Thank you for every ones prayers for Tysen!! For those whom do not know, Tysen was admitted into the hospital with Pneumonia! Here is the whole story....
Tysen, who has moderate to severe asthma, came home with a terrible cough about 3 weeks ago. He had no other signs of sickness so I figured this was an asthma flair up. So like usual we up-ed his dosing of inhaled steroids and started doing his relief inhaler during lunch at school and twice at home. It proceeded to get worse. Nothing would help it. I had Matt pick up a cough suppressant with chest congestion relief for him. It still didn't get better. We are now on about day 5. I called his doctor and left a message for a returned call. I never received one due to an office error and of course it was Friday!!! SO...we dealt with it all weekend. On Saturday night, just out of curiosity, I checked the dose counter on his meds and found that his inhaled steroid was COMPLETELY OUT! I did not know how long it had been out. I then figured the cough was due to not being on his meds. I refilled the script and with in 2 days the cough was 50% better. I assumed we were just not paying attention and this was his asthma.
Well was I wrong!!!! The following Friday he came home from school with a pretty bad headache. He had his Valentine's Day party earlier, so I thought this was just a sugar high. I gave him some Motrin and with in 35 minutes, he stated he felt better. Later that night, after his shower, he was SHIVERING!!! He felt cool but I checked his temp anyway. Come to find out it was 102.3. (By this time, the Motrin given earlier had worn off about 1 hour ago). All of the sudden, he started crying, "I'm gunna throw up, I'm gunna throw up!!!!!!" I took him in the bath room and there we sat for about 20 minutes toying with whether or not he was actually going to do it. It never happened. Because he felt that way, I didn't know how to get his temp down which kept raising. I ran to Walgreen's and got the Tylenol suppositories. By the time I returned he still haven't thrown up so I gave him Motrin. I alternated Tylenol and Motrin for the next day (Saturday) and night and figured he would not need it in the morning.
Sunday morning he woke up with all meds out of his system with no fever. With in a hour, he got a 102 fever with extreme abdominal pain. I then took him into the ER. They started an IV, ran some labs and did a abdominal cat-scan. Nothing showed up on any of those tests so after 8 hours, we were discharged with a "viral" stomach flu. They stated he needed to be on a clear liquid diet for the next 12 hours and if he was still not better, I need to bring him back in. I made sure to tell Ty that now he got a taste of what Trinity has to go through. (All the nurses and doctors and IV's and blood draws, etc.) He did not think that was funny!
Monday morning, he woke up with severe stomach pain. Hunched over and crying!!!! We went back to the ER. Now I thought we were playing with appendicitis. Another IV was started and after a throat culture (which he hates more than ANYTHING in the WORLD!!!) he cried out with extreme L side chest pain!!! I have never seen him in so much pain. I am already weak as it is with seeing Trinity in pain and I can do nothing for her and now Ty...I have to say I broke down too. BUT it was only when 30 minutes had gone by and he looks up at me, in severe pain, holding his L rib cage and says, "Can we just pray to God right now...I need His help...He can make this pain go away...can we just pray right now...?!?!?" I LOST IT!!!! We prayed and cried together for about 5 minutes. Looking back at it now, it was one of the sweetest things he has every said.
The doctor finally came in to re-assess him and ordered a chest xray. He then looked at me with this look and says, "Are you Italian?". I answered, "yes." He then turned toward the nurse and said he wanted some kind of smear done of his blood work. I asked him what that was for. He rambled off about this BLOOD DISORDER!!! Something like Sickle Cell Anemia but affecting Italians. I about lost it!!!! As if it isn't enough that Trinity has OI, the possibility that Tysen has something extremely wrong as well was DEVASTATING. I honestly started to shake and pace the room as Tysen continued to cry with extreme chest pain. After all said and done and about an hour with this chest pain, the doctor comes back in and says, "He has Pneumonia. It is in a really weird place in his lung. Right where he is pointing to on his L side of his chest in the middle of the L lobe. I am a little concerned that due to the oddness in where it is, that it could possibly be MRSA. An antibiotic resistant Staph infection. I am putting him on three different antibiotics and admitting him." Honestly, I was grateful to hear that. I was so glad that it wasn't that blood disorder. But then the reality set in about the Pneumonia. Who will stay with him? How will Trinity be affected? Should I be concerned about her terrible cough that sounds JUST LIKE TY's? Will he pull through and not be in the hospital long? So many questions, not very many answers.
This whole time we were in the ER, both days, Matt had Trinity. But we realized Sunday that she would NOT take a bottle anymore. She refused. He ended up bring her to me a couple of time through out the whole ordeal just to nurse her. I felt like I hadn't seen her in days!!! Well, Matt ended up staying at the hospital with Ty the first night. I was a little scared about that. (Who am I kidding...A LOT!) But I know with guidance, Matt could handle it! I was a wreck at home that night. I have never been away from Tysen when he was sick. Tysen has never been admitted to the hospital either. And with Trini being the new baby, this was all new territory for me. Tysen has been my numero uno for so many years. It was different.
Thank the Man above, Tysen was improving with flying colors!!!! He was released Tuesday night and sent home on two different antibiotics. Still not eating real well but glad to be home. I also ended up taking Trini in to get on an antibiotic to be proactive with this terrible cough just getting worse and worse. I am glad I did! I have an appointment tomorrow to get my throat looked at as it has been 4 weeks with a sore throat and a terrible taste in my mouth. So we are all on the mend. For those whom I told, Matt's surgery was cancelled due to all these sicknesses. It has been scheduled tentatively for the second week in March. I will keep everyone posted.
As of today, Thursday, I have to say Tysen is back to himself. He is joking around and being his funny little self. I must say he has been missed. Thank you for those that have prayed for my family. I know He listens intently when you do!!! It shows every single day! I thank Him so much for improving Tysen's sickness so fast. God is GOOD!!!!
Friday, February 20, 2009
Thursday, February 12, 2009
Clinic in Omaha
Our Fourth trip to Omaha was, what is the word, different??? The way down (over) was almost unbearable. Trinity was not comfortable and did not want to be in the car. She went 8 hours with out food or breast milk because she just simply did not want it. But she was upset that she was so hungry as well. We ended up stopping early just to get her out of the car. That meant we had some making up to do the next day! Like an extra 3 hours!!
Anyway, the next day was better but LONG!! We ended up not getting to Omaha until around 11 pm our time...well past the kid's bed times. Boy, we were all hungry and ready for bed!! We were due in the following day for Trinity's infusion at noon. Her infusion went well. On the other hand, Trinity was ABSOLUTELY over it!!! Every time someone stepped into her room that she didn't know, she cried and tried to jump out of my arms as if to run away. I felt terrible! I ended up crying with her. It is just so hard to watch your child go through something and experience pain and you can do NOTHING to help! I have to say that is one of the hardest parts about OI. We also got a DEXA scan (bone density scan) while our infusion was running. Which saves time. Trinity actually held still even though the day had been hard. I was impressed!
We got through the infusion...it didn't seem like it would ever end but it did. We ended up finally getting discharged around 9 p.m. our time. Again, past the kid's bed times. We found our selves in the same position as the night before. Luckily, dinner was provided by the Rainbow House, the place where we stay while in Omaha, which someone donated the food and time to cook it. It was a good ending to a stressful day. We were due back in to the hospital at 8 a.m. for clinic. (Clinic is where we get to see all her doctors back to back.)
At clinic we receive the bone density scan results which were extremely poor! Her Orthopedic surgeon also stated that her problems are going to lie within her lower legs bones. They look like C's on x-ray!!! Her femurs have seemed to straighten a little with growth so that is a little good news. We are due back in for Clinic in June/July to reassess her bone density and look into planning her rodding surgery. We may even have company! I have been notified recently that more prayers have been answered. Our good friends, the Busby's, are going to be traveling to Omaha!!! Thank you God!!!! And possibly around the same time we are going! We are truly excited!!!
We ended up getting done with Clinic at 1 pm our time and could have started back home. We decided we were EXHAUSTED and we would rest up one more night and travel out first thing in the morning. The way back was rough as well. We hit a heavy snow storm by evening on day 1 of traveling home. The storm last all night and we woke up to a couple of inches. We were hoping that the roads would be somewhat cleared because the majority of the snow came early that night. But we didn't get that lucky. We ended up following this storm ALL THE WAY HOME!!!! And as soon as we hit Michigan, the storm, of course, was worse. We finally ended up getting home safe and sound which I am very appreciative for. That is all I can really ask after a trip like this! All in all, the trip was very informative. We start home infusion in early March so we can cut back on the trips to Omaha. We are still due in every 6 months which is a lot better than 4 times in 6 months. I will keep everyone posted!
Anyway, the next day was better but LONG!! We ended up not getting to Omaha until around 11 pm our time...well past the kid's bed times. Boy, we were all hungry and ready for bed!! We were due in the following day for Trinity's infusion at noon. Her infusion went well. On the other hand, Trinity was ABSOLUTELY over it!!! Every time someone stepped into her room that she didn't know, she cried and tried to jump out of my arms as if to run away. I felt terrible! I ended up crying with her. It is just so hard to watch your child go through something and experience pain and you can do NOTHING to help! I have to say that is one of the hardest parts about OI. We also got a DEXA scan (bone density scan) while our infusion was running. Which saves time. Trinity actually held still even though the day had been hard. I was impressed!
We got through the infusion...it didn't seem like it would ever end but it did. We ended up finally getting discharged around 9 p.m. our time. Again, past the kid's bed times. We found our selves in the same position as the night before. Luckily, dinner was provided by the Rainbow House, the place where we stay while in Omaha, which someone donated the food and time to cook it. It was a good ending to a stressful day. We were due back in to the hospital at 8 a.m. for clinic. (Clinic is where we get to see all her doctors back to back.)
At clinic we receive the bone density scan results which were extremely poor! Her Orthopedic surgeon also stated that her problems are going to lie within her lower legs bones. They look like C's on x-ray!!! Her femurs have seemed to straighten a little with growth so that is a little good news. We are due back in for Clinic in June/July to reassess her bone density and look into planning her rodding surgery. We may even have company! I have been notified recently that more prayers have been answered. Our good friends, the Busby's, are going to be traveling to Omaha!!! Thank you God!!!! And possibly around the same time we are going! We are truly excited!!!
We ended up getting done with Clinic at 1 pm our time and could have started back home. We decided we were EXHAUSTED and we would rest up one more night and travel out first thing in the morning. The way back was rough as well. We hit a heavy snow storm by evening on day 1 of traveling home. The storm last all night and we woke up to a couple of inches. We were hoping that the roads would be somewhat cleared because the majority of the snow came early that night. But we didn't get that lucky. We ended up following this storm ALL THE WAY HOME!!!! And as soon as we hit Michigan, the storm, of course, was worse. We finally ended up getting home safe and sound which I am very appreciative for. That is all I can really ask after a trip like this! All in all, the trip was very informative. We start home infusion in early March so we can cut back on the trips to Omaha. We are still due in every 6 months which is a lot better than 4 times in 6 months. I will keep everyone posted!
Friends in different places
I love the fact that friends come from so many different directions. You end up meeting the BEST people in unforeseen circumstances. I can not begin to tell you about the friends that I have acquired through this rough and wonderful OI journey. There is one friend in particular that I have bonded with and although she is hundreds of miles away, she understand everything that I go through on a daily basis. She has impacted my life and I just adore her. Her daughter has a special place in my heart and I feel as though I have known her since birth. Like...Family. This is just a shout out to my dear friend. After reading your blog tonight, I am truly touched. The love comes from both sides of the table.
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