Going home....JUST KIDDING!

We are going home! JUST KIDDING says Alexander!

So I haven't updated the blog since Friday because there really wasn't much to update. The only news over the weekend was that Alexander was being weened from oxygen and that keeping a toddler happy while in isolation is rough.

Yesterday we were told that Alexander would probably be able to go home on Monday as the weening process was going well. This morning Alexander was keeping his oxygen saturations in the appropriate levels but seemed tired. So tired, that when 6 am vitals came around, he stayed asleep while his blood pressure was being taken (this NEVER happens and in fact it the opposite: he screams!). Once he was awake, I attempted to give him breakfast and he shook his head no. Shortly after that he got sick. After resting in his bed watching his favorite show, Alexander got sick again. By this time, myself and the nurse knew he wasn't feeling very well. Throughout the morning, I slowly gave him more of his breakfast and he ate it. He then started playing with his toys and we all counted with the plan of going home today.  Around 11 am, he took his nap. Once he woke up from his nap, he continued to act very tired and after nodding off, he got sick twice. At this point, it was decided that he would not be discharged today. Something I didn't want to hear but also did NOT feel comfortable going home with him, knowing that something was going on with him. Any x-ray was taken and since then, he's gotten sick two more times. An IV was put back on him, to pump fluids in and now the talk of having to put oxygen back on him is occurring because as he sleeps, he is not staying in the appropriate (75-85 levels) . We are all trying to find out if he has a GI infection, or if this nausea and vomitting is still related to him getting over RSV. We pray that the night isn't a hard one for us all, that  questions get answered soon and that we can go home soon!

Hoping for a little less of this and a little less of that

Alexander's night last night was a long one, consisting of him coughing almost every hour and requiring an increase to 1 liter of oxygen to keep his sats within the acceptable level. This morning Alexander was struggling to breath and coughing quite a bit that the nurses increased his oxygen to 2.5 liters!

His cough is no longer congested and now a dry cough with the constant tickle in his throat is present. His fever seems to be hanging out as well. I don't believe I mentioned before but in order for Alexander to be discharged, he needs to be weened from the oxygen, tolerate the foods he eats, and stay hydrated. None of these have been that great, so it's looking like he will be here through the weekend. For any of you that want to stop by and visit, I'd advise you to not if you have a kiddo. As much as we love having visitors, we would hate to pass the virus on to you and your kiddo ends up with it. RSV is a nasty virus and I've learned that adults can get it and not know it. The virus isn't as harsh as how the virus attacks kids. In fact, it looks like a regular cough.

Even though Alexander is requiring more oxygen, he's still the same kiddo wanting to get up and go. However, once he does start moving, he starts coughing and struggling to breath. Today consisted of keeping him happy, which was difficult at times when you're stuck in the same room all day (Alexander is in isolation) but we did okay. :) Luckily a few activities were brought to us to help me keep him happy.

Alexander seems to be feeling better and we are hoping the night goes better too. We are really hoping that tomorrow will consist of less coughing, no more fevers, a good appetite and that Alexander can begin to ween down on the oxygen. Thanks for following along our journey. We are really hoping the rest of 2015 is hospital-stay free!

We left and then we came back

So for the past week I had been telling myself that I needed to update the blog.  I have now found the time to do so...

Alexander was discharged last Wednesday. He seemed to be doing well, just a bit sore. Over the next few days of being home, Alexander began to have off and on fevers ranging from 99.1-100.3, with occasional higher fevers (102.4). Once the weekend came, Alexander began coughing and his cough soon became congested. By Sunday afternoon, he was not our happy Superman. So Monday morning, I took him to his Pediatrican who seemed very worried after hearing Alexander's cough and had him swabbed for RSV and the Flu. Both tests came back negative. She still wasn't convinced and told us to keep a close eye on him and bring him back the next day. The next day, his cough and fevers were still present and so his peditriacn requested a chest x-ray, to rule out pneumonia. This also came back negative. Still not trusting Alexander, she suggested we take him to see his cardiologist and to have oxygen ready if needed. Tuesday night Alexander woke up coughing and crying. After an hour of crying and a breathing treatment, Alexander relaxed and went to sleep. Yesterday (1 week later from being discharged), we took a trip to CHLA to see his cardiologist. Tests were run and his new pacemaker was interrogated, with everything looking fantastic! No infection at the site of his pacemaker, his heart looked great, his white blood cell count was normal (no bacteria infections present), and his oxygen saturation were acceptable (77 range). By 8 pm last night, Alexander was irritable and coughing. After his bath and breathing treatment, he quickly feel asleep. By 9 pm, I hooked Alexander up to his pulse ox machine to double check that all looked good (something I have been doing regularly), and bam! alarms were going off because his oxygen saturations were 55! I thought, "what the heck? that can't be right". Wes quickly came in to see what was going on and thought the same thing because he had normal coloring, no hint of blue. We tried with two other senser cables to see if in fact, that was the reading, and it was! So we put oxygen on him and called his cardiologist. She was shocked as much as we were and suggested that we take him to CHLA to make sure. We spent 4 hours in the ER with Alexander while test were run and then he was admitted to CV Acute. This morning more cultures were taken and and learned that he DOES have RSV. :( He is currently on 1/2 a liter of oxygen to keep his sats in the accpetable range (75-85) and the plan is to begin to ween him from the oxygen. He also had a seizure this morning :( but the doctors aren't concerned because it is common for kiddos/people with epilepsy to have a seizure when sick. I didn't like hearing that but I'm okay with the fact that at least it is common when epileptic patients get sick. What's one more thing to worry about, right!? ugh!

So for now we watch and wait. We watch to make sure his fevers don't continue to climb and wait for them to stop occurring. We watch for an epileptic episodes and watch that his oxygen saturations don't drop. We aren't sure how long he will be in the hospital but we are hoping and praying it isn't very long and he can start feeling like himself again. Thanks for your positive thoughts and prayers and if you or your kiddo is sick, PLEASE keep them home. You just don't know who will be affected by it or how it will affect them. <3

Outpatient Status Not Likely.

Alexander's surgery today was short and sweet! The surgical team took him back at 7:30 this morning and by 8:30 he was done and back in recovery. The pacemaker was the only needed thing they needed to replace. The leads didn't need to be messed with-Yay!  Everything was looking great to go home for about 2 hours. Then, the sight of going home today began to look distant. As Alexander came out of anesthesia and the pain killers began to wear off, Alexander started to get irritable, resulting in him holding his breath, which resulted in his oxygen level to drop. This happened all day long! By 2 pm it was decided that Alexander would be admitted to CV Acute for observation. After 7 hours in recovery (mostly hanging out waiting to be transferred), Alexander was taken to the CV Acute floor. He has started to feel slightly better this evening and has been sleeping since 7 pm. Wes and I hope that he sleeps through the night and feels almost 100% himself tomorrow. Praying tomorrow is better than today, that the 3 of us get some sleep, and that we get to go home tomorrow! Thanks for the positive thoughts and prayers! <3

Tomorrow is the Day!

Tomorrow is the day. Tomorrow Alexander goes in for yet, another surgery. This time around he will be getting a new pacemaker and we hope that is all. This procedure is considered outpatient and should only last an hour. It will consist of  small incision on is abdomen. Worst case scenario, the surgeons discover that Alexander needs new leads as well. If this is discovered, that means they will have to open up his chest to repair the leads, which means a longer stay in the hospital and a longer recovery.


So the plan is to be at CHLA tomorrow morning at 6 am, with surgery around 8 am. If all goes well with the procedure and the recovery, we will be home by evening! We are praying this is the case and there are no bumps along the way. Thanks for keeping our Superman in your thoughts and prayers! Please keep them coming for his big day tomorrow! <3