A setback in the casting, and the flu

We went to the foot doctor for Therese's new cast on Thursday.  I was worried about her feet because she had scraped her toes up pretty badly playing outside.  The side of her big toe was very red.  When they cut the cast off, there was a bad wound underneath, where the edge of the cast had cut into her skin.  She had broken off the edge, and the broken edge really dug into her foot.  She never complained about it because she doesn't have much feeling below her knees.  The doctor said it was too risky to put new casts on, especially since she doesn't have feeling and could go septic without feeling it.  So unfortunately we will probably lose all we have gained in two weeks of casting.  Her feet don't heal well and it could be several weeks before we can start casting again.

I was miserable on the long drive, because of my cold, but that night I had the most awful chills and fever.  I felt very sick and dizzy.  Mr. B had to go to work on Friday because it was a a unit training and he was teaching a class.  It took every bit of determination I had, to get the kids fed breakfast and dressed.  When I walked around I was so dizzy.  My mom was able to come and stay for a couple of hours and give the kids their lunch.  I don't think I could have done it.  By that night I had a 103.4 fever.  It was a miserable night and Thomas spent a lot of it crying about his ear hurting. 

Mr. B took Thomas to the urgent care in the morning and he has an ear infection.  There was blood in his ear but it didn't look like it had ruptured. The doctor came in and asked Thomas which ear was hurting, expecting him to point, but Thomas just looked at him and said, "it's the left one."  The doctor asked if he could point out his left ear, and Thomas looked at him as if it were totally obvious, and pointed to his left ear.  I didn't even know he knew that.  It was a funny story.  He is like a little old man in a 4-year-old body sometimes.

I went to urgent care next, which was exhausting because I was so tired and I had to sit in the waiting room a long time.  There are a lot of sick people, apparently.  My heart rate was really high, which I guess explains the roaring in my ears when I walk around.  My fever was 103.7  I didn't take any motrin before going in, so they could see the real me, and they were impressed by it.  They brought me 600 millgrams of motrin and a glass of water right there.  I officially have the flu and it may be wanting to also develop bronchitis.  I thought I had pneumonia because it hurts so badly to breathe, but I guess that is just from coughing so much.  I will spare you the details of the colors I have been coughing up.  We have a whole row of medicines lined up.  Hopefully this gets me on my feet soon.  Catherine's hair hasn't been fixed for 3 days, and today she picked out her own clothes--red corduroy jumper, pink shirt, and bright purple jogging pants underneath. The house has gone even farther downhill and the dirty laundry is really piling up.  Plus I am the enema expert and that hasn't been done the past two days.  That could get really yucky. Thomas took his medicine after lunch and slept all afternoon.  He certainly didn't sleep much last night.  Then just now Mr. B found him asleep on the toilet. 

A rough week after surgery

John did really well his first day home from the hospital, but on Sunday he started throwing up.  He could keep water down but anything else made him turn green immediately.  He also had more trouble with pain, which may be because the surgeon put pain stuff into the incisions, and that had all worn off.  On Monday when he didn't improve Mr. B took him to the ER.  They did a CT and x-ray and the shunt looked great.  They said he probably had a gastrointestinal bug that is going around.  On Tuesday the neurosurgeon called to tell me that his ventricles look even better than they did on Friday.  She thought the nausea could be caused by the fluid draining and said we should try to keep him lying down as much as possible.  We were able to feed him some very bland foods in small quantities, and even though he looked a little ill, he kept it down.  Wednesday was a tough day.  My cold came back with a vengeance so I was feeling miserable and cranky since I had almost been over it.  That was the day that John cried almost all day.  He would get up, his head would hurt, and instead of lying back down he would follow me around the house and cry.  When I say cry, he was like a little cartoon character with his mouth open as wide as it could go, with a continuous wail coming out.  Thursday he was better and was able to eat almost normally.

Home from the hospital

When I got back to the hospital late yesterday afternoon, I found a little boy sitting up playing!  It was so nice to see him acting more like his normal self.  He was very glad that Mommy was back.

He was allowed to eat a normal lunch, but they came and got him for x-ray so he missed his chance for that.  Bryan gave him a z-bar and a banana to tide him over, and ordered the dinner as soon as it started.  It got there soon after I did, and I think he was almost as happy to get his first real meal as he was to see me.  Asparagus is his favorite vegetable so he was happy to see that.  This is the first person I have ever seen who was so thrilled by hospital food.  Of course he loved the airline food too, which is usually pretty nasty in my opinion.

 They bring a parent's tray with the kid's meal, but unlike the kids, the parent cannot choose the menu.  I took a picture of what they brought, since this was obviously not what a vegan mama wanted.  There was a whole orange on the tray, and that was all I took off of it.  I hate the smell of hospital food and when I am in the hospital I usually subsist on yogurt or raw almonds or something else from home.

 John watched some Bob the Builder DVDs and then he said he wanted to take a nap.  He rested for awhile and at one point he dozed off.  He also got some visitors who brought him some fun gifts.  Maybe because I gave the visitors a briefing on how he was doing, he shut down and didn't respond much.  When his godparents were saying goodbye, he started to cry.  I think he was afraid I was leaving too, since I walked him to the door.  He does love his godparents and he tried to give them his family photo album to take home, which is a very special thing to him.

Being in the hospital really triggered a lot of the insecurities that we struggled with early on, and he gets so very scared in a medical setting.  The nurses eventually figured out how to tease him and get him to interact with him, but the norm whenever anyone came in the room was for him to just freeze and become almost non-responsive.  He told me, "I no want you to go."  I told him I was going to sleep right next to him.  This is how we spent a lot of the night.  He could not go to sleep unless I was holding his hand, so he could be absolutely sure I was there.

 I found that it is even more difficult to get sleep in the hospital when you are a parent than when you are a patient.  For one thing, you don't have any drugs to help you, and for another, that plastic chair that folded into a bed-like shape was really uncomfortable.  It sloped downhill and had gaps in the cushions in just the wrong spots, not to mention it had a stained vinyl covering that made me stick to it with sweat.  That isn't even to mention that they came in every two hours to do a vitals and do a neuro assessment on John, which made him an unhappy little man.  The machines beeped and there was a child in a room near ours that screamed and cried for most of the night.  It was quiet from about 2-4 AM, but that was the only time.  Hearing other kids crying made John very nervous.  He figured they must be hurting kids and he would be next.  It wasn't quiet in the daytime either, since we were across the hall from a sort of playroom.  It was a handy place for parents from the whole floor to bring crying kids to try to distract them.  Our windows overlooked where the helicopters were coming in for a landing.  In spite of all that, we did get a few naps in, and John was pretty happy when we woke up.

Since we knew they would get him for a CT and x-rays any time after 7 AM, I gave him a banana and some soy yogurt, and he was very happy about it.  When no one came for us, I ordered him a breakfast tray, which he was very enthusiastic about.

I managed to wash my face and was glad I had thrown a clean shirt in my bag, since I felt and looked like someone who had been sweating on some vinyl cushions for too long.  I even put on some makeup, and John said, "You so pretty, Mama."  At least someone appreciated my efforts to freshen up.  I wore a necklace that he loves, made of paper beads from Uganda.  (You can get your own here.)

Right after breakfast, before we could brush our teeth, a transport guy came with a wheelchair to take John to get his scans.  He hates the CT and had his usual reaction.  He cooperated but stared straight ahead and refused to talk.  He was much the same at x-ray, but was slightly cheered up by them giving him 3 stickers.  

Back in the room he watched some TV and then the neurosurgeon came in to tell us that she had looked at the scans and everything looked great.  She said if he was OK after getting up and walking around, we could go home.  The nurse took out all his IVs and took off the monitors.  She figured out that if she asked him to help her, he would snap out of his shutdown and start getting happy.  He was pretty cute and funny, and he was really glad to get out of bed.  He roamed around investigating all the equipment and then entertained himself a long time pushing the buttons on the bed.  Then he put the stuffed monkey his godparents gave him yesterday on the bed and gave him rides "in the sky", and back down.  I didn't realize hospital beds went that high.  Maybe it comes in handy if they have a doctor who is a giant.  If that bed doesn't work next time they try to use it, it is because a 4-year-old boy wore out the buttons.

Mr. B was on his long drive to take Therese for her second set of casts, so we called him to tell him we were getting out on parole.  John talked to Daddy and I took a picture of it.  He especially wanted to talk to Therese and Fermin, so they all said "Hi" to each other for awhile. Literally.  That was about all they said, but each kid said it to each of the other ones, and that seemed to be what they needed at the time.

We got home about 1:00, hungry and sleepy, so we had a quick lunch and naps. The cold I have been fighting got worse over the last few days, so it will take me awhile to get this house back to where it should be.  Right now it looks like some really messy people live here.  The Christmas tree is still in the middle of the living room waiting to be taken down, there are three cases of catheters sitting in the entryway, and just tons of messes including the usual accumulation of yellow liquid in the grout around the toilet.  Hopefully we can dig out of the mess a little while resting up too, but the important thing is that our family is all together again under one roof, and our little John has the pressure in his head relieved.

John's Surgery

We got up very early today, at the unearthly hour of 3 AM.  I should say that I got up at 3.  Mr. B, unlike me, didn't need to get up that early and blow-dry his hair.  We woke John up at 4:50, and he was sweet and cheerful as he always is in the morning.  I wish I were that cheerful that early in the morning.  We left for the hospital and at the end of the block I realized I was still wearing my house shoes.  At least I realized that before we had gotten farther from home.  We checked in at the hospital, and as usual, waited.  I've come to realize that hospitals are like travel.  You hurry up, then wait.  We went to a pre-op room and got John's vital signs and told them what cough medicine he is taking.  I got him changed into his tired tiger hospital jammies.  He thought they were  pretty cool but he was worried that his pants kept falling down. 

John, being brave and cheerful as we wait:

Then he decided it would be better if he sat on Mommy's lap.

Maybe it would be a good idea to examine the room and figure out how to operate this funny bed.

A nice young woman from the Child Life department came and entertained him by blowing bubbles.  If you read about our ER experience, you will understand why I was relieved that he was standing on the floor for the bubbles.  While John popped bubbles and then took a turn blowing them, the anesthesiologist, ER nurse, neurosurgeon, and neurosurgery resident, all came in to talk to us.  The neurosurgeon said she had thought it over and she should go ahead and take out the plumbing from the old shunt.  The drainage tube in his tummy is stuck and has pulled the skin up as he grew.  She felt that could continue to pull the old shunt and stress the vein that is stuck to it.

I went with John into the OR holding area.  He said, "no pokes!"  I told him they would wait until he smelled the bubble gum air before they did the pokes, and he was visibly relieved.  He thought I looked silly in my cap and gown and he was moved into the OR.  I stood by him while they got him to sleep.  He didn't like being in the OR at all and definitely wanted mommy near him.  When he was asleep we pried the bubble container out of his hand.  I got back to the waiting room at about 7:30, and started working on my cross-stitching.  We got a phone call from the neurosurgical resident at 9:00, telling us he was doing well and that they were almost done.  I got another call at 9:45 saying they should be done in 10 minutes.  About 20 minutes later the neurosurgeon came to talk to us.  She said that the release of pressure when the new shunt was put in was like a jet.  She said the shunt should make a huge difference in his balance and hopefully reduce the huge pockets of fluid in his spinal cord.

A little after 10 I went back to be with my little guy.  When he saw me, he lost it and cried.  He was so forlorn, waking up and not knowing where he was.  He also said his head hurt.  He got some pain meds and I petted his head and held his hand and he calmed down.  He also got some juice which he enjoyed very much.  We got moved to his room by about 11.  He was really shut down and scared, and when he turned his head he would cry with pain.  He really didn't want Mommy to leave and it was so hard to do.  I waited until he and Papa were settled in, and they were bringing him juice and a popsicle.  He was starting to cry when I said I was going to leave, but I suggested he could watch TV and that helped him calm down.  

He looked so tiny in his hospital bed.  I tucked some of his favorite stuffed animals in with him.

Here is how he looked right when I left, eagerly waiting for a popsicle, with Papa on duty next to him.

I will feed everyone lunch, try to catch a nap, work on the laundry, and hopefully get the lunches packed for the Dallas trip tomorrow.  Bryan will be taking Therese for her next set of casts, which she is saying will be green this time.  I will be at the hospital overnight and until he is released.  That depends on the CT tomorrow to check the shunt, and how well he is doing after the drastic change in the pressure in his head.  Life is so busy.  Hopefully I will be able to get the kids ready for bed before I go back.  I'm feeling a little woozy due to the combination of 3 hours of sleep and a dose of cold medicine.  The kids have been coughing on me for weeks and have finally shared the fun.

Therese in casts and surgery for John

On Friday we saw the Ponsetti doctor about Therese's clubbed feet.  Although he had not casted a child with spina bifida before, he said her feet were pretty flexible for her age and that he thought we have a good chance of success.  We will have to get her casts changed every week, which means 7 hours of driving, and on the third cast we should know if it is working or not.  They put the first cast on that day, and life for her has certainly slowed down.  She was our speedy knee-walker, but now can barely drag herself around the house on her tushie, or pulling herself along on her tummy.  She can no longer get into her chair at the table by herself, or up on the step stool to wash her hands and brush her teeth on her own.  She also cannot have a bath.  She was very proud of them the first day, and excited that she had pink fiberglass on the outside, which they let her choose.  She said she wanted to go to "my China," meaning the orphanage, and show her friends that she is getting her feet fixed.  She acted much more subdued than usual once the reality of her casts sunk in.  The weight and awkwardness are going to be very hard to live with for the next few months, but we know the end result is well worth it.  We just have to watch out when we pick her up, because those casts really hurt if they hit you, or someone standing below, and we are trying to keep the casts from scratching up all the laminate floors.  She didn't like the old pair of Mr. B's tube socks we tried the first day.  They were not pretty enough for a princess.  She liked the bright leggings I tried next, but they last only a few hours before they are shredded by the friction.  The next plan is duct tape.

Here is Therese with her pink casts.  These things weigh as much as she does.

Since she didn't like the tube socks, here are the bumblebee babylegs that she found much more fashionable.

The day before we left, we were talking about it at breakfast, and she said, "I no have little feet?  I have big feet like Fermin?"  It was very funny.  Fermin proudly has the biggest feet of all the kids in the family and he held one up for admiration.  She is so excited about getting her feet so that she can wear shoes.  I'm trying to remind her of that when she is annoyed at the casts.  She was really worried about how she would wash her hair, which she loves to do. I promised we would put her on the counter in the bathroom and wash it in the sink.

John will have a new shunt put in on this Thursday, the 17th.  We would appreciate prayers for him.  It is hard to split the family up to cover the hospital, the home, and the trip for the 2nd set of casts.  If he does well he should be home Friday afternoon.  I tried to explain the surgery and how the doctor was going to help his head not hurt anymore.  He was worried at first about whether they would cut off his head, in typical little boy fashion, then he said he would have "a little tiny head, like baby."  He told me over and over, "I be brave, I not cry."  He even make his big brothers laugh by clowning around and sawing on his own head with his hand.

Yesterday we went to get the pre-op paperwork and labs and had a very traumatic afternoon.  They just couldn't get a blood draw on him. I lost track of how many times he got stuck, in both arms, both hands, and both legs. Even though he talked all the way there about how brave he was, and that he wasn't going to cry, that lasted only for the first poke with the needle.  Three different nurses tried, then they sent for an anesthesiologist who poked him many more times before giving up. Twice they got a tiny bit but the veins blew. So they are going to wait and draw the labs after he is asleep on Thursday. One of the nurses said that she has veins like that too, and that she has spina bifida also.  His veins are also hidden under a layer of insulation, which makes them very hard to see at all.  Every time they tried a round, and gave up, he would stop screaming and crying and announce, "I ready to go home."  It was a hard several hours and John was SO happy when I said we were going home, once they contacted the neurosurgeon and got permission to postpone the blood draw until right before surgery.  He has a lot of needle marks and bruises, which he has enjoyed showing to everyone.  At least if you get hurt, you get to show your wounds off.

Sibling squabbles

This morning, to aggravate his sister, Jose told her that the police were going to arrest her.  She wailed, "Mommy, Jose said that the police will get me!"  Mommy, feeling cranky as we try to get ready to make it to violin lessons on time: "Don't listen to him. Jose doesn't know the future, he isn't God."  Jose, who was still standing nearby, said, "Of course I'm not God!  Do I have a beard?"

Neurosurgery

Today we saw the neurosurgeon to get the MRI results. It was a long day because Mr. B. is sick, and I had to take John to the pediatrician.  He has been coughing horribly for over a week and I wanted to make sure he didn't have bronchitis or something.  He got a clean bill of health except the cough.  I rushed home, gulped down some lunch, and off we went to the next appointment.  Mr. B. was well enough to go, but I drove and he didn't look very lively.  We were there for several hours, going over all the MRIs for both kids.

Therese is the easy one.  She has no hydrocephalus and for now we will just do yearly MRIs.  This one will be our baseline.  The neurosurgeon said that kids with spina bifida all look like they have tethered cords, so unless she has symptoms of it getting worse as she grows, we will leave it alone and monitor it.  She does have scoliosis, which we knew, and Chiari Malformation, which we didn't.  She was swinging from the handle of her stroller and then later managed to fall out when we were looking at the MRIs.  Notice that she didn't fall while doing tricks, but while she was sitting in the stroller.  Now she has a big bump and scrape right between her eyes.  There is no stopping that girl.  I need to get a video of her gymnastic act with the stroller.  It is pretty funny, especially when she says, "wheeeeee!"

John's shunt is basically useless and they are going to put in a new one as soon as possible, which should be next week.  His whole spinal cord is divided with fluid pockets and his ventricles in his head are enormous.  The shunt he got in China as a baby has been blocked with scar tissue and is barely even in the ventricle anymore.  The main vein in that area has stuck to the shunt probe and is pulled off to one side.  Because of that, they will just put in a completely new shunt on the other side.  It should be a fairly short and straightforward surgery, and if all goes well he will only stay one night in the hospital.  The neurosurgeon said that it was a very good thing we insisted on going forward with the MRI in spite of his cough.  I'm so glad we got him home when we did, so he could have this surgery here in the US, and with a family to be with him.  Hopefully a new shunt will help his balance improve.  He was crying with frustration a few weeks ago when he tried to kick a soccer ball, and fell down almost every time.  He is such a sweet guy and we want him to have the best functionality he can.

We have an appointment on Wednesday at urology for Therese, and then on Friday we will drive out of state to get a second opinion on her feet, so this week is even busier than last week.  January is a very busy and stressful month so far, and at least for the next few weeks it is certainly not going to slow down.  Therese may be in casts after we meet the Ponsetti-trained orthopedist on Friday, and that could make her a very frustrated little girl.  I'm sure she will figure out how to get around, in spite of casts from her toes to her hips.  We have a lot of medical decisions to make so we would appreciate prayers for wisdom and for everything to go well, especially for John Francis's surgery.

MRIs and New Year's

Last week we celebrated New Year's, Mr B.'s birthday, and John and Therese had the full series of MRIs.  We went to Mass on New Year's day, since it is the Octave of Christmas and the celebration of the circumcision of Our Lord in the old calendar.  Mr. B. and I are usually in bed sleeping when the new year comes in.  I remember the year I was pregnant with Thomas, about the size of a manatee at that point, and I was awakened by someone running up and down the block at midnight yelling, "whoo-eeeee!"  If I had gotten my hands on whomever that was, they would have never, ever done that again in the same county where a miserably pregnant mommy was trying to sleep.  But, I digress.  This year Mr. B. and I happened to be awake for the new year because we got into an interesting discussion about pre-Vatican II Bible translations.  It was fascinating and we found some interesting articles online about the old Confraternity edition.  No one ran around screaming outside at Midnight, and we went to sleep soon after.  

On January 2nd, John had his MRI series.  They almost refused to do them since he had to be sedated, and he had a bad, wet, cough.  I told them we wanted to do it anyway, and they had to explain all the risks, that he could get pneumonia, and that if he was wheezy when he came out from under the anesthesia that they would have to admit him to the hospital.  We waited two months for that MRI and I was so concerned about his head that I told them we were willing to risk it, and Mr. B. agreed with me, so they did.  John was very sweet and cooperative, but he was clearly nervous when I carried him in to the MRI machine.  He wouldn't let them put the mask on him but agreed that it would be OK if Mommy held it.  So I did, and he got very heavy and sleepy, and I laid him down.  Mr. B. and I didn't want to sit in the Radiology waiting room, a windowless room with unyielding chairs where there are signs about no food or drink.  We found a comfy couch near some big windows near one of the hospital entrances, and settled down to wait.  I did some cross-stitching and some laps up a nearby stairway to stay awake.  Mr. B. got some coffee and we ate z-bars, my favorite travel food.  (I took a whole case of them to China with me!)  About 3 hours later we went back to see our groggy little boy.  He smiled at everyone, and especially at the popsicle the nurse brought him.  He couldn't grab it because of the IV but he opened his mouth wide for me to feed it to him.  I thought his nurse was going to try to take him home, she thought he was so sweet.  When someone brought him a toy, and said, "here you are, baby," he opened his eyes wider and said, "I not a baby!"  They warned us not to leave him unsupervised the rest of the day, and they weren't kidding.  He couldn't even walk across the room by himself for several hours.  His balance isn't very good on a normal day, and with anesthesia in his system he was a hazard to himself.  He didn't wheeze or get pneumonia, but his cough got worse and stayed that way.

On January 4th, Therese had her MRI series.  We felt like old hands at this, got her checked in, I settled her on the machine and they gave her some gas.  She is so tiny it didn't take much.  She looked so very small lying there asleep with her little feet bent inward.  We found our same couch empty and did the same thing as before, including the same flavor of z-bars.  She woke up very quickly from the anesthetic but she didn't feel very good.  I think she felt sick but she answered no to every question the nurse or Mama and Papa asked her.  Her little mouth was puckered out in a pouty face.  The nurse was afraid to let her go until we could see whether she would be sick or not, and finally decided to offer her food.  When she saw a graham cracker being unwrapped, she perked up right away.  She was groggy and sleepy but didn't have much of a balance issue once we left.  All those days of going to bed late and getting up at 5 AM wore me out.  I had to take a nap, but I don't know if the kids did anything but giggle and whisper in their beds during naptime.  I was too soundly asleep to hear it.

Christmas Eve and Christmas Day, 2012

Because we were observing Advent as best we could, we didn't put up our tree until Christmas Eve.  It was very exciting for the kids on Christmas Eve.  I was cooking festive food, Papa was supervising the tree decorating, and there was an approaching winter storm to add even more excitement.

My goofy kids decorating the tree:

Therese doesn't let her feet slow her down and was able to help decorate by getting on a step stool on her knees so she could reach more branches.

The kids thought they should use whatever was in the plastic storage bins, so Jose tried to festoon the tree with a Christmas napkin.

Our family that live close by came over for the family gift exchange.  We tried to get a picture of the kids by the tree, but they were in various stages of silliness.  This was the best one:

Excitement builds as the presents are sorted out.

Jose had one of the biggest presents and he was ready to rip into it first.

Thomas showing his happiness by giving us a good look at his fine tonsils.

Our two newest family members were very excited.  They both kept saying, "Thisa mine?!" as each present was handed out.  They were thrilled by everything!

I love my little sister.  Yes, I was unable to resist using the enema box.  And my sis is a great sport--she opened it, held it up, and said, "just what I needed!"  Inside was a very special scarf and bracelet from Guatemala, selected with help from her Mayan nephews.

After late naps and a very late dinner, we got dressed to go to Midnight Mass.  In all my years of being Catholic this is the first time we went to a Midnight Mass that actually started at midnight.  The kids all looked great dressed up but they were so excited that our picture attempts didn't turn out very well.

I did get some cute ones of the kids individually.  Here is our little Christmas girl.  You can see the owie she got on the plasmacar on her birthday.  It matches her Christmas dress.  Catherine wore this dress when she was 3 and it has a cute hat to match, but Therese's head is so small the hat completely covered her head.

I thought her excited face was very funny.  She is such a happy, silly little girl.

 

John said, "I like it, this one dress," about his new shirt and corduroy pants.  He thinks all clothes can be called "dress" or "jacket".  It makes sense when you think about it.  We always say it is time to get dressed, so he just uses the noun that matches the verb.

We drove home from Christmas Mass in the wee hours of Christmas morning, in a wintery mix of sleet.  We slept in, had cinnamon rolls, and then opened our family presents together.