Thursday, September 29, 2011

David's Infection Ends

Thanks to those of you who prayed so fervently for David and for your kind words.  I always take the time to read such comments to David so that he knows how loved he is and how many people are praying for him.

This latest infection was pretty intense.  David had high fevers for 5 days total making it seem as if the fevers were never going to go away to him and to us.  It was stressful for me to stay on top of the Tylenol/ibuprofen cycle to maintain a full-strength level of an anti-pyrectic in David's body at all time because even with that, David's fevers soared to above 103, particularly in the evenings. David would wake up in the middle of the night burning up with a fever waking me up 1-2 times nightly making it so hard for me to function not to mention allow my body to fight the cold I had been fighting since last Monday.

My heart nearly broke when David asked me by the 4th night if he was going to die.  I reassured him that God was in control and that his fevers were being controlled and that he would not die from his fevers at this point.  David then asked why God wasn't answering his prayers since each day he was praying and asking God to take away his fevers. I then reminded him that sometimes God answers, "Wait."  He seemed content with our discussion.  When he woke up on the 6th day completely fever free and having had slept through the entire night, he was quick to tell me that now God answered his prayers, "Yes!"  David's lung function has improved and he has been able to be weaned from his twice a day nebulizer treatments as well.  After missing school Friday and Monday, David had a lot of make-up work to do.  He has had such a good spirit about working so faithfully on his class work and is almost completely finished.  Thankfully, his teacher gave him a few days to complete it.

This afternoon, David will be getting his 6th antibody blood transfusion, the last of the twice/week transfusions.  Next week, he starts getting the transfusions once a week from here on out unless his body starts to kick into gear and starts producing a sufficient amount of antibodies on its own. 

After next week, his body should be at a therapeutic antibody level and capable of fighting off infection, so time will tell whether these transfusions are working or not.  Shortly after that, he will be weaned off his prophylactic antibiotic to see if the transfusions are sufficient.

David loves to dress up and was excited to get this Captain America costume for his birthday as well as the helmet and shield.  This picture was taken 4 days before his body came down with the infection
Thanks for your continued prayers for our precious little boy!

Friday, September 23, 2011

Quick David Update

The doctor thinks David has a viral infection, but given David's high fevers and history of bacterial infections that are difficult to treat, he doesn't want to take any chances, so he's doubled the dose of antibiotics that David has been taking prophylactically just in case. Also, David's lung function is decreased, so to prevent things from getting worse if the infection moves to his airways, he wants him to have nebulizer treatments twice a day until his infection clears up. Today, I had a hard time controlling David's fevers and they got really high, but I was thankful his fever started to drop as I got him tucked into bed for the night.

Thanks for your continued prayers.  We are hoping David has a better night tonight.  Last night was rough with two intense night terrors and then a raging fever because the ibuprofen and Tylenol had worn off.  I am physically exhausted and have been fighting a cold since Monday that has now moved to my lungs.  Tim and Joshua continue to be healthy, but Tim is getting just as worn down as I am.

Thursday, September 22, 2011

David has a new infection

This afternoon, David came down with a high fever once again.  He has not had an active infection since the beginning of August making it the longest stretch without infection this year.  However, it is discouraging that he should get an infection considering that he is still on his prophylactic antibiotic and has had 3 antibody blood transfusions.  However, I must be patient since David's doctor did say it would take the full 3 weeks of having transfusions twice a week to build up his antibody level which is why he wanted David to continue on the prophylactic antibiotic for 1 month after the transfusions started.

The good news is that David already has a follow-up appointment scheduled for tomorrow with his immune specialist, so I don't need to worry about getting a last-minute appointment for him.  David just had his 4th transfusion tonight and did well with the transfusion despite burning up with a fever.

Please be in prayer that David will get better quickly and for wisdom for his doctor in treating the infection properly.  Thanks so much for bringing our little boy before God's throne of grace!
David doting on his cousin Grace when she was about 24 hours old

Wednesday, September 21, 2011

And the blood transfusions continue

David continues to do well with the blood transfusions.  By his second transfusion, I was declared "independent" in my ability to administer the transfusion by myself, so I have been on my own since then.  Even with all of my nursing training and my experiences of sticking needles into people, I was never prepared for having to stick a needle into my own child.  The first time I had to do it, I was sick to my stomach.  It was also troubling to then sit down next to my child to cuddle with him as blood components from 70+ donors entered his little body.  I'm hoping that as time goes on, the experience will get a little bit easier for me.

David is the trooper in the whole experience.  Even through the torture of removing the sticky tape that holds the needle into place, David never complains.  He likes to help and be a part of the process in any way he can including turning the pump on to start the transfusion.  He even finds joy and humor out of the transfusion process as he shared with us this past Monday.  We have to rotate sites used for the transfusion, so we used his thigh as opposed to his abdomen on Monday evening.  When the transfusion is done, there is a large lump under the skin where the fluid takes time to be absorbed into the body.  Because the transfusion was done on David's leg, the lump was much more noticeable, and it was inches directly above his knee.  Once the needle was out and the injection site bandaged, David stood up, looked down at his leg and said, "Hey, look!  I've got 2 knees on my leg!"  Thinking he was disturbed by this discovery, I quickly reassured him that the swelling would go down overnight and be almost gone by the morning.  He then responded, "Oh man!  I want it to stay so I can make people laugh!"

It is so evident that the joy of the Lord is David's strength, even though David is only 5 years old.  His faith is so strong and his trust in God so sincere.  I pray that God would help me to find such strength in my joy of the Lord as well!

Monday, September 12, 2011

David's Transfusion Update

David's 1st antibody blood transfusion went smoothly this evening. It took a little over an hour to infuse, and David did great - no adverse reactions or side effects! We are praising the Lord that it went so smoothly.

We are also grateful for all of the prayers of friends and families and the encouraging notes and phone calls and for those who are providing meals for us as we get used to the whole transfusion process. This whole ordeal has not been easy for us. We are thankful that David is such a tough and brave kid. He definitely makes an unhappy situation a little easier to handle since he's such a trooper.

David's next transfusion will be on Thursday at 4 p.m.
David got to start his own transfusion

This is David's disgusted look at Daddy for taking pictures of him
David needs to have his temperature, blood pressure, and pulse monitored before, during, and after the transfusion.  Big brother Joshua is supervising the vital sign assessment
Chilling out on the couch during the transfusion watching a movie

Sunday, September 11, 2011

David's Health Update

Tomorrow is the first treatment for David's (just turned 5 yrs old on Sept. 9) new antibody treatment. He has been diagnosed with Primary Immune Deficiency Disease - more specifically IgG Immunodeficiency Disorder. Basically, his body does not produce the IgG antibodies like it should causing him to get many bacterial infections like sinus infections, ear infections, pneumonia, bronchitis, etc.  David has gone through extensive testing to try to find a cause for his immune deficiency, but there are not explanations at this point.  We have exhausted all of the resources available at this point, and the prophylactic antibiotic treatment he has had off and on for the past 2 years has proven ineffective since he continues to get infections while on the low doses of antibiotics.  Antibody blood transfusions is the last attempt to keep David healthy and off antibiotics to prevent any complications from long-term antibiotic use.

For the next 3 weeks we are going to have to give him 2 infusions a week to boost his immune system. Each infusion should last about an hour. I expect that the first one may take 2 hours from start to finish since the whole process will be so new to us. After the 3 weeks, David will receive the infusions weekly.  These infusions will continue indefinitely.  Since we don't have an explanation for his disorder, we don't know at this point, if he will need these transfusions for the rest of his life or just the next couple of years until his immune system starts functioning properly.

The transfusions will take place at our home. We will numb the area first. Then insert a subcutaneous needle which will be connected to a spring-loaded pump which will slowly push the antibodies over an hour's time.

He will be able to walk around and do normal activities while the transfusion takes place. Certainly, the typical light saber fights and wrestling matches in the living room will need to be postponed until the transfusion is complete.

We plan to make the first transfusion a family event and watch the movie "Cheaper By The Dozen" together. That should be fun.

Our church was graciously offered to provide us with meals as we adjust to the transfusions and a new weekly routine.  This will be a huge blessing to us as the last few weeks have been very overwhelming with preparing for the transfusions as well as keeping up with David's and Josh's issues. 

We both work all day tomorrow, so we will be arriving home in time to meet the nurse coming to our house at 5:00 tomorrow night to get things set up and start the transfusion.  We will learn how to do the whole process so that after this first week, we can do the transfusions ourselves.  It will be important to monitor David for any adverse reactions to the blood transfusions, so we will be taking his blood pressure, temperature, and pulse rate before, during, and after the transfusions.

Please pray with us that the transfusion will go smoothly with no adverse side effects and that these transfusions will allow David to stay healthy.

On an exciting note, God answered our prayers regarding David's hole in his heart!  We found out at the end of August that David will not need surgery to close up his hole.  We are thankful that God has chosen to spare David of yet one more surgery!