Archive for September, 2004

 

follow-up with ortho surgeon (Stanton)

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The next five days were spent trying to get Leah to eat.  She was still resisting any type of feeding that we tried.  Every now and then she would take a little sip from a cup, but it wasn’t very encouraging.  At least not to me.  My mother spent most of her time trying to coax her to take something.  My time was spent scrounging for food, drinks and snacks.  When I wasn’t trying to rest, Leah wanted me to hold her most of the time.  She has never been much of one for wanting to cuddle with me and sleep on my shoulder, but that’s what she wanted now.  I was happy to oblige but it was tiresome.

 

We were without water and electricity for about 3 or 4 days.  I was beginning to lose my cool and starting to get cranky.  I don’t handle heat very well and since we were in ICU, we couldn’t open the doors to the regular floor/hallway to get some air flow.  And I certainly don’t handle cramped quarters very well, either.  My mother, on the other hand, looked cool as a cucumber the whole time.  She is a typical southern belle and always looks refreshed.  I always felt like a damp leaf barely hanging on to a tree limb.  Being cut off from the outside world was stressful too.  We could only get one local station on the TV and that didn’t include the town I lived in so we had no idea how my community had come out of the hurricane.  We couldn’t find any staff members that lived in my direction.  Trying to make phone calls was next to useless too.

 

On September 20, I was able to drive home and check out my house.  I had very little damage…  just my roof and my fence.  (See pictures here.)  Of course, the food in my refrigerator was spoiled so my house smelled pretty bad.  The roof damage wasn’t bad enough to cause leaks, just a few missing shingles.  We had drinking water and electricity, but no TV cable.  Apparently, none of my neighbors had any severe damage either.  I returned to the hospital, but it was very late in the evening and I had to stop at a check point because it was after curfew.  It took what was normally a 45 minute drive almost 2 hours to get to my house.

 

On the 12th day after Leah’s surgery, we were finally moved to a regular room in the pediatric ward.  And wouldn’t you know it, that’s when she finally took a bottle and started drinking about 2-3 oz at a time.  I was elated.  That meant I wasn’t going to have to spend weeks or months trying to coax her into taking a bottle.  She still wouldn’t sleep in the crib, so we spent most of the time holding her and sleeping in the recliner chair.

 

Finally, on the 15th day after her surgery, the plastic surgeon said we could go home.  She still wasn’t drinking a full 4 oz bottle at feeding times, but she wasn’t resisting it either.  What a relief.  I am so glad this is all over.  I know my mother was relieved too.  This meant she could go home and get away from her cranky daughter and grand-daughter. 

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Our room was on an outside wall, and the nurses moved us to an interior courtyard room.  Leah is fully awake, but all she wants to do is sleep in my arms.  She gingerly touches her lips, but she won’t open her mouth.  The plastic surgeon said we could start trying to feed her formula through a tube and a syringe.  Leah pitched a fit.  She didn’t want me anywhere near her mouth.  It would take my mother and a nurse to help hold her still while I tried to feed little drops into her mouth.  It was extremely frustrating and all I wound up doing was making my back hurt from leaning over the side of the crib.   The plastic surgeon said we could try anything like sugar water, or even a little bit of pudding.  Maybe even trying to let her sip from a cup.  We tried it all.  Nothing worked.  She just absolutely refused to take anything by mouth.  Of course, for me, I was reliving the first days when we came home from the hospital and my mind was seeing another couple of months of fighting with her over a bottle.  Just when we had finally gotten a good routine with the bottles before this surgery.  I was at my wit’s end.

 

That evening, we got Leah to sleep about 9 pm and we were able to get her in the crib.  I was asleep in the recliner and my mother fell asleep on the little sofa bed.  All of a sudden, a couple of the nurses rushed in at 4 am and told us that they had to move us in the hallway immediately.  We knew the Hurricane was coming, but we were so exhausted, we slept through the beginning of it.  The electricity had already gone out and the hospital was on emergency power.  There were several tornados in the near vicinity of the hospital, and we heard that another hospital and a shelter had sustained damage.  We sat out in the hallway until about 9 am the following morning.

 

At one point during this five hours, another family lost their baby.  I know it hit the PICU staff very hard.  Here we all are wondering if our homes were being destroyed by a Hurricane, which was stressful enough, when a young family was struggling for the life of their baby.  Just thinking about it now just brings sobs to my throat.  We were stuck out in the hallway and provided what little privacy we could to the family.

 

After the initial emotional heartbreak was over and the cleanup had been finished, the PICU calmed down again.  By that time, we realized we were hungry and wondering if there would be food available.  We finally saw another patient’s family member walk by with a plate of food.  He said the cafeteria was open and had a hot breakfast for $3.00 a plate.  Another couple in the room across the hall from us went downstairs and brought a plate back for me and my mother.

 

I ventured out later in the day.  The hallways outside the PICU were wet, I guess the water leaked through the windows and the stairways were a mess.  The emergency elevators were not working yet.  Downstairs was in a terrible mess too.  We had heard that the basement had flooded.  The first floor of the hospital was a shelter for women in late stages of pregnancy, and for the families of the staff.  And, of course, the bathrooms were in a terrible state.  I was very thankful we had a private room with a private bathroom.  Overall, the professionalism of the staff at the hospital was excellent.  In the aftermath of the hurricane, they began to return the hospital to working order in a timely and efficient manner.  The cleanup began immediately and hot meals were provided.  There was a little bit of confusion about patient’s family members paying for food or not paying for food, but it didn’t matter.  We were just grateful for hot food.  I went outside and saw that the hospital hadn’t suffered too badly.  Some parts of the outside wall was missing and trees and signs were down.  The cars in the parking buildings appeared to be undamaged for the most part.  Go here to see pictures.

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The muscle relaxer med was stopped around 10:30 am.  The nurse would have to manually bag her from that point until they rolled her down to the OR, probably about 30 minutes.

 

The anesthesiologist came out and took over bagging her outside the OR.  I have to comment that we are so grateful for the anesthesiologist.  He has taken great care to be very involved from the very beginning in her care.  He has done everything possible to make sure sue is taken care of properly.

 

We went into the surgical waiting room and after about 20 minutes, the ENT surgeon came out and told us that Leah was waking nicely and that she looks very good.  The swelling is all gone.  He recommended that we not do the trach at this time.  However, he would still do it, if I wanted to, but both he and the anesthesiologist agreed that it was no longer required.  He did comment that he had not spoken to the plastic surgeon….if we decided to not do the trach and something happened, the PS would have their hides.  The surgeon also informed us that he would not be on call over the next several days because he would be in lockdown at the naval base because of the oncoming hurricane.  I told the surgeon to go ahead and remove the tube, but not do the trach.  He came back 15 minutes later, said it came out like a dream and she was doing fine.  He looked very relieved that it had all turned out all right.  She would be returned to the PICU for a few days, then moved to the pediatric section.

 

The recovery room nurse said the anesthesiologist wanted her to be monitored for an hour before moving her back to PICU.  She had started to wake up and was a little fussy, moving her arms and legs slightly.  She gave her a little something and she went back to sleep.  She did move her mouth a little bit, but isn’t making any sounds and she isn’t opening it.  She is still on oxygen through a nose tube.

 

She was returned to her room in the PICU and we finally got to hold her after everything settled down.  In the mean time, Hurricane Ivan is barreling our way.

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The paralytic was turned off at about 6 am.  It took about an hour and a half for her to start waking up.  The pediatric ENT surgeon came by around 9 am.  He was a little surprised at how swollen she still was.  He felt that it was best to start more steroids and diuretics to reduce the swelling and wait until tomorrow to do the extubation.  He still thinks the tracheotomy is the best way to go.

 

Unfortunately, we are under a Hurricane Watch (Ivan) and the doctor is concerned about removing the tube before the storm hits our area.

 

Leah is starting to wake up, but she isn’t thrashing about like she was before.  One of the ICU doctors came in and examined her.  He said there is a leak in the airway, which is a good sign.  That means she is trying to breathe on her own.  He wants her rotated more often, and on her tummy.  On her tummy is not possible.  At one point, they had her laying fully on her side and she rolled over on to her back.  She was oozing a little from the mouth and a little bit of thin blood came out.  This scared me because I was afraid the movement of her rolling on her back had caused the tube to bump the sutures.  But all was well.

 

I can tell that she is responding to the sound of my voice and I can see tears coming out of her eyes.  The nurse said that her heart rate jumped up when I talked to her.  It makes me want to cry now just thinking about it, and this is 3 months later.

 

The respiratory therapist says she is bubbling pretty good, which means there is a leak in the airway (like the doctor said before).  This is a good thing because she is trying to breathe on her own over the machine.

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 51 weeks old

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The next day was more of the same.  Trying to keep her sedated and still.  The respiratory therapist decided to change to a smaller tubing for more airflow efficiency and changed the tape and cleaned her up a little.  Her face and hands are very swollen.  The doctor decided to insert an IV catheter in her leg for a more stable IV line for bloodwork and meds.  I think he had a little difficulty inserting the lines, and it turned out it wasn’t really worth the effort.  One of the lines was blocked and some of the nurses had trouble venting the lines.

 

I decided to call the orthopedic surgeon’s office and advise the doctor that I was very concerned about her toes in the cast.  I felt they were getting a little swollen.  Later, the doctor’s nurse’s came by and split the cast on both sides to allow a little more room.

 

Around 10:30 am, the ICU doctor advised us that a tracheotomy was being recommended, especially through the Winter.  He had discussed it with the anesthesiologist and the plastic surgeon and they all agreed this was a wise course to take.  However, he was having difficulty reaching the pediatric ENT surgeon who would have the final say.  Turned out, the ENT surgeon was on Naval reserve duty for the weekend.  When they finally got in touch with him late that evening, he recommended keeping her fully sedated on a paralytic through the weekend and he would examine her on Monday in preparation to remove the tube and insert a trach.  The purpose of the trach would be to assist in growth of the airway and recovery from all the swelling.

 

If we went home, and she had an emergency with her airway, and had to be intubated, there are only three locations that are capable of handling it…   Pensacola, Gainesville, Atlanta, and Birmingham.  Unfortunately, I live approximately 60 miles away from Pensacola and she would have to be life-flighted from the local hospital.  The size and position of her airway is very serious and could be a life and death situation if she cannot be intubated.

 

During all of this, the plastic surgeon was having a “hypertension” attack.  He was very disturbed that this had happened to one of his patients.  He told my mother that if anything happened to “this child”, he would never get over it.  I think this has aged him another 10 years.

 

After the continuous drip of the muscle relaxer and paralytic was started, my mother and I decided to go home at night, at least for the next two nights.  We no longer have to monitor her very movement after the new meds took effect.

 

Her IV fluid was changed from saline to Total Parenteral Nutrition (TPN).  All vital signs are good and the monitor isn’t pinging when they suction the tubes.

 

Her hands are extremely puffy, red and warm to the touch, especially the left one.  We decided to elevate her hands.  She is also being rotated often.  Her temperature is fluctuating slightly.

 

The plastic surgeon has been by several times and feels that the sutures look good and there doesn’t appear to be any additional bleeding.

 

A steriod will be started to help reduce swelling in preparation for the procedure on September 13, 2004.

 

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We arrived at the hospital the night before for Leah’s cleft palate repair surgery.  I was still nervous and stressing over the Malignant Hyperthermia issue.  My mother and I tried to get her to sleep in the crib, but she wasn’t having any of it.  We took turns sitting up holding her all night.  She got a little sleep, I think, but she wasn’t happy if we moved her at all.

 

She was taken back for the surgery a little after 8 am.  The nurse called around 10 am and said the surgery started late around 9:30.  A few minutes after that, the anesthesiologist (the same one from her surgery in July) came out and told us that they had a problem with intubating her for the surgery.  It took a team of five anesthesiologists a total of 90 minutes to insert the tube down her airway.  The reason is because her airway is very small and in an anterior position.  After the intubation, her airway was swollen.  The tube will probably stay in overnight in case there are difficulties, and she will be on a ventilator.  The concern is that if the tube is removed from the airway immediately after surgery, and there are breathing problems later, they won’t be able to get another tube down.  And, of course, all of this was complicated by her small mouth.  The anesthesiologist has never seen a case like this in all of his years of practice.  It has been more challenging than he thought it would be.

 

At about 11 am, the plastic surgeon came out and told us the repair went well.  She should stay in arm restraints for two weeks, and must not be allowed to put anything in her mouth.  Unfortunately, because of the airway problem, she will have to remain in the ICU longer than anticipated.  The surgeon will be relying on the intensivist care team in the ICU to monitor her closely and advise him if there are problems with fresh bleeding around the sutures.  The team must be careful not to touch the nasal passage or the roof of her mouth so as not to disturb the fragility of the repair.

 

I was finally allowed to go back to see her in the recovery room.  I have to admit, I wasn’t prepared to see her with the tube in her mouth.  She looked so pale and it was about all I could do not to snatch her up and hold her in my arms.  Unfortunately, I was not able to because her head needed to be kept as still as possible because of the tube.  The surgeon cautioned that it should not be moved around and not disturb the sutures.  Her blood pressure and blood gases were a little low, but her oxygen sats were good.  She was sedated and on pain medication.

 

She was moved to the Pediatric Intensive Care Unit (PICU).  Her meds were changed in the hopes of raising her blood pressure.  She was considered to be in “critical care status”.  About 4 pm, she started to wake up and was thrashing her head, and arms and legs.  She pulled the vent tube out of her the holder in her mouth..  Fortunately, the doctor was nearby.  Not a big deal, but it was enough to scare me to death.  The sedation they had her on was a temporary sedation and she woke up every couple of hours, so we had to monitor her very carefully and try to keep her still until the next dose of medication took effect.  She was also oozing blood and fluids from her mouth and nose.  Normally, a child with a cleft repair would be swallowing any fluids, but in Leah’s case, it was all coming out her nose and mouth.  When the respiratory therapist tried to suction out the tube, her heart rate and respiratory drops.  Paralytic medication was recommended, but the doctor wasn’t prepared to start it yet.

 

The orthopedic surgeon came by.  She had heard that Leah was in ICU and came by to check on her.  She had forgotten that I had told her Leah would be having her cleft palate surgery.  She was concerned about the swelling in Leah’s arms and legs because she was still wearing a cast from her foot surgery.  She advised us to monitor it very carefully.

 

She started resting more comfortably around 8 pm.  She does fine, so long as she isn’t stimulated.  She rouses a little when she hears my voice or my mother’s voice.  Her blood gases are better and a chest x-ray was taken, which was okay.  At one point, she tried to open her eyes and reached her arms out for me.  It was heartbreaking because I couldn’t pick her up.  I think it got to the nurse too. 

 

There were several episodes of the monitors going off, but there was nothing serious.  Mostly when the nurses or therapist would try to suction the tube, or move her, and then she would get upset.  My mother and I decided to take turns sitting with her.  We weren’t allowed to sleep in the room, but one of us could sit in a chair, and the other would sleep in the family waiting room.

 

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appointment with attorney

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pre-exam pediatrician

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