Sunday, January 31, 2010

Another Update on John's Mom and Sister

The last post was an update on John's mom and sister but apparently I understated their injuries some. The accident was fairly severe - John's mom Lorna blacked out for the accident and had to be removed by paramedics. She had a concussion and so felt fairly sick today, as well as being fairly bruised up. John's sister, Jen, was driving and got a deep gash in her foot that went down to the bone. Apparently that gash was from the brake or gas pedal. Jen's new (4 month old) car is now likely totaled. They weren't sure what the condition of the other driver was.

The recovery for Lorna and Jen will likely be about 4-6 weeks, which means that they won't be able to be as helpful to Jess and John while Katelyn remains in the hospital. Lorna and Jen have been very helpful, watching their son Johnny, cleaning the house, and making meals. Pray for a speedy recovery.

Lastly, Katelyn's spinal tap is scheduled for tomorrow. Pray that it will occur and that Katelyn's protein levels will have lowered enough that the surgeons can perform the shunt surgery within the week.

Update on John's Mom and Sister

A quick update on John's mom and sister, who were in an accident last night as they were going to visit Katelyn at the hospital. John's mom broke her collarbone. John's sister had some scratches and apparently needed stitches. Of course, we're glad the accident was not worse but obviously they are both pretty bruised up and in a fair amount of pain. Pray for them as they recover.

Saturday, January 30, 2010

Waiting and Praying

All signs seem to indicate that Katelyn is continuing to recover from her stroke. She lost some weight after birth (which is normal for a newborn) but has already regained it. She continues to eat well. Blood tests have come back normal, which is good but continues to leave the cause of Katelyn's condition to be a mystery. Currently, the doctors say that she will likely be diagnosed with cerebral palsy, although that is an umbrella term that refers to a disorder of motor abilities.

On a sadder note, I just received notice that Katelyn's grandmother and aunt (John's mother and sister) were in a car accident this evening and are being taken to the hospital. I'm completely unsure how bad this accident was but I hope you remember them in prayer, as well.

Thursday, January 28, 2010

News on Katelyn

To start off, I wanted to correct my previous blog in that it was the left side, not the right side, that Katelyn was having weakness and difficulty seeing. The occupational therapist has instructed the nurses to stay on Katelyn's left so that she can start getting better at looking at her surroundings on both sides. The nurses are also trying to lie Katelyn on her left, as this apparently helps strengthen these muscles and increases blood flow. The good news for today was that another occupational therapist tested Katelyn today and found that she had better reaction to pain (a pinch) on her left side today than she did yesterday. The occupational therapist said that she was very surprised at how much improvement there was from yesterday to today!

The other update is that Katelyn's next spinal tap was pushed back and is scheduled for Monday. If Katelyn's protein levels have come down some more, then her surgery to insert the shunt will likely be on Friday, February 5th. This was somewhat disappointing for her parents, who were hoping the surgery would be conducted early next week. Most likely, Katelyn will be able to return home after she recovers from this surgery, which is about 2-4 days post-surgery.

Going to the hospital several times a day is exhausting: Hospital parking is sparse. Entering the NICU requires that you wash your hands for 2 minutes. You must put on a plastic half-robe to hold Katie. A few doctors, nurses, and others working with Katelyn might share some information about Katelyn that you will have to remember. Then you have to be proactive in gathering information. Finally, you are just excited to see Katie and have to deal with the sadness of leaving her there.

Wednesday, January 27, 2010

Day 6

So we are continuing to learn more about Katelyn's condition each day. The neurosurgeon reviewed results of the testing on the CSF fluid that was extracted during the spinal tap. He informed Katelyn's parents that her red blood cells were at a normal, low level. However, her protein levels were somewhat elevated. He is planning to conduct another spinal tap Friday or Saturday to see if the protein levels continue to be elevated. If the protein levels move down then they plan to place the shunt sometime between Monday and Wednesday next week.

Katelyn was also visited by an occupational therapist. The occupational therapist noticed that Katelyn seemed to have weakness on her right side and poor vision in her right visual field. The occupational therapist also said that it was good that Katelyn was able to breast feed because babies with tongues like Katelyn's (with the line at the bottom of the tongue to the bottom of the mouth being longer than average) often have trouble with breast feeding.

Tuesday, January 26, 2010

More Pictures and MRA Results

Here are a few more pictures of our precious little Katelyn. Also, I'm happy to report that the results of the MRA show that the blood is leaving the brain and that there was no evidence of aneurysm or structural problems with the blood vessels. More good news. It seems that the waiting has not been doing any damage and that Katelyn is getting better! The next step is likely going to be putting in a shunt to help drain the cerebrospinal fluid but that will need to wait until the doctors are confident that most of the debris is clear. A shunt that can be cleared of debris is available; however, inserting that type of shunt requires more recovery time.
Pray that Katelyn's brain can continue to recover and that no further damage, such as another stroke, occurs. We can also simply pray for God's will through all of this.

Results of Spinal Tap Drainage

Earlier this afternoon, the doctors decided to go ahead with the lumbar spinal tap. This spinal tap involves draining the cerebrospinal fluid (CSF) through the spinal cord in order to decrease the pressure on the brain and to test the fluid. The doctors hoped to extract 5-10cc of CSF. One of the concerns was whether there was "debris" in the CSF. If there was debris, then a shunt could not be placed because it would become clogged. The good news is that the doctors were able to extract the amount of fluid they were hoping to extract (just under 10cc) which means there will be less of the excess pressure on the brain. The other good news is that the fluid came out clear, with no blood. This means that the doctors can place a shunt if they decide this is the best option. Further tests will be run on the fluid.

More good news! The washer and dryer now work. John was able to clear the drain so that the washer could work well. He also said he gave the dryer a kick and now it's working again. John felt that this was a sign that the power of prayer works.

MRA Test Scheduled

An MRA is scheduled to be conducted this morning. An MRA is similar to an MRI but it looks specifically at the blood vessels. This will be helpful in gathering better detail about Katelyn's stroke. This may also reveal what changes might have happened in the last few days.

Katelyn continues to eat well and her mother remarked that "it's hard to see Katelyn as being sick when she seems so healthy on the outside." May this be a positive indicator of her outcome.

Monday, January 25, 2010

Blood Tests and More

Another day of waiting. While the lumbar spinal tap was originally planned for today, the doctors delayed this because they are apparently unsure whether it will be the most effective treatment to reduce the pressure in Katelyn's brain. The other option is placing a shunt in her skull that would drain the fluid in her brain. The hardest part of this is the fact that the doctors have yet to provide any actual medical treatment for Katelyn - when she is now almost 4 days old. Hopefully, this waiting means that the best medical treatment can be determined but it is certainly hard to wait!

The laboratory has the results of Katelyn's blood tests but are waiting on the results of testing on her parents - Jess and John. The blood tests cover a variety of issues and potential areas of concern. The doctor interpreting the tests stated that infants' blood test results can sometimes be inaccurate and so looking at the parents' blood results can help clarify the results.

Also, a couple of ministry opportunities are available. If anyone knows how to repair a dryer, Jess and John's dryer has quit working and they found out that it would cost at least $100 to make the visit plus parts and labor. What a terrible time for a dryer to stop working! Of course, Jess and John could also use help with doing their laundry in the meanwhile. If you are interested in helping, please do not contact them directly. Instead, please leave a comment here if you are able to help. Be assured there are meal lists being distributed and that meals have already been planned for the next week and a half.

Keep praying for endurance for Jess and John - the trips to the hospital every 3 hours are emotionally and physically taxing. Pray for Katelyn's older brothers: that Johnny does not feel forgotten during this time and for Casey who is unable to visit the NICU and see his sister because he is under 14. Pray that, if medical intervention should be done, that it will be done quickly and that the best course of action can be chosen.

Sunday, January 24, 2010

Ophthamologist Findings

A quick update. The ophthalmologist saw Katelyn tonight. Katelyn's eyes appear healthy and to be functioning appropriately. Also, there were no signs of infection.

Serenity Prayer

Our church's sermon was on God's healing during life's difficult times. They gave us the Serenity Prayer and I think it is relevant to what has been going on with Katelyn.

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
Living one day at a time; Enjoying one moment at a time; accepting hardships as the pathway to peace; Taking as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen.

More Tests and Treatments

There are a few new updates that we would like to share. Overall, the good news is that Katelyn continues to appear healthy and is eating well. Jess visits the NICU every three hours to feed her. Of course, this is a tiring process and has meant a lot of driving back and forth.

The opthamologist will visit Katelyn tonight to check her vision and her retinas. Tomorrow a lumbar spinal tap has been scheduled. The purpose of this tap is to drain some of the cerebrospinal fluid (CSF) that has been creating pressure in her brain - treating her hydrocephalus. Hopefully, this will decrease some of the cranial pressure, otherwise the CSF will have to be drained through the skull using a shunt. The fluid will also be tested to determine if there are any infections present.

Jess and John will be meeting with the neurosurgeon tomorrow to discuss treatment and review her condition. Katelyn has a number of doctors who are working with her: Dr. Choi (pediatric neurosurgeon), Dr. Stea (neurosurgeon), Dr. Gerbani (pediatric neurologist), Dr. Menta (ophthalmologist), Dr. Lu (neonatalologist), and Dr. Nguyen (neonatalologist).

The prognosis is still unclear; however, considering the degree of bleeding in her brain, it is very likely that Katelyn will have some degree of brain damage. The one thing that is certain is that Katelyn will need to be the hospital for a fairly long time. Of course, we can pray for a miraculous healing. We can also pray for proper medical care and for future developments in medical treatment.

Saturday, January 23, 2010

CT Scan

*Please scroll down to read previous posts for full information*
Today brought a few encouraging signs for Jess and John. Katelyn was able to breast feed three times. Jess has received a medical-grade breast pump so that she can have milk ready for the baby. The NICU has also given Jess a small doll that she can place nearby while she uses the pump so that Katelyn can have Jess' scent while she drinks the pumped milk.

Medically, there have also been some promising signs. A CT scan was conducted today (1/23) that found that Katelyn did not have any calcium deposits. Apparently this is associated with hemorrhaging and hydrocephalus and can cause infection. The absence of the calcium deposits also helped rule out a couple types of causes of the stroke. Jess and John have informed me that the doctors have 5 potential causes of the stroke that they are looking to rule out. These include viral infections, blood infections, genetic causes, and a few others (sorry I forget now). Blood work was being done to help check out these possible factors.

Jess was discharged from the hospital around 4:30PM today. She and John plan to have dinner with his brother's family, who will watch their son Johnny tonight when they return to the hospital (no one under 14 is allowed in the hospital). Johnny was very happy to see his mother but seemed to be confused about where his sister was. Being a couple weeks away from his second birthday, it would be a wonderful birthday gift if Katelyn could return home healthy by then.

Please pray for Katelyn, Jess and John, older brothers Johnny and Casey, and all of the family during this difficult time. Pray that the doctors make wise decisions and that all the staff are vigilant to her needs during this critical time. Of course, thank God for the technology that helped discover this problem and that will continue to be useful for her care. Thank you all for the prayers you have already prayed. They are a blessing and an encouragement!

MRI Results

*Please scroll down to read the previous two posts for full details* The MRI results indicated that Katelyn had had a stroke about 2-3 weeks prior to delivery while she was in the womb. The cause remains unknown at this point but the damage is fairly significant. However, the doctor consulted and decided to wait on surgery. As Katelyn seemed to be doing fairly well, he did not want to try risk a procedure. Surgical options are to remove the blood and/or to place a shunt that would help relieve some of the pressure in the brain caused by the blood and increased fluid.

Katelyn will be monitored closely over the coming week to see if her head increases in size. Since increased head size would indicate further bleeding, surgery would need to be conducted immediately if her head shows any signs of growth. Also, nurses in the NICU will be monitoring Katie closely for seizures, breathing problems, and other problems that might arise.

Jess spent an additional night at the hospital (along with John) and they managed to get a few hours of rest. However, being separated from their newborn has been difficult.

The Discovery

The next morning, Katelyn underwent an ultrasound of her head so that they could determine the reason for her large head. This had been conducted without much note. While Jess and John were in the room, the doctor found something that surprised even her. When she returned to give the parents the news, she asked that they sit down, prepping them for the bad news. She shared that she found that Katelyn had a large mass of blood in the ventricles of her brain along with increased fluid in her brain. The technical terms were that she had interventricular hemorrhaging with hydrocephalus. This is extremely rare for full-term babies and is usually associated with traumatic deliveries. The news was bad: her damage was rated as being moderate to severe.

Jess and John immediately began to notify the family of the tragic news - that the baby we had seen early that morning had a very serious condition that could result in serious brain damage. We were all in shock and it certainly took us a minute to fully comprehend what was being said. Jess and John's parents, as well as a few other family members, immediately went to visit them in the hospital. After staying up late the previous night, many of us were already fatigued and the news almost seemed to be too much to really comprehend.

The parents were informed that Katelyn would have an MRI done and that she would likely have surgery that evening, after the neurosurgeon completed the surgery he was conducting at that time. Katelyn had already been transferred to the NICU and was under close watch. She hadn't ate yet (which is normal for the first 24 hours) but this was a good thing if Katie was going to go in for surgery. Katelyn had been choking some and a tube was placed through her nose into her stomach so that fluids could drain. Otherwise, Katie had appeared to still be fairly healthy.

The Birth

While I'm writing this in full awareness of what has happened since her birth, I felt it was important to include some details on how Katelyn was born. Katelyn was due January 27th. Her parents were both very excited when they found out they would be having their first daughter. Her dad, John, had spent countless hours painting, decorating, and preparing her room, while her mom simply glowed whenever she talked about her baby girl's arrival.

Katelyn's progress had been fairly normal throughout gestation. The week prior to her birth, the doctor noticed that she was a little small and said that they would induce the following week if Katelyn had not grown. However, the next week the doctor had found that Katelyn had grown enough that inducing the pregnancy wouldn't be necessary. It turned out, however, that Katelyn decided she wanted out so about 2:00 on January 21st, Jess' water broke and they headed to the hospital.

While her last delivery had flown by in a quick 5 hours, Katelyn took her time. Jess' mom, mother-in-law, sister-in-law (Natalie), and her dad were all in the delivery room with her while she was giving birth. Finally, at 1:08 AM on Friday, January 22nd Katelyn Marie Jeanblanc was born. She weighed 7lbs even and was just over 20 inches long. Her birth was unremarkable and she was behaving like a typical newborn. All of her family was invited in to see her, hold her, and take pictures with her. While noting that her head was certainly large, all signs seemed to indicate that her birth had been a success without incident.