Early November: Don start with a colitis flare. He visits his gastroenterologist who ups several medications and checks several tests to rule out infection all of which were negative. We start with our watch and wait to see if the meds will work as an outpatient.
Just before Thanksgiving: Alex develops his 2nd ear infection - this time with a 104.5 degree fever. He fails oral antibiotics and requires a dose of rocephin (injectible antibiotic - one in each leg) just as he did for his first ear infection a few weeks prior.
First week of December: Alex develops his 3rd ear infection on the heels of his 2nd. This time he also has very high fevers. This time it takes 3 days of rocephin to clear (for a total of 6 shots in 3 days.. poor baby!). On the third day of Rocephin we get in with the ENT doctor to discuss ear tubes and we all agree these need to be done for both frequent resistant infections as well as some mild hearing loss due to the fluid buildup behind the ears. He can schedule him to have this done the following Monday.
Monday December 12th: Alex goes under anesthesia to get his tubes placed and to drain the fluid from both ears. Overall he does really well and only really takes the morning to get over his anesthesia. The ears end up draining for 2 weeks (which is longer than typical) and he sees the ENT again who states all looks good. Alex's hearing was tested again at the ENT appointment and it has already improved.
December 19th: Steph's 30th birthday
December 25th: Christmas Day - Alex and Donny have a blast and we spend the remainder of the weekend in Lenoir, NC with Steph's family. On the way home to Greensboro from Lenoir from Christmas Donny has 6 nosebleeds in one day (he's had trouble with frequent night time nose bleeds and occasional daytime nose bleeds for some time but this is the worst by far). At least 2 of the nose bleeds take more than 5 and one nearly 15 minutes to stop.
December 27th: Don is admitted to the hospital as his flare has gotten significantly worse and isn't being controlled with oral medications thus needing IV medications (see blog posts). Unfortunately we have to cancel our planned trip to NJ for the New Years Holiday (but thankfully Steph had a few days off because of the planned vacation to take care of the kids while Don is in the hospital)
December 28th: Don's 32nd birthday. - Don still in the hospital
December 29th: Donny has an ENT appointment - at least one large blood vessel that was close to the surface of the nose passage is found and is the likely source of his nosebleeds. To treat this they can do a procedure called cautery or "burning" of the vessel to make it close off. This requires anesthesia to be done.
December 30th: Don and Steph's 6th wedding anniversary - Don still hospitalized
January 1st: New Years Day. - Don still hospitalized
January 3rd: Don comes home after receiving a new medication called Remicade to try to treat his flare. He still isn't feeling great and still having copious bloody bowel movements - at one point 23 BMs in 19 hours. There isn't anything more in the IV they can give him though and thankfully he is doing a good job keeping up with fluids, etc to keep him hydrated and not needing an IV for hydration so they decide to continue therapy as an outpatient for now and keep a close eye on his symptoms.
January 7th: Alex develops a 102.8 fever - Steph thinks it's probably a virus and in just 48 hours his fever has gone down significantly and Alex is acting normally so he can go back to daycare after missing 2 days.
January 13th: Donny has his procedure under anesthesia. While under anesthesia they find that he actually has a large blood vessel on both sides of his nose so both are cauterized. Donny wakes up and does really well. All day he is hilarious - like he's had funny brownies or something - he's talkative, goofy and got the munchies!
January 14th: Donny and Alex's Birthday Party. Both boys are acting well overall, and a good time was had by all at the party but by the evening Alex starts coughing
January 15th: Alex spikes a fever and starts coughing harder and starting to have some trouble breathing. Fever gets to upper 101s this day. Steph calls one of her doctor friends and gets Alex started on Azithromycin (the same medication as a Zpac)as she listened to his lungs and they sounded like there could be infection in them.
January 16th: Alex is acting more puny and fever is now in the 102s. One of Steph's Colleagues graciously states she will see Alex to see if he needs more/different antibiotics or steroids or both. In clinic his fever gets to the highest it has been: 102.8 and he is having more trouble breathing. His O2 sats in the office are in the mid 80s and Alex is sent to the ER. In the ER he gets a chest xray and albuterol nebulizer treatment. Chest xray reveals possible very early pneumonia in the right middle lobe of his lung. He is started on oral antibiotics and sent home as he is able to keep his Oxygen saturation (O2 sats) in the low to mid 90s. He was given a prescription to continue Albuterol nebulizer treatments at home every 4 hours.
January 17th: Alex has a decent morning but still doesn't feel well. Since his ER visit he has been getting nebulized treatments every 4 hours as well as a 2nd antibiotic. He continues to work pretty hard to breathe. By evening despite having 2 antibiotics his fever spikes to 103.8 and he vomits a large amount. Steph takes him back to the ER where his sats are again in the 80s and his fever is very high still. They decide to admit him for IV antibiotics, fluids, steroids and to rule out some infections.
January 18th: Despite getting these medications he continues to work hard to breathe and he is placed on oxygen to keep his O2 sats in the low 90s. Fevers have gone down thankfully. Unfortunately though Alex acts pretty pitiful all day. Alex vomits again x2. Don gets his 2nd dose of his special IV medication down stairs at the hospital this morning and this pretty much wipes him out for the rest of the day.
January 19th: O2 sat seem to start improving and Alex seems to have a little more energy. They are able to during the day wean him off of his oxygen so that he is just on room air. His sats are in the low to mid 90s but no longer in the 80s.
And this is where we stand with Alex still in the hospital - We will have to see how the night goes and how his breathing is doing before we will know when he will come home. If he has a good night, Alex may get to come home on January 20th but only time will tell. Thankfully Don seems to be doing better with his bowels (though not 100% but under 7 BM/day and he's had blood only once in his loose stools in 3 days). Donny also has been doing great since his procedure - no more significant nosebleeds! And while as Alex got sick Steph developed a cold it really is a blessing this is the first time she has gotten sick throughout this.
Whew! It's been the month from hell but hopefully things will start turning around soon. We aren't looking forward to the hospital bills coming up but are thankful for the doctors, nurses and staff that have taken excellent care of everyone and for the prayers of so many family, friends and even strangers - they are making a difference. We appreciate each and every one of you for reaching out to us during these difficult times and providing us with support in so many ways - physically, mentally, emotionally, spiritually. We don't understand why our little family is going through this test but we are sure it's in God's plan somehow. We will keep things updated here and/or on facebook about how Alex is doing over the next few days. A special thank you goes out to Steph's Mom Susan Morgan for taking some time off of work to help us with the boys as all of this has been going on - we can never thank you enough for all of your help and love. Keep the prayers coming... God is good and he continues to heal in his time.
Here are some pics of Alex while he was in the hospital:
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