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Saturday morning Jonatham woke up to a very severe rash again. This time worse that before. His symptoms, including fever and nausea continued to worsen despite medicine, so by noon the doctors told me to take him to the ER to be evaluated there. As we were leaving the house to go to the ER, Jonathan felt very ill and began to vomit. The day before he almost passed out during one of his tests, so I decided to call the ambulance rather than risking him fainting in the car. At the ER, they repeated all the tests done the day before and in the evening we were transfer to the hospital for admission. Later last night the doctor came and explained that Jonathan’s white blood cell count was getting back up, but now his liver was showing abnormal numbers. They ordered an ultrasound. The doctor decided to put Jonathan back on Vancomycin, the medication that had caused the first reaction. We expressed concern, but he felt it was important to keep him covered for the osteomyelitis. He even gave two antihistamines along with the drug to reduce the possibility of a reaction. It didn’t work. Only a few minutes after the infusion began, Jonathan’s started itching and burning all over his body. His rash flared to bright red and got very hot, even to the touch. Not only was he extremely uncomfortable but he began to swell, so they stopped Vancomycin. A very unrestful night with high fever and much discomfort followed.
This morning the rash had completely covered his body. Literally from head to toe. They keep administering antihistamines, but nothing has helped much.
In the midst of all of that, they took Jonathan to have an ultrasound of his liver that actually revealed that his liver was ok, but showed a small cyst in his pancreas. Really? More bumps?
An Infectious Diseases doctor and a hospitalist came before noon and shed some light on the past 30 hours. They think the rash is definitely an intolerance to antibiotics. The most difficult part of this is that there are four main antibiotics usually prescribed for the specific type of infection Jonathan has. He is now allergic to all of them. The better part of it is that there are some other options. Not your first option, but still good and hopefully effective. They decided to start the new antibiotic and so far there is no apparent reaction. They also explained that the small cyst in pancreas is most likely unrelated to this situation and most likely not concerning, but they went ahead and did a CT scan to make sure. We haven’t heard results yet.
Tonight, the rash is still very bothersome. As we pray that it will subside, we are reminded of Job’s words in the midst of his troubles, “I know that my Redeemer lives”.

He lives and He is with us.

Last Saturday Jonathan started week # 3 of his home infusion antibiotic treatment. That day, he also started running a low grade fever that spiked over the weekend and that we could not link to any other symptoms. On Monday we were scheduled to see Dr. Markert, his neurosurgeon to remove the last 6 stitches from the top of his head. As we were getting ready to go to the clinic we discovered Jonathan had developed a rash all over his upper body. In clinic, the doctors couldn’t decide if we were facing a delayed allergic reaction to the antibiotics or if there was an infection somewhere else in his body, possibly in or through his PICC line. They decided to leave his stitches and to do more blood tests including blood cultures in order to rule out an infection on his bloodstream.

On Tuesday morning we received a call from one of the Infectious Diseases doctors who instructed us to stop antibiotics all together and explained that as soon as they had lab results back they would tell us what to do. They suspected an allergic reaction to the antibiotic and set up a plan to change medications once they ruled out another infection. For three days we were literally on “stand by” waiting to hear from the doctors while dealing with Jonathan’s fever at home – that continued to spike making him feel really bad.

On Thursday we got a new call from the ID office telling us that Jonathan’s white blood cell count was really low, that they needed more blood work done, and that after that they would make a decision on the change of antibiotics. The problem was that they were planning to do that on Monday. That left us uneasy. We did not understand what all of this meant and we were concerned that Jonathan was going to be left without any treatment for over a week. Last night Jonathan’s fever spiked even higher that before and that made our neurosurgery nurse arrange for us to come to the clinic ASAP to do a CT scan, x-rays, and more blood work. So today we spent all afternoon at the clinic getting all of these tests done.

This morning the doctors feared that Jonathan could have a new abscess in his head or that he could have developed a blood infection. The CT scan showed that his head is doing well, and the preliminary blood cultures are negative for blood infection. But it is still not clear why he is having high fevers and why his white blood cell count is so low. They explained to us that sometimes antibiotics can deplete white blood cells, so that would be an option. At the same time, a very strong infection can also bring those levels very low. So making a decision on what to do is not easy. At the end, they decided that the safest route would be to start Jonathan on a new antibiotic today -while still in the clinic to observe any reaction, and to have yet more blood work done on Monday to see where his white blood cell count is by then.

We are back home, that is good. Still with fever and not knowing exactly what is going on, but trusting God’s power and His provision through the medical care we have available. Tonight we pray that the Lord will touch Jonathan’s body and that his white blood cell count will go up to where it needs to be. We pray that the new antibiotic will be effective to continue treating Jonathan’s bone flap infection and that it won’t further compromise his immune system. We pray for rest.

A good friend reminded us yesterday, “this is a bump in the road of the bump in the road”. It certainly feels that way. May God help us to be focused on the main thing and continue to trust in Him. May He receive the glory for the salvation He has already given us, the future glory that awaits, and yes, even the bumpy road in which we are today.

Thank you for walking with us.

It is now been just over four months since we began this journey with a brain tumor. The road God has led us on has taken us through mountains and valleys, sections of clear straight highway and down uncertain narrow footpaths.
Through it all, God has walked with us, giving us joy and strength, comfort and peace. When Jesus walks with us, then we can be free not to worry about what may lie ahead or the dangers that may be to our right of left, but instead we simply must listen to His voice as He leads us forward step by step. Throughout the Bible, we see God present with His people. His presence with us has meant that we never have to walk this road alone.

One of God’s primary provisions for us, and evidence of his presence with us, has been the community found in other followers of Christ, especially in our church family. At some of the most difficult points over the past four months, God has guided His people to encourage us exactly when we need it most and directed others to pray for us in ways we did not even know we needed. In real tangible ways His people have come alongside us though providing meals, caring for our children, and countless other acts of kindness. We are so blessed to be a part of the body of Christ. In our culture we are told to always project strength and to trust the power of the individual. We could not have made it this far in our own strength or on our own without the support of others. Thank you for the role that each of you have had in our lives over the past several months.

We do not know what tomorrow may bring, but as best we can tell we are not at the middle or near the end of this journey with a brain tumor. Unless God intervenes in some miraculous way, we are still very much at the beginning of the journey. Our neurosurgeon described the infection that lead to the second surgery as a bump in the road. This bump includes months of antibiotic treatment and a third surgery to replace the portion of the skull they had to remove. All of this is in addition to monitoring for any growth or return of the tumor. Pray that God would completely remove both the infection and the tumor and restore me to health. If He chooses not to do this, pray that Christ would continue to provide us with his presence and strength. Either way, we will step forward in faith, trusting Christ to use this for our good and for His glory.

We have been extremely thankful to be back at home with the kids after a long hospital stay. Twice a day Karla gives me the antibiotic for the infection through the PICC line they installed in my arm. This takes about two hours each time, but once she gets me set up I can move around and work during that time. Karla has been a very quick study at providing for my medical care at home and interfacing with the doctors and nurses. I am incredibly thankful for her ongoing care for me and her willingness to learn and do whatever is needed. Daily I am thankful for God allowing me to have her by my side through this journey. We have been on this path of brain tumor, surgery, and infection for four months now. Pray that God would continue to sustain and strengthen both of us, just as He has been so faithful to do in the past.

Today we received the results from recent blood work that were a bit mixed in what they indicated. While some indicators are clearly normal, a few other indicators of infection continue to be concerning. Please pray that I would continue to respond well to the antibiotics, that God would remove all infection, and that I would recover quickly from the surgery.

We still face at least one more surgery to replace the bone flap that was removed from my skull and we will continue to monitor the site of the tumor over the next several months to make sure that there is no growth. Pray for endurance as we walk forward in faith along the road that God continues to place before us.

Thank you for your ongoing support and prayers,
Jonathan

We are finally going home today. The infectious disease doctors found that Jonathan’s infection was caused by staph. This is the most common bacteria responsible for post-surgical infections. For some reason it took a while for the bacteria to show up and that made our hospital stay very long. Thursday morning they found that there was a second bacteria growing, but at this point they think the same antibiotic (vancomycin) will take care of it. They will be able to tell us exactly what it is in about 2 weeks. Please pray that this second bacteria won’t add any complications to the treatment.

This morning Jonathan is having his last round of antibiotics at the hospital. The UAB pharmacy just brought all the prescriptions we will need for the next week and they will continue to supply on a weekly basis. In the evening we will have the visit of a home infusion agency that will set us up with the training necessary to continue the treatment at home.

This has certainly been a big bump on the road, but we want focus on the recovery ahead. God has provided everything we need that God has given with the timing of all of this.

Thank you so much for your prayers.

During their rounds yesterday morning, the doctors told us that Jonathan would probably be discharged during the day. We got our hopes high and packed our tooth brushes… Later, they came again to say “never mind” and explain to us that the laboratory is still trying to determine the right amount, frequency and length for Jonathan’s treatment. The way they determine that is mainly by cultures of infectious material, sensibility tests, and blood work. Results come with time, so there no much we can do but wait.

The good thing is that Jonathan is now down to only one of the three antibiotics he was originally on. His nausea has reduced -although it’s still there, and he is not on IV fluids anymore. That gives him more freedom of movement and he is up and walking four or five times a day making friends in the halls. Since he is missing part of his skull, he has to wear a helmet to protect his head. This morning, a lady asked us to come see her husband who’s also having to wear a helmet and is on his 9th surgery -some of them due to infection too. She wanted her husband to know he is not the only one having to wear a helmet. I hope he was encouraged. Everybody’s reality is difficult around here. It’s almost refreshing when a broken leg is all some of them are dealing with.

This morning’s doctor’s visit left us with no new information. We are all the mercy of laboratory findings. Today we complete a week here and it does feel like a long time, but honestly and as much as I desire to be home, I am thankful for how diligently the doctors are trying to figure out the best treatment for Jonathan. I don’t want to go home only to have to change treatments in a few days when doctors are not around anymore.

Please pray for clear results from cultures and sensibility tests. Continue to pray for healing and rest. Pray for our children and Jonathan’s mom as she so lovingly cares for them. And pray that I will be able to provide the care Jon will need at home during the next weeks.

Still in the hospital. Jonathan had a better night and more rest last night. Again, he felt queasy in the middle of the night but we had time to ask for anti-nausea medicine before he got really sick. The nurses have been very good and sensitive and they tried to interrupt his sleep as little as possible while still keeping on top of his vitals, drains, and medication schedule -which by the way is crazy, my count is 11 different medicines… some of them needed several times throughout the day… some needed to prevent what the others do to Jonathan’s body while fighting the infection.

We are still waiting for the results of the cultures to determine the specific antibiotic Jonathan will need for the next weeks. Yesterday, they finally put a catheter known as a PICC line. This little tube runs through a large vein in his arm and ends in a large blood vessel in his chest that is able to take the amounts of medication needed without getting irritated. No more pricking. That’s nice.

The doctors made their rounds this morning and said that we will need to wait one or two more days for the cultures to be completed. They cannot send us home without a clear treatment plan. So far, it seems there is one antibiotic that they will most likely rule out. As we understand, it is the one that is tougher on Jonathan’s stomach, so that’s good news too.

We may ask, why did all of this happen? I don’t think there’s a straight answer. One of the risks of brain surgery is actually infection. So this is a reminder that the risks are real and that, like the doctors told us at the beginning, being diagnosed with a brain tumor is a long journey due to all the different implications it has.

Despite it all God has shown His mercy and provision… This world is not perfect, but this world is not our home. So we will depend on His strength and we will continue to seek His presence and to glorify His name in all circumstances.

Thank you for your prayers and notes. We again feel so wrapped by you love at this time.

Synopsis of Last Three Months
1/31 – seizure and discovery of brain tumor. Medication controls seizures but has negative side effects.
3/22 – Resection surgery with removal of 98 % of the tumor. Pathology shows an Astrocytoma grade 2. Continue to recover from surgery. Trying to return work and normal life. Back to 70-80 % of regular strength.
5/1 – Increase swelling in and around skull flap.
5/12 – CT scan and blood work reveal strong possibility of infection. Drainage from scar confirms.
5/13 – Surgery to reopen and clean out the infected area. Part of the skull flap left out. Multiple antibiotics used to combat infection. Pain, vomiting, discomfort: all are part of the process. Asking God to remove all infection and return to good health.
Conclusion
Although this is not the journey that I would have chosen, God remains faithful to provide His presence, His peace, and His strength in the midst of this life’s difficulties. My need for Him is in full display. His comfort is all-sufficient.
Jonathan B.
5/16/2011

Well, we are back in the 8th floor of the UAB North Pavillion. This was certainly very unexpected, but we trust God was not caught by surprise.
Jonathan’s first hours in the NICU after surgery were hard. Pain and discomfort were very present. His arms have being poked numerous times between continual blood work and IVs, and each time it seems to get more difficult because the antibiotics are hard on his veins.
He was moved into a room in the evening and he did a wonderful job walking to it instead of using a wheel chair. He had to wear a helmet to protect his head… yes, helmet and gown just looked fabulous together 🙂
His first hours in the room went well. It seems like the nurses finally found the best pain medication for him, so thank God, pain has been manageable.
Since midnight he has had a rougher time though. He had an allergic reaction to one of the three antibiotics he is taking and another blown IV. He also had nausea and vomit to add to the fun, so rest has not quite happened yet.
We are waiting for cultures to reveal what kind of bacteria we are dealing with and that will inform what specific antibiotic he needs to be on. Until then he has to be covered with three very strong ones… but this is hard on his body.
Please pray that we will have word from the lab soon and that in the meantime he won’t have more allergic reactions or infiltrated IVs.

I’ll try to keep this blog updated as much as I can.
May the Lord be honored by His children this Sunday… even those in the hospital.

So thankful for your support and prayers.

Karla

Posted by Chris Kinsley on behalf of Jonathan and Karla.

Jonathan is out of surgery.  The surgeons did remove his skull flap successfully.  They will leave that portion of the skull off for the next 6 months, and Jonathan will be on heavy antibiotics for the next 6 weeks.  The doctor was pleased with the procedure and was confident it was the right thing to do.  They will replace the skull flap if they are able to get rid of the infection in the bone.  If not they will place a synthetic skull piece to replace it.  He will be in the hospital for 5 days at a minimum in order to treat the infection.  Jonathan is in recovery in ICU and Karla is waiting to see him.  Please continue to pray for him as he recovers and for the continued treatment of the infection.

We will update you as we know more.