer(s) and the judge. When possible, the judge has to sign prior to the procedure being done. I don't know at what point during this process we got permission - but we did. (Sometimes CPS will grant permission in-house and then advise the lawyer(s) and judge after the fact.) About an hour after the hospital sent the paperwork on, I got a text from Mr. CW saying permission was granted.

In between all of this, Daisy had a supervised visit with her bio mom. I think I want this to be a separate post in and of itself. To summarize though, the visit SUCKED! Daisy cried the entire time except when I was holding her.

Daisy went in for her MRI around 3:00PM. It didn't take too long and they brought be into the recovery room to be with her. The anesthesiologist told me - somewhat off the record - that the MRI findings were consistent with the CT scan. He also told me that the blood was called sub-acute. He had little else to say except that it was consistent with shaken baby syndrome.

I spent the next couple hours trying to calm down. I googled "sub-acute" and learned that it meant the blood was between 4-21 days old. I basically had a PTSD attack at that point in time. Did that mean Daisy had been hurt again? Was CPS going to come after me for no reason? I really worked myself up into a frenzy.

The only thing that calmed me down was knowing that no one said anything to me after they got the results of the CT scan. And it was the anesthesiologist that gave me these results NOT the neurosurgeon. I really wanted to see Dr. NS badly!!!

I'm convinced that Dr. NS really must never sleep. He stopped by our room around 9:45PM that night. He must have said at least two dozen times, "She's going to be fine." However, he also said he wanted to operate first thing in the morning.

Brain surgery.

He made it sound so simple. Kept telling me she would be fine. Just a few holes in the head. Some catheters to drain things. Easy peasy.

My knees shook. My baby was going to have brain surgery.

And of course I had to get CPS/judicial permission. I had no idea how to move the paperwork through things fast enough. I called her CPS worker. Then I sent him a text. Then I called him back when they told me they wanted to operate between 7-8AM. He picked up this time and told me he had already tried to contact his supervisor. Everything hinged on this supervisor.

Thankfully it only took about 15 minutes. His supervisor called him back and they approved the surgery between the two of them. Of course the hospital still had to submit all the paperwork so CPS could submit it as an advisement to the court. But we had approval.

I barely slept that night at all!

03-12-14 (Wednesday)
My alarm went off at 5:30AM. I showered and packed up all of my things. I knew that after surgery Daisy would be in the PICU (pediatric intensive care unit) instead of the general pediatric unit. I wanted to be ready when they came for her and not scrambling for anything.

The morning drug on and on. I got more and more nervous. They finally came for her a little after 9:00AM (much later than I had been told to plan on). I went with Daisy down to pre-op for some more waiting. At 10:30AM they took her back for surgery.

I was a huge bundle of nerves!! Mr. Amazing had told me that he made arrangements for TT and Bart and he was on his way. I scanned the waiting room hopeful that he was there already. My heart sank when he wasn't but I called and he was close. I anxiously waited to see his face.

Rainbow and our current agency worker both came to sit with us for a bit. They brought me a breakfast sandwich. (When breakfast was delivered to Daisy's room that morning I was entirely too nervous to eat and thought that Daisy was going down for surgery right then anyway. I didn't even have them leave the tray. I just said no. By the time Rainbow called to say she was on her way, when she asked if I wanted anything I told her breakfast would be nice.)

A couple minutes later Mr. Amazing walked in the waiting room. I raced to give him a hug! I finally relaxed a bit.

Surgery was to take 1.5-2 hours. At about 12:30PM the neurosurgeon walked out to talk to us. Brain doctors are an interesting breed. He very quickly raced through the details all the while saying that she did fine and she'll be just fine a couple dozen times. The gist of things included:
• He put in 3 burr holes. The one on the right was draining a bright red blood. He wasn't sure why.
• The middle burr hole was draining just as he suspected.
• The burr hole on the left wasn't quite right. It wasn't draining at all.
Then he mumbled something about not wanting to puncture a membrane. And needing to run another CT scan so he could see the placement of the catheters. And, "she's going to be fine," a few more times. And then he was off.

Mr. Amazing and I continued to wait. I assumed someone would call us into recovery as soon as she was stable. We waited and waited. After an hour I tried to track someone down to find out how my baby was doing. I mean really...some people have complications in recovery and we hadn't heard a thing. I wanted to know what was going on.

After asking several people who had no clue, I was finally directed to an administrative office where a nice woman told me Daisy had just been moved to the PICU. She called another line and told me to wait. Then an important person in the surgical department came in to personally apologize for the error.

I raced back to Mr. Amazing and together we went to the PICU to see Daisy.

After establishing that she was doing well, I grabbed my things to race home and get more clothes. Mr. Amazing stayed with Daisy. Amazingly, she came to quite quickly and started eating. He gave her a couple 2oz bottles of Pedialyte and then switched to formula. All in all she took 10oz in two hours.

At home I saw my other kids, packed a new suitcase and took a full shower (that felt wonderful BTW). As quick as I could though, I headed back to the hospital.

03-13-14 (Thursday)
Daisy had another CT scan in the morning. I didn't know when we would see the neurosurgeon again. He asked Daisy's nurse to call him when it was done and he'd check it from his office computer across town. I figured we'd have a break in action.
A couple hours later though the nurse came into my room and said that Daisy needed surgery again. They wanted to do it in just a few hours.

Immediately I started the process to get permission. (Sigh. Paperwork is such a pain sometimes!)

Mr. CW pushed things through quickly. We had permission in well under an hour.

Mr. Amazing came to the hospital. I really wanted to go home and shower. The PICU doesn't have any facilities for showering. In fact, they only have one bathroom for all the visitors of the unit to share. I raced home, took care of some stuff for work, hugged and kissed my other cherubs, took a shower and raced back to the hospital

When I got there they were already in pre-op. One of our friends from the Christian motorcycle group we belong to met with us. We chatted for a bit. He prayed over Daisy and she went back to surgery again.

The wait this time wasn't quite as nerve-wracking. I'm not exactly sure why. It's not medically sound, but somehow I was comforted with the fact that the holes were already there and the doctor simply had to make adjustments to existing things. Surgery took an hour this time and Dr. NS was out to tell us about two dozen times that, "she will be just fine". He removed the middle catheter during this surgery and said the one he adjusted was now draining as it should be.

Again we waited for someone to take us to recovery. Again no one came. Instead of going through administration though, Mr. Amazing and I simply walked into the pre-op area and asked for someone to take us to our baby. All the nurses knew us and our story so we got help quickly. We were told one of us could go to the baby and one of us could go up to PICU as they were getting ready to move her. I went to be with Daisy.

The rest of the day went smoothly. Daisy came to quickly and started eating right away. She never cried like she was in pain. Can you believe all they give for it is one dose of *something* strong in recovery and then only Tylenol after that?! Blows my mind.

Daisy's night nurse was awesome. She gave Daisy a wonderful sponge bath and was fun to chat with. Daisy slept well all things considered.

03-14-14 (Friday)
The big event of this day, other than getting discharged, was a visit with Bio Mom. Again, I think this needs to be a separate post. It was equally as difficult as the first visit. Only this time Daisy did great and never got upset - Bio Mom did all the crying instead. It is notable though that Bio Mom was not allowed to pick Daisy up at all during this visit. She could just stand over the crib, stroke her skin, and talk to her. I was told that if Daisy was distressed by the visit, they would leave. I made it VERY clear to her caseworker prior to the visit that Daisy could not cry like she did during the other one. It would be detrimental to her healing. And as Daisy's advocate, I wouldn't tolerate it.

Sometime mid-afternoon, Dr. NS finally rounded. He popped in, looked at Daisy, said she was doing great and she could go home. They got him a couple supplies. I was standing right there when he snipped the tiny suture holding the catheter to her scull and pulled out a piece of tubing about four inches long. (It was actually kinda cool and kinda gross all at the same time.) After both the catheters were removed he was done. That was it. Nothing special. We could go. I had to actually press him a little to give me details about after-care and stuff like that.

The pediatrician in the PICU had to officially discharge us. I pressed him a little bit more on wound care. He was almost as casual about things as the neurosurgeon was. I guess tiny holes through the scull and in to the brain aren't a big deal. (What?!!) Of course I'm to look for any signs of infection. But after 48 hours with any more seepage, life goes back to normal and I can bathe her and everything.

Wow!

The pediatrician did change her seizure meds. That caused a bit of drama because after Mr. Amazing came to pick us up, we stopped at several pharmacies in search of the med. It seems the dosage is unique and not even the big chains have it in stock anymore. We made our way to an independent pharmacy though and I picked up their last bottle. The liquid is very foul tasting so I now get to crush two tiny tablets to mix with food twice a day for Daisy.

Finally...we made it home.

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We follow up with Daisy's regular pediatrician on Monday. All of her therapists (speech, OT and PT) will have to reevaluate Daisy before therapies can start again. We follow up with the neurosurgeon in about two weeks. I'm supposed to follow up with her neurologist in 3-8 days. I'm a little torn though. We informally saw the neurologist while in the PICU. He said to just keep her next appointment in early May. And since I know the office literally does not have any appointments any sooner, I'm leaning toward doing than as opposed to sitting for hours (and hours and hours) as a walk in this week. My only concern with that is the fact that a different doctor switched her seizure med and part of me thinks her neurologist needs to know this. But then again, the other doctor knows his stuff so does it really matter?

All day long today (Saturday, March 15) Daisy has continued to surprise me. She's happy. She's talkative and playful. You would NEVER know she went under anesthesia three days in a row and spent nearly eight days total in the hospital. Every now and then when she's sleeping she'll startle a bit. But as soon as Mr. Amazing or I talk to her and gently touch her she goes right back to sleep. It's almost like she just needs a small reminder that yes indeed, she is home.

I'm sure this won't be our last trip to the hospital. You just can't smash a baby's brain around in their scull the way hers was and expect it to heal without intervention most of the time. Dr. NS isn't convinced that one of her shunts is working - but he stressed that she does not need it right now so everything is fine. There's still the concern about the burr hole on the right that had the bright red blood. Dr. NS is going to have to get to the bottom of that problem or I assume this will simply repeat.

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The thing I take away from all of this though is how the hand of God moved through it all.

Several times Dr. NS stressed that the pressures in Daisy's head were still quite low. He said that he does not believe that her "not eating" was a result of the blood in her brain. It is really quite a fluke that anyone did a CT scan to find the problem.

If Daisy had simply healed any faster we would have left the hospital and the problem in her head would have gotten worse. We wouldn't have known about it until the pressures were higher and they caused pain, vomiting and other nasty symptoms. I have to assume that it was better we caught things early.

God has perfect timing. In that I am eternally grateful.

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I didn't proofread this too much. Like I said at the beginning, this was largely just for me so I've got documentation of all we just went through. If you're still reading, please forgive any typos or parts that don't quite make sense.

3 comments:

grkanga said...

Wonderfully well done.
Understand your lack of desire to be a 'walk in and wait', however I suggest it is VERY important to establish with the doctor's office that it is OK to not go and that the doctor knows the other doc changed her meds. And I am paranoid enough with foster care to suggest you get it in writing that both issues are approved by the doctor who expected to see her. Cover your self and have it documented! Someone may yet want to suggest the untoward and untrue about what went on with Daisy and you do not want to be set up as the fall person!
Hope the rest of your crew can all settle back down and relax to normal really soon!

Annie said...

Wow, wow, wow. Since you were "checking in" on FB, I was full of curiosity and am really glad that you shared the entire experience. (Though now I've read this I honestly feel a little bit of the stress you must have gone through.)

Could you just double-check that NS approves that change in medication? (That would worry me, too, because doctors do sometimes cancel one another out - my husband has several specialists and they've screwed up a few times.)

Speech therapist? Really? Monnie who is 18 months tomorrow really doesn't talk... Does Daisy? What does a speech therapist do with a baby?

Cherub Mamma said...

I am going to call the neurologist. However, the pediatrician assured me that he and the neuro work well together. And his reasoning for dropping the original seizure med is VERY solid!! When he ran her blood levels they were almost zero. And he says unfortunately, children under two don't metabolize the med steadily and the next time you run the blood levels it's possible for them to be at toxic levels.

As far as the speech therapy goes - it is WONDERFUL! It's done by an actual pathologist (not a technician). She helps with oral motor exercises and feeding issues. She's instrumental in helping Daisy learn how to eat solid foods. Many children that suffer a TBI also have issues with sensory processing disorder. The speech pathologist is working to help avoid that. Right now it's not so much about actual speaking - but helping her be in a place where she will be able to when developmentally appropriate. The feeding support though is very necessary too!