Fortunately for S, the hospital stays dramatically decreased after her one major complication. We did have follow-up after follow-up, but no more week-long stays at the hospital. Unfortunately, even just a doctor visit broke my heart. She was so afraid of people that she screamed anytime someone touched her. She was so tired of being poked, prodded, examined, moved, looked at. And I couldn't blame her. She had been through so much. Once released from the hospital, we had a couple of appointments booked. She had her well-baby nine month check-up with Dr. P on March 17. He was pleased with how things were going, and how different she looked in such a small period of time. She was tolerating more, which was a blessing to see. Two days later, we had a follow-up with Dr. M, who confirmed that still no infection had been found in her cultures, and that we were "all clear". He had her head measured, and was satisfied that it wasn't getting any bigger at this point. However, because she'd had some complications, he wanted to see her again in a month, before spacing out her appointments.
S continued to grow and thrive. Things have gotten a little hazy at this point, because I didn't keep an accurate record. We were just so happy that the worst was over, so we were taking everything in, but totally forgetting to document things. S saw Dr. M again on April 16th, with no changes, and then had her follow-up MRI on May 3rd, to make sure that the ventricles were shrinking and that her shunt setting was correct. As usual, watching my baby go through sedation was incredibly hard, but she came through it like a champ. She nursed shortly after coming out of it, and we were released within an hour after that. We saw Dr. M on May 12 to discuss the MRI results - the ventricles had shrunk, the shunt was doing its thing, all was well. What a relief. From here, we were able to space out the appointments more.
At some point in between these appointments, we were also seeing PT/OT for S's physical delays. Because of the pressure on her brain, S had not been comfortable with tummy time, and had not learned to crawl. At her first appointment, S was already eight and a half months old, and was re-learning how to sit unassisted. She didn't have the automatic reflex to catch herself when she leaned too far to one side, so she fell over a lot. At each appointment, we were given a sheet with different exercises to help strengthen her core (tummy), but I had a hard time following through, because she would fight me every step of the way. Luckily, S always found her own way to do something that would exercise her the way she needed to be exercised.
S turned one in June. We had a family birthday party at home, which would have been great, except that it turned into a hot, sticky, rainy day, and we were all trapped inside. We did still manage to barbeque at least. S was still afraid of people and tried to follow me everywhere, but still not being very mobile, I wound up carrying her around a lot. I made a spiced pumpkin cake with cream cheese frosting. I had a lot of strange looks for the type of cake I made, but everyone was pleasantly surprised at how delicious it was.
We celebrated Father's Day at a carnival, just walking around, playing a couple of games and checking out the kiddie activities like the petting zoo, then went to my mother's for a steak dinner.
In August, S had her one year well-baby check-up. She was 20lbs 13oz and 29.5 inches long. Still a petite little thing. She had started scooting around the floor on her bum as a means of transportation, and was trying to stand unassisted. She had started turning the lower half of her body into crawling position, and would sometimes rock on all fours, but had yet to attempt moving in that position.
On October 14th, S took her first unassisted steps, after months of cruising. She was able to do short stints, but didn't make her way across the living room until November 7th. She was almost 17 months old. Even after all this time and practice, she still didn't know how to crawl.
Christmas was just like any other Christmas. It was a very happy time for all of us. S was so happy, was mobile, and was starting to get better around other people. She wouldn't let them hold her, but they were allowed to look at and talk to her.
I don't know when it happened, but probably somewhere in January or February, S learned how to crawl. Because of her steady progression and growth, she was discharged by PT/OT. In February, we had another MRI done, this time through a testing program where she wouldn't be sedated, because the procedure would only take about 5 minutes, instead of the usual 15-20 minutes. The first attempt failed, and the techs told me they thought she would need to be sedated. They wouldn't try to put her in, because they insisted she was moving around way too much, even though I told them she would stop moving once the machine started, because she'd be more focused on the noise than fighting the straps. They told me to pick her up, and that they didn't think we could do it without sedation. I got really upset. This visit had already been a big ordeal, but then they wanted me to take her home and come back to do it all over again? Nope. Uh uh. No way. We discussed options for a few minutes, and they mentioned that with smaller babies, they would let the mother nurse the baby, then hopefully the baby would fall asleep and they could do the procedure. I was still nursing my almost 20 month old daughter at the time, so I asked if I could try that. Even if she didn't fall asleep, it would help calm her down. So I nursed her for about 10 minutes, then changed her diaper. While changing her, one of the nurses came and said we were going to try again, and that the tech didn't see there being a problem getting it done the second time, even if she fought it. I asked why the change, and she said they got the head tech (or whatever they call him) and he was positive he could take the pictures that needed to be taken. We took some extra time getting her strapped in snugly, so she couldn't put her hands by her face. She struggled a little bit, but wasn't crying or screaming. And when they put her in the machine, they had a mirror set up so she could see me even while in there. As soon as the machine started making noise, she became silent. In the 5 minutes she was in the machine, she even almost fell asleep! Of course as soon as she came out, and we started unstrapping her, she became fussy and started whining until I was finally able to pick her up. BUT, it was done. Like I told them it would be. I don't understand why these people don't listen to the parents, the adults who know their kids.
Our appointment with Dr. M followed about 2-3 weeks later, and again we were told that her ventricles had gotten smaller and that her head circumference was remaining the same. All good news. Now our appointments are being spaced out to once a year, and no MRI for about 2-3 years, unless complications or concerns arise. It was at the last appointment that I finally thought to ask some basic questions. Can my child hang upside down? Yes. Will it cause the CSF to back up into her shunt? No. Can she play contact sports or do aerobics, gymnastics, etc? Yes. Dr. M believes that there is no need to restrict their physical activities. The shunt is securely in place, and apparently it is pretty hard to do damage that would cause it to stop working or need to be replaced. He said there is no reason for her to be restricted, and that she should do whatever she wants to do.
Some days my heart breaks. I rub her head, and I feel the lump where her shunt is, and I almost shudder in pain. She barely knows it's there most days, and I find that there are days that I don't think about her "condition". I know that hydrocephalus, at least for my daughter, isn't nearly as scary as I thought it was. It's not a death sentence. She will live a long and healthy life. And while she is still too young for us to know definitively, chances are that her condition was caught before any neurological damage could be done, which means we shouldn't have any problems with speech or her learning abilities. She has proven time and time again that she is an extremely bright child. She has caught up and is even ahead of where most 2 year olds are, mentally speaking. I have no doubt that S is a very special child indeed, and will continue to amaze me as she grows.
Monday, March 21, 2011
Tuesday, March 8, 2011
Recovery and Complications
S was released from the hospital on February 17th, 2010, on my mother's birthday. We visited my mother-in-law in the afternoon. She was surprised S had been released from hospital already, but I guess in our whirlwind week, we hadn't even thought to tell her she was having the surgery in the first place, so she'd had no idea until we showed her the scars. S was doing really well. She was pretty tired still, but it was so nice to be able to hold her without tubes and wires everywhere. We got a bit of rest at home and then we went out for dinner with family to celebrate my mom's birthday. S slept through half the meal, and then snuggled on my lap for the other half.
The first couple days, I was giving S Tylenol every 4-6 hours, because she was pretty uncomfortable. Once she started getting really fussy, I knew it was time for another dose. It wasn't too long, though, before I was able to space out her doses. She was on the mend.
February 26th was my oldest daughter's 7th birthday. It was a Friday, so she went to school. It was also the day to take S to see Dr. M, so he could check on her stitches and her overall recovery. He thought she looked a lot better, and said the stitches on her stomach and her head seemed to be healing well. I agreed that she looked better. She was able to do things that she hadn't been able to do for a month or longer. She didn't scream during diaper changes, and was actually starting to like lying on her back. We weren't doing tummy time, since she was still recovering, but she was back to enjoying her saucer, and was even bouncing around a little. She wasn't tensing up all the time. We were able to enjoy a nice family dinner at Olive Garden for D's birthday, and visit my mom for cake and presents.
While things were still going well, about a week later, we noticed some subtle changes. S's shunt site was starting to look...puffy, for lack of a better word. This could possibly mean that the valve was blocked, or that the setting on the shunt wasn't allowing enough fluid to drain, and needed to be adjusted. I spoke with Gail, Dr. M's nurse, on a couple of occasions, and was advised to keep them updated on any changes. On Thursday, March 4th, she told me that she would talk to Dr. M to discuss my concerns. I waited through Friday with no return call. On Saturday, S's shunt site seemed even more enlarged, I was getting more concerned, and my mother was starting to get frantic. On top that, I had noticed that her fontanel seemed to be slightly puffy, and it felt like her skull was spreading. I called the hospital and was advised to have her seen, because it was a specialized situation that they had no expertise in over the phone.
On Saturday, March 6th, we all took a trip to Children's emergency, with three kids in tow. The doctors ordered a head CT scan and x-rays. At 10pm, Wayne took the older girls to my aunt's house to spend the night. The CT scan was first. The procedure took about 10-15 minutes, with S crying because she was strapped to a metal bed with towels surrounding her head to keep her still. It was hard watching her go through that. We had some time to kill between the CT and the x-ray, but while waiting for her x-ray to be done, I noticed wetness on my shirt. I thought at first that maybe it was just sweat, but after taking a closer look at her head, I found that it was S's head that was leaking. Her stitches weren't fully healed, it seemed, and with all of the stress of her crying and screaming, and the added pressure, it had actually caused some cerebral spinal fluid to leak out of her shunt site. I mentioned it to the x-ray tech before I brought her in. They brought me a clean towel to keep on her head to minimize the risk of infection.
At 1:00am, a doctor from neurosurgery came down to check on S. He wanted to get a sample of CSF through a valve tap, but he couldn't get into it, so he took a sample straight from the bulge surrounding her shunt. He then adjusted the setting of her shunt, to allow fluid to flow through more quickly. Because of the now new risk of infection, S had to be admitted until results of her CSF tests came back clean.
Somewhere around 4:00am, we were moved out of emergency and into a room. S was assessed by the nurse, and we signed some paperwork pertaining to her treatment. I was told I was not allowed to nurse her, because if there was infection and surgery was needed to replace the shunt, she would need to have an empty stomach. At 5:30am, with S somewhat settled, we went home to get some sleep. Wayne had to work on Sunday, so he dropped me off at the hospital around 10:30 and went to work. When I arrived, the nurse told me that she had done okay while I was gone, but I later found out that she actually had an awful time coping with my absence. All of the nurses on staff had tried their hand at soothing her and had been unsuccessful. This information made me very upset, because I told the nurse when I left that if she couldn't be soothed, I wanted to be called immediately. I knew she was very attached, and I didn't want her getting too stressed out. I ended up making a complaint against the staff because of that.
The preliminary test results showed no infection in S's CSF, but they wanted to wait a full 48 hours for possible cultures to show up. I was finally allowed to nurse her Sunday afternoon, because it was obvious she wouldn't have surgery that day. She was allowed solids up until midnight, but would have to fast again, in case surgery was required the next day. After speaking with the charge nurse Sunday night, and leaving explicit instructions yet again that I be contacted at any sign of stress, we left around 1:00am.
I arrived at the hospital at 7:00am Monday morning. The nurse told me that S had done better than the night before, except that there had been a complication with her IV. It had come out of her vein, and the nurses couldn't get it back in, so they took her down to emergency to have someone there put it back in, and then they brought her back to her room. Again, demonstrating that they couldn't follow instructions that I be contacted.
Dr. M came by Monday morning to discuss S's situation. Even though the CSF cultures were still negative, he wanted us to stay in hospital a full 5 days (meaning until Friday), because that's how long it could take bacteria to show up. S was already being administered heavy doses of antibiotics to kill off any possible infection, but Dr. M wanted to stay on the cautious side. At this point, because of the cultures being negative, we were taken off food restriction. At least that was one less thing to stress about. I had decided then that I would not be leaving S's side for the duration of her stay. The hospital staff obviously couldn't follow written instruction, so the only way to ensure her comfort was to stay by her bed.
ID (Infectious Disease) came down to give me more detailed information on the antibiotics being given and what the cultures and testing meant. I was told the attending would come by to check on S, but he never did. I went home for an hour in the evening while Wayne stayed with her, to pack an overnight bag and spend a little time with my girls. I got a call in less than an hour that S was getting agitated already, so I quickly packed and headed back.
On Tuesday, March 9th, Dr. M came by again, even though he said he wasn't going to. He said everything was looking great, the cultures were still negative, and he thought it might be possible that S would be released on Wednesday or Thursday. He also mentioned adjusting the setting on the shunt and dialing it down even more, to reduce the swelling we were still seeing. The attending didn't make an appearance again. Two ladies came by from Physiotherapy and Occupational Therapy (PT/OT). They wanted to discuss doing an assessment to see if S needed any assistance physically. They talked to me about the kinds of things they wanted to do and see. They tried to do a few activities with her, but she became too agitated and would not cooperate, so we made arrangements for them to come back on Wednesday.
Wednesday came and still the CSF cultures were negative. The nurse told me that the resident had our chart, that he was doing rounds, and that he would be by sometime in the morning. And yet again, he still never showed up. Gail came by and we discussed the results of the cultures, how long we needed to stay, and re-tapping the shunt. We both agreed that re-tapping the shunt wasn't necessary, because everything was going so well. She confirmed with ID that getting another sample at this point was really not a concern, and then we talked about options for release. We made arrangements, which she repeated to the nurses, that as long as the CSF results were negative on Thursday, and S got her fifth day of antibiotics administered, that she should be released Thursday afternoon. She told me she was going to tell Dr. M about our arrangements, and of course if anything needed to be adjusted, they would let me know. PT/OT came by Wednesday afternoon, and even though S got upset, she was able to demonstrate some of the things they wanted her to. We agreed to have out-patient visits and made an appointment for the end of March. They also gave me papers with some exercises I could do with her at home before then. Things that they would want to assess at the end of the month to see if ongoing visits were necessary.
On Thursday, March 11, we started getting the runaround. Dr. M wasn't going to be coming by because he was on vacation. He actually wasn't supposed to be there on Monday, Tuesday or Wednesday, but he kept coming by just to check on her. I started hearing that they wanted to keep us until Friday. They really tried to fight me, but after arguing that she had been on antibiotics all week and that her cultures continuously came back negative, that there really was no reason to keep her any longer. I promised that if, for some reason, they got different results on Friday, I would bring her right back so we could continue treatment. And finally, Thursday afternoon, we were released and sent home.
The first couple days, I was giving S Tylenol every 4-6 hours, because she was pretty uncomfortable. Once she started getting really fussy, I knew it was time for another dose. It wasn't too long, though, before I was able to space out her doses. She was on the mend.
February 26th was my oldest daughter's 7th birthday. It was a Friday, so she went to school. It was also the day to take S to see Dr. M, so he could check on her stitches and her overall recovery. He thought she looked a lot better, and said the stitches on her stomach and her head seemed to be healing well. I agreed that she looked better. She was able to do things that she hadn't been able to do for a month or longer. She didn't scream during diaper changes, and was actually starting to like lying on her back. We weren't doing tummy time, since she was still recovering, but she was back to enjoying her saucer, and was even bouncing around a little. She wasn't tensing up all the time. We were able to enjoy a nice family dinner at Olive Garden for D's birthday, and visit my mom for cake and presents.
While things were still going well, about a week later, we noticed some subtle changes. S's shunt site was starting to look...puffy, for lack of a better word. This could possibly mean that the valve was blocked, or that the setting on the shunt wasn't allowing enough fluid to drain, and needed to be adjusted. I spoke with Gail, Dr. M's nurse, on a couple of occasions, and was advised to keep them updated on any changes. On Thursday, March 4th, she told me that she would talk to Dr. M to discuss my concerns. I waited through Friday with no return call. On Saturday, S's shunt site seemed even more enlarged, I was getting more concerned, and my mother was starting to get frantic. On top that, I had noticed that her fontanel seemed to be slightly puffy, and it felt like her skull was spreading. I called the hospital and was advised to have her seen, because it was a specialized situation that they had no expertise in over the phone.
On Saturday, March 6th, we all took a trip to Children's emergency, with three kids in tow. The doctors ordered a head CT scan and x-rays. At 10pm, Wayne took the older girls to my aunt's house to spend the night. The CT scan was first. The procedure took about 10-15 minutes, with S crying because she was strapped to a metal bed with towels surrounding her head to keep her still. It was hard watching her go through that. We had some time to kill between the CT and the x-ray, but while waiting for her x-ray to be done, I noticed wetness on my shirt. I thought at first that maybe it was just sweat, but after taking a closer look at her head, I found that it was S's head that was leaking. Her stitches weren't fully healed, it seemed, and with all of the stress of her crying and screaming, and the added pressure, it had actually caused some cerebral spinal fluid to leak out of her shunt site. I mentioned it to the x-ray tech before I brought her in. They brought me a clean towel to keep on her head to minimize the risk of infection.
At 1:00am, a doctor from neurosurgery came down to check on S. He wanted to get a sample of CSF through a valve tap, but he couldn't get into it, so he took a sample straight from the bulge surrounding her shunt. He then adjusted the setting of her shunt, to allow fluid to flow through more quickly. Because of the now new risk of infection, S had to be admitted until results of her CSF tests came back clean.
Somewhere around 4:00am, we were moved out of emergency and into a room. S was assessed by the nurse, and we signed some paperwork pertaining to her treatment. I was told I was not allowed to nurse her, because if there was infection and surgery was needed to replace the shunt, she would need to have an empty stomach. At 5:30am, with S somewhat settled, we went home to get some sleep. Wayne had to work on Sunday, so he dropped me off at the hospital around 10:30 and went to work. When I arrived, the nurse told me that she had done okay while I was gone, but I later found out that she actually had an awful time coping with my absence. All of the nurses on staff had tried their hand at soothing her and had been unsuccessful. This information made me very upset, because I told the nurse when I left that if she couldn't be soothed, I wanted to be called immediately. I knew she was very attached, and I didn't want her getting too stressed out. I ended up making a complaint against the staff because of that.
The preliminary test results showed no infection in S's CSF, but they wanted to wait a full 48 hours for possible cultures to show up. I was finally allowed to nurse her Sunday afternoon, because it was obvious she wouldn't have surgery that day. She was allowed solids up until midnight, but would have to fast again, in case surgery was required the next day. After speaking with the charge nurse Sunday night, and leaving explicit instructions yet again that I be contacted at any sign of stress, we left around 1:00am.
I arrived at the hospital at 7:00am Monday morning. The nurse told me that S had done better than the night before, except that there had been a complication with her IV. It had come out of her vein, and the nurses couldn't get it back in, so they took her down to emergency to have someone there put it back in, and then they brought her back to her room. Again, demonstrating that they couldn't follow instructions that I be contacted.
Dr. M came by Monday morning to discuss S's situation. Even though the CSF cultures were still negative, he wanted us to stay in hospital a full 5 days (meaning until Friday), because that's how long it could take bacteria to show up. S was already being administered heavy doses of antibiotics to kill off any possible infection, but Dr. M wanted to stay on the cautious side. At this point, because of the cultures being negative, we were taken off food restriction. At least that was one less thing to stress about. I had decided then that I would not be leaving S's side for the duration of her stay. The hospital staff obviously couldn't follow written instruction, so the only way to ensure her comfort was to stay by her bed.
ID (Infectious Disease) came down to give me more detailed information on the antibiotics being given and what the cultures and testing meant. I was told the attending would come by to check on S, but he never did. I went home for an hour in the evening while Wayne stayed with her, to pack an overnight bag and spend a little time with my girls. I got a call in less than an hour that S was getting agitated already, so I quickly packed and headed back.
On Tuesday, March 9th, Dr. M came by again, even though he said he wasn't going to. He said everything was looking great, the cultures were still negative, and he thought it might be possible that S would be released on Wednesday or Thursday. He also mentioned adjusting the setting on the shunt and dialing it down even more, to reduce the swelling we were still seeing. The attending didn't make an appearance again. Two ladies came by from Physiotherapy and Occupational Therapy (PT/OT). They wanted to discuss doing an assessment to see if S needed any assistance physically. They talked to me about the kinds of things they wanted to do and see. They tried to do a few activities with her, but she became too agitated and would not cooperate, so we made arrangements for them to come back on Wednesday.
Wednesday came and still the CSF cultures were negative. The nurse told me that the resident had our chart, that he was doing rounds, and that he would be by sometime in the morning. And yet again, he still never showed up. Gail came by and we discussed the results of the cultures, how long we needed to stay, and re-tapping the shunt. We both agreed that re-tapping the shunt wasn't necessary, because everything was going so well. She confirmed with ID that getting another sample at this point was really not a concern, and then we talked about options for release. We made arrangements, which she repeated to the nurses, that as long as the CSF results were negative on Thursday, and S got her fifth day of antibiotics administered, that she should be released Thursday afternoon. She told me she was going to tell Dr. M about our arrangements, and of course if anything needed to be adjusted, they would let me know. PT/OT came by Wednesday afternoon, and even though S got upset, she was able to demonstrate some of the things they wanted her to. We agreed to have out-patient visits and made an appointment for the end of March. They also gave me papers with some exercises I could do with her at home before then. Things that they would want to assess at the end of the month to see if ongoing visits were necessary.
On Thursday, March 11, we started getting the runaround. Dr. M wasn't going to be coming by because he was on vacation. He actually wasn't supposed to be there on Monday, Tuesday or Wednesday, but he kept coming by just to check on her. I started hearing that they wanted to keep us until Friday. They really tried to fight me, but after arguing that she had been on antibiotics all week and that her cultures continuously came back negative, that there really was no reason to keep her any longer. I promised that if, for some reason, they got different results on Friday, I would bring her right back so we could continue treatment. And finally, Thursday afternoon, we were released and sent home.
Tuesday, March 1, 2011
Surgery
The week from February 10th to the 16th was the longest week ever. While discussing plans for S's surgery, getting details and pamphlets on her condition, the valve and shunt that would be inserted into my daughter's brain, and discussing possible surgery post-op complications, all I could think was This can't be happening. They told us that this was actually a fairly routine surgery. Dr. M does shunt surgeries once or twice a week, on average, maybe more. It was really hard thinking about my daughter having surgery when we weren't really seeing any symptoms. She wasn't lethargic, she wasn't vomiting, her fontanel (soft spot on her head) wasn't bulging, though it was starting to look a little different.
The week leading up to S's surgery was something of a blur. One thing that we did notice, though, was that in that week, she started to seriously deteriorate. She had already started losing balance while sitting. She was uncomfortable lying down in any position (the added pressure in her head was magnified any time she wasn't upright). Her fontanel slowly started bulging out over that week. By the time February 16th came, we were actually pretty thankful that she was having surgery. She was in pain, you could tell just by looking at her. Looking back at her first 8 months of life, more specifically the 2-3 months before her surgery, it was hard to think that she had most likely been suffering from headaches. She would hit and scratch at her head around her ears, more when she was upset, but sometimes for no particular reason at all. I kept thinking she had an ear infection but her ears were always fine. As early as we caught it, I still almost wish they had found things sooner, or moved even faster than they had.
The morning of S's surgery, we had to fast again. Something that was very difficult with a breastfeeding child. The only good thing about having a breastfeeding child needing surgery is that they don't have to fast the whole 12 hours. She only had to stop breastfeeding 4 hours prior to her surgery. The downside though was that it was in the morning, so I had to wake up and wake her up very early so we could get one last nursing session in. The surgery was scheduled for 9:45am, and we had to be at the hospital an hour and a half before, to go through registration, admitting and the pre-op exam. What ended up happening was that the OR was delayed because of emergencies or whatever, and she wasn't taken in until around 1:30pm. From 5:30am until 1:30pm, my little angel was not allowed to eat or drink anything. Needless to say, it was an extremely long, difficult wait.
Surgery was scheduled for 2.5 hours, but S came out in under 2 hours. She was taken to the PICU, to be monitored for 24 hours. She was awake and coming out of anesthesia when we got to her room. She was still very groggy, but she perked up when she saw me and Daddy. She started crying, but was so hoarse from the tubes that had to place in her throat. I was told it was a partial trach, so it didn't go all the way down, just far enough to keep her throat open. She had an IV and the nose cannula and was being slowly weaned off the oxygen.
Dr. M was there either as soon as we arrived, or shortly afterward. He said that everything went perfectly, there were absolutely no complications. She handles anesthesia well. He probably gave us information about caring for her once taking her home, but really, we were just so relieved that everything was done and she was awake and well. Dr. M told us that because she had done so well, that she might even get to be released within 24 hours! Once he left, we worked with the nurse to get S comfortable in my lap so we could finally nurse, almost 12 hours after her last meal.
Wayne stayed and kept us company until around 5pm when my Aunt Brenda showed up. We are only allowed 2 visitors at a time in the PICU, so Wayne left to get some rest. Aunt Brenda stayed for a few hours, and then Wayne came back shortly after she'd left. I was able to feed S a small amount of applesauce I had brought along for her. At around 9 or 10pm, a nurse came by to tell me that because of another emergent case coming to the hospital, and because S was doing so well, we were actually getting bumped out of the PICU! It was all happening so fast. At 11pm, we got transferred to another floor where we were put in a monitored room. Once we'd gotten S settled and comfortable in her new room, we actually left for the night. I felt so bad leaving her there, but I knew I'd get no sleep there, and I really needed to be rested when she came home. We left around 12:30am and I came back at 7:30am. She had had some difficulty through the night, had been somewhat upset at my leaving. We'd left our stroller there, and the nurse had put her in the stroller and rocked her and walked her around the ward. She'd even tried to feed her, but S hadn't been interested. She wouldn't take a bottle either.
S's release was delayed by a few hours because one of her doses of antibiotics had been missed. She was supposed to get them every 8 hours, but with the late night switch from the PICU to the monitored rooms, something had been missed. We ended up being discharged around 2pm that afternoon, after my insistence. I know we hadn't been there long, but Dr. M just kept telling me how well she was doing, and I seriously hate hospitals. I just wanted to take my baby home. We knew she was accepting the antibiotics well, so as soon as she got her last dose, doc signed the papers and released us.
The week leading up to S's surgery was something of a blur. One thing that we did notice, though, was that in that week, she started to seriously deteriorate. She had already started losing balance while sitting. She was uncomfortable lying down in any position (the added pressure in her head was magnified any time she wasn't upright). Her fontanel slowly started bulging out over that week. By the time February 16th came, we were actually pretty thankful that she was having surgery. She was in pain, you could tell just by looking at her. Looking back at her first 8 months of life, more specifically the 2-3 months before her surgery, it was hard to think that she had most likely been suffering from headaches. She would hit and scratch at her head around her ears, more when she was upset, but sometimes for no particular reason at all. I kept thinking she had an ear infection but her ears were always fine. As early as we caught it, I still almost wish they had found things sooner, or moved even faster than they had.
The morning of S's surgery, we had to fast again. Something that was very difficult with a breastfeeding child. The only good thing about having a breastfeeding child needing surgery is that they don't have to fast the whole 12 hours. She only had to stop breastfeeding 4 hours prior to her surgery. The downside though was that it was in the morning, so I had to wake up and wake her up very early so we could get one last nursing session in. The surgery was scheduled for 9:45am, and we had to be at the hospital an hour and a half before, to go through registration, admitting and the pre-op exam. What ended up happening was that the OR was delayed because of emergencies or whatever, and she wasn't taken in until around 1:30pm. From 5:30am until 1:30pm, my little angel was not allowed to eat or drink anything. Needless to say, it was an extremely long, difficult wait.
Surgery was scheduled for 2.5 hours, but S came out in under 2 hours. She was taken to the PICU, to be monitored for 24 hours. She was awake and coming out of anesthesia when we got to her room. She was still very groggy, but she perked up when she saw me and Daddy. She started crying, but was so hoarse from the tubes that had to place in her throat. I was told it was a partial trach, so it didn't go all the way down, just far enough to keep her throat open. She had an IV and the nose cannula and was being slowly weaned off the oxygen.
Dr. M was there either as soon as we arrived, or shortly afterward. He said that everything went perfectly, there were absolutely no complications. She handles anesthesia well. He probably gave us information about caring for her once taking her home, but really, we were just so relieved that everything was done and she was awake and well. Dr. M told us that because she had done so well, that she might even get to be released within 24 hours! Once he left, we worked with the nurse to get S comfortable in my lap so we could finally nurse, almost 12 hours after her last meal.
Wayne stayed and kept us company until around 5pm when my Aunt Brenda showed up. We are only allowed 2 visitors at a time in the PICU, so Wayne left to get some rest. Aunt Brenda stayed for a few hours, and then Wayne came back shortly after she'd left. I was able to feed S a small amount of applesauce I had brought along for her. At around 9 or 10pm, a nurse came by to tell me that because of another emergent case coming to the hospital, and because S was doing so well, we were actually getting bumped out of the PICU! It was all happening so fast. At 11pm, we got transferred to another floor where we were put in a monitored room. Once we'd gotten S settled and comfortable in her new room, we actually left for the night. I felt so bad leaving her there, but I knew I'd get no sleep there, and I really needed to be rested when she came home. We left around 12:30am and I came back at 7:30am. She had had some difficulty through the night, had been somewhat upset at my leaving. We'd left our stroller there, and the nurse had put her in the stroller and rocked her and walked her around the ward. She'd even tried to feed her, but S hadn't been interested. She wouldn't take a bottle either.
S's release was delayed by a few hours because one of her doses of antibiotics had been missed. She was supposed to get them every 8 hours, but with the late night switch from the PICU to the monitored rooms, something had been missed. We ended up being discharged around 2pm that afternoon, after my insistence. I know we hadn't been there long, but Dr. M just kept telling me how well she was doing, and I seriously hate hospitals. I just wanted to take my baby home. We knew she was accepting the antibiotics well, so as soon as she got her last dose, doc signed the papers and released us.
Friday, February 18, 2011
The Diagnosis
I believe it was right before Christmas, in 2009, that I took S to her 6 month well baby check up. Up until that point, our check ups had been normal and right on par for her age. Something different happened that day.
It started with the usual weighing and measuring. Dr. P asked if I had any concerns, and at that point, I didn't. He did an overall exam, and then started jotting things on her growth chart. And then he stopped. "I'd like to measure her head again," he told me. I just assumed, as he had, that he wanted to make sure he'd written the correct measurement. He had, but that was where the concern came in. He told me that her head circumference was measuring a little larger than he would expect. The rate of growth seemed to be a little faster than normal. To be cautious, he told me he was going to order a head ultrasound, just to take a quick peek. He mentioned that I had a large forehead (uh, thanks?) and that it could just be hereditary.
S's head ultrasound was scheduled for January 12th, exactly 7 months from the day she was born. Of course, the techs can't tell you anything. They look for what they're looking for, they consult with a doctor, who also doesn't tell you anything, and then they send the report back to your doctor. I had no idea what we were dealing with. The ultrasound itself didn't take a lot of time. S was very squirmy, as any 7 month old child would be, and the pictures weren't as clear as they'd hoped because her fontanel (aka soft spot) was very small. They couldn't really tell me anything. So we went home. And that afternoon, maybe an hour after the ultrasound appointment, I got a call from Dr. P. I had never, ever, gotten a call from him. He told me, over the phone, very matter-of-factly, that my daughter had hydrocephalus. For those who don't know, hydrocephalus, also called water on the brain, is a condition where, for whatever reason, the cerebral spinal fluid isn't draining adequately from the brain. In a "normal" system, CSF travels up the spine into the brain and then back down the spine. In people with hydrocephalus, this "drainage" is somehow slowed or blocked altogether. Sometimes this is caused by a major head trauma or injury. Or, as in the case with my daughter, it is something one is born with. In some cases, usually more severe, this condition can be diagnosed in utero. In others, it is not diagnosed until 1 year or beyond.
What did this mean for Seylah? Well, at this time, they still felt that it wasn't emergent. A referral for an MRI was sent out, and in the meantime, we waited. Dr. P gave me a list of symptoms to watch for: dizziness, lethargy, vomiting, a bulging fontanel. If I had any concerns, I was to call right away. The MRI was booked for February 9th. Again, we had nearly a whole month to wait.
In the month we had to wait, I started noticing small changes in S. She had been able to sit up on her own at around 6 months, but now, at 7+ months, she was losing her balance a little. She hated being on her tummy. She wanted to be held all the time. She started to hate diaper changes. I had no idea what this all meant. I think I called the doctor to ask about them, but because they weren't accompanied by vomiting or a bulging fontanel, he didn't seem concerned. I watched my baby not progress in physical milestones.
The MRI was much harder than the head ultrasound. S was almost 8 months old, and couldn't be expected to remain still for 15+ minutes, and so she had to be sedated. This meant fasting, getting an IV, and being put under general anesthesia. Fasting was hard. She was still nursing every 2-3 hours, and she had to be clear of fluids for 4 hours prior to her appointment. She was so cranky in the waiting room. When we were called in, they looked at her veins, and I told them that, like me, she had very thin veins, making it hard to get an IV placed. They agreed that we could use the gas first to put her to sleep, and then they would put the IV in to ensure she stayed asleep for the whole procedure. I was able to walk her into the MRI room, and I was the one to put the mask on her face. That is probably one of the hardest things I parent has to do to her child. I felt her quickly get limp in my arms, and I cried. The nurse took her from me and laid her down, and they told me to go wait in the waiting room or take a walk or something, and that they would come for me after she was put in the post-op room. My aunt came with me, and she took me for something to eat. We went back, and I could hear crying, and I just knew it was her. I rushed to her bed. She was coming out of the anesthesia already and was upset that I wasn't there. I was able to nurse her, and then they took her IV out, and then I nursed her again. She was monitored for about an hour before they signed her release. She had come through everything well. We were sent home to wait on results.
The next day, February 10th, we saw the neurosurgeon, Dr. M. He explained to us that S did, in fact, have hydrocephalus. He told us that there are four ventricles in the brain that are filled with CSF. In S's case, all 4 ventricles were about 4-5 times the size they should be for her age. He said that they should normally be about the length and width of an adult thumb, and they were more the size of a small fist. Maybe that's more than 4-5 times the size. He said, given the information, her best bet was surgery. I asked him what would happen if she didn't have the surgery. He said that if the ventricles continued to grow, they would start to put more and more pressure on her brain, causing brain damage. The extent would depend on where the pressure was placed. We went through what the surgery would entail. A small incision close to the base of her skull on the right side, behind the ear, would be used to place the shunt inside one of the ventricles. From there, a thin tube would run under her skin down into her abdomen, which is where the excess fluid would drain, in her abdominal cavity. The type of shunt used for S is called a Strata Valve. This valve is "programmable", in that there are multiple settings controlled by a magnet. These settings can increase or decrease the flow of CFS. The higher the setting, the more force it takes to direct the CSF out of the brain, meaning less drainage. The benefits to this shunt are that they will not need to replace it if there is not enough (or too much) CSF draining. The tube that was run from the shunt to her abdomen was made of a certain length so that as she grows, she will not need subsequent surgeries to adjust to her growing body. There is enough tubing in her abdomen to continue to drain as she grows up. What this means for her is less surgeries throughout her life. She would only need surgery if, for some reason, the shunt malfunctioned (got clogged) and was no longer draining CSF, or if she were fighting off an infection and it started attacking the shunt, or if she started experiencing abdominal pain that might be linked to the drainage site. However, if it is found that her brain starts absorbing the CSF at a normal rate, and there is no longer need for a shunt (apparently this is very rare), this would not be reason to do surgery. They found that going in to remove a shunt that was no longer needed was more risky than just leaving it in there. He pretty much told us that she will have this thing in her brain for the rest of her life.
All of this information was so hard to process. Wayne and I sat there and cried, while the doctor told us that this was actually caught in the early stages, and the chance that it caused neurological damage was pretty slim. He said that this was not considered an emergent case, but that she would need surgery "soon". How soon, we asked. He sent his nurse to check the OR availability. Next week, they said. He asked if we wanted to talk it over and get back to him. We looked at each other and said no. If this is what she needed, then this is what we'd do. S's surgery was booked for February 16th, 2010.
It started with the usual weighing and measuring. Dr. P asked if I had any concerns, and at that point, I didn't. He did an overall exam, and then started jotting things on her growth chart. And then he stopped. "I'd like to measure her head again," he told me. I just assumed, as he had, that he wanted to make sure he'd written the correct measurement. He had, but that was where the concern came in. He told me that her head circumference was measuring a little larger than he would expect. The rate of growth seemed to be a little faster than normal. To be cautious, he told me he was going to order a head ultrasound, just to take a quick peek. He mentioned that I had a large forehead (uh, thanks?) and that it could just be hereditary.
S's head ultrasound was scheduled for January 12th, exactly 7 months from the day she was born. Of course, the techs can't tell you anything. They look for what they're looking for, they consult with a doctor, who also doesn't tell you anything, and then they send the report back to your doctor. I had no idea what we were dealing with. The ultrasound itself didn't take a lot of time. S was very squirmy, as any 7 month old child would be, and the pictures weren't as clear as they'd hoped because her fontanel (aka soft spot) was very small. They couldn't really tell me anything. So we went home. And that afternoon, maybe an hour after the ultrasound appointment, I got a call from Dr. P. I had never, ever, gotten a call from him. He told me, over the phone, very matter-of-factly, that my daughter had hydrocephalus. For those who don't know, hydrocephalus, also called water on the brain, is a condition where, for whatever reason, the cerebral spinal fluid isn't draining adequately from the brain. In a "normal" system, CSF travels up the spine into the brain and then back down the spine. In people with hydrocephalus, this "drainage" is somehow slowed or blocked altogether. Sometimes this is caused by a major head trauma or injury. Or, as in the case with my daughter, it is something one is born with. In some cases, usually more severe, this condition can be diagnosed in utero. In others, it is not diagnosed until 1 year or beyond.
What did this mean for Seylah? Well, at this time, they still felt that it wasn't emergent. A referral for an MRI was sent out, and in the meantime, we waited. Dr. P gave me a list of symptoms to watch for: dizziness, lethargy, vomiting, a bulging fontanel. If I had any concerns, I was to call right away. The MRI was booked for February 9th. Again, we had nearly a whole month to wait.
In the month we had to wait, I started noticing small changes in S. She had been able to sit up on her own at around 6 months, but now, at 7+ months, she was losing her balance a little. She hated being on her tummy. She wanted to be held all the time. She started to hate diaper changes. I had no idea what this all meant. I think I called the doctor to ask about them, but because they weren't accompanied by vomiting or a bulging fontanel, he didn't seem concerned. I watched my baby not progress in physical milestones.
The MRI was much harder than the head ultrasound. S was almost 8 months old, and couldn't be expected to remain still for 15+ minutes, and so she had to be sedated. This meant fasting, getting an IV, and being put under general anesthesia. Fasting was hard. She was still nursing every 2-3 hours, and she had to be clear of fluids for 4 hours prior to her appointment. She was so cranky in the waiting room. When we were called in, they looked at her veins, and I told them that, like me, she had very thin veins, making it hard to get an IV placed. They agreed that we could use the gas first to put her to sleep, and then they would put the IV in to ensure she stayed asleep for the whole procedure. I was able to walk her into the MRI room, and I was the one to put the mask on her face. That is probably one of the hardest things I parent has to do to her child. I felt her quickly get limp in my arms, and I cried. The nurse took her from me and laid her down, and they told me to go wait in the waiting room or take a walk or something, and that they would come for me after she was put in the post-op room. My aunt came with me, and she took me for something to eat. We went back, and I could hear crying, and I just knew it was her. I rushed to her bed. She was coming out of the anesthesia already and was upset that I wasn't there. I was able to nurse her, and then they took her IV out, and then I nursed her again. She was monitored for about an hour before they signed her release. She had come through everything well. We were sent home to wait on results.
The next day, February 10th, we saw the neurosurgeon, Dr. M. He explained to us that S did, in fact, have hydrocephalus. He told us that there are four ventricles in the brain that are filled with CSF. In S's case, all 4 ventricles were about 4-5 times the size they should be for her age. He said that they should normally be about the length and width of an adult thumb, and they were more the size of a small fist. Maybe that's more than 4-5 times the size. He said, given the information, her best bet was surgery. I asked him what would happen if she didn't have the surgery. He said that if the ventricles continued to grow, they would start to put more and more pressure on her brain, causing brain damage. The extent would depend on where the pressure was placed. We went through what the surgery would entail. A small incision close to the base of her skull on the right side, behind the ear, would be used to place the shunt inside one of the ventricles. From there, a thin tube would run under her skin down into her abdomen, which is where the excess fluid would drain, in her abdominal cavity. The type of shunt used for S is called a Strata Valve. This valve is "programmable", in that there are multiple settings controlled by a magnet. These settings can increase or decrease the flow of CFS. The higher the setting, the more force it takes to direct the CSF out of the brain, meaning less drainage. The benefits to this shunt are that they will not need to replace it if there is not enough (or too much) CSF draining. The tube that was run from the shunt to her abdomen was made of a certain length so that as she grows, she will not need subsequent surgeries to adjust to her growing body. There is enough tubing in her abdomen to continue to drain as she grows up. What this means for her is less surgeries throughout her life. She would only need surgery if, for some reason, the shunt malfunctioned (got clogged) and was no longer draining CSF, or if she were fighting off an infection and it started attacking the shunt, or if she started experiencing abdominal pain that might be linked to the drainage site. However, if it is found that her brain starts absorbing the CSF at a normal rate, and there is no longer need for a shunt (apparently this is very rare), this would not be reason to do surgery. They found that going in to remove a shunt that was no longer needed was more risky than just leaving it in there. He pretty much told us that she will have this thing in her brain for the rest of her life.
All of this information was so hard to process. Wayne and I sat there and cried, while the doctor told us that this was actually caught in the early stages, and the chance that it caused neurological damage was pretty slim. He said that this was not considered an emergent case, but that she would need surgery "soon". How soon, we asked. He sent his nurse to check the OR availability. Next week, they said. He asked if we wanted to talk it over and get back to him. We looked at each other and said no. If this is what she needed, then this is what we'd do. S's surgery was booked for February 16th, 2010.
Tuesday, February 8, 2011
Hello World
This is not my first blog. It probably won't be my last. Right now, though, I am just hoping it survives past one post. I am a journal-er by nature, I have volumes upon volumes of books filled with teenage angst, drama, stories and just life in general. I have chronicled my journey to motherhood, written on the adoption process of my middle child, and logged brief updates of my youngest child's diagnosis of hydrocephalus, following her through surgery, recovery, and the road back to healthy (as healthy as one can be with a shunt in your brain). A few years back, I started a blog, just for something to do. It seemed like everyone else was doing it. I had random rants about my personal life and whatever happened to come to mind. Then I switched gears a little when I found a blog belonging to a woman who used her Crock Pot for one year, and posted all of her recipes, good and bad. I started posting recipes as I attempted my own versions of meals I found on her site. I think that lasted about a week. Then I tried to "re-vamp" my blog when my daughter was diagnosed, so I could keep a record of everything that happened. I didn't even get past the reintroduction post.
Sometimes I am great at coming up with ideas for writing projects, but not so great at follow-through. I am hoping to change that with this blog. I don't suspect anybody will really be interested in my randomness, but I am feeling the need to write somewhere, and it just seems like common sense to put it here, where I spend a good portion of my day anyway. My poor paper journal is sorely lacking. I can type for an hour or more and not cramp up, but five minutes with a pen and my hand aches.
I guess that's a little blogging background. Now maybe for some personal stuff. I am 30. I have three wonderful daughters; D will be turning 8 in about 2 weeks, T is 7 and S is 20 months, give or take a few days. I live with my common-law husband, and our 4 furry pets, 2 cats and 2 dogs. We definitely have a full house. I am a stay-at-home-mom (SAHM). My husband is a mechanic/supervisor at a local bowling alley. I sell Avon products, but make no money. My main client is my aunt, AL, and then myself. I get some neat things through there, at a discount, which is kinda cool. I'm hoping that once spring finally arrives I'll have the drive to get out and search for more customers and/or build a team of my own. I am slowly working towards my calling, becoming a doula. For anyone who doesn't know what that is, a doula is a woman who supports a mother (and father if they choose) during labor, birth, and postpartum. There are birth doulas, who usually arrive during early labor, and will stay until about 2 hours postpartum, and there are postpartum doulas, who do not arrive until after baby is born, but they will visit a number of times during a postpartum period, a few times a week, maybe a few times a day, depending on what the doula and family have agreed upon. I want to become a birth doula. My original goal was to become a midwife, but I have since decided that I'm not so sure I can handle the formality of a midwife. There is so much more responsibility there. I want to be present for births, but I prefer the support of the mother aspect of the job.
As for my blog title: Part Time Crunchy, I find that I am sometimes a lazy/cheap cruncher. It would be great to go totally organic, green with everything, etc, but sometimes it really is extra work and/or more expensive! I pay more than double for "green" dish soap than regular soap. I am, however, a totally addicted cloth diaper mom. It is hard not to be when there are so many awesome diapers out there! I started out locally, but as I found more and more Facebook groups, of moms who make and sell their own, I started growing and growing my stash! I don't have all the varieties I'd like, there are some larger names I wish I could try, but I'm pretty happy with what I've got. I find that I still buy a couple of diapers here and there, even though I'm thinking my daughter will be ready to potty train soon. I still breastfeed my youngest. I am amazed at how long our nursing relationship has lasted. I almost gave up when she was just a week old. She was having trouble gaining weight and I caved because I felt like I was starving her (her tummy would actually growl with hunger, almost all day long) and I bought a can of formula. My midwife helped me supplement while building up my milk supply, and it wasn't long before we were back to exclusively breastfeeding. Then we spent two days in the hospital because she was having blue spells (moments where she would stop breathing and her lips would actually go blue/purple). She was diagnosed with reflux and given medication. While in the hospital, we were giving her formula, and then we finished off the bottles when we came home. It was also a time for me to get a bit of a break because breast pumps and I don't mix. Since then, we have been back to breastmilk.
I'm starting to feel like I'm just rambling nonsense. I like to write, but sometimes I just don't have anything important to say! Hopefully I will get more interesting as the days go on.
Sometimes I am great at coming up with ideas for writing projects, but not so great at follow-through. I am hoping to change that with this blog. I don't suspect anybody will really be interested in my randomness, but I am feeling the need to write somewhere, and it just seems like common sense to put it here, where I spend a good portion of my day anyway. My poor paper journal is sorely lacking. I can type for an hour or more and not cramp up, but five minutes with a pen and my hand aches.
I guess that's a little blogging background. Now maybe for some personal stuff. I am 30. I have three wonderful daughters; D will be turning 8 in about 2 weeks, T is 7 and S is 20 months, give or take a few days. I live with my common-law husband, and our 4 furry pets, 2 cats and 2 dogs. We definitely have a full house. I am a stay-at-home-mom (SAHM). My husband is a mechanic/supervisor at a local bowling alley. I sell Avon products, but make no money. My main client is my aunt, AL, and then myself. I get some neat things through there, at a discount, which is kinda cool. I'm hoping that once spring finally arrives I'll have the drive to get out and search for more customers and/or build a team of my own. I am slowly working towards my calling, becoming a doula. For anyone who doesn't know what that is, a doula is a woman who supports a mother (and father if they choose) during labor, birth, and postpartum. There are birth doulas, who usually arrive during early labor, and will stay until about 2 hours postpartum, and there are postpartum doulas, who do not arrive until after baby is born, but they will visit a number of times during a postpartum period, a few times a week, maybe a few times a day, depending on what the doula and family have agreed upon. I want to become a birth doula. My original goal was to become a midwife, but I have since decided that I'm not so sure I can handle the formality of a midwife. There is so much more responsibility there. I want to be present for births, but I prefer the support of the mother aspect of the job.
As for my blog title: Part Time Crunchy, I find that I am sometimes a lazy/cheap cruncher. It would be great to go totally organic, green with everything, etc, but sometimes it really is extra work and/or more expensive! I pay more than double for "green" dish soap than regular soap. I am, however, a totally addicted cloth diaper mom. It is hard not to be when there are so many awesome diapers out there! I started out locally, but as I found more and more Facebook groups, of moms who make and sell their own, I started growing and growing my stash! I don't have all the varieties I'd like, there are some larger names I wish I could try, but I'm pretty happy with what I've got. I find that I still buy a couple of diapers here and there, even though I'm thinking my daughter will be ready to potty train soon. I still breastfeed my youngest. I am amazed at how long our nursing relationship has lasted. I almost gave up when she was just a week old. She was having trouble gaining weight and I caved because I felt like I was starving her (her tummy would actually growl with hunger, almost all day long) and I bought a can of formula. My midwife helped me supplement while building up my milk supply, and it wasn't long before we were back to exclusively breastfeeding. Then we spent two days in the hospital because she was having blue spells (moments where she would stop breathing and her lips would actually go blue/purple). She was diagnosed with reflux and given medication. While in the hospital, we were giving her formula, and then we finished off the bottles when we came home. It was also a time for me to get a bit of a break because breast pumps and I don't mix. Since then, we have been back to breastmilk.
I'm starting to feel like I'm just rambling nonsense. I like to write, but sometimes I just don't have anything important to say! Hopefully I will get more interesting as the days go on.
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