Andrew...the story continued

I realize that most of this information has been relayed, so there's probably not much new news here, but for the sake of journaling, I'll relay our experiences with Andrew from the past couple of weeks. I'm sure it's terribly long and boring to the general population...you can skip to the end whenever you get too bored :)

Disclaimer: I had Dan read over this and he told me several times that it was very choppy. So, I know it's not a well-written oration. I never claimed to be Jane Austen, so don't judge me harshly :)

So on March 29, Dan's mom came down from NC to stay with Jeffrey and Caitlyn. So nice to know they were in good hands!! Tuesday, March 30, we drove down to Gainesville for Andrew's MRI. They let us stand beside him when they put the mask on him to put him to sleep, so it was nice for him not to be taken away screaming. The test took just over an hour and they called us back as he was waking up. The rest of the day went very normal, he seemed to be totally fine very soon after the anesthesia wore off. Luckily, we had gotten a room at the Ronald McDonald House (from here forward referred to as the RMH :) ). It was very convenient, clean, comfortable, and the staff was wonderful. What a huge blessing!

We made a trip to the Gainesville Oaks Mall to pass the time. Andrew enjoyed playing on the toys.

March 31 we went to meet with his doctor, Dr. Pincus. He said that instead of doing 2 incisions and operating endoscopically, they would do 1 larger incision and operate microscopically. His official surgery was called a "Craniotomy to fenestrate an Arachnoid Cyst." Dr. Pincus went over some details of surgery, then we went to wait for the pre-op appointments. Basically they just go over his height and weight (again) and have him meet with the anesthesiologists to make sure he is healthy enough for surgery. They were a little concerned about the cough that Andrew had, but decided it was all upper respiratory and that he would be okay to go through the surgery. We went and had some labs drawn (they dug around in his left arm for several minutes before deciding they had to do the other arm) and called it a day. Back for another night at the RMH.

Waiting in the doctor's office - we spent much of the day on Wednesday waiting!

Playing on the swings at the RMH.

We were told to show up at the hospital at 6:00 am Thursday morning for Andrew's surgery. We went up to the pre-op room around 6:30, then waited until after 8:00 before they actually took him back. We had been told that we wouldn't be able to go back at all, but given that Andrew is slightly terrified of strangers, they let me put on the fancy operating wardrobe (full jumper thingy, face mask and hair net) and go back with him. I was almost surprised that he still recognized me as his mother! I actually held him while they put the mask over his face and as soon as he was asleep, I helped transfer him onto the operating table and left the room. Scary to leave him, but the doctors and nurses definitely evoked a feeling of confidence and they were so kind that it made leaving a little more bearable. So off for the long wait. They didn't actually get operating until close to 9:30. Around 12:00 Dr. Pincus came down and told us everything had gone very smoothly and we could head up to the Pediatric Intensive Care Unit. Andrwe looked pretty pathetic, but relaxed. They said there had been quite a bit of fluid in his breathing tube when they pulled it out, and his breathing sounded terrible. I guess it's called "stridor" when the breathing sounds so raspy and they were slightly concerned about the airway which was obviously inflamed and irritated. They did 2 breathing treatments had him on oxygen during the rest the day Thursday (April 1). He drank a tiny bit that day, which was a great sign that things were going well. The only complication that arose was very soon after they brought him up to the PICU - a tiny bit of CFS (spinal fluid) leaked out of his incision. Dr. Pincus was quickly notified and came up to add another stitch to his incision.

Andrew in his cute hospital gown in the pre-op area of the hospital.

The first time we saw him after his surgery. I was surprised that they didn't have his incision covered at first.

After Dr. Pincus came and added another stitch, they covered it with gauze and added his oxygen tube instead of just blowing it in his general vicinity like they were in the previous picture.

Things seemed to be going fairly well on Friday. Andrew was very tired and lethargic (to be expected!) but getting lots of rest. He threw up several times, not a great sign, but not terribly unexpected. His incision leaked a tiny bit more, which they were monitoring very carefully. And the fluid was often building up around the incision site. The 'goose egg' of fluid was especially prominent when he would get upset (which was pretty often when nurses and doctors were passing through all the time, checking his temp, vital signs, pupils for unequal dilation....) At one point we had thought it wasn't out of the realm of possibilities that we could go home the day after surgery, but Andrew was clearly not ready for that step yet. I was the lucky person to start the rotation of sleeping in the comfy chair in the PICU (although my husband often reminds me that I will NEVER catch up to him on the number of nights that he has slept in uncomfortable hospital make-shift beds/chairs/cots). Andrew leaked a tiny bit more CSF during the night, so we weren't sure what Saturday would bring.

He had IVs in his wrist, so they had to tape it to a board so he wouldn't bend his wrist. He was constantly trying to pull out his oxygen tube!

Our sad little boy!

You can hear his raspy breathing if you listen really closely. For obvious reasons he wasn't feeling terribly chipper.

Hanging out with mom. We tried to hold him pretty frequently - he seemed to be uncomfortable when we would move him, but enjoyed sitting with us.

Close up of his incision.

Saturday (April 3) dawned and we were hopeful when Dr. Pincus' Chief Resident said that from a Neurological standpoint Andrew could go home. We asked about the leakage from the incision and were told it wasn't CSF and he looked great. He also said that the 'goose egg ' of fluid was just swelling from the surgery and it would eventually go away. Dr. Pincus showed up later that day in his gym clothes and said that the CSF wasn't draining properly (evident by the fluid under the incision and from the leaking, which he pointed out WAS CSF) and that we should probably go ahead and operate to give him a shunt, since the plan of letting the brain absorb the fluid and learn to drain properly wasn't working. He ordered a quick MRI and said we'd make a decision after he saw the results from that. Well, we were shocked to see how quickly things can happen when the doctor orders a procedure and you're not 'outpatient' anymore. Within an hour the MRI was done and Dr. Pincus had been called at home with the results. He was pleased with how the MRI looked and said they wouldn't put in a shunt that day, we'd just watch for leaking through the night and decide again Sunday morning if a shunt was necessary. There was VERY minimal leaking that night, but still quite a bit of fluid around the incision....

We would often catch Andrew watching TV when we thought he had been asleep. I'm sure this is the only time in his life when it won't be very obvious when he is awake!

Our buddy hanging out with dad.

Sunday morning I talked to Dr. Pincus on the phone and his conservative approach to surgery became more apparent. He was hesitant to put in a shunt if Andrew's brain could learn to drain the fluid on its own. Of course at this point, the pressure was building in his brain (he had thrown up several more times) and we couldn't really 'wait and see' how long it could take. So he decided we could do a spinal tap and relieve the pressure in his brain, giving it more time to heal and giving the 'pipes' in the brain more time to learn their job. The pressure from his spinal tap was 31, not the highest number some of our nurses had seen, but slightly above the normal child's pressure of about 10. So, another day of waiting (and moved across the hall to another PICU room...why not?).

This is before he got his spinal tap. It was very hard to get a picture to adequtely protray how big the buldge under his incision would get. But even if it's not obvious in this picture, there was a lot of fluid collected on the left side of his head (his left side).

Monday the pressure has built back up overnight and Dr. Pincus (who is trying to take the week off during his kids' Spring Break...poor guy) decides we can try one more thing before a shunt. He decides to put in a lumbar drain (it looked much like an epidural, it was a catheter inserted into his spinal column that drained into a bag outside of his body) and give him some medication to reduce his body's production of CSF, still trying to give his body time to learn how to drain. They also planned to do a CT scan with contrast to see if the ventricle and the cyst were 'communicating' with each other. They were still thinking a shunt would be possible and needed to know where they would put a shunt if they ended up putting one in. The usual place to insert a shunt is in the ventricle, but if the ventricle wasn't communicating with the cyst, then it wouldn't solve the draining problems. They could place it in the cyst, but that's a little more unfamiliar territory and they'd prefer to put it in the ventricle....if a shunt became necessary. Late Monday night we saw a bit of leaking around his drain in his back. The on call resident came by and put in another stitch to prevent any more leaking, with no local anesthesia, so Andrew was NOT happy...very sad!

Tuesday morning, the CT with contrast process begins. They wheel him down to a room where they insert contrast into his spinal column. As the fluid enters the spinal column, the doctors are taking x-ray pictures to watch where it's going. To get the fluid where it needs to go, the doctors rely on gravity to move the contrast (dye) into his brain. So, basically they turn him upside down. Our little boy (who loves strangers anyway) was so thrilled with the whole process. They get the contrast where they want it, lay him upside down on his bed (the head of the bed elevated, him laying with his feet up and head down) and wheel him across the hall to get a CT scan done. It was about 10 million times more traumatic than I thought it would be. What a nightmare! The results come back and they say that everything still looks good and that the ventricle is communicating with the cyst, so it's a good sign if they have to put in a shunt. The plan now is to wait and see what happens over the next 2 days. The hope was to give a little more time for Andrew to do his job and reevaluate on Thursday to decide if a shunt is necessary. Dan's brother, Dave, came down to visit us Tuesday which was so nice. The days in the hospital definitely get long, so it was wonderful to have a change of pace! Dan got to go out to lunch with Dave and then we just chatted in Andrew's room for awhile. Such a nice visit! Thanks, Dave!

Lovely IV and his oxygen monitor...aka the "glowing toe."

Wednesday was strictly a day of waiting. There were mixed signs as to how well he was doing. Andrew's head was still 'bulging' when he'd get upset, but he was eating a little bit, not throwing up too much, not drinking much, and not sleeping as much as he had been the previous few days. It was hard to guess what would happen. I was still hopeful that we could avoid a shunt. Even though his head was bulging sometimes, it would flatten back out and look great. Around 11:30 am Wednesday, they clamped off his drain to see what would happen - more specifically, to see if he could do the draining on his own. I gotta say, when I got ready for bed Wednesday night, I really thought the long ordeal could have been over. We would be on our way home Thursday morning, problem solved, healthy boy in tow. But that was short lived, because around 3:00 in the morning, his head was bulging pretty good and fluid was leaking out of his drain in his back again. They unclamped his drain around 4:00 in the morning, and at about 5:00 the chief resident came in and said that Andrew had made the call for them...he would need a shunt. It was heart wrenching. I really had been so hopeful and believed that he could do it on his own. I didn't want him to have a procedure that would be so permanent and most likely require more brain surgery at some time in the future (shunts nearly always require at least one, if not more revisions during a patient's life). I cried some good tears and tried to be grateful that we were still in a good hospital and that his problem could be taken care of. We could stop wondering if he needed a shunt or not...he did. So surgery preparation began...again.

I probably spent 3 hours in his bed on Wednesday - we both fell asleep. It was nice to hang out together.

Side note, Tish and her family stopped by on their way home from Orlando to Panama City on Wednesday, so that was another nice break from the norm. They took a quick peek at our home away from home and went on their way. We were glad to see you, Tish & gang :)


Thursday morning they took him away, put in a shunt, and surgery went great. They did a smaller breathing tube this time so he didn't have any stridor at all. He felt well enough to eat the same day and seemed pretty happy. There was a tiny bit of bulging, which we were assured was normal and it took a day or two for the shunt to drain the fluid properly. The day went pretty smoothly and we were hopeful we could take him home by Saturday at the latest, and Friday if we were really lucky.



You can kind of see the shunt in this picture. There is a small incision just up and behind his right ear and you can see the actual shunt under his skin. I hadn't realized before hand that you would be able to feel the shunt.

Friday morning, after a good night Thursday, we asked if we could get the ball rolling to get us home. We got cleared by the neurosurgeons and had our paperwork signed by lunchtime. Around 1:30 we had all the monitoring wires, IVs, blood pressure cuff etc. off and were headed home. We cleaned our RMH room and drove back to Tallahassee. Andrew was obviously sore, and mostly wanted to be held, but we were happy to be home. Jeffrey & Caitlyn told us over and over that they were glad we were home...so nice to be loved. Although with Grandma Milton holding down the fort, I don't think they missed us too much! We did have a bit of a scare when he threw up 2 times that evening, and were worried we'd have to take him to the local ER for fluids. We decided to wait through the night and Saturday turned out to be much better. The side of his head around his incision is totally flat now and he's becoming more himself. He still doesn't have the strength that he had before (although I don't think he knows that), so he requires a lot of monitoring. He has tried to pull up several times, and his legs can't support his weight yet (although he's significantly skinnier than he was 10 days ago!). I'm sure he'll be back to normal in no time!

In the kitchen of the RMH getting the rest of our things together to head home.

What a unique experience - overwhelming in many ways, but impossible to not see so many blessings. Dan's mom assures us that the kids were very well behaved (with a very few exceptions) and that they were truly receiving the blessings of so many prayers that were offered on our behalf. And even though things certainly didn't go how I wanted/hoped, and it was so painful to watch our sweet little boy go through so much, I could never deny the underlying feeling of peace throughout the entire experience. I'm sure that all is not over, still lots of follow up appointments, possibly some sort of shunt revision in the future, but I have no doubt that our Heavenly Father is very much aware of us and that He is guiding our lives. It's an odd experience to feel so peaceful when prayers certainly weren't answered in the way that I thought they would be. Weird to feel so blessed when we didn't receive the blessings I had hoped for. But impossible to deny that we have been watched over and cared for, not only so many dear family and friends, but also by a loving Father in Heaven.